The Kickstarter for Science: Crowd Funding Stroke research with Tech Startup Collavidence

Stroke research is important, and there's not enough of it. Finding funding for small and medium sized projects is hard and getting wider awareness of them is even harder.

Collavidence seeks to change that. It's a Kickstarter-like platform for medical research, with a focus on stroke. Research teams Post research projects they are developing, and the public can choose to back them. They also participate in working groups with other experts to further refine the projects as the y pursue results.

Collavidence Chief Knowledge Office Dr. Aravind Ganesh joins us in this episode to talk about the platform and how democratizing the research funding process can help us all.

If you don't see the audio player below, visit the original post here, or look for the Strokecast in you podcast app.

Who is Dr. Aravind Ganesh?

Dr. Aravind Ganesh

Dr. Aravind Ganesh is a Vascular and Cognitive Neurologist. He completed his MD degree at the University of Calgary, followed by a DPhil in Clinical Neurosciences at the University of Oxford’s Centre for Prevention of Stroke and Dementia as a Rhodes scholar. He earned an Associate Fellowship from the United Kingdom’s Higher Education Academy through his teaching contributions at St John’s College (Oxford). He completed his neurology residency in Calgary, followed by a combined fellowship in stroke and cognitive neurology, funded by Alberta Innovates and the Canadian Institutes of Health Research.

Dr. Ganesh is a Fellow of the Canadian Stroke Consortium, and is actively involved in the development of best-practice guidelines for stroke and dementia care. His clinical research is focused on the natural history, prevention, and treatment of stroke and cognitive impairment. He is passionate about medical education, and serves on the editorial boards of Neurology, Neurology: Clinical Practice, and Stroke.

Should you back projects on Collavidence?

Maybe.

If you feel the project has value (or could have value), if it sounds like something you would like to support, if the team behind it seem credible, and if you can afford it, go for it! Contributions don't have to be large to be meaningful.

Be aware that it's always possible a project won't work out. There are lots of things that can go wrong, just like on other crowd funding platforms like Kickstarter and Go Fund Me. Exercise caution, like you do with other financial concerns.

If you want to have a concrete, direct impact on the research projects that can make life better for the stroke community, though, this might be a great way to do it.

Survey

Do you have thoughts about the Strokecast as a show? I want to hear about it. Please complete the listener survey at http://Strokecast.com/survey by March 31, 2023 to share your insight. I'd realy appreciate it.

Hack of the Week

This week's hack is more for researchers. That's to communicate with the community.

Often researchers may pursue projects to address what they see as problems in the stroke field, and that's great. It's also important, though, to listen to the people they want to help. Does a research project address a problem member of the survivor community actually care about solving?

A recurring theme from disability advocates is, "Nothing about us without us." That means before folks try to solve things for people with disabilities, they ought to actually communicate with people with disabilities. Don't try to solve a problem we don't have. And don't assume that solution created by just a group of abled folks will work or appeal to disabled folks.

Get the input of people with disabilities, and involve us in the process. Hire disabled consultants and architects on projects benefiting the disabled. And keep in mind that accessible design is good design.

Nothing about us without us.

Links

Where do we go from here?

• Check out some of the projects on Collavidence.com
• Share this episode with someone you know with this link: http://Strokecast.com/CrowdFundingResearch
• Complete the Strokecast listener survey at http://Strokecast.com/survey
• Don't get best…get better

More thoughts from Dr. Aravind Ganesh

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.

Listed in: Health

Listed in: Health

A Stroke Survivor Rediscovers all the Love in his Life

Success after stroke relies a lot on community. That's the case with today's guest Hub Miller. It's a story of knowing the FAST/BEFAST warning  signs of stroke because people talk about it. And it's a story of going through the worst moments of your life only to find yourself surrounded by loving family members and friends ready to share their strength with you.

You can listen to Hub's story here.

If you don't see the audio player, click here to listen to the conversation.

Who is Hub Miller?

Hub graduated from Mississippi State University with an MS in Agronomy in 2005. Since then, he's built a career in agricultural science, helping farmers produce bigger and more reliable crops.

Throughout the years, he's worked for an assortment of high tech agriculture companies, including, Dow Agrosciences, Corteva Agriscience, and Miller Entomological Service. In January of 2023, Hub took a new role as Vice President of Teleos Ag Solutions

In the Spring of 2021, Hub experienced a massive stroke brought on by high blood pressure. With the support of his family and friend, he's staged an amazing comeback.

You can connect with Hub via LinkedIn.

BE FAST

Speed is essential to reducing long-term disability after stroke. That's why it is so important to spot the signs. The BE FAST acronym can help you spot most stroke.

A person may be experiencing a stroke if they have:

B – a sudden loss of or change in balance

E – a sudden change in or loss of eyesight or vision

F – single side face droop

A – in ability to hold both arms up

S – loss of or change in speech, vocabulary, or ability to process language

T – Any of this means it is time to call an ambulance

BE FAST = Balance, Eyes, Face, Arms, Speech, Time to call an ambulance.

Down load this graphic and share it with everyone you know.

If you know people who speak Spanish, Dr. Remle Crowe helped develop an equivalent acronym in Spanish -- AHORA.

Let’s look at a translation.

High Blood Pressure

One of the main causes of stroke is high blood pressure. It's a topic we discuss a lot. It caused Hub's stroke, and it caused my stroke.

The American Heart Association recommends a blood pressure of 120/80. Inexpensive blood pressure monitors are available online. Check yours and speak with your doctor if you are not in the target range. 

I talked about how high blood pressure causes stroke with Neuro-interventionist and surgeon Dr. Nirav H. Shaw in this episode: https://strokecast.com/bloodpressure

If you don't have a home blood pressure meter, you should probably fix that. You can find them at your local pharmacy, Costco, large grocery store, and on Amazon at this link.*

Survey

Do you have thoughts about the Strokecast as a show? I want to hear about it. Please complete the listener survey at http://Strokecast.com/survey by March 31, 2023 to share your insight. I'd realy appreciate it.

Hack of the Week

Hub recommends yoga. Yoga has strong meditative qualities, and he has found it helpful in his recovery.

Yoga and meditation are themes that come up from lots of guests. Breathing, movement, stretches, and focusing the mind can help quite the noise of the outside world and service our bodies as the brain relearns how to operate our limbs.

Around the country and around the world, we are seeing more opportunities for disabled yoga or chair yoga. Practitioners are modifying positions and techniques so folks with physical limitations can still safely reap the benefits of this ancient tradition. Look around your community for disability-friendly yoga if the idea appeals to you.

And speaking of community, Hub has also found a lot of value in local stroke support groups. These groups give folks an opportunity to connect in person or online and share experiences, stories, and local resources to provide a much needed connection.

Links

[wptb id=4311]

Where do we go from here?

• Connect with Hub on LinkedIn here
• Share this episode with someone you know by giving them the link http://Strokecast.com/Hub
• Complete the Strokecast listener survey at http://Strokecast.com/Survey
• Don't get best…get better

More thoughts from Hub

Listed in: Health

Tone and Spasticity after Stroke with Dr. Wayne Feng

Stroke survivors with physical deficits have to fight to get the muscles moving again. They also have to fight to stop some muscles from moving.

Tone and spasticity are why our elbows curl, our fists squeeze tight, and our toes can curl under our feet so we crush our own toes as we walk.

Dr. Wayne Feng is an expert in tone and spasticity after stroke and he joins us this week to explain how we can address these challenges

If you don't see the audio player below, visit Strokecast.com/MSN/ToneBasics to listen to the conversation.

Who is Dr. Wayne Feng?

From Dr. Feng's Duke Profile:

I am the division chief for Stroke and Vascular Neurology in the Department of Neurology at Duke Health. I see stroke patient in the emergency department, inpatient service as well as in the outpatient clinic. I also treated post-stroke limb spasticity, a disabling complication after stroke. In addition to the patient care, I also run a brain modulation and stroke recovery lab at the Duke University campus to study stroke patients in my lab to develop new stroke recovery therapy. On my days off, my boys and I are big on fishing. I enjoy drinking and collecting tea. As a stroke doctor, I do not drink coffee at all (there is a reason for it). If you come to see, I will tell you.

Current Appointments and Affiliations:

• Professor of Neurology, Neurology, Stroke and Vascular Neurology 2019
• Chief of Stroke & Vascular Neurology in the Department of Neurology, Neurology, Stroke and Vascular Neurology 2019
• Professor of Biomedical Engineering, Biomedical Engineering 2022

[youtube https://www.youtube.com/watch?v=SGeOGI2bry4&w=560&h=315]

Tone and Spasticity Overview

Mos of our limbs move because of the interaction between two types of muscles -- extensors and flexors.

The flexors contract to bend a limb. The extensors contract to extend the limb. For example, the biceps are flexors. They pull our forearm up or into an angle. When people want to show off their arm muscle, the flex their arm -- they activate their flexors.

The triceps on the back of the upper arm are extensors. When they activate, they extend the arm -- they pull the arm straight.  When flexors contract extensors relax. When extensors contract, flexors relax. That's how we control our limbs.

After stroke, the flexors can activate on their own. And they can be, well, overenthusiastic, in those actions.

That happens because the default behavior of the flexors is to be active and curl up. When we talk about curling up into the fetal position, that's most of our flexors activating.

The reason we can go through life upright and with our limbs straight is that the cortex of the waking brain is constantly suppressing the normal contracting of the flexors.

After stroke impacting the motor cortex of the brain, the corticospinal tract is disconnected. With that disconnect, the brain can no longer suppress the flexors so they do what they do -- they contract and curl and cause all sorts of problems.

Peripheral vs Cortical Problems

Categorizing issues as cortical or peripheral is a fancy way of saying brain or limb.

A stroke is a cortical issue. The problem exists in the brain. That's where the disconnect happens.

A peripheral issue is when something goes wrong in the limb. Shoulder subluxation, for example, is peripheral issue.

Most PT and OT works with the limbs to treat the cortical issues. Tone and spasticity are caused by cortical issues.

The long-term problems caused by tone and spasticity are peripheral issues.

One of those peripheral issues is contracture. When tone and spasticity is severe and long term, the muscles, tendons, ligaments, and other soft tissue can actually shrink in the contracted position. When that happens, getting the extensors back online and suppressing the flexors no longer  helps. The limb can become almost permanently bent.

Repairing peripheral issues, like contracture, may require surgery to sever and extend tendons and other tissue.

Preventing and Treating Tone and Spasticity

The first line of defense is in the immediate short-term after stroke. Getting the limbs moving and keeping them moving to drive the neuroplastic change of recovery helps.

Beyond that, and once tone and spasticity set in, regular stretching is critical. A survivor needs to keep stretching those limbs to prevent contracture.

That's why in conference calls and interviews, I'm often stretching my fingers back and my wrist back to counteract the tone and spasticity in my left arm and hand.

Medication can help, too. Baclofen is a popular choice. It's basically a muscle relaxer that helps counteract the excessive action in my flexors. Some people find it can cause drowsiness so it's not the best choice for everyone.

I tend to take my Baclofen before going to bed. If it makes me drowsy then that's great. It also helps reduce the tone I might experience overnight.

For folks with severe tone and spasticity, a surgically implanted Baclofen pump can help. The medicine directly target the key muscles which means the patient needs much less medicine for a much greater impact. Since it is a low dose, it is less likely to induce the fatigue, too.

Other medications to treat tone and spasticity include:

• Tizanidine
• Flexeril
• Gabapentin

Botox, Dysport, and Xeomin are also treatments that can help. These are neurotoxins that a doctor can inject every three to four months. By delivering the toxins to the flexors, it reduces their ability to flex. That gives the extensors a chance to recover and rebuild a normal relationship. Of course, this is a short-term solution. Combined with exercise, it can definitely help.

I'm probably overdue for my next Dysport treatment.

Contralateral C7 Nerve Transfer for Stroke Recovery: New Frontier for Peripheral Nerve Surgery

A promising area for relieving tone and spasticity is C7 nerve transfer. Recent studies are showing promising results.

Neurosurgeons split the a nerve from the unaffected side of the brain that runs through the spine and reconnect half of it to the equivalent nerve on the affected side. The do this in the neck.

Results show a quick reduction in tone and spasticity even in patients 15+ years after stroke. After a year, patients are experiencing improved use of the limb, too.

The number of people in the studies so far is pretty small (36) and more research is needed. It is a promising result, though, and builds on techniques that have been used to treat non-stroke injuries.

It also highlights the tremendous ability of the brain to adapt since now the unaffected side starts to control the affected side of the body.

You can read a review of the technique and studies at the Journal of Clinical Medicine.

Vagus Nerve Stimulation

In 2021, I spoke with Dr. Jesse Dawson, a Professor of Stroke Medicine and Consultant Physician in the Queen Elizabeth University Hospital in Scotland about his research in Vagus Nerve Stimulation. This research is now being commercialized and used to treat patients in the US.

The therapy involves surgically implanting a stimulator in a patient's chest that connects to the Vagus nerve. During PT or other exercises, the device sends an electric signal to the Vagus nerve. Stimulating the nerve while doing therapy has shown positive results in terms of limb use.

It's interesting because it's not treating the Vagus nerve itself, but stimulating this nerve appears to make the other nerves in the brain more receptive to the therapeutic exercises.

You can learn more about this research here: http://Strokecast.com/VNS.

Survey

What do you think of the Strokecast? Let me know what you like and what you would like to be different by completing the survey at http://Strokecast.com/Survey. I would really appreciate it.

If you complete the survey by March 31, 2023, you could win a $25 Amazon gift card, too.

Hack of the Week

Hand grip exercisers are nice tools to encourage stretching and exercise throughout the day.

These things are like a pair of pliers without the tool end. They are spring loaded. You squeeze them to exercise and they try to force your hand open. You can get them in a variety of strength levels. Start with light weight ones and move on to tougher ones as your strength improves.

What I like about them is that closing a fist comes back before opening one. Closing your fist takes work. Opening your fist is often harder, but these gadgets force the hand open. So you get to practice the squeeze and you get a stretch into fingers, too, to address tone and spasticity.

It's also one more way to reduce the odds of developing a contracture.

Here are a couple options:

https://strokecast.com/Hack/HandExerciserTraditional (Traditional design)*

https://strokecast.com/Hack/HandExerciserAdjustable (Adjustable resistance)*

Links

Where do we go from here?

• Check out Dr. Feng's work at Duke University
• Share this episode with someone you know by giving them the link http://Strokecast.com/ToneBasics
• Complete the Strokecast survey at http://Strokecast.com/Survey
• Don't get best…get better

More thoughts on Tone and Spasticity

Listed in: Health

5 Ways to get the most out of the new year for stroke survivors

Whether you're celebrating the new year on January 1, January 22, September 15, your birthday, your Strokeaversary, or some other date in 2023 or beyond, it's a time to pause and think about where you want to go and what you want to do.

We could talk about resolutions, but that seems to set us up for failure. Few people set and achieve resolutions. Failing them within 2 weeks of the new year is pretty much a comedy trope at this point. So with all that cultural baggage, let's not talk about resolutions.

Let's talk things we can do. Here are 5 things you can build into your plan for the new year.

If you don't see the audio player below, visit http://Strokecast.com/MSN/NewYear to listen to the episode.

Decide what you want

Many people go through life on autopilot; they let the things they want be decided by societal standards or other people or their perceptions of what they're supposed to want.

Others choose goals, priorities, and direction once and never think about it again.

Stroke adds yet another layer to that. Most stroke survivors I speak with say the stroke changed not only their abilities but also the way the think about life. It adjusts their priorities or brings a level of clarity they might not have had before.

Whether you thought you knew what you wanted before a stroke or not, surviving a stroke gives you a reason to stop.

To stop and think about your goals.

It gives you a chance to think about what you really want now.

That doesn't mean you have to scale back because of language, physical, cognitive or other disabilities. It's possible your dreams now can be even bigger.

What it does mean is you have some work to do. You have to figure out what you want to do and why you want to do it.

Before you pursue a goal or plan of action for your new year, decide if you want the result. Maybe running seems like something you SHOULD do, but do you really want to? You're unlikely to be successful at achieving a goal you don't care about.

Take some time and a pen and paper or blank digital document or dry erase board or a partner who can serve as a scribe, and make a list of things you care about and want to do. What are you passionate about? What do you care about? What lights a fire under you?

After stroke your answer may be wildly different than it was before.

If the answer is "nothing," that's okay, too. Perhaps dedicate your year to finding something you care about. Or find a counselor you can  communicate with. Lack of interest in things could be a sign of depression.

In my experience, many people don't know what they really care about or want to do because they haven't taken the time to figure it out. The run on autopilot doing what they think they are "supposed to do" rather than what truly inspires their soul.

So think about what you want and then decide to pursue it.

Make a plan

Once you know what you want to do, then you can figure out how to do it. Talk to people who can help. Maybe that means getting more PT, OT, or speech therapy. Maybe it means finding a business or writing coach. Maybe it means more work by yourself at home.

You don't have to get it all at once. Break it up into smaller pieces and work on a plan to complete these individual pieces.

One method that helps it to build SMART goal. These are goals that are Simple, Measurable, Achievable, Relevant, and Time bound. I talked more about SMART goals in an earlier episode at http://Strokecast.com/SMART.

Find a community

Loneliness and isolation are two if the biggest non-medical challenges stroke survivors face. It may seem even harder for younger stroke survivors who suddenly find themselves flung off the traditional life paths of advancement their peers are on.

So find a community of stroke and brain injury survivors. We're out there.

Look for local support groups. Many are meeting online these days. Try different groups until you find one you feel comfortable it. Afterall, each group develops its own personality. Some will be mainly social while others will focus more on education. Some will be more diverse while others may be made primarily of older folks. If you're not comfortable in one group, try another.

Check out the various Stroke hashtags on Instagram, Twitter, and Tik Tok. Follow and interact with folks using tags like:

• #Stroke
• #StrokeSurvivor
• #StrokeLife
• #StrokeAwareness
• #StrokeRecovery

Try some others that you come up with. Watch the content. Like and comment on it. Share your favorites.

Share your story

All those stroke stories that you've found helpful? They were told by someone who thought their own story was boring and not worth telling. Many people can't imagine how their experience can help others.

So consider telling your story. That doesn't mean you need to start a podcast or YouTube channel (but let me know if you do). Just work on becoming comfortable telling it to other survivors and your family members and friends.

If you have a forum to tell your story, tell it. Maybe it will help another survivor feel not so alone. Or it will help your colleagues understand other folks in their own family or social circle. Maybe a stranger will learn the BEFAST warning signs, and that will make all the difference in someone else's stroke.

At the very least, it may help you better understand and make peace with your own experience.

As a species, we thrive on storytelling. And you have a doozy to share.

Reach out to your therapists

If it's been a while since you were in contact with your medical team or you ended therapy for whatever reason, reach out to your former PTs, OT, SLPs, Doctors, etc. Let them know how you’re doing and share your progress.

If you can't visit the medical facility, send them an email, or send a note or card to the facility.

They work hard to get us to the next level, but they don't see most of us after that. Most of them love it when former patients send them an update or reach out to them.

They helped us so much. This is an easy, cheap, and powerful way to help them.

Have a great new year

This new year, whenever you mark it, is yours to decide what to do with. I know, that's easy to say and sometimes it's harder to see it. But the time is going to pass regardless of what you choose to do.

Take this moment and make some decisions. Do the things you can do to influence the outcome of your future. Whatever your goal is, you won't get any closer to it unless you know what it is and take active steps to get there.

Survey

As we head into the new year, I want to hear from you about how I can make this show better. Or to keep it the same if you like it the way it is. Visit http://Strokecast.com/Survey to fill out the short form and share your thoughts. You can do so anonymously. If you'd like to shed a little anonymity, you can enter a drawing for a $25 Amazon gift card. For more details and to complete the survey, please visit http://Strokecast.com/Survey.

Win of the Week

If you had an accomplishment or win, big or small since your stroke, the community wants to hear about it. Visit http://Strokecast.com/Win to learn how you can share it so we can all celebrate.

Hack of the Week

If you pour liquor from bottles, look for 1 ounce or 1.5 ounce pour stoppers like these on Amazon: http://Strokecast.com/Hack/Stopper. * I found some that I use at Total Wine so they're readily available.

I enjoy nice whiskey, Scotch, and bourbon in moderation (my doctor said, "Just don't drown your brain in it." The problem I have with the bottles comes from my hemiparesis.

Pulling the lid/cork from the bottle means holding the bottle in place. I have to count on my weaker and spastic arm to hold the bottle still while I remove the lid with my other hand. And then I have to rely on my affected arm to not jerk and spill the bottle the instant the lid pops free. Putting the cork/top back in is easier, but still presents similar challenges. So let's reduce the risk of spill.

These pourers mean that I have to only pop the lid off once, and then put the pourer in. Over the course of the next several months when I want to sip a dram, I just pick up the bottle and pour.

The bonus perk here is that I know exactly how much I'm pouring -- no accidental overpours.

If you have non-alcohol bottle, like flavorings for coffee or olive oil, you may want to take a look at these stoppers, too. The texture of the liquid may be an issue, but look into it to figure out what works for you.

Links

Where do we go from here?

• As you start your new year, whenever it starts, do the 5 things we talked about here:
  • Decide what you want
  • Make a plan, Find a community
  • Share your story
  • Contact your therapists

• Share this guide with someone you know by giving them the link http://Strokecast.com/NewYear
• Visit http://Strokecast.com/Win to share your win
• Don't get best…get better.

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

1) Decide what you want

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

2) Make a plan

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

3) Find a community

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

4) Share your story

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

5) Contact your therapists

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

Listed in: Health

A Voice Over Booth Nearly Becomes a Coffin for a Stroke Survivor

Paul Strikwerda is a voice over artist. You may have heard is voice in commercials and other projects. Now, he is also a stroke survivor.

The stroke he suffered in his voice over booth engaged multiple primal fears (except for spiders) and is one of the more terrifying I've heard.  I'll save the details for the interview itself.

The genesis of this episode is that I wanted an answer to the question, "Is voiceover a good career choice for a stroke survivor contending with disabilities?" I was referred to Paul, by Anne Ganguzza of the VO Boss podcast (another great resource for the VO field), and in this episode Paul and I discuss that question and so much more.

If you don't see the audio player below, visit http://Strokecast.com/MSN/VoiceOver to listen to the conversation.

Who is Paul Strikwerda?

Paul Strikwerda was born and grew up in the Netherlands. He studied music in college and began a career in radio after graduation.

Life eventually took him to the United States and an unexpected series of events led him down the path of a voice over artist.

Paul wanted to do more than read scripts for clients. He wanted to help other artists in the VO field. He would go on to write "Making Money In Your PJs: Freelancing for Voice-Overs and Other Solopreneurs"* and expand his blog on NetherVoice. He offers an unvarnished view of what life in the VO field is like and what newcomers need to watch out for.

For those who want to grow their skills as voice over artists and voice over business people (you have to be both to succeed) Paul offers coaching programs. As he says on https://www.nethervoice.com/coaching/:

It’s not enough to be outstanding. You need to stand out. Voice overs are the invisibles of the entertainment industry. Competition is increasing, and clients aren’t going to book you if they don’t know you exist. You need a plan to put you on the map, so clients can find you, hear you, and hire you. Let me be your visibility coach, and help you attract the jobs you’re dreaming of doing.

What is the Voice Over field?

The Voice Over industry is one most people don't think about, but it is one that we've encountered throughout our lives. Every time we hear a narrator on TV or listen to an audio book or hear a corporate voice mail system or listen to the introduction to this show (Thanks, Tim!) or complete eLearning with a person speaking, or learn about pancakes, we are listening to a voice over artist at work.

The breadth of the field is fascinating.

The industry itself is facing some growing pains with technology and the increase in computer generated voices. There are some growing pains there. Technology has also led to a democratization of the field in some respects. Microphones and computers for editing have gotten cheaper and more widely available. Home studios are within reach of more people. Some of the same technology trends that drive podcasts drive voice over work

Lots  of people toy with the idea of becoming voiceover artists so, especially at the entry level, there is a ton of competition. As Paul explains, though, it takes a lot more to be successful than the ability to speak into a microphone. A voice over artist needs to be a business person.

The need to sell their services. The need to audition well. They need to write contracts and collect from clients. They need to have a handle on the assortment of ways they can license their voice. And they still need to act and edit and produce.

If you are thinking about a career in voice over, and you're will to do all the stuff that goes along with it,  Paul's coaching services might be a good fit

How does AFib cause stroke?

The heart is made up of four chambers. Blood normally flows from the upper right to the lower right to the lungs to the upper left to the lower left and then on to the rest of the body. Moving it efficiently from one place to the next requires a precise rhythm -- the lub-dub of the human heart beat.

When someone has AFib, or atrial fibrillation, it means the rhythm isn't quite right sometimes. Maybe different parts of the heart are out of sync, or part vibrates too fast or the heart rhythm itself fluctuates in an odd way.

When this happens, blood doesn't always leave the chamber it’s in when it's supposed to. And when blood pools or collects in the heart when it shouldn't, it can start to coagulate. It forms clots. Then when the heart beats one of those clots that formed due to AFib can shoot off to another part of the body.

If that clot makes it to the brain and gets stuck in a blood vessel, you have an ischemic stroke.

So how do you treat it?

Well, first you have to find it. Since it is irregular, that's not always easy. Some people will get a surgically installed monitor that will track their heart rhythm for a couple years. Others (like me) will have to wear a device like a Zio patch for two weeks to look for abnormalities.

If doctors find or strongly suspect AFib affects a patient, they have a few treatment options.

Blood thinners, or anticoagulants are one option. These medicals like Eliquis and Xarelto are more aggressive at stopping clots than antiplatelet medication like aspirin or Plavix (Clopidogrel). They require additional blood tests and monitoring and put the patient at greater risk of bleeding because that's exactly what their supposed to do.

Paul had an ablation therapy. Doctors either freeze or burn some small amount of heart tissue. This disrupts the way electricity flows through the heart, which helps normalize the heartbeat. It's a fascinating technique and eliminated the problem for Paul.

You can read more about the procedure from Johns Hopkins or from the Mayo clinic.

Some people, if their unusual rhythm is too slow, may need a surgically implanted pacemaker to keep the heart moving enough blood quickly enough.

As more people become aware of AFib and research continues, the future of treatment may change dramatically.

In defense of social media

A lot of people claim to hate social media. The conversation is even louder in December 2022 with Elon Musk's takeover of Twitter. Hate speech, privacy concerns, online bullying, the growth of influencer culture, and more have all made it fashionable to hate on social media.

And there are a lot of problems with it. By allowing folks with fringe and extremist views to connect and validate one another's views, it has likely allowed those views to become more common. I'm not defending that.

That same mechanism, though, has allowed people with disabilities to find other like-minded folks.

Stroke and other disabling conditions are isolating. Appearances of disabled people in media are still rare. After stroke, many folks leave their jobs, removing another vector for social experience. Friends and family members may pull back from stroke survivors either because the survivor is no longer able to participate in the same activities or because they are uncomfortable around a person with disabilities. Or because the survivor is a living reminder that they could find themselves in the same situation.

And disabilities themselves make social connection hard. Aphasia impacts conversation. Mobility challenges make it harder to go someplace to meet someone. Vision or equilibrium challenges may make it unsafe to drive.

That's to say nothing of the assortment of cognitive, sensory processing, emotional, and fatigue related challenges a survivor may live with.

And then we can look beyond the stroke world to our neuro cousins in the MS and TBI communities, and beyond that into the broader world of people with disability.

Despite the billion+ disabled people in the world, it's easy to feel the despair of feeling alone.

Social media changes that. Or at least helps with it. People with disabilities are able to connect with one another across the street and around the world. There is power in the shared experience -- of finding someone going through a similar experience. There's power and hope in being able to support each other -- to build on the success of others to drive our own recovery and that of others in the community.

To be able to raise a voice and say, "This is my hidden reality!" To be able to see that the way someone else treats us may not be right and to have that reinforced by people all over the country.

There's power in giving everyone a literal or metaphorical voice. To demonstrate to the world that we're here and we're not going anywhere.

Whether it's on Facebook, Instagram, Tik Tok, IRC, MUDDs, Discord, YouTube, or whatever, we can leverage those platforms to empower us to live our best lives. Or to share a simple message of support.

Look for communities that resonate with you in a supportive fashion. Follow hashtags like these to start and try others to build your community:

• #Stroke
• #StrokeAwareness
• #StrokeRecovery
• #BrainInjury
• #LifeAfterStroke
• #Aphasia
• #Mindset
• #CripTheVote
• #Disability

Social media allows us to connect and that connection is so important to getting more out of life.

BEFAST & AHORA

Raising voices in social media isn't just about supporting our own lives; it's about saving others. And you can help save other's lives by sharing the stroke warning signs far and wide.

We know time is essential.

We also know that over the past 20 years or so there have been tremendous changes in stroke treatment - new ways to save lives and reduce the severity of disability. That, of course, assumes treatment begins as soon as possible.

And to make that happen, people need to recognize that a stroke is happening and contact emergency services immediately.

So share the stroke warning signs in English and Spanish far and wide -- BE FAST and AHORA.

And if you have the warning signs to share in another language, share those, too.

June Hawkins writing workshop

June Hawkins is a stroke survivor in Canada helps stroke survivors connect (or reconnect) with their creativity through the power of writing.

Her program is called, "With a Stroke of my Pen" and with her cofacilitator, writing prompts, and exercises she helps other survivors explore their world in writing.

The next cohort starts soon. To learn more, visit http://www.withastrokeofmypen.ca/

Hack of the Week

There are two things that Paul found critical to going through recovery and living with disability.

The first is to have a dedicated partner who can advocate for you. It's not easy to navigate the healthcare industry with sudden, unexpected brain damage, and a supportive partner makes a huge difference. Finding the right person to be your partner in life, of course, is not always the easiest task.

The other element which may be easier to cultivate is to develop a "stubborn positivity."

The right action-oriented attitude is what gets us developing the right mindset for recovery. It helps us expect to get better and it drives us to do the work -- the exercises, the metal health care, the repetitions, etc. -- that will ultimately help us drive the neuroplastic change in the brain that empowers recovery.

Links

Where do we go from here?

• Check out Paul's blog and website at http://NetherVoice.com
• Share this episode with someone you know by giving them the link http://Strokecast.com/VoiceOver
• Check out June's writing course at http://www.withastrokeofmypen.ca/
• Don't get best…get better

More thoughts from Paul

Listed in: Health

Memory and the Brain: How it Works and How it Doesn't Work

Memory is not as reliable as we like to think it is. And that's not a stroke thing. It's just the nature of memory.

Of course a stroke can impact memory as well. It can hurt our short-term memory, like in Christine Lee's stroke ( http://Strokecast.com/Christine). It can impact whether or not we can "remember" vocabulary, like in the case of aphasia. We may find our memory stronger earlier in the day than later in the day.

This week, I speak with the host of the Brain Science podcast and member of the Podcast Hall of Fame, Dr. Ginger Campbell about ow memory work in the non-damaged brain. We explore some of the misconceptions that govern memory , its accuracy, and even how it impacts the criminal justice system.

If you don't see the audio player below, you can listen to the conversation at http://Strokecast.com/MSN/BrainScience

Who is Dr. Ginger Campbell?

Dr. Virginia “Ginger” Campbell is a physician, author, and science communicator. She is the author of “Are You Sure: The Unconscious Origins of Certainty”* and she is a member of the Podcast Hall of Fame (2022). Dr. Campbell began podcasting in 2006 when she launched two shows: Brain Science and Books and Ideas. Both feature interviews with scientists, but Books and Ideas includes more diverse guests including science fiction writers. In 2018 she launched Graying Rainbows, which took her interview skills to a more personal level. Brain Science is still going strong and is widely regarded as the best podcast about neuroscience.

Dr. Campbell spent over 20 years as an emergency physician in rural Alabama. In 2014 she went back to the University of Alabama in Birmingham where she completed a Fellowship in Palliative Medicine. She now practices Palliative Medicine at the Veterans Administration Medical Center in Birmingham, AL, where she enjoys both patient care and teaching residents, fellows, and medical students.

Dr. Campbell enjoys sharing her passion for science and especially neuroscience. Her goal is to make these topics accessible to people from all backgrounds.

Memory is not a Recording

One theme that comes up frequently is that the brain is not a computer and memory is not a recording.

The dynamic nature of memory means that our "mental records" of events cand and are supposed to change. Each time we recall an event, we rewrite it. Maybe we add new data or interpretations. Maybe we purge less relevant details.

The whole evolutionary purpose of memory is to keep us alive so we can reproduce and propagate our genes. Of course that's the evolutionary purpose of every aspect of our biology. Our existential, theological, spiritual, philosophical, or metaphysical purpose is different, but that's a separate discussion.

Memory is not intended to provide an accurate, societal record of all events. It's meant to help us survive.

Criminal Justice

Eyewitness testimony and stranger identification is the least reliable form of testimony in court. In addition to challenges like cross-race identification, even our most traumatic memories lack accuracy. Again, the memory is there to keep us alive, not to ensure the right person goes to jail.

We often read about the flaws of eyewitness testimony. The fact is memory is often not accurate enough to convict someone beyond a reasonable doubt (the standard in the US). Fortunately, the proliferation of dash cams, cell, phone recordings, and police body cams provide an often more accurate supplement to memory. And the advances in DNA identification and analysis provide a further level of certainty.

There are likely still hundreds or thousands of people in prison around the world solely because of someone's memory.

Is everyone who claims to be innocent actually innocent? Of course not. Are some of them innocent? Surely.

Any assessments and accusations, especially about strangers, need to be taken with a substantial grain of salt.

Podcast Hall of Fame

In Spring of 2022, Dr. Ginger Campbell was inducted into the Podcast Hall of Fame. 

The honor recognizes her commitment as a science communicator/educator. Talking about science and making it accessible to everyday people and voters is essential to our future as a society. At one level, we have learned so much about how biology and climate work, it's astounding.

At the same time we are still plagued by anti-vaxxers, flat earthers, and climate change deniers who deny science. They can win adherents due to lack of skill of many in the science community when it comes to communicating with the general public.

In all fields, scientific and otherwise, the deeper the experts get, the more likely they are to be speaking a different language -- one of assumptions and vocabulary and lines of thought that are unique to the field.  What's often missing is an ability to translate that expert language from the field of experts to the general populace, who may have their own expertise in their own fields.

That's why shows like the Brain Science podcast are so important. And it's why I hope I can make my own contribution to the space with this show.

By the way, Ginger is not the only podcast hall of famer I've had the pleasure of interviewing. A few years back, I interviewed Dave Jackson from the School of Podcasting on my 2-Minute Talk Tips podcast.

You can listen to that episode here:

Hack of the Week

The simplest way to improve your memory is to pay attention to things you want to remember. That means repeating people's names when you meet them, or repeating appointment information as you make the commitment.

The more you repeat it, the more brain resources you commit to remembering something. When it's important to remember, tell your brain that it's important to remember and why. Give yourself the context you need.

If you hear something out loud, say it out loud. Then handwrite it. Engage more parts of your brain and body to secure important pieces of data in your memory.

A bonus hack to keep your brain sharp? Engage socially with people because the brain craves variety and novelty. And few things are as random and unpredictable as people.

Links

Where do we go from here?

• Text BrainScience to 55444 to get 5 Things You Need to Know About Your Brain, and to subscribe to Ginger's newsletter. And be sure to check out her podcast Brain Science to learn more about the brain and neurology.
• Share this episode with someone you know by giving them the link http://Strokecast.com/BrainScience.
• Subscribe to the free Strokecast newsletter at http://Strokecast.com/News.
• Don't get best…get better.

More thoughts from Dr. Ginger Campbell

Listed in: Health

The Truth About the COVID-19 Vaccine and Stroke! Plus, how to do your Research

More than a million people in the United States have been killed by COVID-19 in the past 3 years. The numbers would be much higher, but the vaccines were developed with amazing speed. Time and again, the vaccines have been shown to be safe and effective.

Yet some people persist in claiming the mRNA vaccines are causing an epidemic of stroke.

The data is clear. They do not. If you want to reduce your chances of stroke, get the vaccine.

The new thing that causes stroke over the past few years is COVID-19 itself. If you want to decrease your chances of having a stroke (or another stroke) don't get a severe COVID-19 infection. And the simplest thing you can do to reduce your chances of getting a severe COVID-19 infection is to get the COVID-19 vaccine.

If you do catch COVID-19 despite the vaccine, the data shows it will be much less severe and much less likely to be fatal. 

In addition to protecting yourself, you are also helping to protect others who may not be medically eligible to get the vaccine.

The COVID-19 mRNA vaccines are saving lives every day.

In this episode ...

In this episode, I talk with data scientist and epidemiologist Dr. Remle Crowe about the research studies coming out now that show what we already knew from earlier research: the COVID-19 vaccine does not increase your risk stroke.

We talk about several studies, and we talk about how you can do your own research on the credibility of these studies and evaluate how well they reflect the scientific reality of our world.

In this post, you'll also find links to a bunch of these studies that you can read for yourself.

Start by listening to this conversation. If you don't seed the audio player below visit http://Strokecast.com/MSN/vaccine to listen to the whole conversation.

Who is Dr. Remle Crowe?

Dr. Remle Crowe is an expert in EMS research and quality improvement. From truck clutches to clinical care, she has shown how research and improvement science work to solve problems across fields. Prior to earning a PhD in Epidemiology, her EMS career began with the Red Cross in Mexico City as a volunteer EMT. She has authored numerous peer-reviewed publications related to prehospital care and the EMS workforce. Now, as a research scientist with ESO, Dr. Crowe routinely uses EMS data to improve community health and safety.

Dr. Crowe previously appeared on the Strokecast in episode 132 to discuss the AHORA pneumonic to help Spanish speakers recognize and respond to a stroke. When it comes to stroke, Time is Brain regardless of which language you speak.

A Sampling of the Studies

When we claim the data indicates that the vaccine doesn't cause an increase in stroke, what data are we talking about? How did "they" analyze it? Who reviewed the studies to ensure they were accurate? Where can you read the details yourself?

As Dr. Crowe explained, there are currently a whole bunch of studies that are coming out. That makes sense; it's roughly 18 months since the vaccines against COVID-19 became widely available. To conduct sound research, you need a large pool of people to look at. You need to take some time to see the results. You need to write up those results. Then you need to submit them for publication. Publications will then need to review before publishing them.

That brings us to where we are today with all these studies now becoming available. Let's take a look at a few of them, and I encourage you to click through to the details and read them yourself. Click the study titles for more.

Surveillance for Adverse Events After COVID-19 mRNA Vaccination

This study published in JAMA (Journal of the American Medical Association) looked at nearly 12 million doses of the mRNA vaccine given to more than 6 million people.

This is what they learned:

"The incidence of events per 1 000 000 person-years during the risk vs comparison intervals for ischemic stroke was 1612 vs 1781 "

In other words, the time period at greatest risk for stroke did not see an increased risk.

They concluded:

"In interim analyses of surveillance of mRNA COVID-19 vaccines, incidence of selected serious outcomes was not significantly higher 1 to 21 days postvaccination compared with 22 to 42 days postvaccination. While CIs were wide for many outcomes, surveillance is ongoing."

COVID-19 Incidence and Death Rates Among Unvaccinated and Fully Vaccinated Adults with and Without Booster Doses During Periods of Delta and Omicron Variant Emergence — 25 U.S. Jurisdictions, April 4–December 25, 2021

We talked about this report from the CDC Morbidity and Mortality Weekly Report during the episode.

This study looked at infections and deaths among vaccinated folks and unvaccinated folks. The rate of infection and death from COVID-19 was much higher among unvaccinated folks than among vaccinated or vaccinated and boosted folks.

The report says:

"Rates of COVID-19 cases were lowest among fully vaccinated persons with a booster dose, compared with fully vaccinated persons without a booster dose, and much lower than rates among unvaccinated persons during October–November (25.0, 87.7, and 347.8 per 100,000 population, respectively) and December 2021 (148.6, 254.8, and 725.6 per 100,000 population, respectively) (Table 2). Similar trends were noted for differences in the mortality rates among these three groups (0.1, 0.6, and 7.8 per 100,000 population, respectively) during October–November."

Even though the vaccine does not guarantee a person will avoid COVID-19, it greatly increases their chances of avoiding infection. And if they do become infected, the vaccine greatly increases their chances of survival.

Acute ischemic stroke and vaccine-induced immune thrombotic thrombocytopenia post COVID-19 vaccination; a systematic review

This study in the Journal of Neurological Sciences looked throughout the published literature and found just 43 incidents of stroke following the vaccine administration.

"AIS has been reported as a rare complication within 4 weeks post COVID-19 vaccination, particularly with viral vector vaccines. Health care providers should be familiar with this rare consequence of COVID-19 vaccination in particular in the context of VITT to make a timely diagnosis and appropriate treatment plan."

The report specifically called out the risk of “viral vector vaccines” (and, again, it’s a shockingly small risk). The most common viral vector COVID-19 vaccines are those from Johnson & Johnson and from Oxford-AstraZeneca.

The mRNA vaccines from Moderna and Pfizer are not viral vector vaccines., indicating that those appear to be even safer.

The recommendation is not to avoid vaccination. It's an extremely rare complication. The recommendation is to watch for signs of stroke, which is something we should be doing all the time anyway.

Association Between Vaccination and Acute Myocardial Infarction and Ischemic Stroke After COVID-19 Infection

This article, published in JAMA looked at what happens after a COVID-19 infection for both vaccinated and unvaccinated folks. If someone does get infected and, does their vaccination status reduce the impacts of infection? Yes, it does.

In fact, folks who got the vaccine and the got COVID were LESS likely to have a stroke or heart attack after their COVID infection.

"This study found that full vaccination against COVID-19 was associated with a reduced risk of AMI [heart attack] and ischemic stroke after COVID-19. The findings support vaccination, especially for those with risk factors for cardiovascular diseases."

Risk of thrombocytopenia and thromboembolism after covid-19 vaccination and SARS-CoV-2 positive testing: self-controlled case series study

This study in the UK looked at patients who had been infected with COVID-19 or who had received the vaccine. More than 30 million people were part of the study. The conclusions were clear:

"Increased risks of haematological and vascular events that led to hospital admission or death were observed for short time intervals after first doses of the ChAdOx1 nCoV-19 and BNT162b2 mRNA vaccines. The risks of most of these events were substantially higher and more prolonged after SARS-CoV-2 infection than after vaccination in the same population."

Even if there is a slight risk from vaccination, the risk from the actual disease is much higher.

COVID-19 vaccine not linked to increased risk of stroke

Not all research becomes available without a subscription. Researchers at Cedars-Sinai have found similar results to other studies though and have come to the same conclusion.

"Newly compiled data evaluated by researchers in the Department of Neurology and the Smidt Heart Institute at Cedars-Sinai shows that COVID-19 vaccines do not raise stroke risk--but that severe COVID-19 infection does. Physician-scientists hope this growing body of evidence, highlighted today in an editorial in the peer-reviewed journal Neurology, will ease the minds of individuals still hesitant to be vaccinated."

Risk of Myocarditis After Sequential Doses of COVID-19 Vaccine and SARS-CoV-2 Infection by Age and Sex

We talked about this study in the conversation with Dr. Crowe. At first glance it is concerning. This is the conclusion:

"Overall, the risk of myocarditis is greater after SARS-CoV-2 infection than after COVID-19 vaccination and remains modest after sequential doses including a booster dose of BNT162b2 mRNA vaccine. However, the risk of myocarditis after vaccination is higher in younger men, particularly after a second dose of the mRNA-1273 vaccine."

That does seem scary for young men, and there are a couple things to keep in mind.

First, the number of events was so small that it's tough to draw firm conclusions. When you get down to such low numbers, that stats can do weird things.

Second, this was based on the adverse event reporting system. That does not prove causality. It just flags something to look at more closely if there are large numbers. Which there are not.

The point of all this research, though, is to learn more and compile more and more evidence. And ultimately to let the body of evidence guide decision making and recommendations.

What we know at this point is that the risk of stroke after a COVID-19 infection is much higher than the risk of stroke following a vaccination.

And the risk of stroke after COVID-19 infection is much lower in folks that have been vaccinated than it is in those who have not been vaccinated.

COVID-19 is not gone. It is still out there in the world infecting people, killing people, and giving people strokes.

Billions of vaccinations later, this is what the data tells us.

The simplest way to reduce your risk of stroke is to get the vaccine and stay boosted.

Do Your Own Research

We talked about a bunch of research in the podcast, and we looked at a bunch of reports above. You don't have to just accept my commentary or Dr. Crowe's. You can read the reports yourself and look at the data and see why the vast majority of medical professionals have concluded the vaccines are safe and effective.

Dr. Crowe offered a number of tips to help you do your research. You'll find them and more in this list.

Tip 1

Search research focused search engines and directories to find studies and resources. Google Scholar and PubMed are great places to start.

Tip 2

Look at the Publication that publishes the research. Is it well known for scientific rigor? Does it have a strong requirement for peer review of articles? Or can someone publish in it by simply paying a fee?

Tip 3

Search for the publication's Impact Factor. The more other publications that cite its work, the higher the number. A publication with a higher impact factor is likely more credible.

Tip 4

When you get to the actual study, look at what type it is. If it was a case study, that's interesting. If it was a randomized, double-blind, placebo-controlled study on a large scale, that's even better. If it was a systemic review evaluating hundreds of other studies, that's stronger still.

Tip 5

Look at how many people were part of the study. A few dozen is interesting. A few million is much more likely to yield credible results.

Tip 6

Look at the results of the study, relative to the size of the study. A few results out of a dozen is one thing. A few results out of millions of subjects is another matter altogether.

Tip 7

Look at the goal of the study. What were the authors hoping to demonstrate? Did they succeed? Why or why not?

Tip 8

Consider confounding. Studies generally deal with a subset of the population -- a limited number of people -- and seek to extrapolate those results and draw conclusions about the broader population.  For those conclusions to be valid, though, the group studied needs to be similar to the group the study extrapolates to. The more different the groups are, the less reliable the results.

Tip 9

Finally, does the study demonstrate causality or just coincidence? There’s a reason folks will often say, “Correlation does not equal causation.” For example, the FDA Adverse Event Reporting System (FAERS) Public Dashboard is a collection of negative things that happen to a person after they get a vaccine. It's not a list of events caused by the vaccine. If a person gets hit by a bus after getting the vaccine, that can go in the database. It's an adverse event. That doesn't mean the vaccine caused the bus accident. Read the study carefully to see if the authors claim a causal relationship and if that relationship is supported by the evidence in the study.

AHORA

The last time Dr. Crowe was on the show was to talk about the AHORA messaging to help Spanish speakers recognize and respond to stroke. It's basically the equivalent of the BEFAST messaging we talk about a lot in English.

Here is the stroke warning pneumonic device in Spanish. Download it and share it far and wide.

Let’s look at a translation.

And, of course, here is the BE FAST messaging for English speakers.

Both sets of symptoms look for the same thing. The AHORA messaging includes legs and headaches. The BE FAST messaging specifically calls out calling an ambulance.

Regardless, the more people that can recognize a stroke as it is happening, the better off we will all be.

Pop Culture Moment

During the conversation, Remle mentioned she is a big fan of the movie Sliding Doors. It's an examination of how simple moment can change the course of your life. What path lies ahead if we catch that train or miss it?

Or what happens if we turn right instead of turning left?

In reflecting on the past, it's easy to get fixated on thing were so much better back then, but it's never that simple, is it? Billy Joel reminds us that:

"The good old days weren't always good, and tomorrow ain't as bad as it seems."

Other Shows

Journal Club

Remle mentioned her show, PCRF Journal Club, which is a journal review webinar that meets each month. They go deep into looking at the latest research studies that are coming out. The focus is on research around EMS -- the ambulance and transport industry.

If you'd like to learn more, check out its site here: https://www.cpc.mednet.ucla.edu/pcrf

Successful and Disabled

I was also recently featured on another podcast focused on being successful as a person with disabilities.

I joined host Christ Mitchell on the Successful and Disabled podcast to share my story and discuss how I use mindset to drive my recovery and other goals in life.

Listen to it here. If you don't see the audio player below, visit http://Strokecast.com/MSN/Vaccine to listen to the conversation:

Hack of the Week

Reading a paper book can be challenging with one functional hand. It's even harder if you try to do that while eating a meal. Why? Because books don't always want to stay open on their own. You have to hold them open, which makes it harder to pick up your cheeseburger.

I use my phone to address this problem. I open the book and then lay my phone across the open pages. It's just heavy enough to keep the book from snapping shut so I can enjoy feeding my belly as I also enjoy feeding my mind.

Give it a try.

Links

 Where do we go from here?

• Check out the links above to learn more about why getting the vaccine is safer than not getting the vaccine
• Share this episode with someone you know by giving them the link http://Strokecast.com/vaccine
• Do you have a recent win or victory in your recovery? Share it by calling 321-5 STROKE
• Get your vaccine and booster to protect against COVID if your doctor advises it
• Don't get best…get better

More thoughts from Dr. Remle Crowe

Listed in: Health

Walking with Electric Pants

A minor electric signal is all it takes to move a couple hundred pounds of human.

When we walk, the brain sends a signal through the spine to the individual muscles of the legs, feet, and core to manage the complex orchestra of contraction and relaxation that makes balance and walking possible. After stroke, the brain may stop sending all or some of those signals. That breaks the ability to walk. It happened to me and millions of others.

There is nothing wrong with my leg, though. The muscles, joints, tendons and nerves in my leg, foot, and core are all still there and as fully functional as they were before the stroke. They're just waiting for he signal from my brain which, in the beginning, never came.

Rehab was about getting the brain to send that signal again. And it started sending some of it. It's not as complete as it used to be. Or as strong. But it's enough that I can walk with my cane and brace well enough, and not quite as well without my aids.

But, again, it's a brain issue, not a leg issue. If you can send a signal to those muscles without the brain, can you effectively get those muscles to move and walk more effectively? Yes you can.

That's what Neural Sleeve from Cionic does.

In this episode, I speak with Cionic CEO and founder Jeremiah Robison about the Neural Sleeve, why it works, how stroke survivors can learn more, and how his daughter inspired this product.

If you don't see the audio player below, visit http://Strokecast.com/ElectricPants to listen to the conversation.

Who is Jeremiah Robison?

Jeremiah Robison is the Founder and CEO of CIONIC, an innovative company that builds lightweight and durable bionic clothing driven by powerful algorithms that adapt in real time to each individual's mobility needs.

He started the company in 2018 after his daughter was diagnosed with cerebral palsy and he was frustrated at the lack of effective technology available to help improve her mobility. Four years later, CIONIC introduced the breakthrough, FDA-cleared Cionic Neural Sleeve, the first product to combine sensing, analysis and augmentation into a wearable garment.

Prior to CIONIC, Jeremiah spent twenty years at the intersection of data, algorithms, and the human body, driving innovation in sensing and machine learning at Apple, Openwave Systems, Slide, and Jawbone. Jeremiah has a BS and MS in Computer Science from Stanford University.

Jeremiah's daughter

Jeremiah's daughter, Sofia, was apparently in a rush to meet this amazing world. She was born early, weighing just 2 pounds, 4 ounces. She developed Cerebral Palsy in the process.

Cerebral Palsy (CP) and stroke are similar conditions. In fact, as Dr. Heather Fullerton explained in episode 49 ( http://Strokecast.com/PediatricStroke) roughly 50% of CP is caused by stroke in utero or shortly after birth. CP is the result of not enough oxygen getting to the right part of the brain at the right time of development. Brain cells die or don't develop or don't form the right networks the way they should. As a result, a child can develop any number of challenges around mobility, speech, dexterity, and more. Just like adults (and other children) with stroke.

The damage from stroke in the brain is also, in part, due to lack of oxygen getting to the right parts when they need it due to a disruption in the blood supply.

Stroke survivors have a lot in common with our neuro cousins in the CP and MS communities, to name a few.

Jeremiah talks about wanting to help Sofiawith her gait, as any parent would. Jeremiah was in a position to do something about it, and the Neural Sleeve comes from that experience.

Sofia herself is now 12 years old and has developed a presence on Instagram with the family's nonprofit at @WAWOSORG. Sofia shares her own inspirational tips and exercise strategies for other kids with CP or other disabilities.

View this profile on Instagram

WAWOS (@wawosorg) • Instagram photos and videos

FES

FES stands for Functional Electric Stimulation. I talked about the technology in more detail in episode 92 - Electrodes and a Stationary Bike — FES for Stroke Treatment.

I've used eStim in therapy while I was inpatient and then at home, too. Devices are available on Amazon for $30-$50.* You put 2-4 electrodes on an arm or leg, roughly at either end of a muscle. The AA battery powered unit sends a minor electric signal to the electrode. The nerves at the end of the muscle detect it and think the brain is sending the signal. The nerve then contracts or relaxes the muscle.

The muscle is doing the actual work. It can be a great way to help an affected limb get some exercise, stretch some tendons, and generally not waste away. In the shoulder, it can even treat subluxation.

FES is the next level of eStim. Instead of just making the muscle move, it makes it, and other muscles move much more precisely to accomplish a specific function. In the case of Restorative Therapies, this was to coordinate movement to drive rahab.

Some of the more well-known FES devices are those from Bioness and Walkaide. They specifically stimulate the muscles that lift our toes (the dorsiflexors) to eliminate foot drop while walking. They are an alternative to an AFO. The look like a cuff that a person wears just below the knee. They work great for some folks, but not all. They're also not typically covered by insurance.

I tried them both earlier in my post-stroke life. The Walkaide worked better on my gait, but at $5K-$6K to buy the unit (in 2019), I decided the benefit simply wasn't worth the cost for me. For others, the device is a great solution. Author Maddi Niebanck who survived a stroke at 22 and was in episode 97 uses the Bioness and is a big fan.

The Neural Sleeve takes this technology further. As Jeremiah explained, the network of electrodes in the device means that precise placement is not as important. Software can adjust for that.  With its larger assortment of electrodes, it can also stimulate more muscles and address other aspects of gait. And it looks less like a home-release ankle monitor.

The rental aspect of the Neural Sleeve also makes it more accessible to more folks, similar to the approach adopted by show sponsor Motus Nova for its rehab device.

The best rehab gear is the gear you won't need forever, and that rental becomes much more compelling. At least under the American model of health care financing.

Cionic Images

You can get a look at the device in these images. Or visit http://cionic.com.

No Plateau Podcast

Many stroke survivors have heard of Saebo. The make a series of devices for survivors. One of them is the Saebo Step, which is an alternative AFO. They sent me one several months ago, and I use it as my summer AFO. Specifically, it's the one I use when I wear short pants or sneakers.

They also have a podcast called the "No Plateau Podcast" which is a great name for a stroke oriented show. And I'm the guest on episode 6. It was a lot of fun and I didn't have to do the editing.

In the episode, I share my stroke journey and we talk about the good, the bad, and the ugly of stroke rehab. We also talk about what I mean when I say, "Don't get best…get better." And we talk about some of the inequities affecting female presenting and BIPOC stroke survivors.

You can listen right here. If you don't see the audio player below, visit http://Strokecast.com/ElectricPants to listen to the conversation. Or go directly to the audio at this link.

And check out more episodes of the No Plateau Podcast on Saebo's website or in your favorite podcast app.

Hack of the Week

Jeremiah recommends patience. Recovery is a journey as we well know, and we can take it just a piece at a time.

It's also important to capture the process in notes, video, audio, and/or pictures. As we make progress day-by-day we won't see it. It's only when we look back at our records that we see how far we've come.

And of course this aligns well with the idea of "Don't get best…get better." It's that incremental progress that matters…little bits every day that over time add up to success and goal achievement.

Links

Where do we go from here?

• To learn more about Cionic, Jeremiah, and Sofia, visit http://Cionic.com or check out the social media links in the table above.
• Share this episode with someone you know by giving them the link http://Strokecast.com/ElectricPants
• Subscribe to the Strokecast newsletter at http://Strokecast.com/News
• Don't get best…get better.

Listed in: Health

Stroke at 35 is no Match for Sportswriter Calli Varner

Calli Varner and I don't have a lot in common. Calli is athletic and into sports. I … am not. I was born in New York City; Calli was born in the Midwest. Calli thrives in Phoenix, AZ. I still don't understand whatever possessed someone to put the 5th largest city in the US in the middle of an oven.

We do have a few things in common, though. We both like cats. We both like to write. And we both experienced stroke at a relatively young age.

Sportswriter Calli Varner survived her stroke at 35 Thanksgiving weekend in 2021.

I first read Calli's story through the America Heart Association's profile and wanted to learn more. You can read that original profile here. I wanted to hear more so Calli joins me in this episode to share her adventure.

If you don't see the audio player below, visit http://Strokecast.com/MSN/Calli to listen to the conversation.

Calli was lucky in her recovery, but luck isn't just about the randomness of fate in the universe. I like the definition that says luck is what happens when preparation meets opportunity.

Getting to an ambulance quickly made a difference for Calli. Getting tPA quickly made a difference. Already being athletic made a difference. Determination in her recovery made a difference. Simple, clear goal setting made a difference. And the help of Lt Dan, pushed it over the top.

Who is Calli Varner?

Calli is a sports lover and writer in Scottsdale. At 35, she never expected to experience a stroke at such a young age. She is active, attending cycling classes three times a week. While visiting her parents over Thanksgiving, Calli suffered from a moderate acute ischemic stroke when a blood clot traveled to her brain.

After eight months of recovery that included living with her parents, and going back and forth to doctor's appointments, Calli is now fully recovered and ready to get back to football games. Here is how she was able to become stronger after her stroke thanks to the support around her (especially her cat, Lt. Dan) and keeping her eye on the prize, attending a Chiefs game in the fall. 

You can follow Calli on Twitter at @CalliDoesSports

Fast Treatment

The BEFAST stroke warning signs (Balance, Eyes, Face, Arms, Speech, Time) includes time in the list because it is so essential.

Many ischemic (clot-based) strokes can be stopped with a drug called tPA. It has to be administered within the first 3-4.5 hours after stroke symptoms first appear, though.

While research is looking to extend that window, today, those limits apply.

Every minute of stroke means more dead brain cells. tPA can reduce the damage by restoring the flow of blood, oxygen, and nutrients to starving cells before they die, but can't bring them back once they're dead. Calling an ambulance is the essential first aid step when someone MIGHT be experiencing a stroke.

In Calli's case, she got treatment quickly which helped drive her recovery and get her to the life she lives today.

Fibromuscular Dysplasia

According to the Mayo Clinic, Fibromuscular Dysplasia is a condition that leads to changes in the size of blood vessels, often supplying the brain or kidneys.

Narrower blood vessels mean less blood flow to critical parts of the body. These choke points in the circulatory system can also lead to turbulence and turbulence makes clot formation more likely.

Calli has this condition in the vessels in her neck and it MAY be what led to her stroke.

Ultimately, up to 20% of strokes are "cryptogenic," meaning there is no known cause. It's frustrating because it means survivors don't know how to prevent it.

In Calli's case, they speculate that the reason her fibromuscular dysplasia didn't cause issues before was because she was in such great physical shape.

Being in great shape doesn't mean you won't have a stroke. It just makes it more likely and potentially delays it to a later point in life. And that could well be why Calli had her stroke at 35 instead of 25. But, again, I'm not a doctor. Just a random marketing guy.

Strokecast Gift Guide

Calli recommended the book, "Fear is a Choice" by James Connor.* James survived cancer and went on to an American  football career in the NFL. Calli found great inspiration in the book. You can find it here.*

You can also find it in the Strokecast Gift Guide. If you're looking for books by guests on the show, books related to stroke or recovery from other folks, gadgets to help with recovery, or gadgets to make life a little easier, check out the Strokecast Gift Guide.

It's a list of neat stuff with links to buy it on Amazon. You can check it out at http://Strokecast.com/GiftGuide. *

THE Game

On Sunday, September 11, 2022, the Kansas City Chiefs of the NFL journeyed to Phoenix, AZ to battle the Phoenix Cardinals, and Calli was at the game.

Congratulations, Calli, on achieving one of your main stroke recovery goals. I hope the stadium experience was everything you hoped it would be.

And to top it off, Calli's Chiefs won the game 44 to 21.

Hack of the Week

Calli suggest you let yourself feel what you feel.

So often after stroke or other trauma, we don't want to explore our feelings. We want to pretend things didn't happen or that they didn't affect us. But they did.

Denying our feelings delays dealing with them but we can't delay forever. It's like we're borrowing from the future and we'll have to pay back that emotional energy with interest.

Dealing with this stuff, though, helps us become the new person we are. I think every survivor I've talked with describes the "new me." We're transformed by stroke.

The old life is gone. We may get back to aspects of it, or parts of it, and the person we are now may (or may not) be substantially similar), but we are new. And how do we grow into that?

It starts with letting yourself feel your own feelings.

Links

Where do we go from here?

• Follow Calli on Twitter and Instagram
• Share this episode with someone you know by giving them the link http://Strokecast.com/Calli
• Subscribe to the Strokecast Newsletter at http://Strokecast.com/News
• Don't get best…get better

More thoughts from Calli

Listed in: Health

Use Robots and Ultrasound to Treat and Prevent Stroke

To effectively treat stroke and prevent stroke, you need to know just what is literally happening in a patient's head. CT Scans and MRI scans are tools most of us are familiar with. Generally if you suspect a stroke is possible, you need these two scans done.

There's another tool out there, too, that's cheaper, more portable, and involves no radiation. It's called Transcranial Doppler Ultrasound. It's a great complement to the other scans, and it can provide impressive insight to supplement the information from the radiologists. A skilled practitioner is a great complement to the care team.

I first talked about this technology in my conversation with Dr. Aaron Stayman a few years back (Is my Brain Pregnant? Ultrasound and Stroke: Transcranial Doppler Ultrasound). It's fascinating stuff.

The problem is that it does require a skilled technician or someone specifically trained in the technique. Despite the work of advocates like Dr. Stayman and Dr. Mark Rubin, there just aren't enough of those techs.

Dr. Robert Hamilton of NovaSignal has a solution. His robotic machine automates the whole process, makes it faster, more reliable, and cheaper while giving more accurate results in a lot of scenarios. The NovaSignal solution has the potential to make this technology available to patients and medical practitioners around the world.

Drs. Rubin and Hamilton join me in this episode to discuss the technology, the research, and the device itself.

If you don't see the audio player below, visit http://Strokecast.com/TCD to listen to the conversation.

Who are Drs. Rubin and Hamilton?

Dr. Mark N. Rubin is a vascular neurologist and associate professor of neurology with the University of Tennessee Health Science Center Department of Neurology. He specializes in vascular neurology and is experienced in stroke and cerebrovascular disease, and an experienced sonographer and expert interpreter of carotid duplex ultrasound and transcranial Doppler ultrasonography.

He received his medical degree from University of Illinois College of Medicine and completed his Adult Neurology residency and fellowships (Neurohospitalist and Vascular Neurology) at the Mayo Clinic.

Robert Hamilton, Ph.D. is the Chief Scientific Officer and Co-Founder of NovaSignal. He is an accomplished entrepreneur, engineer, and clinical researcher with a passion for innovative technologies that allow for increased access to care.

Robert, a biomedical engineer by training, is an expert in image/signal processing and machine learning, with extensive experience in cerebral blood flow, traumatic brain injury, stroke, and other neurological disorders. Robert co-founded NovaSignal based on technology he developed during his Ph.D.

During his tenure at the company, Robert has supported the entire lifecycle of the NovaSignal autonomous ultrasound platform from idea to commercialization with regulatory clearances in the US, Europe, and Canada. Additionally, Robert has designed and completed several clinical trials supporting the use of the technology in different neurological conditions and has acted as principal investigator on federal grants and contracts totaling more than $25M from the Department of Defense, National Institutes of Health, and the National Science Foundation. 

Finally, Robert has achieved greater than 100 citations of his work in peer-reviewed publications and conferences and holds over 50 patent assets related to the core technology developed during his PhD studies.

TCD vs Traditional Ultrasound

When most of us think of ultrasound in medicine, we think of the sonograms of developing children, where parents and doctors swear they can see a human being in those black and white lines. Personally, they seem more like those Magic Eye pictures from the 90s.

Traditional ultrasound can also capture pictures of the heart, the blood vessels in the neck, and the condition of other organs in the body. It can be another way of getting a picture of the structures at play.

And then you can frame those pictures or make them your Facebook profile picture.

TCD is different. The goal is not to capture a picture of the structures of the brain. The goal instead is to understand blood flow through the brain. The technology helps practitioners understand the rate of flow, where there may be leaks or disruptions, if stuff is flowing with the blood that shouldn't, the direction of flow, and whether things are shunting (or crossing) between the veins and arteries that shouldn't.

That shunting is at the core of the recent study NovaSignal was part of and that we talk about in this conversation.

There are several reasons shunting can occur, but one of the most common is a PFO, or a hole in the heart. I talked in more detail about just what a PFO is in the last episode here: http://Strokecast.com/Anna

TCD is a great technology for helping doctors understand the dynamic flow of blood in each individual patient. And it doesn't involve the dedicated rooms or radiation that might come with CT  or MRI Scans.

NovaGuide™ 2 Intelligent Ultrasound

The Nova Guide 2 Intelligent Ultrasound is the device we talked about in this conversation.

While TCD is a great tool, it does take a while to get the scan just right, and we face a dearth of practitioners who are able to do it.

The NovaSignal solution is simpler. It's small and automated. The device can orient itself and complete a scan much quicker than a human can. The research shows it's more accurate, too.

It doesn't take up much space in a medical facility and can easily be brought from one patient to another. Plus, an operator can perform a lot more scans per hour or get back to other tasks more quickly. With hospitals perpetually understaffed these days, that speed makes a lot of financial sense.

And since, in stroke, time is brain, it can make a lot of medical sense, too.

NovaSignal vs Transthoracic Echocardiography

The information about the presentation at the International Stroke conference is here: https://eventpilotadmin.com/web/page.php?page=IntHtml&project=ISC22&id=1176

This is the data we talked about a lot in the conversation. The NovaSignal device was significantly better at detecting the vein-artery shunts indicative of PFO and other conditions than the gold-standard  evaluation technique using Transthoracic Echocardiogram.

This matters in stroke because when we talk about shunting in tests we're usually talking about very small bubbles. Outside of the test context we're usually talking about clots and other stuff sneaking across from veins to arteries, bypassing the body's filters. When they do that they can go to the brain and cause a stroke.

Accurate detection of shunting allows physicians to make more appropriate treatment recommendations and decisions.

Hack of the Week

Cultivating a sense of gratitude, as unlikely as it may seem, is something that helps a lot of folks deal with the challenges pf post stroke life. Simply being alive means thing can get better. And being alive in the 21 century with the medical resources available is a huge asset to the community.

Of course those medical resources are not evenly distributed within the US and around the world, but they exist, and that's a start.

Develop a sense of purpose. After stroke, it can be hard to see a way forward, especially if you have severe disabilities. People who succeed in their recovery, or in their goals in general, typically have a pretty strong "Why?" driving them. Achieving their goals gets them closer to something important to them.

In the dark times, when you find yourself feeling it's just not worth it, your why -- your sense of purpose can give you a reason to push through.

We sometimes ask, "Why should I go on?" almost rhetorically to express or pain. For some folks, though, it can be an exercise to identify the things that matter to you. So ask yourself that question, but assume there is an answer. And write down everything that could be an answer.

Cultivate the sense of purpose to get through the darkness.

Links

Where do we go from here?

• To learn more about NovaSignal and the research around TCD, visit http://NovaSignal.com
• Share this link with someone you know by giving them the link http://Strokecast.com/TCD
• Share a recent win (we all have them) at 321-5Stroke or by email
• Don't get best…get better.

Listed in: Health

Yoga Teacher Finds New Life After Stroke by Going Deeper into Yoga

Anna Kerry went from yoga fan and enthusiast to Yoga teacher. Then the pandemic hit. A   year later, at age 35, she had a stroke due to as PFO.

In this episode she shares her story. She tells us how yoga got her through stroke recovery and how it informs her work today. Anna talks about the relationship between trauma and yoga, and she talks about the impact stroke has had on her life with her husband.

As Anna has gone through this journey and continued both her studies and her teaching, she developed a yoga program specifically for stroke survivors.

And Anna explores the power and near sacredness of her own yoga mat.

If you don't see the audio player below, visit http://Strokecast.com/Anna to listen to the conversation.

Who is Anna Kerry?

In Anna's own words:

I had a stroke aged 35 in March 2021. I've had a regular yoga practice for about 10 years and decided I loved the practice so much that I wanted to learn how to teach and share my love of yoga. I qualified in Aug 2020 and had only been teaching for around 7 months when I had a stroke. As the stroke came out of the blue I had to dig deep into my yoga practice to help me through and believe that my yoga practice has helped my mindset and my mental health during this traumatic time.

I'm now in a position where I want to help other stroke survivors through their recovery so I designed The Life After Stroke Programme -- a 6 week programme designed to help stroke survivors regain their life and confidence through a holistic and embodied approach to recovery.

What is a PFO?

Anna's stroke was caused by a PFO. She found that out a month after her stroke, and she will likely get it fixed eventually.

A PFO is a hole in the heart. Roughly 25% of the population has one. I have one. Guests Misha Montana and Christine Lee both had PFOs that led to their strokes.

After we are born, our blood follows a path through the heart. It comes in the right side. When the heart beats, the blood on the right side heads out of the heart to the lungs. There, it drops of CO2, picks up oxygen, filters out clots, and heads to the left side of the heart. It will pour into the left side and when the heart beats, it sends that oxygen-rich blood on to the brain and other parts of the body. Then that blood drops off its oxygen, picks up CO2, and heads back to the right side of the heart to start the whole cycle over.

Before we are born, though, the process is different. While we are developing in our mothers’ uteruses, we don’t breath air. All the oxygen and nutrients we need to build fingers and toes and kidneys and hearts and brains comes from the umbilical cord.

Since we’re not breathing air, there’s no point in sending blood to the lungs. Instead, in utero it goes straight from the right side of the heart to the left side of the heart through a hole in the middle. That hole is called a Patent Foramen Ovale, or a PFO. It normally closes on its own shortly after we are born.

A quarter of the time it doesn’t close after birth, and that allows unoxygenated, unfiltered blood to sneak across the heart, skip the lungs and drag a blood clot to the brain.

So, if you’ve had a stroke, and you have a PFO, should you have surgery to close that hole?

Maybe.

Christine and Misha had their PFOs closed. I did not. Anna is waiting to get her PFO closed.

I talked about this issue in a lot more detail with Dr. David Thaler. You can listen to that conversation at http://Strokecast.com/pfo.

A Place of Her Own

Anna Kerry has a special place in this world -- it's her yoga mat.

At first glance, it's just a piece of material, but once she is on her mat it becomes a portal to take her to another special place.

The mat allows her to center herself. It's a place she can experience joy and agony; happiness and anger; tears and laughter; and everything in between. When Anna is on her mat she can take a break from the rest of the world so that she can deal with the rest of the world. It triggers a mind shift to put her in a place where she can process things and, well, do yoga.

Lots of us have things like a yoga mat. Maybe it's a special blanket or a childhood toy. Maybe it's a trinket that takes us back to a trip we took years ago or it's a gift from a lover or friend. Perhaps it’s a special chair that holds our memories of the past.

Once we touch or engage with that thing -- whatever it is -- we can feel a change in our own energy.

Is that a bit woo-woo? Not really. Perhaps it is a metaphysical portal to a different plane of time and energy.

Or perhaps it's another example of the core principle of neuroplasticity -- cell that fire together, wire together.

Our brains work on patterns and shortcuts. That's why therapy works. The more repetitions w get in PT, OT, or Speech Therapy, the more we drive new neural pathways so we can walk, speak, or bake cookies again. Repeating a process reinforces those connections until we can almost do it automatically.

A special place -- like Anna's yoga mat -- can do that, too. Sitting down on that mat can kick off those routines in the brain that shift us to a different place. The object starts the program running in our brains, and our brains do the rest.

And the really great thing about Anna's yoga mat is that when life dictates, she can roll up her special place and take it with her.

Other Yoga Themed Episodes

Teaching Yoga after a Stroke with Leslie Hadley

 Leslie Hadley went from Corporate executive to yoga teacher to stroke survivor and back to yoga teacher. Along the way she added life coach and tapping expert to her repertoire. She joins us in this episode to share her journey and explain what tapping and the Emotional Freedom technique is.

Stroke, Naps, Gratitude, and Yoga with News Anchor Kristen Aguirre

Kristen worked as a news anchor in Denver, survived a stroke, and was fired. She worked to pick up the pieces of her life, returned to the anchor desk back east and found gratitude is the key.

Win of the Week

Shelly shared her win of the week with us. You can hear it in the episode. Here's what she had to say:

My name is Shelly, and I had a stroke four months ago.

I was at the hospital for two weeks of acute rehab. I came home in a wheelchair, but I've been working really hard, and this week I did my farthest walk -- 4.2 miles.

Things are still not 100% for sure. My arm isn't working that well. I can't feel in the arm.

But the leg -- I've just been walking so much that I think things have improved. The more I've done, the more I think things improve.

I didn't understand that when I first had the stroke. In physical therapy, when they would say that I could learn to walk without feeling, but as I've done it and now people can't always tell that I had a stroke when I walk, so that's been exciting for me.

Thanks for letting us be part of your recovery, Shelly!

What is a recent win you've had?

Maybe you walked a lot. Or said a complete paragraph out loud. Or got a new job. Or slept a whole night. Or chewed and swallowed regular food without incident. Or booked a new OT appointment.

I want to know what's gone well with you, big or small. And I want to share it with the listeners.

You can record a brief message telling me who you are, when your stroke was and what you accomplished. You can do this with the voice memo feature on your phone or another recording process and email that recording to Bill@strokecast.com.

Or you can do it the simple way. Simply call (321) 5stroke, any time day or night, and leave a voicemail describing your win.

I'll share wins in future episodes so we can all celebrate with you.

Hack of the Week

Anna explained we need to take time to check in with ourselves. Yoga breathwork is one way to do that. It doesn't need to be yoga, though. Anna offered 3 key ways to do this.

First, don't shy away from your feelings. A therapist can help you explore them further.

Stroke is trauma. Grieving is natural. Clinical Depression is a common result of stroke (see http://Strokecast.com/depression for more information). It's a major life change and it's perfectly normal to feel feelings about it.

Ignoring them won't make them better. Therapists can help. Neuropsychologists are also available with special training to help folks with brain injuries (see http://Strokecast.com/karen for more details).

Second, acknowledge and recognize anger, anxiety, and other uncomfortable feelings. Those feelings are trying to tell you something. Talk to your anxiety like it's a small child. It wants attention and it's throwing a tantrum. Why?

Third, offer yourself kindness and compassion. You're not an expert in this new body, brain, and life. You'll get things wrong, and that's okay. Forgive yourself for not having it all figured out.

Links

Where do we go from here?

• To learn more about Anna Kerry and her work, follow her on Instagram @theikosyoga and check out her website at https://theikosyoga.com/.
• Share this episode with someone you know by giving them the link http://Strokecast.com/Anna
• Send in your win of the week to Bill@Strokecast.com or call 321-5stroke
• Don't get best…get better.

Listed in: Health

Dark Moon Shine: Stroke Dialogues from Jeri and her Dad

Jeri Goldstein built an online business coaching musicians who want to book more gigs. After all, success as a musician requires working in the music business. Many aspiring stars are hugely talented with the music side, but not so much the business side. Jeri helps them.

Then the phone call came, and Jeri's life changed. It a good thing her business was highly portable

Her father survived a massive stroke, so Jeri did what she had to do. She packed up the car and the dog and headed down to Florida to help her family navigate the post stroke world and learn to adapt to her father's aphasia.

Jeri chronicled her experience with her dad in her book Stroke Dialogues: Conversations with Dad*. She sent me a copy, and we talked about her experience in this conversation. And she explains what "Dark Moon Shine" is all about.

If you don't see the audio player below, visit http://Strokecast.com/MSN/Jeri to listen to the conversation.

Who is Jeri Goldstein?

Jeri Goldstein is a career development coach for professional performing artists and entertainment industry professionals. She coaches musicians performing in all genres of music from traditional acoustic to jazz, classical to world music, children’s music to blues and rock and hip-hop to rap. Jeri has also worked with authors, actors, storytellers, visual artists, and other small business owners. Her specialty is to help her clients discover their unique niche market and to create strategic business and marketing plans.

For twenty years, she was a booking agent and artist manager for touring artists on the acoustic music circuit. She worked with musicians, actors, and dancers.

She is a music and book publisher. In addition to Stroke Dialogues*, Jeri has written two other books. Her award-winning book, How To Be Your Own Booking Agent THE Musician’s & Performing Artists Guide To Successful Touring*, is used by musicians world-wide and has been a textbook used in music business courses throughout the U.S. and Canada. It reached #1 on Amazon in the Music Business category and has sold over 60,000 copies world-wide. The Tiny Guide to Huge Success* is a collection of 100 blog posts taken from thirteen years of over 650 entries designed to help performing artists build and maintain a successful touring career.

Jeri presents in-person seminars and keynote lectures at universities, conferences and for businesses and organizations in the music and entertainment industries. Her online course Booking & Touring Success Strategies & Secrets has been taken by hundreds of professional touring artists.

In 2020 she launched her first podcast, Get Great Gigs which featured interviews with artists and other entertainment industry professionals that discussed inspiring career strategies before and during the COVID-19 pandemic.

Jeri began her internet-based business in 2008. Her use of internet marketing strategies and social media provided the perfect platform for her to work from anywhere. In November 2012, she set up shop in Florida to be with her dad during his recovery from a stroke. After selling her home in Charlottesville, VA, she relocated to Delray Beach, FL permanently in August 2015 and continues to live there today.

Homunculus

The homunculus is a representation of the brain and various parts of the body. The more you use a part of the body, the more neurons it takes up in the brain. For example, the hands and tongue take up more space in the than the elbow and pinkie toe.

The more time and energy you dedicate to something, the more space in your brain is dedicated to that task. For example, a homunculus of my brain would likely show a much larger segment dedicated to speaking than to throwing a baseball.

One way I think about how this applies to survivors (and I may be stretching the homunculus analogy) is that a skill from the prestroke days that a survivor was an expert at may come back before a skill one had limited experience with simply because despite the damage there were simply more nerves dedicated to it.

In the case of Jeri's dad, we have someone who lived a life of numbers. When he lost his words and names with aphasia, he still had numbers.

As you continue to work on a skill post stroke, a larger portion of the brain will be dedicated to it. More nerves, dendrites, and synapses will become involved. This is neuroplasticity at work.

Negotiation

Jeri talked a little about negotiation in this conversation. It's an important skill. It's also important to recognize that negotiation isn't just about resolving an argument. It's a process of working with others to meet everyone's needs as much as possible.

When folks are in a negotiation, it's helpful to articulate and understand priorities and preferences for all participants. And that involves knowing what you care about and why you care about it.

Understanding that "why" is the thing that will keep you open to new and even better solutions.

Self-Publishing and Know your Audience

Jeri self-published her book because she knew her audience. She also knew the process and had done it before when it was a lot harder. The key, though, is she knew the audience.

When selling a book in a hyper-niche space, an independent writer or small, specialized publishing house can have a lot of success.

I like this approach a lot. Often authors self-publish for control because traditional publishers aren't interested. There are plenty of other reasons, too, as previous guests have described.

From a traditional marketing and sales perspective, Jeri started with her audience -- her customers. She knows who will buy her book, and then worked backwards from there, asking, "What is the best way to get this book in their hands?" She concluded that a major publisher would not be as effective with their focus on big retailers.

As an entrepreneur who has sales and marketing skills, she knew she could more effectively reach the niche audience of the stroke world. She opted to self-publish.

Cluster Brainstorming

Cluster brainstorming is a way to identify things that you find important and to drill down on those ideas to get more clarity.

It starts with an idea and then you define that idea in greater detail. And then you go into those definitions and try to understand the.

For example, maybe a goal is to recover from stroke. What does that mean? My successful recovery may look very different from that of a more athletic individual who lived for sports, hiking, and lifting heavy things.

Cluster brainstorming helps you unpack that. You start by writing a word or goal that matters to you. Then you start writing down words associated with that first one. Then you take the most interesting of the words you wrote down and do the same things for those.

At the end of the process, you have a whole bunch of thoughts and ideas on the page, and these are the things that matter to you. These can define the "Why" of your recovery. You can see how smaller or more tactical items. It's easier to do an exercise or activity when it's clear how that exercise or activity fits into the broader picture of your life.

The brainstorming activity can help you identify your priorities, but it's all just a pretty paper until you put it into action and turn these ideas and concepts in the SMART goals that can drive your recovery. You can learn more about SMART goals in episode 86 on this page.

The Tongue Twister

When you're positive and patient,

When you are persistent in practice,

Full recovery is possible

and anything is possible.

That simple tongue twister is one of the tools Jeri worked out for her dad. He needed practice pronouncing his Ps and this did the trick. It also had the extra benefit of providing a positive perspective on his present predicament.

Repeating phrases like this also help you to believe it. It's the repetition that drives neuroplasticity.

It's also a good phrase o use to practice your mic technique for a podcast to keep your plosives under control

Win of the Week

I walked more than 6000 steps in one day during a weekend getaway with my GF. It's quite a bit considering my pace, brace, and cane.

You hear a lot about my wins and my guests' wins on the show. Now, I want to hear about yours.

I'm starting a new feature called the win of the week, and I want to know what went well for you.

Maybe you walked a lot. Or said a complete paragraph out loud. Or got a new job. Or slept a whole night. Or chewed and swallowed regular food without incident. Or booked a new OT appointment.

I want to know what's gone well with you, big or small. And I want to share it with the listeners.

You can record a brief message telling me who you are, when your stroke was and what you accomplished. You can do this with the voice memo feature on your phone or another recording process and email that recording to Bill@strokecast.com.

Or you can do it the simple way. Simply call (321) 5stroke, any time day or night, and leave a voicemail describing your win.

I'll choose from the wins and share my favorites in future episodes so we can all celebrate with you.

Hack of the Week

Jeri cited 3 tips for helping and empowering her dad in his recovery.

First, she placed Labels around the house on objects to help her dad recognize and retain the names. This is similar to the approach that Anna Teal took with her husband is making lists of seasonal phrases to stick on the refrigerator. The reminders and repetition can help rebuild those neural pathways.

Jeri's dad also liked games and puzzles. Playing Bridge with his friends was a highlight of his day before stroke and relearning it after stroke was a priority. It was also an important way to help him interact with friends beyond his immediate family.

Working on puzzles is great practice after stroke. It works on skills around visual processing, pattern recognition, logical and process thinking, and, of course, manual dexterity. Can assembling puzzles solve the missing piece of recovery?

The most important element, though, was letting her dad drive his recovery. Identifying his priorities and his concerns and making them the focus of his recovery efforts kept him involved in his recovery. The more interested we are in the activities of therapy and the goals of therapy, the more likely we are to do the activities of therapy.

Plus, making sure the survivor has agency in this process matters. Because therapy is not something done to a survivor. It's something done by a survivor.

Links

Where do we go from here?

• Learn more about Jeri's book, Stroke Dialogues at http://StrokeDialogues.com.
• Learn more about Jeri's coaching and her podcast at https://performingbiz.com/.
• Share this link with someone you know by giving them the link http://Strokecast.com/jeri.
• Share your win of the week by calling 321-5Stroke (321-578-7653) or record a voice memo and email it to Bill@Strokecast.com.
• Don't get best…get better.

Listed in: Health

Listed in: Health

Stroke from a Genetic Condition Ended this Entrepreneur's Dream & Drove a New One

Depression sucks, and it lies. It's a life threatening condition that affects a lot of stroke survivors and can block their recoveries.

In 2010, business owner Keith Taylor survived a stroke. A rare genetic condition meant that the arteries and veins in his body don't always connect the way they're supposed. It's called Hereditary hemorrhagic telangiectasia (HHT). One day, that flawed connection leaked and began killing brain cell.

Keith began his journey through the stroke care system of the time, into the depths of depression, leaving the business he planned his life around  and to the life he lives today helping stroke survivors in Central Oregon and around the world live their best lives. He shares his journey in today's episode.

If you don't see the audio player below, visit http://Strokecast.com/MSN/Keith

Who is Keith Taylor?

Keith Taylor runs Strength After Stroke

Keith Taylor is a deeply passionate, and dedicated leader in the stroke community. He is dedicated to helping stroke survivors regain their own power and strength to live a full and productive life. While owning and being the sales manager of a large manufacturing business in Oregon, he had a stroke at the age of 48. After looking for, and not finding, anyone to help with the depression and lack of confidence after his stroke, he decided to create that for other stroke survivors.

He is President of the Board of Directors with Stroke Awareness Oregon and is the owner of Strength after Stroke; a company dedicated to providing resources for stroke survivors to re-ignite their desires and regain their confidence.

What is HHT?

HHT stands for Hereditary hemorrhagic telangiectasia. That tells most of us…absolutely nothing.

The condition impacts the way the blood vessels in our body connect.

When the circulatory system works properly, blood flows from the heart under high pressure through the arteries to deliver oxygen and nutrients to the organs throughout the body. One big artery (the aorta) comes off the heart and splits into smaller and smaller arteries that carry blood to the kidneys, the toes, the brain, and every other part. The arteries are built to withstand the blood pressure.

Veins take blood from the organs and bring it back to the heart. Along the way, the deliver carbon dioxide to the lungs and waste material to the kidneys, liver, and other disposal sites. The blood is no longer under such high pressure at this point.

In between, there are capillaries. These are the tiny, thin blood vessels that allow oxygen and nutrients to pass from the blood to the organs and for carbon dioxide to pass back. Arteries branch smaller and smaller and thinner and thinner to become this huge network of capillaries, which the consolidate and get bigger and bigger until they become veins. Meanwhile, that branching down and consolidating up reduces the pressure on the blood in the system

In a patient with HHT, those capillaries don't always form where they are supposed to. Instead, the arteries will connect directly to the veins. These malformations are weak spots since the veins may not be able to handle the pressure of the blood coming into them. These AVMs, or arterial-venous malformations can then rupture or leak resulting in a hemorrhagic stroke.

You can learn more about HHT at the CDC's website here: https://www.cdc.gov/ncbddd/hht/index.html#:~:text=HHT%20is%20a%20disorder%20in,present%20between%20arteries%20and%20veins.

HHT is not the only cause of AVMs but it is an important one.

Nosebleeds

Nosebleeds are an important signal that something may be wrong. Frequent or regular nosebleeds are something to discuss with your doctor.

Nosebleeds are a common indicator of HHT. Someone who has HHT will need to keep on top of their monitoring to reduce the chances of a dangerous stroke or other conditions. HHT by itself doesn't have many visible symptoms so nosebleeds can be a good flag.

In my case, it was nosebleeds that revealed my high blood pressure, which remains one of the top causes of stroke. The problem, of course, with high blood pressure is that it doesn't hurt. Unless you're checking it, you won't know you have it. Nosebleeds, however, are one powerful indicator.

If you or someone you care about has frequent nosebleeds, discuss it with your doctor. There can be lots of different causes, but often the nosebleed is the least severe consequence of that cause.

Depression Lies

I talk about depression a lot on the show because it is a big deal and stroke has been shown to cause depression. Depression can be a deadly disease.

It can also tell us not to get out of bed. Or to skip our exercises. Or to question if we should even be here. Or try to convince us we are a burden to the people who love us.

Depression interferes with our recovery, our energy, our relationships, and our view of the future.

But always remember the biggest fact about depression: Depression lies. All the time.

I first encountered this concept while reading a blog post from writer, actor, and professional geek Wil Wheaton. You can see that post at http://Strokecast.com/DepressionLies

When depression says we shouldn’t get out of bed or off the couch, depression lies.

When depression tells us our friends and families wish we weren't there, depression lies.

When depression tells us to skip therapy because it doesn't matter, depression lies.

Don't listen to the liar that is depression. Help is available. Your doctor therapist will be happy to point you in the right direction.

Hack of the Week

When you forget a name or word, channel your inner Elsa, and let it go. Just relax. It's okay to struggle with names and words. People you deal with will be okay with it. The more you stress about it, the harder it will be to remember and the more likely you are to struggle with other words, too.

Often we worry about what strangers will think about us when we are out and about, but the thing is they don't really care. Everyone we see is caught up in their own fear that everyone is judging them that they don't have the attention or energy to actually judge others.

If you think someone does give you a dirty look or something like that, remind yourself that their probably thinking about that cringey thing they said at their 8th grade dance. Somehow it just smacks them at random from the depths of their memory.

But the key is that's it's not about you. So relax.

And let it go.

Links

Where do we go from here?

• Check out Keith's work at http://StrengthAfterStroke.org
• Share this episode with someone you know by giving them the link http://Strokecast.com/Keith
• Subscribe to the free Strokecast newsletter at http://Strokecast.com/News
• Don't get best…get better.

Listed in: Health

Life Coach Survived 2 Strokes and a TBI

Julie Kuch had her first stroke in 2009 when she was 30. No one believed her at the time, and she had to convince a neurologist to order an MRI before the medical system began to take her seriously.

And once they did take her seriously, the system still didn't offer Julie rehab or even education about how to live life as a stroke survivor.

Several years later, Julie had a do-over -- her second stroke. Oh, and she through in a TBI in between.

Between her strokes, Julie created the services she wished she had for her own stroke. She became a life coach for brain injury survivors.

To learn just what a life coach does, how their services help, and how Julie built this life, listen to this episode.

If you don't see the audio player below, visit http://Strokecast.com/Julie to listen to the conversation.

Who is Julie Kuch?

Julie is a concussion and stroke survivor. She is a Life Coach for people who have had a brain injury. She has helped 100’s of people find joy and purpose in life again.

Julie has survived to strokes and a TBI. Her second stroke was in January 2022. She is currently recovering (very well) from this, her third brain injury. The experience has Julie feeling more passionate than ever that part of her mission in this life is to help as many people as possible recover and feel better than before their brain injury.

Julie is grateful for her brain injuries and the valuable lessons they have given her.

Julie wants everyone that has experienced a TBI to feel the same, and she know they can. Julie says, "So much of the suffering we go through recovering from brain injuries is not necessary. I teach my clients how to transform from feeling resentful, frustrated, angry, shameful and depressed about the state of their life to feeling accepting, loving, and at peace about themselves and their capacity after a brain injury."

Julie certified as a Life Coach through The Life Coach School.

A Go Getter Gets Depression

Depression is a topic we don't talk about often enough. It's a common stroke deficit, like hemiparesis and aphasia. It interferes with recovery and exercise routines.

And it’s not just feeling sad or mourning the end of your previous life. It's a genuine problem that burns energy and can make it even harder to get out of bed and do PT. Or do the basics of taking care of ourselves.

Last year, I talked with Dr. Laura Stein from Mount Sanai in New York. She talked about new research showing that stroke itself causes major depression, and not just the impacts of stroke.

In 2009, no one told Julie she might encounter depression. We also had less overall public awareness about depression. And when it did hit Julie, she was not prepared to deal with it. She had to deal with her own limiting beliefs about antidepressant medication and about people with depression.

Julie talks about the shame and embarrassment she had around her treatment. By 2022, she was better prepared to deal with it.

Depression, like stroke, can happen to anyone. It can be a deadly condition. And like any other stroke deficit, it's nothing to be ashamed of.

We can know that, but that doesn't guarantee we'll believe that.

Why drive during a stroke?

Julie had her stroke while she was driving to the doctor's office. But she didn't pull over and call an ambulance.

Jo Ann Glim had her stroke in a deli while trying to fix an office sandwich crisis.

Misha Montana drove back to Reno while having a stroke.

James Horton drove home while having a stroke,

Driving while experiencing a stroke is a terrible idea. It's dangerous. It's difficult.

The problem is that we rely on our brains to evaluate every situation of every minute of every day. In a stroke, though, the brain is under attack. Millions of brain cells are dying every minute. Various parts are scrambling in panic mode to figure out what is happening, what no longer works, and what to do next.

The part that should tell us what common sense is has become the part that is broken.

So, what can we do?

We talk about neuroplasticity as how we recover after stroke. The core principle is, "Cells that fire together, wire together." 

It's not just recovery, though. Neuroplasticity governs how we learn. We say things like "Practice makes perfect" because doing something repeatedly is often how we learn it. Practice IS the firing together of neuroplasticity. The more we repeat a thing, the more resilient the connections in our brains become. The bigger they become. The more permanent they become.

If you grew up in the US and I say, "I pledge allegiance…" you probably immediately want to say, "to the flag."

If you grew up Catholic and I say, "In the name of the father," you probably felt the urge to touch your forehead.

These are patterns we developed over years of repetition.

Here's how this impacts driving. By repeating BE FAST early and often, we internalize not only the most common symptoms of stroke, but also the action. T = Time to call an ambulance.

B – a sudden loss of or change in balance

E – a sudden change in or loss of eyesight or vision

F – single side face droop

A – in ability to hold both arms up

S – loss of or change in speech, vocabulary, or ability to process language

T – Any of this means it is time to call an ambulance

BE FAST = Balance, Eyes, Face, Arms, Speech, Time to call an ambulance.

Repeat it until "Time to call an ambulance" is as ingrained as the sign of the cross or the pledge of allegiance. In a crisis, that may then be the course of action the dying brain grabs on to.

Helmets Save Lives

Julie told the story of her concussion during the conversation. This is a picture of the helmet she was wearing at the time.

Yes, she still suffered a traumatic brain injury in the accident, but the helmet took the brunt of it. When you look at the dent in that image, it might not look too dramatic, but if you take another look and then imagine what that would look like on someone's head.

Now that's terrifying.

What is a Life coach?

Julie is a Life Coach for brain injury survivors. But what does that mean?

As Julie describes it, she helps live their best life. In some respects, it's similar to what a mental health professional does, but to a lesser degree.

A life coach helps a client develop practical skills for life within the context of the coach's expertise.

A big part of Julies work is helping folks understand the difference between facts and thoughts. Often, we assume that our thoughts are facts, and that causes problems. Saying it's 73 degrees is a fact. Saying it's too warm to do PT is an opinion or a thought. When we act on thoughts like that, we can limit our recovery.

Many of us have limiting beliefs about our abilities, relationships, money, and more. Those limiting beliefs are things that we have convinced ourselves are facts when in reality they are not. And yet they have become part of the way our brain interprets the world due to neuro plasticity.

A life coach like Julie helps clients unpack those limiting beliefs and jettison the ones that don't work. Freeing yourself from your limiting beliefs allows you to achieve more.

While a life coach is not a replacement for a psychologist, they can still help people live better lives.

Hack of the Week

There are three tools that helped Julie with the mindset of recovery that she uses with her clients,

First, mourn the life that could have been.

After a brain injury, life will be different. We are different. Some disabilities may be short term while others are long term. It's okay to be sad and disappointed. Getting stuck in sadness and disappointment won't undo the injury, though. It will only delay your entry in a new and possibly amazing life.

Taking time to mourn the life that could have been can help you move on to the life yet to be.

Second, receive the gift of rest.

Rest and sleep are important, yet many of us flee from them (myself included too many times). That's where much of the work of healing happens though. A brain focused on just getting to the next big thing isn't taking the time it needs to prepare for the next big thing. Take the time to rest and recover.

Third, manage your thoughts.

The key principle behind Julie's coaching is that thoughts and opinions direct our actions and beliefs. We think they are immutable, but they are not. We can change them. We can decide which ones to dwell on.

The core idea of neuroplasticity is that "nerves that fire together, wire together." PT, OT, and Speech Therapy are governed by this theory. It's why we have to do thousands of repetitions to rediscover our limbs and build new pathways in our brains.

And it's why dwelling and revisiting unhelpful thoughts is not helpful. The more often we think something or repeat a belief, the more the nerves will wire that thought or belief, giving the brain a shortcut to that thought or belief.

Make sure you leverage the power of neuroplasticity to bring good things into your life.

Better year for Geek Movies: 1982 or 1989?

I was just on the Caffeinated Comics Podcast where we discussed this question along with the trends that transformed movies through the 80s. From Bladerunner to Batman, and Tron to the Little Mermaid, a lot of amazing movies came out in those years.

You can hear us discuss it on the podcast here: https://radiomisfits.com/cc286/

Or you can listen and watch on YouTube right here:

Links

Where do we go from here?

• To learn more about Julie's coaching programs visit http://JulieKuchCoaching.com. Follow Julie on Instagram to stay on top of her recovery and see her videos.
• Share this episode with someone you know by giving them the link http://Strokecast.com/Julie
• Subscribe to the Strokecast newsletter at http://Strokecast.com/news
• Don't get best…get better

Listed in: Health

Stress, Stroke, and Hormones

What is stress and how does it impact stroke recovery? In this episode, I talk with Speech Language Pathologist, Wellness coach, and endocrinology expert Michelle rusk about the nature of stress and the role of Cortisol in our bodies.

Modern life is stressful enough without contending with stroke and recovery. Add more mundane and major sources of stress to our lives on a daily basis drives out bodies to a continuous state of Fight, Flight, or Freeze. Overtime, that causes more health problems, which introduces more stress to the system

Breaking the cycle of stress requires that we understand more about it and  just how it impacts our bodies.

If you don't see the audio player below, visit http://Strokecast.com/Stress to listen to the conversation

Who is Michelle Rusk?

Michelle Rusk is a North Carolina based Speech Language Pathologist, licensed to treat patients in North Carolina and Virginia. She is also a Wellness Coach and Dutch Test practitioner working with clients from all over.

She owns and operates Coastal Speech Therapy and Wellness. Coastal Speech Therapy & Wellness is a private practice offering virtual therapy throughout Virginia and North Carolina for those with brain injury. She serves patients as a therapist, certified brain and hormone health coach, and DUTCH test practitioner.

What is Cortisol?

Cortisol is one of the body's stress hormones. When an emergency arises, the body dumps cortisol into the system to increase blood pressure, blood sugar, and other mechanisms that give us extra resources to run away or fight a threat.

Humans have been around for about 100,000 years. Up until the last hundred years or so, that system worked fine. Modern life though, for all the wonderful and amazing things it offers, introduces a lot of low level stress that builds and builds.

In response, our bodies push more cortisol into the system. We end up living with a higher level of cortisol than we were ever meant to. That contributes to a whole array of health issues.

As Michelle explains, the way to address that is with lifestyle changes,

What is the Dutch test?

Michelle uses the Dutch test with her wellness patients. It's a urine test that assesses the levels of hormones in a person's system, with cortisol being the big one.

The company actually offers a variety of tests that work in different ways to assess hormone levels. You collect the samples at home, send them off to the lab, and then get the detailed results.

You can learn a lot more about the tests and see sample reports at http://DutchTest.com.

Once you get results, you should discuss them with your doctor or medical team. Actually, it's probably a good idea to talk with your medical team first because these tests can cost several hundred dollars and generally won't be covered by health insurance.

Social Wellness Groups

Michelle's comments on social wellness groups are also interesting.

An online or in person stroke support group is a powerful thing. There's a lot of value in connecting with other survivors. It's not just about getting tips for living with stroke or learning about local resources, though.

It's about the community.

Often we can go through our days isolated. Most of the people we talk to have not experienced a stroke. They can't understand our experience.

In a support group, though, we're around people who do "get it." And that's a big deal.

A social wellness group takes that to another level. There are the benefits of the community, sure, but there's the added benefit of the instructor led skill development. Michelle is able to coach conversational norms, among other things, to help reduce the sense of isolation out in the real world.

Michelle on Discharge Day

Michelle mentioned how amazing discharge day is, even if it is tinged with sadness as the relationship changes. Here's the post she mentioned: https://www.instagram.com/p/CcQuULsOABh/

Mimi Hayes Kick Starter

Mimi Hays survived a stroke shortly into her first job as a teacher in her twenties. She had a ridiculous amount of trouble getting treatment which still makes me angry. So naturally, she turned to a career in comedy, and she's a delight. We talked all about her adventures here: http://Strokecast.com//mimi

Mimi has performed all sorts of places, including the massive Edinburgh Fringe Festival in Scotland. Now she's trying to get back to Fringe and has launched a KickStarter to do that. It's open until July 9, 2022.

Check it out here, and follow Mimi on social for fabulous minutes throughout the day.

Hacks of the Week

Michelle had three different hacks to share with us this week

First, don't isolate yourself. You don't have to do recovery alone. From the therapists to the doctors to the other patients to family and friends, there are people who want to be there on the journey with you. Let them, and invite them.

I always say the stroke club is full of cool kids. But the dues really suck!

Second, find therapy in everyday life. Whether that's trying to use an affected hand to turn on a light or finding reason to speak just a few more words, the therapy that really matters isn't taking place on a mat table (though that helps). It's taking place when you do or attempt to do the tasks in life that have the potential to bring you joy.

Third, don't guess. Dutch Test. To understand what is going on with your hormones, start by knowing what those levels are. Then you and your medical team can discuss the lifestyle changes that can be most helpful.

Links

Where do we go from here?

• To learn more about Michelle, her work, or the Dutch Test, visit https://www.coastalstw.com/
• Do you know someone with stress in their life? Or who might otherwise enjoy this episode? Tell them to listen at http://Strokecast.com/Stress
• Subscribe to the free Strokecast newsletter at http://Strokecast.com/news
• Don't get best…get better.

Listed in: Health

The Stroke Artist: A Tale of Survival, Painting, and Urology

Often we tend to think of "patients" and "providers." While sometime we may accuse medical teams of forgetting that their patients are whole human beings and not just a wrist band and chart in a hospital bed, it works the other way, too. We sometimes forget that our doctors are more than white coats adjusting out medications and asking who the president is -- again.

But doctors are, in fact, human. And they can create art. And they can have strokes.

Dr. Bevan Choate, MD, was a surgeon and urologist just enter the heart (or kidney) of his career. One morning, everything changed. He shares his story of the past 18 month in this episode.

(If you don't see the audio player below, visit http://Strokecast.com/Bevan to listen.)

Who is Dr. Bevan Choate, MD?

Bevan was bornin 1985 in San Angelo, TX.  What do you do when you are born in San Angelo, TX? You grow up on a horse. As Bevan says:

"I grew up in a cattle ranching family.  Cowboying since I could ride a horse but perhaps due to the Waylon and Willie song, they didn’t want me to grow up to be a cowboy. So, I was given all the odd and less glamorous jobs.

I realized about midway through undergrad that I wanted to be a doctor.  I was always a science geek at heart, and figured medicine to be a pure and noble application of science.

I excelled in medical school and completed my five-year Urology residency in Albuquerque at the University of New Mexico Hospital.  It was the roughest five years of my entire life.  Being a sleepless subordinate for almost two thousand days is a tough pill to swallow.  Nonetheless, I persevered and began practicing Urology in Albuquerque.  It was my calling.  I love it.  I love my patients and some of them even love me.  I did quite a bit of oncologic surgery and got good at robotic surgery using the Da Vinci robot. "

Things changed for Bevan on December 3, 2020. That's when a left vertebral artery dissection threw a clot that lodged in the left part of his cerebellar and proceeded to kill millions of valuable brain cells.

The dissection has no "attributable etiology." That's how doctors write a shoulder shrug emoji. No one knows why it happened. Bevan just got lucky.

The surgeons who were not Bevan got to work. His procedures included a ventricular shunt, a craniectomy, and a left cerebellar strokectomy (surgical excision of infarcted brain tissue post-stroke with preservation of skull integrity, distinguishing it from decompressive hemicraniectomy).

As Bevan says, "Yep, I have about 80-85% of a brain.  Not playing with a full deck"

Following this adventure, Bevan contended with:

• Acute Deficits
  • Double vision
  • Visual impairment
  • Vertigo
  • Left-sided ataxia
  • Loss of left fine motor function
  • Inability to walk or balance
• Chronic Deficits
  • Loss of left fine motor function
  • Balance issues
  • Right sided stroke neuropathy
  • Left-sided ataxia

Since then, he's accomplished some impressive things, not the least of which are living and walking. He's also become a published author and a professional artist.

He's also still practicing medicine and seeing patients. The laser may need to wait a little while though.

It's been quite the year and a half.

Typing around a Stroke

People approach their stroke recovery in different ways. Bevan and Michael Schutt both launched their writing projects to learn to type with their affected side again.

My approach to typing was the opposite. Instead of forcing my left hand to the keyboard, I wanted to get faster more quickly. I taught myself to type more quickly with one hand. I'm currently at about 34 wpm (average for two-handed typists is about 44 wpm).

Has that slowed my recovery? Maybe. Recovery is a delicate balance of accepting a disability and fighting that disability. Too far in one direction is not great for living the best life possible for many folks.

Of course, every stroke is different. I can admire the approach others took without feeling mine was wrong. Especially since my fingers are still (slowly) coming back.

And if they don't, that's fine, too.

Why write?

Bevan started writing his book to collect anecdotes. It's so easy to forget the details of an event with time, especially if we don't realize at the moment how important they might be. The very acting of writing or typing them out gives them a stronger hold in our memory. Every time we read them again, we can reinforce that hold they have. We can extract more incite from them.

You don't have to write a book, though. When I was in the hospital, I tried to post at least one anecdote from the day every day to Facebook. Part of that was to keep people informed of my status. Part was my compulsion to entertain folks and make sure they got value from check in on me (that's something I should probably unpack at some point). Part of it was to chronicle what I was going through for future reference.

In Bevan's case, doing that led to "The Stroke Artist."* It's his memoir of his stroke experience as a doctor who returns to the art he enjoyed, then made it a second profession. The varied paths stroke take us on never cease to amaze.

You can find Bevan's book on Amazon here. *

So write down your stories. Maybe it's just a collection of random anecdotes and paragraphs without a plan. Maybe it's all jumbled in time. If you can physically write, record video or audio. Or take pictures. Or tell your stories to someone else.

The stories we tell connect us with the world across the ages, going both backwards and forwards in time.

As the 11th Doctor said, "We're all stories in the end."

Bevan's Art

Bevan started creating art just to create art. That's probably the best reason to do it.

When I started blogging in 2006, it was because I realized I hadn't written anything that wasn't an email or a PowerPoint slide in years and I needed to write for the sake of writing. Of course, that set me on the path to where I am today, but that's not really the point I'm trying to make here.

Bevan returned to art after stroke and before long, he was selling art online. You can browse his work and even make a purchase at his website. You can find that here.

https://artrepreneur.com/showroom/q3GhqiFsYA2jL75iy

The relationship between stroke and art is fascinating. It gets into the physical changes in the brain brought on by stroke, the lifestyle changes we are forced to make, and the shift in our own priorities and world view after stroke. Bevan and I talked about some of that in our conversation. If you found that discussion interesting, I'd also encourage you to listen to my conversation with Seattle artist and survivor Seth Ian Scheer from 2019.

Stroke Strides Support Group

The Stroke Strides support group is a virtual group, based at Multicare Good Samaritan Hospital in Western Washington. They are looking for survivors who would like to speak to their group individually or as part of a panel. If you are looking for channels to share your story, this is a nice one. The last time I did it the group was fairly small, which means it's great if you want to get started speaking to other groups.

They are starting up their next series of talks in July 2022, and I'll be part of that. If you'd like to join as well, reach out to Kristin Olson (ktolson@multicare.org) for more details.

Hack of the Week

Big goals can be inspiring, but they can also be hard to achieve. To really kick start your recovery, set small, simple goals. Work towards small improvements. Those small goals and habits over time add up to big things. That's how you ultimately achieve success.

Bevan's hack align nicely with my regular mantra: Don't get best…get better.

Links

Where do we go from here?

• Pick up a new painting for your wall here, and check out Bevan's book, The Stroke Artist, here.
• Follow Bevan on Instagram @BevanChoate.
• Tell someone you know about this episode and give them the link http://Strokecast.com/Bevan so they can enjoy it, too.
• Subscribe to the free Strokecast email newsletter at http://Strokecast.com/News.
• Don't get best…get better.

Listed in: Health

5th Strokeaversary

June 3, 2022, was my fifth Strokeaversary.

It's an important milestone. My risk for a second stroke is now statistically lower, but that not why this matters. It's not about celebrating experiencing a stroke. It celebrating survival and recovery. It's about coming back from a battle with my own blood vessels both damaged and enriched.

It's complicated. But that blood clot on the morning of June 3, 2017, changed the direction of my life for good.

In this solo episode I share some more thoughts and feelings about my experience.

If you don't see the audio player below, visit http://Strokecast.com/Five

Don't get best…get better

I end every episode and nearly every blog post with this line, but what does it mean?

It means that constantly trying to be the best is a flawed path. To be the best at something means that everyone else has to be worse. It is an approach that actively discourages people from working together to help one another. The experiences of these past few years show us just how much we do need to work together and support one another.

Instead of focusing on being the best, focusing on just being a tiny bit better every day. Make the effort to consistently improve just a tiny bit. Help others to improve just a tiny bit, too.

Those little bits of improvement -- of growth -- add up over the days, weeks, months, and years. It can take you so much further that just focusing on the win/lose yes/so succeed/fail dichotomy that a focus on being the best promotes.

Where is my recovery today?

My recovery is ongoing. It didn't stop at the 6 month mark. Or the 12 month mark. Or the 24 month mark. Recovery doesn't stop on some artificial timeline.

My fingers are still getting better. I'd say I have about 15% of the use of my left hand back at this point. I can use it for practical stuff. Not in the same way I did before the stroke of course, but it will get there given enough time and work.

Right now my legs are tired because of an unplanned Costco shopping excursion where they were out of electric mobility carts. And since it was unplanned, I didn't wear my AFO so it was a lot more work. But I did it. And I wouldn't have been able to 3 years ago.

I also recently got my latest thrice yearly Dysport injection (a BOTOX alternative) . This medication treats the tone and spasticity in my left arm. My doctor was able to use less this time and treat fewer muscles. Again, it's another example of progress.

It's not all perfect, of course. I'm still living with fatigue, exacerbated by my recent COVID experience. So that's fun. And it's part of the reason I'm getting this episode out a week later than I had planned.  Adapting is what we do, though.

Going forward

I still have lots of projects to pursue as I go forward. I'm working on a book right now. Actually, I've been working on it for a year and a half and had to start over somewhere in the middle. I look forward to sharing more details on that later in the year.

I've also been doing more talks with survivor groups, students, and more to share my story and to help others share their stories. I plan to do more of that in the coming year. If you're looking for a speaker for your support group, reach out and let me know.

Storytelling

That brings me to the importance of storytelling. It's a theme that comes up again and again in my work. Professionally, I help journalists use Microsoft tools to tell stories more efficiently. I tell stories as part of that training process. Strokecast itself is built around empowering survivors and professionals tell their stories to educate and encourage the entire stroke community. Those stories help build connections across the silos of expertise and experience we find ourselves living in.

In sales and marketing, we say, "Facts tell; stories sell." Talking about stroke isn’t just about drilling into the biological details (though that is important). It's about telling the stories of real people or processes to connect those facts the lived experience we have. It's about helping patients, doctors, researchers, therapists, and commercial partners all experience one another as real people instead of just a bullet point list of details.

People don't want to go to a lecture on facts. They do want to go hear someone's story. That's how people connect with material.

Our earliest cultural touchstones in Western Civilization are based around storytelling -- from the ancient greek mythology to the slightly less ancient Homeric tales to the Christian bible where Jesus instructs his followers not with just precepts, but with parables -- stories -- that make the point.

The Brothers Grimm didn't just make a list of rules for safety and moral codes. The collected, recorded, and refined the fairy tales to serve as warnings to children about the dangers of the world.

My story and your story are how we can talk about stroke with others. That we can explain what it is, what to do, how to spot it, and potentially, how to avoid it. And even more importantly, that stroke and brain injury doesn't need to be an end. It can be a change -- a new beginning to a new phase in life. We may lose somethings while we gain so many more.

Was stroke a blessing or a curse?

I ask this question of most of my guests because it's one I struggle with myself. Most of my guests say it was a blessing. I'm not so sure.

For my detailed thought process on this question, though, I encourage to you listen to the episode or check out the transcript.

How can you support me?

There are a few things you can do to support me and the Strokecast. These are all things that help to grow the platform so more people can experience that value that you experience. Growing the platform will be a big help to me.

First, tell people about the show or tell them about your favorite episodes. The single best way to get more people to listen to a podcast is word of mouth from trusted friends and colleagues. They can find it in their favorite app, or they can just go to http://Strokecast.com

Second, subscribe to the Strokecast newsletter so you get updates and news when I'm able to share them via email.

Third, follow me on Instagram where I am @Bills_Strokecast. I post a lot of quotes from previous episodes and a few personal updates.

Fourth, invite me to speak to your virtual or local stroke support group. My webcam is always ready. Or hire me to speak at your conference or professional event/meeting. Just email me at Bill@Strokecast.com

Hack of the Week

When it's time to shop for a new mobile phone, look for one with a screen size of 5.5" or smaller. They're getting tough to find.

If you have only one functioning hand a larger screen is much harder to use. You have to be able to hold it in your hand and reach all the important stuff on the screen with just your thumb. If you can’t reach something on the screen it's quite frustrating, and it increases the odds you'll drop your phone.

Links

Where do we go from here?

• Tell me how you recognize your Strokeaversary in the comments below, on Instagram, or via email.
• Share this episode with someone you know by ginving the, the link http://Strokecast.com/Five
• Let me know if you’d like me to speak with your group.
• Subscribe to the Strokecast newsletter at http://Strokecast.com/news
• Don't get best…get better.

Listed in: Health

Deb Shaw Champions the Challenges after 3 Strokes

Deb Shaw was at the top of her career, selling cybersecurity technical products to government customers for a silicon valley powerhouse. Things were going great. Then she had a stroke. And then she had another stroke. And then she had a third stroke, paired with a concussion.

Since then, she started a nonprofit with her husband and has produced more than 10 booklets for stroke survivors to help them navigate their new lives.

Recently, the American Heart Association named Deb their latest Survivor Hero.

Deb shares her journey in this conversation.

If you don't see the audio player below, visit http://Strokecast.com/deb to listen to the conversation.

About Deb Shaw

Deb Shaw is an inspirational three-time ischemic stroke survivor and the Founder & President of a nonprofit who remains steadfastly upbeat, despite her ongoing difficulties. Deb channeled her energy into creating “Champion the Challenges,” a nonprofit organization that helps motivate stroke survivors to pursue her three P’s of a successful recovery: Patience, Positivity, and Practice. Be patient in everything, have a positive outlook, and practice your exercises every day.

Deb founded and launched ChampiontheChallenges.org, a rapidly growing 501c3 focused on helping stroke survivors reimagine their stroke rehabilitation journey.  The website is filled with inspirational content, therapy ideas, and success stories all designed to encourage.  Deb has written 11 Quick Read Booklets ™ that are geared to inspire and educate the stroke community. The booklets are available on-line as flipbooks, or in print editions, all compliments of Deb.

“Champion the Challenges” was started during Covid because she wanted to share the inspiration, motivation, technology, and helpful stroke ideas, all in one website. This is her way to give hope to many people needing to discover their inner strength.

3Ps

Deb's approach to recovery is based on the three Ps:

1. Patience
2. Positivity
3. Practice

Patience with yourself is critical. While we are all trying to recover, it doesn't always happen as quickly as we would like. Sometimes we can't do things yet that we feel like we ought to be able to do. That's okay. It happens. Getting angry and frustrated with ourselves may be natural in the moment, but ultimately is not helpful. We need to be patient with our brains and our bodies to give them the space they need to heal and to relearn our lives.

Positivity helps us get through the day. Negative feelings are natural and okay in the moment, and long term they can become a problem. Living in and dwelling in the negative is not going to get us where we need to be. A positive attitude and approach to our tasks and lives may not guarantee success, but I have never heard of someone succeeding while dwelling in a cloud of negativity.

Practice is the other key element. A positive attitude may make recovery a possibility, but it's practice that can turn that possibility into actual success. Neuroplasticity is a powerful force in recovery, and building those new neural pathways requires thousands of repetitions of activities. It takes practice and then more practice.

2022 Stroke Hero Awards: Survivor Hero – Deb Shaw

Llamas and Alpacas

For my Girlfriend's birthday, we went to Topstall Farm to visit play with llamas and alpacas. It's a short 1.5-2 hour drive from Seattle.

The person who runs the farms limits groups to 6 people so we get a personal experience. She told us all about the critters and explained how they care for them.
 

Then we got up close and personal. We walked into the paddock and got to feed them by hand. One thing that amazed me was how soft the alpacas lips were as they took the pellets right from my palm. They were aggressive about getting to the food but gentle about taking it.

After we fed the alpacas, we took the llamas for a walk. It was 2 people per llama. Cathy and I got to take Armando on a half mile hike around the property.  Armando wasn't terribly interested in the walk, but he went along with it. Every 20 or 30 feet or so he would stop and bend down to start snacking on some grass, as though to convince us he hadn’t eaten in FOREVER. We weren't buying that however.

The walk itself was a challenge because it wasn't a paved path or smooth trail. The ground was uneven and muddy in places, as you would expect. I managed pretty well with my cane (I used the cheap one), but I certainly got my PT in for the day.

This is the alpaca I spent time feeding. His name is Woody. He's 14 years old and deaf since birth. His different color eyes are also a genetic quirk. Once we all wandered into the paddock with our bowls of food, Woody ignored everyone else and sauntered right up to me for his snack.

Isn't it a coincidence that the disabled llama found the disabled human and decided to make a friend? Maybe, but I like to think he sensed a connection.

If you want to get up close and personal with live, fluffy animals, and you happen to be in the Puget Sound region, head on over to Topstall Farm. Tell Armando, Woody, and (oh, yeah) their humans that I said, "Hi."

COVID-19

It took more than two years, but COVID-19 finally got me.

I was on a business trip in Hawaii. It was a successful trip, which was great. The day before I was supposed to fly home, I felt off, and not in a stroke-y way (you know what I mean). I took a rapid test. The instructions say to wait 15 minutes for a result. My test lit up brightly and boldly positive in less than 3 minutes. The next day, I visited a doctor's office for a PCR test to confirm. It confirmed.

That meant cancelling my flight and isolating in the hotel for another 5 days. I probably could have gotten on the plane without telling anyone, but intentionally exposing 150 people like that seemed like the wrong choice.

The CDC recommends 5 days of isolation. After that, if symptoms are mild, the CDC allows masked travel if necessary and recommends isolating as practical after that.

You may think, "Awesome! Five bonus days in Honolulu!"

Sounds great in theory, but,

I was still not feeling well

I couldn’t leave the hotel room

The beach and surf were tantalizingly close, but they just teased me from my city view room with a peek of the water.

Housekeeping brought up a big table and put it in front of my door to signal that this was a quarantine room. They piled it high with towels, tooth brushes, and coffee packs so I would be all set to hunker down. I ordered all my food through Uber Eats. They would deliver to the front desk. The front desk would deliver to my blockading table. They would knock on the door and scurry away. I'd put on my mask, pop open the door and snatch my dinner.

Then I'd go back to washing my underwear in the sink so I'd have clean clothes the next day.

After 5 days, I was well enough to head back to Seattle.

I'm still recovering. My voice is a little rough, as you may have heard in the opening and closing of this episode. I'm a little stuffed up. I still feel a little off, but for the most part I'm fine. I just need to get more sleep. My main concern at this point is not infecting Cathy so I'm masking up at home and sleeping on the couch.

This could have been so much worse. And you know why this more of an inconvenience and not a full on health crisis? Because I got my damn vaccines! They may not have completely stopped the infection, but they gave my body the training and tools it needed to fight off this infection.

I'm annoyed, but I'm not in a hospital on a ventilator. And I'm not knocked out. This is a big win during the pandemic.

Hack of the Week

Deb talked about 2 hacks this week.

There is a lot of value in thinking about other people. I don't mean to compare ourselves to other people; that path leads to despair. Instead, think of how you can help other people, even if that's just a kind word. Brightening someone else's day can easily brighten yours as well.

On the more concrete aspect of recovery, a towel can be a great tool to help with hamstring exercises.

The hamstrings are the muscles on the back of your thighs. When they contract, they bend your knee and lift your heel towards your butt.  That bending is important for walking, stair climbing, balance, and more. Using a towel wrapped around your ankle can help you exercise your hamstrings to help them come back online consistently. Deb describes this in our conversation.

I would add that this is a great process to discuss with your PT to make sure you know how to do this safely. The last thing you want is to fall and acquire another injury while rebuilding your life after stroke.

Links

Where do we go from here?

• Check out Deb's resources at http://ChampionTheChallenges.org
• Share this episode on your Facebook, Twitter, or Instagram account with the link http://Strokecast.com/Deb
• Subscribe to the free Strokecast email newsletter at http://Strokecast.com/News
• Don't get best…get better

Listed in: Health

To Read, Write, and Speak Again

Sophie Salveson survived a stroke at 19. It's not the way any freshman wants to end their first year of college. She was a writer, actor, and singer. The stroke stole her right side limbs, her speech, and her access to language.

Over the past 10 years she fought back through PT, OT, speech therapy. She learned to stand, walk and speak again. And she continues to make progress.

In the previous episode (http://strokecast.com/ExpandedPractice) I spoke with Marabeth Quinn, Sophie's Mom, and Danielle Stoller, one of Sophie's Physical Therapists. This week, we hear from Sophie and Marabeth and learn more about Sophie's journey.

If you don't see the audio player below, visit http://Strokecast.com/Sophie.

Song

Many people with aphasia find it easier to sing than to speak. Early treatment sometimes involves getting folks to sing their name or sing a greeting. Or even sing a song deeply embedded in their memory, like Happy Birthday.

It has to do with the way music and song live in different part of the brain.

Aphasia isn't the only place music as an impact. In episode 106, I spoke with Brian Harris of Medrhythms about his work using music to bypass limitations of the motor cortex and help people significantly improve their gait.

This is an amazing video of Sophie from 2020. You can hear her sing, "A Change in Me" from Beauty and the Beast.

Now, I really want to hear Sophie's Eponine.

Maggie and Michael

Sophie isn't the only stroke survivor with a passion for theater.

I talked with Maggie in episode 38. Since then she has acted in a theater company fill with folks with disabilities. She continues to make progress on her documentary, The Great Now What. Here's the trailer:

Michael Schutt was on the show in episode 124 talking about creating his solo show to share his stroke story. COVID lock downs meant planned performances didn't happen. He pivoted it into a radio play available on line. You can listen at http://ALessonInSwimming.com.

Sophie's Book Recommendations

The first book Sophie really read for pleasure after her stroke was "Shatter Me," by Tahereh Mafi.* It came with a powerful endorsement -- her sister's. And connecting about the book with her sister was a powerful incentive to read it, no matter what it took.

Sophie's current favorites include "Good Girl's Guide to Murder," by Holly Jackson and "Elsewhere," by Gabrielle Zevin. * Pick up a copy or find them at your library and tell Sophie what you like about her favorites.

Hack of the Week

Keep trying. Speaking with aphasia is tough, but the only way out is through the key is to keep trying and to keep working on it.

I've found it best top to try doing a thing with my affected hand three times before switching to my unaffected side. By trying three times, I'm reminding my brain that my left hand is still there and has a job to do. By stopping after three failed attempts, I stave off frustration and can try again another day.

Links

Where do we go from here?

• Connect with Sophie on Instagram or email and check out the links above.
• Share Sophie's story with someone you know by giving them the link http://Strokecast.com/Sophie
• Subscribe to the Strokecast newsletter at http://Strokecast.com/New
• Don't get best…get better.

Listed in: Health

Communicate without Words

"Communication is the process by which shared meaning is created." 

CO 101

That's the first lesson we learned in Communications class back in college.

Communication isn't spoken words or written words of photos or symbols or sounds or touches. Or even scents or tastes.  Those are all just vehicles for communication. They are the trucks intended to carry the freight of meaning from one person to another.

After stroke, some of those trucks are no longer available. Aphasia and dysarthria may interfere with speech. Hemiparesis may interfere with writing or gestures. Sensory overload and attention challenges may interfere with listening.

And yet communication continues. Because the other lesson we learned in the class CO101 is, "You can't not communicate."

Combine those principles with the idea that your actions always speak louder than your words, and we have deeper understanding of how important it is for clinicians to think deliberately about the things they say and do when working with clients.

Marabeth Quin and Physical Therapist Danielle Stoller joined me in this episode to share their stories and how they came to develop Expanded Practice -- a training program for clinicians that helps them tune their communication strategies to build better relationships with their patients.

Note: This isn’t the first time I talked about communication in an academic context. This was also something I talked about with Drs. Sara Parsloe and Patricia Geist-Martin in episode 111 at http://Strokecast.com/process.

If you don't see the audio player below, visit the original post at http://Strokecast.com/ExpandedPractice.

Who are Danielle and Marabeth?

Danielle Stoller is a neuro physical therapist who helps stroke and brain injury survivors improve their lives through a holistic rehab approach.  Marabeth Quin uses the experiences and insights she has gained from her daughter’s stroke recovery to improve therapist’s understanding of the mental and emotional aspects at play in the recovery process.  Together they co-founded Expanded Practice.

Expanded Practice

Expanded Practice is the training organization that Danielle and Marabeth started  once they saw the need to help therapists connect more effectively with their patients.

Their goal in part is to go beyond the technical details of the tasks that go into a session and to help therapists think more about the client experience -- to connect to the clients as individuals with specific therapeutic, emotional, and psychological needs. That's not about providing counseling per se; it's about understanding the patient and building a trusting relationship with them to promote a more effective session.

In some ways it parallels the work I've done as a corporate training help folks learn how to sell technology products. It's not about the high-tech features of the product. It never is. It's about what those features and those products will do for the customer. Effective salespeople ask themselves, "How will this product or service make THIS customer's life better? How will this benefit them?"

To answer that, they have to talk to their customers and ask questions. They put the focus on the customers' lives.

That focus on the client is something Danielle and Marabeth teach to. As we talked about in the episode,  they teach therapists about the environment they create. If the therapist appears rushed or tense, that will affect the client's perception of what is happening. That increase in tension makes a session less effective.

Here's how Marabeth and Danielle describe the program:

Expanded Practice teaches physical, occupational, and speech therapists to start utilizing the power of positive mindsets and expectations in the recovery process so they can connect with their patients on a more significant level and help them reach greater recovery potentials.  Expanded Practice is passionate about improving the rehab experience for patients and therapists so both thrive and achieve the highest possible outcome.

Stroke Awareness Month

May is Stroke awareness month in the US.

What does that mean for you? Well, whatever you want it to.

It's a month when many survivors will share their stories or post on social media about how to recognize a stroke or just have personal conversations with others they are close to.

Some may choose more subtle signs, like adding a stroke awareness frame to a Facebook avatar or wearing a red ribbon.

Some may give a talk at school, church, or work to help raise awareness.

And many folks will choose to treat it like any other month.

What matters most is to treat it in the way that best supports your needs, goals, and recovery.

And if you want to do something, but you're not sure what, you can always tell folks about your favorite stroke related podcast :).

Or find a new stroke podcast to listen to at http://Strokecast.com/strokerelatedpodcasts.

Hacks of the week

Two guests again means 2 hacks.

Marabeth makes a point of reminding us to keep going. The thing about recovery -- whatever part you're in -- is that it can be easy to stop and give up. It seems so enticing to do that somedays. It really does.

But then you stop getting better. And you may get worse. Even when it's hard, you have to keep going. That's the only way to get to the better days that are coming.

Danielle suggested looking at trees. Even better is getting outside into nature -- even if it's just a short time. There's research demonstrating this helps with recovery.

Getting out and being near the grass and trees and plants helps. And it can be one of the cheapest things you can do to help your recovery.

Links

(If you don't see a table of links, visit http://Strokecast.com/ExpandedPractice)

Where do we go from here?

• Check out the Expanded Practice resources above.
• Share this episode with the therapists in your life by giving them the link http://Strokecast.com/ExpandedPractice
• Subscribe to the Strokecast Newsletter at http://Strokecast.com/News
• Don't get best…get better.

Listed in: Health

When the Pros Deny a Stroke

Olga and her husband were having the vacation of a lifetime. They hooked up a teardrop trailer to their Subaru in NJ and headed out west. The planned to explore the gorgeous landscapes of the Washington State parks before jumping on ferry to Alaska.

On July 19, 2021, at a campground in Deception Pass State Park on the Washington State Peninsula, things started to unravel.

Olga had a brain stem stroke. She felt tingling up and down one side of her body and could not stop vomiting. She felt it was a stroke. Her husband called 911 and they made it out of the woods to a fire house.

The EMT said she wasn't having a stroke.

The ambulance that arrived said she wasn't having a stroke.

The ER staff said she wasn't having a stroke.

The neurologist said she probable wasn't having a stroke and specifically discouraged the tPA that could have solved the problem

And no one sent her to the more advanced hospitals in Seattle for stroke treatment.

The window for tPA came and went.

This whole time, Olga was having a stroke.

Olga shares her story in this conversation.

If you don't see the audio player below, visit http://Strokecast.com/Olga

Who is Olga Wright?

Olga is a married mother, grandmother, and recently retired educator. She lives in central New Jersey, where she practices extreme gardening.

She and her husband recently returned from a six-month, 24,000-mile road trip to Alaska and back, with their ultra-light, solar-powered camper.

Her goal is to educate the public and medical professionals at all levels to recognize nausea, vomiting, and tingling as stroke symptoms so that no one else is misdiagnosed as she was.

Olga can be reached at olgawrightstrokestory@gmail.com

Deception Pass

Deception Pass State Park is a gorgeous corner of the state. It's filled with hiking trails (including accessible trails), lakes, salt water shoreline, and campgrounds.

It's also just an amazingly beautiful part of the state. It seems remote but it's also within just a couple hours of Seattle to the Southeast and 90 minutes from Canada to the north.

It's easy to see why Olga and her husband chose to camp there.

Zofran and the Brain

Zofran is a medication I was not familiar with, and it's what finally got Olga's vomiting under control.

It's typically used to help treat nausea associated with chemotherapy. In Olga's case, it was used to treat a malfunctioning brain that was sending the signal of, "OKAY! Everyone out the way you came in!" even though there was nothing left.

The brain tries to protect us in lots of ways. Sometimes those threats are real and sometimes they are not. In Olga's case, her dying brain stem knew something was wrong but didn't know what. It went to an early reflex for poison and just kept trying the expulsion solution because it didn't know what else to do. Meanwhile, Olga's higher level brain functions were still working and trying to seek medical treatment for the stroke.

And this conflict is an illustration that the brain is not one, cohesive unit. It's different parts grabbing different pieces of data and attempting to execute a solution based on the tools at its disposal. The brain does not always work as a single unit.

But back to Zofran. One of the interesting things I learned while reading about it is that Serotonin, one of the brain's "happy" chemicals is also responsible for the vomiting function/command. Zofran works by suppressing Serotonin.

And that makes me wonder how its use as an antiemetic impacts things like depression. I suppose that will be a future research project.

Swedish ARU

The reason Olga and I connected is that she spent her inpatient rehab time at Swedish Medical Center. It's the same place I lived for the month following my stroke. You can learn more about the Acute Rehab Unit here.

Olga was lucky enough to work with OT Emilee who told her about the Strokecast. Emilee was also one of my OTs 4 years before Olga made it there. I interviewed Emilee in episode 20. You can hear that conversation here: http://Strokecast.com/Emilee

I've stayed engaged with members of my rehab team over the years. I've also met other folks on the stroke team at Swedish. Here are some other interviews I've done with the team at Swedish: http://strokecast.com/Swedish

Licensing for PT and OT

The pandemic has brought a dramatic increase in the availability of telemedicine. This is great because a lot of follow up appointments really don't need to be in person. I'd much rather do a 15 minute video appointment versus a 15 minute in person appointment I have to travel to and back from.

In Olga's case, it almost worked out for Outpatient PT. She would be able to continue her travels after leaving the hospital and get therapy on the road via the internet!

It’s a great idea, but it didn't work. Not because of technology or willingness, but because of state level bureaucracy. A Washington licensed physical therapist cannot legally treat a patient who happens to be in Alaska or whatever other state Olga happened to be travelling through.

Hack of the week

Walking is one of the best ways to drive recovery. At certain points, walking 100 feet may be the most you can do. At other points, a mile or two may be achievable. Regardless of the distance, walking as much as you can helps to drive recovery.

The most important thing, though, is to do it safely. Olga uses traction cleats for all her hiking activities. Traction cleats are basically snow chains for your feet. Even if there's no snow, they help traverse the wilds with less slipping and falling. You can find an assortment on Amazon here: https://strokecast.com/Hack/TractionCleats *.

A walker or cane can be great in a city environment, but they are less usable on the trail. What is usable whether hiking in Alaska or going down to the corner bodega is a pair of trekking poles. These are much taller than a cane. As you use them they give many folks plenty of stability and an upper body work out. You can find them on Amazon at http://strokecast./com/Hack/TrekkingPoles *.

Links

Where do we go from here?

• Connect with Olga via email at OlgaWrightstrokestory@Gmail.com
• Share this episode with the road trip lover or medical professional in your life by giving them the link http://Strokecast.com/Olga
• Subscribe to the free Strokecast newsletter for more updates at http://Strokecast.com/News
• Don't get best…get better.

Listed in: Health

Researching Brain Blood Clots

More than 80% of strokes are caused by blood clots. These strokes are called "ischemic" because the clot block the flow of blood through a blood vessel, starving brain cells of oxygen and nutrients. My own stroke was ischemic.

There are new treatments to clear the clot and restore blood flow and we talk about them a lot on this show. What we don't usually discuss is the nature of clots themselves and how that impacts patient recovery.

So this episode is a little different. We go deep into understanding the biologfy of blood clots with Michael Gilvarry and Dr. Patrick Brouwer from Cerenovus, a Johnson & Johnson company.

Cerenovus commits a lot of research and resources to understanding clots because they make equipment used in Mechanical Thrombectomy and reduce the impact of stroke on thousands of patients a year.

You can listen to the conversation here or in your favorite podcast app. If you don't see the audio player below, visit http://Strokecast.com/Clots

Meet Dr. Patrick Brouwer and Michael Gilvarry

Dr. Patrick Brouwer, Head, Worldwide Medical Affairs - CERENOVUS

Dr. Patrick Brouwer is a clinician and scientist who has made significant contributions in the field of interventional neuroradiology and endovascular surgery.

Before joining CERENOVUS as Head of Worldwide Medical Affairs, he served in senior staff positions for over 20 years as a neurointerventionalist at various university hospitals in Europe. As a key opinion leader in his field, Patrick has published close to 100 scientific papers and book chapters and lectured, including for invited professorships, on more than 400 occasions around the world on a variety of topics related to neurointervention.

Patrick has additionally contributed by serving in various board positions across key societies, such as the European Society of Minimally Invasive Neurological Therapy (ESMINT) and the World Federation of Interventional and Therapeutic Neuroradiology (WFITN).

He received his medical degree, with honors, from the Free University in the Netherlands.

Connect with Dr. Brouwer on LinkedIn.

Michael Gilvarry, General Manager, CERENOVUS Galway

Michael Gilvarry is the General Manager of CERENOVUS in Galway. With a distinguished career in research and development (R&D) spanning over 20 years, Michael leads the CERENOVUS campus in Galway which is a key hub for producing world-class leading research on stroke and clot science, as well as R&D for the business’ product pipeline.

He leads a distinguished team who informs new innovations and the development of medical devices to address real-world challenges faced by neurovascular physicians in the treatment of stroke. This work has led to many international research projects in collaboration with universities and hospitals in the field of acute ischemic stroke.

He is the recipient of a Johnson Medal, the most prestigious award for R&D excellence within Johnson & Johnson, and is a named inventor on over 60 U.S. patents.

Connect with Michael on LinkedIn.

Cerenovus

CERENOVUS, part of Johnson & Johnson Medical Devices Companies, is an emerging leader in neurovascular care. Our commitment to changing the trajectory of stroke is inspired by our long heritage and dedication to helping physicians protect people from a lifetime of hardship. CERENOVUS offers a broad portfolio of devices used in the endovascular treatment of hemorrhagic and ischemic stroke. For more information, visit www.cerenovus.com and connect on LinkedIn and Twitter.

Nature of clots

Most folks who encounter clots only experience them on the surface of the body or when they come out of the body, but we don't think too much about their nature, especially wqhen they stay inside the body.

At the most basic levels, the structure of a clot is determined by the ratio of fibrin to red blood cells. Clots that are high in fibrin tend to be "tougher" and more compact, thanks to the way platelets help tighten them up. That also makes them easier to remove with Mechanical Thrombectomy.
 Clots that are higher in red blood cells may be softer and less dense, but they are also more fragile. Pulling one out of a blood vessel in one piece is a lot harder.

An environment with higher sheer forces is more likely to generate a high-fibrin clot. What is a high sheer environment? Think about a river with a strong, fast flowing current. One way to get a high sheer environment is with high blood pressure. With high blood pressure, blood is coursing through less flexible vessels with greater speed and strength.

A high red blood cell clot is more likely to be formed in a turbulent environment. AFIB, or atrial fibrillation is one such environment. A space where blood flows unevenly or pools can lead to a clot like this which can then travel to the brain.

Clots can also be different shapes. It's not like they are just a disk that closes off a blood vessel. They could be in the shape of a cylinder blocking a blood vessel. The can easily be longer than 8 mm.

Cerenovus recently presented a paper at the American Heart Association's International Stroke conference looking at the impact of clot composition on patient outcomes in mechanical thrombectomy. They showed that thrombectomy had better patient outcomes with high-fibrin clots.

Of course, today there really isn't a way from a neuro-interventionist to know the type of clot before they go in to get it. In the future such information may help inform treatment protocols or refine the type of equipment used in the clot removal process.

You can read more about the research paper here.

What is AFIB?

More than 12 million people in the US live with Atrial Fibrillation. It's a condition that can easily lead to stroke.

Afib happens when the heart gets out of sync with itself. The upper chambers don't beat in the same rhythm as the lower chambers. That results in inefficient blood flow through the heart. Not all the blood that should leave on a beat actually leave.

Bill's Zio Patch heart monitor is looking for signs of Afib. It did not find any.

This results in blood pooling in the heart and creating a turbulent environment that is a breeding ground for blood clots. Eventually one of those clots will shoot out of the heart and lodge in the brain causing an ischemic stroke.

 When I got home from the hospital, I wore a heart monitor for two weeks that looked for signs of Afib. It did not find any.

Folks with Afib, and especially a history of Afib-related stroke may be put on a lifelong course of anticoagulant medication to prevent those clots from forming. There may be other treatments, as well.

What happened to my clot?

I had a wakeup stroke in 2017. As a result, I was outside the window for tPA and thrombectomy at the time. So what happens when the clot doesn't get removed? I just assumed it would break down over time and blood would start flowing through the dead brain tissue again.

But that's probably not what happened. Because the blood vessel where I had my stroke is so small, it's likely still in place. That clot never went away. It simply became part of the blood vessel itself and that part of the system permanently collapsed. Basically, the cave collapsed and there's no way to dig it out.

And now I'm imaging some sort of Fantastic Voyage/D&D crossover game to go explore that cave.

Meade Musings

I recently appeared on the Meade Musings Podcast sharing my story. We talk about my stroke  and the impact of Sleep Apnea on blood pressure. You can hear the episode here. If you don't see the player below, visit http://Strokecast.com/clots

JoCo Cruise

I just got back from the JoCo Cruise. It's a weeklong cruise in the Caribbean with 1800 nerds, geeks, gamers, creators, and more. We chartered the Nieuw Amsterdam cruise ship for the journey and had a blast. The crew was great and my fellow cruisers were fantastic.

Unlike a traditional cruise, the official programming is all done by the group that charters the boat, led by musicians Jonathan Coulton and Paul & Storm. They bring on a bunch of other well-known and soon to be well known musicians, writers, voice over folks, actors, and generally fun, nice, talented people.

And then the attendees ourselves put together a bunch of programming. I ran a meet up for folks with neuro conditions, a professional networking session, a podcaster meetup, and a photoshoot for the stuffed animals people travelled with.

I have lots of other thoughts and feelings about this year's cruise, but I'm having trouble articulating them in writing this time.

If you'd like to learn more or are thinking about going in 2023 (or in the future) you can visit http://JoCoCruise.com for more details

Hack(s) of the Week

Hack 1

Dr. Patrick Brouwer emphasized the importance of setting goals and appreciating the life around you. At first glance it seems those two things are in conflict, but in reality, they are not.

Setting goals helps you build a plan for the future with tasks you can do today that can get you there.  The steps you take today are what will shape your future. And if the steps you take can get you there, there is fulfillment to be found in taking them.

At the same time, we don't live in the future. We live in the present. It's the only reality we will ever have. We need to appreciate the world and the people around us and if we can't then we need to take steps to change that. And execute those steps while recognizing the sheer power of the here and now. Because before we know it, the here and know will simply be the past.

Survivors who've come close to not having any more future on this earth can appreciate that more than most.

Hack 2

Michael Gilvarry talked about adding additional therapy while doing other tasks. He suggested closing your eyes while you brush your teeth. It's something he found helpful while rehabbing his own knee.

I like this approach especially for folks after stroke because it forces you to work on proprioception - the sense of where your body parts are in space. This is a challenge for many survivors. It's a skill we may need to develop.

It also forces use to focus more on the balance in our core and affected leg while our unaffected hand is busy with the tooth brush.  This can be a good challenge after stroke.

That said, do it safely. Make sure you can stand with your eyes closed without falling, first. Talk to a PT or OT before trying things like this. You want to challenge your brain with these balance tasks, but any fall could undo months of progress.

So don't fall.

Links

Where do we go from here?

• Learn more about Cerenovus or the JoCo Cruise at these links
• Share this episode with someone you know by giving them the link http://Strokecast.com/clots
• Subscribe to the free Strokecast email newsletter at http://Strokecast.com/News
• Don't get best...get better.

Listed in: Health

How can you do 1,000 reps an hour?

Again and again, we learn the secret to stroke recovery is repetition. It's about doing the same movement or behavior again and again -- tens of thousands of times.

In a typical session with an OT or PT, a patient might do the same exercise 30-60 times, which is a good start. But what if a therapist could crank that up to 1,000 reps an hour, or one every four seconds? Now you've got some interesting possibilities for recovery.

Bionik, Inc makes devices and software that do just that. This week I talk with CEO Rich Russo about the InMotion Hand and InMotion Arm devices and how they work in conjunction with a therapist to help patients recover.

Listen to the conversation here or in your favorite podcast app. If you don't see the media player below, visit http://strokecast.com/Bionik

Who is Rich Russo?

From the Bionik website:

Mr. Russo Jr. has over 15 years of finance and accounting leadership experience and is a Certified Public Accountant.

From March 2017 through November 2020, Mr. Russo was the Vice President of Finance and United States Chief Financial Officer, of IcarbonX, a privately held digital health management company specialized in artificial intelligence and health data, and a predecessor PatientsLikeMe. While there, he was responsible for, among other things, the merger of three companies, fundraising, and the ultimate dissolution of certain affiliated companies.

From 2007-2016, Mr. Russo held various key leadership roles for Nasdaq-listed companies in life sciences, pharmaceutical and medical device industries. From September 2015 to October 2016, he served as Corporate Controller for Pieris Pharmaceuticals, Inc., a clinical stage biotechnology company, and prior to that, he had roles at Juniper Pharmaceuticals, a woman’s health company focused on developing therapeutics, and Cynosure, a medical device company focused on aesthetic treatment systems. In each of these roles, Mr. Russo was responsible for all finance activities and SEC reporting, including partnering closely with management to ensure effective and efficient financial procedures throughout the organizations. Mr. Russo started his career in 2005, where he served as an auditor at Pricewaterhouse Coopers in the assurance group.

Mr. Russo is a graduate of Bridgewater State University in Bridgewater, MA, where he graduated from a dual degree program, receiving his Bachelor of Science in Accounting and his Masters in Management and Accounting.

Other Inpatient Solutions

The Bionik system is one for hospitals and rehab units. The rapid reps help in partnership with the rehab professional.

In that respect, it's similar to devices from Restorative Therapies. I talked with the team at Restorative Therapies in episode 92. You can find that episode here. 

The key difference is that Restorative Therapies uses Functional Electric Stimulation (or FES) to activate a patients muscles. The Bionik solutions provide physical assistance to help the patient complete motions. They are different ways to stimulate the brain, increase repetitions, and drive the neuroplasticity that is so key to recovery.

They are also both intended for use in a hospital or rehab facility with the help of a trained therapist.

The other devices I talk about often, like those from sponsor Motus Nova and previous guests with Neofect and Racoon Recovery are for at home use, as a supplement to therapy provided at a medical facility, or as an alternative when those services are not available, for whatever reason. You can learn more about those devices by clicking the links on their names above or from the link table at the bottom of this post.

The point of all these solutions is the same -- drive patient recovery through increased movement and repetitions to neureoplastically teach to brain how to access that limb once again.

Hack of the Week

Wear comfy socks.

It's such a simple thing, but the right socks can make a big difference in how you feel. The right socks can wrap your feet well and wick away perspiration. They can protect your foot from rubbing against an AFO or the heel of your shoe.

The wrong socks will keep you too hot or too cold. The wrong size will leave you with an uncomfortable wrinkle you walk on all day. If they're too slippery, you've got an additional safety hazard to contend with.

The hospital socks they gave me in the hospital were terrible. The had the no slip dots, which was great, but they kept falling down and rotating around my foot. Part if it was they were likely the cheapest that met minimum standards. The other part is that I have large feet for my height (size 12). So my partner ordered me better hospital socks from Amazon,* which helped.

For air travel after stroke, I have made a change to my wardrobe. I now wear knee-high compression socks.* They do a good job of preventing swelling in my feet and legs during long flights. And that helps to prevent DVT or deep vein thrombosis, which is where a clot forms in the legs and causes problems there, or breaks loose and lodges elsewhere in the body. That's how Ted Baxter had his stroke. I talked with Ted back in Episode 34.

Relatively speaking, good socks are still fairly cheap. Try different ones until you find the socks that are best for your feet and life style.

Good socks are worth it.

Links

Where do we go from here?

• Learn more about the work Bionik does at https://www.bioniklabs.com/
• Share this episode with someone you know by giving them the link http://Strokecast.com/Bionik
• Subscribe to the Strokecast newsletter at http://strokecast.com/news
• Don't get best…get better.

Listed in: Health

A Hole in my Heart - Should I get it fixed?

If you have a hole in the middle of your heart and it's not supposed to be there, is that a problem? Should it be fixed? The answer is a resounding, "Maybe."

Dr. David Thaler and his colleagues looked at the impact of PFO closure on stroke patients and found that often, the best solution is to leave it alone. They developed a scoring system to help neurologists and cardiologist make the best decision on a patient-by-patient basis.

Dr. Thaler joins me in this conversation to talk about the research and recommendations.

(If you don't see the audio player below, visit http://Strokecast.com/PFO)

About Dr. Thaler

Dr. David Thaler, MD, PhD, FAHA, is the Neurologist in Chief at Tufts University Medical school. He is the Chairman and an active professor in the Department of Neurology.

Additionally, he continues to treat patients and is a clinician focused on stroke care. He  continues to work to advance the field with a research focus on acute management of cerebrovascular disease, secondary stroke prevention, cryptogenic stroke and patent foramen ovale (PFO).

Dr. Thaler's training involves work at:

• Oxford University
• John Radcliffe Hospital, UK
• Brigham and Women's Hospital
• St. Elizabeth's Medical Center

He is a Board Certified specialist in Neurology and Vascular Neurology.

Stroke Basics with Dr. David Thaler

Dr. Thaler works on projects ranging from advance neurological  research to the fundamentals of stroke education. This video is an excellent, short introduction to stroke  that is also sharable:

One of the things that is especially interesting about this video is that in describing the symptoms of stroke the first one he mentions is tingling on one side of the body. This usually isn't mentioned as a stroke symptom by most warnings.

In episode 156, coming up in a few weeks, I talk with a survivor who had this exact symptom and was told by first responders that she definitely wasn't having a stroke and by emergency room personnel that she probably wasn't having a stroke. It turns out she was having a stroke.

BEFAST and AHORA are excellent starting points for recognizing the signs of a stroke, but they are not comprehensive. They do not cover every sign of stroke. They are just a useful short hand.

What is a PFO?

A PFO is a hole in the heart. Roughly 25% of the population has one. I have one. Guests Misha Montana and Christine Lee both had PFOs that led to their strokes.

After we are born, our blood follows a path through the heart. It comes in the right side. When the heart beats, the blood on the right side heads out of the heart to the lungs. There, it drops of CO2, picks up oxygen, filters out clots, and heads to the left side of the heart. It will pour into the left side and when the heart beats, it sends that oxygen-rich blood on to the brain and other parts of the body. Then that blood drops off its oxygen, picks up CO2, and heads back to the right side of the heart to start the whole cycle over.

Before we are born, though, the process is different. While we are developing in our mothers' uteruses, we don't breath air. All the oxygen and nutrients we need to build fingers and toes and kidneys and hearts and brains comes from the umbilical cord.

Since we're not breathing air, there's no point in sending blood to the lungs. Instead, in utero it goes straight from the right side of the heart to the left side of the heart through a hole in the middle. That hole is called a Patent Foramen Ovale, or a PFO. It normally closes on its own shortly after we are born.

A quarter of the time it doesn't close after birth, and that allows unoxygenated, unfiltered blood to sneak across the heart, skip the lungs and drag a blood clot to the brain.

So, if you've had a stroke, and you have a PFO, should you have surgery to close that hole? Maybe.

Christine and Misha had their PFOs closed. I did not

Dr. Thaler's research helps doctors make the best recommendation for the patient: to close or not?

Neurology, Illustrated

When you visit the doctor's office, what do you see on the walls? Probably posters showing the warning signs of stroke or heart attack. Maybe information about COVID-19 protection and policies. Probably lots of important, useful, stressful, and boring text.

If you visit the Neurology department at Tufts Medical Center, you'll have a different experience. There you'll see art all about neurology -- from centuries old brain drawings to photos reflecting the impact of stroke on world events to modern pieces exploring the diversity of the brain and nervous system we live with today.

You can also see these images and read more about them at  Neurology, Illustrated on the Tufts website.

Here's a video of Dr. Thaler explaining the program.

International Stroke Conference Panel

I will be moderating a panel for the Stroke Connection program from the American Heart Association's International Stroke Conference called "Post-Acute Rehabilitation After Stroke: Getting It Right." I'm pretty excited about it.

The Stroke Connection program is in its second year. It's goal is to connect researchers and academics with the general stroke community. The idea is that we can all benefit when scholarly scientific research is shared with the broader community.

Tickets to the webinar are available from the American Heart Association for $10 each. You can learn more, see the list of all the available webinars, and register to attend here: https://www.stroke.org/es/stroke-connection/iscstrokeconnection/stroke-connection-at-isc-registration

Hack of the Week

Slow down. Kawan Glover explained that doing tasks after stroke often means stopping and pausing for a few seconds to think about what you want to do. How can you break your task down into smaller tasks and movements.

In the pre-stroke days, we could more easily do tasks that involve all sides of our body without even thinking about it. A subtle shift of weight or minuscule flex of a finger could be all it takes to complete a particular movement.

We built this symphony of movement gradually over the years from the time we are a new born exploring our limbs to the time of our stroke.

After stroke, we may be tempted to do physical things the same way we did before, but we might not be able to yet. The symphony is broken. The automated process is broken. And the consequences could be anything from failing a task to spilling a beverage to falling and picking up another head injury.

To reduce the chances of that happening, pause. Take a breath. Break down a task into multiple little steps and figure out how to accomplish them. Then do it.

As the carpenters say, "Measure twice. Cut once,"

Links

(If you don't see the list of links below, visit http://Strokecast.com/PFO)

[wptb id=2697]

Where do we go from here?

• Check out the links above to review Dr. Thaler's research and learn more.
• Share this episode with someone you know by giving them the link http://Strokecast.com/PFO.
• Subscribe to the Strokecast newsletter by going to http://Strokecast.com/news.
• Don't get best…get better.

Listed in: Health

Stroke in your 20s Will Change Your Path

A stroke is, of course, a traumatic event. It kicks off a deep dive into the medical system of whatever country you're in.

For some, the first stroke is just a preview. Or even an intermission in other ongoing medical issues. That was the experience of Kawan Glover.

He's come back from multiple strokes and brain surgeries to be an author, coach, and speaker. And he did all that before he was 25. Today, I talk with Kawan about his journey.

(If you don't see the audio player below, visit http://Strokecast.com/KawanGlover)

About Kawan

From KawanGlover.Com

In the summer of 2014, Kawan noticed a lack of coordination and muscle control, specifically on his right side. One morning, while working at his internship, it became clear he had difficulty speaking and writing. He was instructed to go to the Doctor's off where they ran neurological tests. After seeing the results, the Doctor strongly advised Kawan to go to the Hospital. Kawan was not alarmed and felt the issue was being overblown.

Despite what he felt, Kawan heeded the Doctor's instructions and went to the Hospital of Southern Maryland. There he waited six hours to get a CT scan. After some time, the Doctor came out to shed light on what, if anything, was wrong. The Doctor told him he had a lesion (area of tissue that has been damaged through injury or disease) on his brain, but he would need an MRI to get more in-depth details. To get the MRI done, Kawan went to George Washington Hospital. The imaging came back and the doctors told Kawan he had a Cavernous Malformation. Kawan didn't know what that meant, so he thought nothing of it when he was told to go home and monitor.

Within a few days, Kawan was back in the Hospital when his coordination worsened, and his vision became blurry. He returned to GW Hospital and had his first brain surgery on August 15th, 2014. That may have been a moment of pause and reflection for most, but at 20 years old, there was no stopping Kawan. Only a week later, he returned to school and everything that came with it. Drinking, partying, and staying up late. As a result, he had a stroke a month later, on September 18th, 2014. After spending a month in rehab, he returned to school with a new mindset, but yet again, life had other plans.

The benign brain tumor would grow back twice, resulting in two more brain surgeries on October 1st, 2015, and October 12th, 2017. In between those surgeries, Kawan struggled with suicidal ideations, depression, and opioid addiction. After everything was over, Kawan had a whopping medical bill of $1.2 million. Despite all his hardships, Kawan still graduated and started a coaching business called Overcome Adversity LLC. He is also a Podcaster with a podcast called Favor: The Podcast. All fitting for someone with his background.

Kawan wrote a book called "Favor: How Stroke Struggle and Surgery Helped Me Find My Life's Purpose"* He is an author, a coach, but most notably a survivor. He now uses his story to inspires others, and transform them from a victim to a Victor!

Favor ain't fair. It's Just Favor.

Kawan quoted his grandmother as saying, "Favor ain't fair. It's Just Favor." Good things and bad things will happen to good people and bad people.

We can complain all we want that it isn't fair. It isn't just. And maybe it's not. Maybe we lived a good life. We were nice to everyone. We took care of the less fortunate. We respected our partners, friends, and family when appropriate. And stroke still happened.

Maybe we did all the health stuff right:

• No smoking
• No illicit drugs
• No excessive alcohol consumption
• Healthy diet and exercise
• Appropriate blood pressure and blood sugar
• Etc.

And we still had a stroke. Maybe no one even knows why.

It's not fair.

Now that we know that, what are we going to do about it?

We can mourn the loss of our previous life -- the hopes and dreams we don't think we can entertain anymore. Grief and mourning are fine. Healthy even.

But then what?

Favor ain't fair.

We've still got to live our lives. Just because it's not fair is no reason to stop and give up. There's so much more for us to do.

The Power of the V

Kawan talked about the  nature of the V. I like the representation of the shape.

The idea is that at our lowest point in life, we've fallen down into a valley. We may be hurt or injured from that fall. But that's only half the letter V. To make it to victory, we have to climb back up the other side of that V to get out of that valley of pain and loss and figure out the next step for ourselves. Climbing that V -- getting out of the bottom of that trough is hart work.

That's where it's important to leverage the community around us. The other survivors still climbing out of their own Vs and those who've made it can help. The family and friends around us who want us to succeed can help. We can help ourselves through our own efforts.

And as we start to climb the V, a look over our shoulders will show us other people just trying to start their own climb or thinking about starting their own climb. We can help our own efforts, too, by helping them, and sharing our own tips of the best routes, paths, and climbing gear.

Hack of the Week

Kawan mentioned floss picks.* This is a great tool for flossing one handed. They're basically disposable picks with an inch or so of dental tightly strung between 2 ends. It makes it easy to hold with one hand and slip (or force) the floss between your teeth.

This is especially important if you have face weakness. After a stroke, it's easy to fall into the habit of having food bits accumulate on the affected side of our mouth as we eat. We don't feel them as much and the assorted muscles in our mouth are not as effective at getting rid of everything.

Plus, after stroke, I picked up some tendencies of a toddler. Everything ended up in my mouth -- key fobs, credit cards, tough-to-open bags, and more. My mouth became an emergency hand. That probably wasn't a good idea, but for many of us, it is reality.

The point is that dental hygiene -- brushing AND flossing -- is even more important after a stroke. Take care of your teeth. You don't want to add more dental issues on top of the other issues you're dealing with.

Floss picks like these can help. *

Links

(If you don't see the table of links below, visit http://Strokecast.com/KawanGlover)

Where to we go from here?

• Connect with Kawan at the social links above and check out his book here.*
• Share Kawan's story with someone you know by giving them the link http://Strokecast.com/KawanGlover
• Subscribe to the Strokecast Newsletter at http://Strokecast.com/News
• Don't get best…get better

Listed in: Health

Remembering Peter G. Levine of Stronger After Stroke

I was saddened to learn of the passing of Peter G. Levine.

Deb Battistella, OT and Cohost of the Noggins and Neurons podcast with Pete announced in the January 17 episode that Pete passed away following a brief illness. You can hear Deb share the news and her thoughts here.

Pete is known in stroke survivor circles as the author of the book, "Stronger After Stroke" where he talks about therapeutic approaches and why the work. His focus has been to help folks with varying levels of paralysis after stroke to recover function and live their best lives.

I share more of my thoughts in this episode:

(If you don't see the audio player below, visit http://Strokecast.com/RememberingPeteLevine)

I interviewed Pete in 2020 and found him to be down to Earth and passionate about supporting patients and survivors. He was fun and easy to talk with and I could feel the fire of caring he had for our community.

Pete's approach was scientific. He was a strong supporter of Constraint Induced Therapy and at a more basic level, of the need to get in more repetitions -- thousands of repetitions -- to drive the neuroplastic changes in the brain that represent recovery.

That also means he wasn't afraid to speak out about "treatments" that have not been scientifically demonstrated to be safe and effective. There are a lot of people out there making claims about miracle cures without the data to back up those claims, and Pete was a vocal opponent of those snake oil sales people.

When Pete and I spoke, he summed up his approach to stroke recovery with these four lessons:

1. Recovery takes a lot of repetitive practice.
2. Recovery takes a lot of visualization.
3. Don’t expect miracles.
4. Don’t let the perfect be the enemy of the good.

It's a simple approach that makes a lot of sense. It's not sexy or flashy or miraculous. It relies on hard, consistent work and stringing together a lot of minor improvements. There is no shortcut.

His comments about visualization were especially interesting to me. Pete explained how the research has shown that watching someone walking or running activates the same parts of the brain as actually walking or running.

It's why athletes and musicians visualize their performances before hand to improve their performance. And it's why I found value in visualizing my fingers moving as I tried to move them under the blankets while I drifted off to sleep at night.

You can find my interview with Pete here at  Ep 115 — Stronger After Stroke with Peter G. Levine. We talk about his work and the science of recovery in much greater detail.

If you've followed Pete's blog (Stronger After Stroke), read his book Stronger After Stroke, heard him talk or otherwise been inspired by or have memories of Peter that you would like to share, you can record or email them to Deb, his cohost, at this link. I'm sure she and Pete's family, friends and colleagues will definitely appreciate it.

Hack of the Week

This week, I'm sharing a hack I've discussed before, but it feels in line with Pete's approach to recovery.

Try something with your affected limb three times, every time.

For example, if you are left side affected, try turning a door knob with your left hand when it's time to open or close a door. Maybe you can't do it yet. That's okay. Just try. Use your unaffected hand to put your affected hand on the knob.

Or do it with a light switch. Or picking up a cane. Or whatever.

Try it three times each time the opportunity presents itself. After three times, if you haven't accomplished the task, that's fine. Then you can use your unaffected side to do it.

The advantages of this approach are that it keeps your brain trying to use the affected side. It's getting in more attempts at repetitions and making the exercise part of everyday life, instead of restricting it to exercise time.

And by limiting your attempts to three, you reduce the frustration of the limitation and can get on with living your life.

You can try again later in the day.

Links

(If you don't see the table of inks below, visit http://Strokecast.com/RememberingPeteLevine)

Where do we go from here?

• Check out Pete's blog here or find his book on Amazon here*.
• Do an extra set of reps in you exercise program in memory of Pete.
• Share your thoughts on Pete and his work here.
• Don't get best…get better.

Listed in: Health

Learning to Speak at 34

Aphasia really sucks. It's a common stroke results where the survivor loses their ability to speak. They may por may not lose the ability to read, writer, or understand what people are saying. What they keep is the ability to think, create, have ideas, thoughts, emotions, and the entire rich interior life we all have. They just lose the ability to communicate that to others.

You know how frustrating it is when you can't come up with the word you want, but it's right on the tip of your tongue? Now imagine it's like that for every word, from "catamaran" to "the."

Ryan acquired aphasia after his stroke and has been rebuilding his vocabulary word by word. This week Ryan and his wife Anna join us to share their story and talk about their new series of books to help adults learn or relearn to speak.

They make a great team.

(If you don't see the player below, visit http://Strokecast.com/AphasiaReaders)

About Anna and Ryan Teal

Aphasia Readers was created by husband-and-wife team, Ryan and Anna Teal. Prior to Ryan’s stroke, he was an intelligence analyst, and Anna has an extensive background in marketing.

Ryan had a massive stroke at the age of thirty-four, which left him with aphasia and apraxia. Throughout his recovery, the repetitive practice of reading out aloud seemed to be a tried-and-true form of speech therapy practice with promising results. However, the only books available to practice on a simple level were children’s books. As an adult, reading these types of books felt a little demeaning. Although Ryan and Anna had many good laughs reading aloud about “a trip to grandma’s house,” they quickly realized a need for simple, short readers with adult-themed content to support those in the aphasia community.

After more than a year in the making and extensive collaboration with the renowned Mary A. Rackham Institute University Center for Language and Literacy and input from top neurological teams, they finally wrote their first book of Aphasia Readers for adults. Their ultimate hope is to provide accessible and affordable supplementary speech practice tools for others in the aphasia community to help pave the way for a successful recovery.

Eagle Syndrome

Eagle Syndrome caused Ryan's stroke. It' a fascinating condition. Sometimes it's caused by tonsillectomy or throat trauma. Sometimes, the cause is less clear.

Basically the Styloid bone below the ear grows way bigger than it should. When it does that. Bad things can happen. It can cause throat and mouth pain. It can directly impact or squeeze nerves in the face or neck and cause pain that way.

Or in Ryan's case, the bones ca press against the carotid arteries (two of the four blood vessels that supply the brain) eventually blocking them off and severing the supply of blood. When blood flow to the brain or part of the brain gets blocked, that causes an ischemic stroke.

You can read more about Eagle Syndrome here: https://www.medicalnewstoday.com/articles/321946

Aphasia Readers

The Aphasia reader series of books is designed to help adults with aphasia learn to speak again. Anna and Ryan worked with the University of Michigan to validate the product.

The Aphasia Reader addresses the problem of needing simple books for adults to practice reading that aren't kids books. There is already a lot of infantilization that happens to adults when the go into the hospital or become disabled. Reading books about playing with toys or visiting a long deceased grandmother can feel insulting and further grind away at the self-esteem of an adult who finds themselves unable to speak, walk, or feed themselves.

The Aphasia Readers are a skill building alternative. Level 1 came out in 2021. You can find it here on Amazon* or from http://aphasiareaders.com

Levels 2 and 3 will be available sometime in 2022.

Hack of the Week

Ryan and Anna shared two hacks.

Ryan uses Otter.AI or the Google recorder app on his phone to follow conversations. They do voice-to-text conversion so you can get live captions of the conversation you are part of in real time.

This is technology that has come a long way in recent years. By both listening and reading a conversation at the same time, Ryan can more easily process what's being said, especially if the topic changes.

It's similar to watching TV with the closed captions on. I do that because it just makes things easier to follow. It means I'm less distracted by other things and I'm less likely to get lost while watching a program. The dialog and the captions reinforce one another.

(Special note: In my professional life I work as a contract trainer for Microsoft teaching journalists how to use Microsoft 365)

This technology is also available in a lot of online tools. Microsoft Teams includes closed captioning at no charge so you can turn it on and follow along with the speakers in real time. A presenter in PowerPoint can also enable captions (and translation) for their slides as the speak.

At the top of this article there is a link to a transcript of the episode. I create that using this technology. I upload the episode to the web in Microsoft Word and a few minutes later I have a transcript. If you'd like to learn more about that process, you can check out these 5, 90-second videos I created for Microsoft: http://aka.ms/TranscribeinWordOnTheWeb

The second hack they shared was the Fridge Functional Phrases. These are seasonal or event based lists of words or phrases someone with aphasia can practice. And Anna and Ryan put them on the refrigerator door. Every trip to the fridge becomes a chance to sneak a little speech therapy in.

You can find a bunch of their lists at this link or use the idea to make your own.

Links

(If you don't see the list of links below click http://Strokecast.com/AphasiaReaders)

Where do we go from here?

• Visit AphasiaReaders.com to learn more about Anna and Ryan's work
• Share this episode by giving people the link http://Strokecast.com/AphasiaReaders
• Subscribe to the Strokecast email newsletter at http://Strokecast.com/news
• Don't get best…get better

Listed in: Health

Finding Forward after Stroke

Jeffrey Morse went into surgery to repair an aneurysm. There was a 75% chance he wouldn't survive. Fortunately, he did wake up, but when he did, he discovered he was paralyzed from the neck down. Complications from the surgery that saved his life cause a spinal cord stroke that mean everything would change.

And then, after a lot of hard work, Jeffrey defied all the odds and walked out of the hospital.

One thing that jumps out at me from this interview is how much Jeffrey's career as a pilot informed his mindset and recovery -- perhaps more than he realizes.

You can hear the conversation in the player below or by clicking this link.

About Jeffrey A Morse

At 49 years old, Air Force reservist, flight instructor, and scuba diver Jeffrey Morse found himself lying in a hospital bed, paralyzed from the neck down after suffering both an aneurism and a stroke. Doctors told him that he would likely never walk again, but Jeffrey wasn’t the type to give up. With incredible inner strength, determination, and faith, Morse defied all odds against him. He set a goal that he would walk out of the hospital in six weeks when he was set to be released. And to the astonishment of his medical team, he did just that!

He continues to live with disabilities such as the use of his right arm--in fact, he wrote this entire book FINDING FORWARD: You Have the Will Within* with one hand. Still, Finding Forward encourages positive thinking and forward movement. With piercing honesty, Morse takes the reader through many of the challenges that he had to face through both therapy and every day life. He discusses the fears, the continuous claustrophobia, guilt from the burden he felt that he was putting on his loved ones... he shows how he dealt with these arising challenges and learned to overcome them. There is always a path forward, and as Jeffrey Morse says, we need to help each other find forward together. His mindset was liberating, and in many ways it saved his life.

The Pilot of his Recovery

Jeffrey served as a pilot in the military and in private life -- flying into and out of combat areas.

As he went into surgery, he knew he might not survive. He had spent his life living his life. By the time surgery came around he had already had to confront his mortality and the possibility that he might not come back from work. While that can happen to any of us, it's not something most of us spend time thinking about. It's part of the reason many of us were unprepared for stroke.

Jeffrey also talks about what to do when you encounter trouble in the air: Never stop flying the airplane.

As a pilot your job is to keep that plane flying until you want to put it down. For those of us not driving aircraft, it means figure out your most important task -- for example, to live -- and focus on doing that job. Live and move in the direction to keep living. Keep flying the airplane that is you, no matter what. It's your only option.

Jeffrey also described his process in various parts of the conversation in terms of steps he would take. He broke things down into their constituent parts and then executed them in order.

Checklists are an important part of flying. You go through the list every time for every step. When an emergency comes up, one of the first things a pilot will do (while the other pilot continues to fly the plane) is pull up an emergency checklist to govern their actions.

Checklist are not limited to airplanes of course. NASA uses them. Accountants use them. Logistics teams use them. The ER uses them when they call a stroke code. Checklists are an important part of everyday life and a great tool to use in our recovery.

With pilots it is such an ingrained habit and procedure that using checklists not only tells them what to do. It informs how they think about what they do. And that logical and determined thought process can get us through some very stressful times.

Finally, Jeffrey talked about the importance of communication with air traffic controllers around the world. The default language for all air travel is English, but that's not enough to ensure clear communication when thousands of lives are at risk. First, even among native US English speakers, there are miscommunications over words and pronunciations.

For example, in college, I, a native New Yorker, was pair with Angie, a native Texan, for a game of Pictionary. We ended up in a bit of a conflict because she disagreed when I said that "saw" and "sore" were pronounced the same. She insisted they were pronounced differently.

Now, expand the challenges beyond the US an when speaking English with folks from England, we can still have language based communication challenges. Simple words like "pants" mean different things in the two countries.

And that's to say nothing of the rest of the world where English is not someone's first language.

Aviation English makes strict use of vocabulary that is standardized across dialects around the planet to enable pilots to communicate key facts, questions, answers, and instructions with other pilots and controllers to reduce the likelihood of mistakes.

We see this in the medical field, too. There is very specific language. Outside the medical context, its fine to say, "My arm is not straightening today. In the medical field we might say, "I'm experiencing high tone in my bicep." Neither is wrong; just like "sore" and "saw" are pronounced the same. One is just more precise than the other. That precision can make difference between treating an arm for tone and spasticity in an overactive bicep, or simply pursuing exercises to break down accumulated fascia.

Jeffrey talked about learning and using the language of the doctors and therapists. Doing so makes communication clearer and faster which can result in better treatment and quicker relief.

And these are just some of the ways that a lifetime in aviation has informed Jeffrey's thought process. It would not surprise me to learn there are many more.

Fascia and the Fuzz Speech

Jeffrey gets a lot of relief from neuro-muscular massage. This technique breaks up the fascia that naturally forms on and between muscles. As it builds up, it makes it harder to move. It's why our muscles feel stiff when we first get out of bed or if an injury keeps us immobilized for a time.

Massage, Tai Chi, Yoga, aerobics, and really any extensive movement can help break it down and help us move with less resistance.

The video, "The Fuzz Speech," is a fascinating exploration of fascia. It's the one Jeremy talked about in our conversation. You can watch The Fuzz Speech here.

The Writing Process

To hold and read a book that someone has written and published it kind of amazing. Those incredibly thin documents, with ink and pigments spread throughout them in precise patterns, are piled on top of each other and combined transmit a deeply personal story from one person to another.

And how does this magical artifact come into being? What complex steps do authors have to take?

Again and again they tell me you just have to write. You can listen to other conversations I've had with authors at http://Strokecast.com/authors and you hear that theme keeps coming up, expressed slightly differently.

In Jeffrey's case, he says it comes down to simply butt-in-seat time. You've got to carve out the time and then dedicate that time to just making it happen. If you don't feel you have the skills to create a polished manuscript, that's okay. A ghost writer, like Bonnie, can help with that part. But it's still your story and your feelings that you need to get on the page. And to do that, you just have to consistently take the time and do it.

Hack of the Week

Carry a flashlight with you.

This is even more important this time of year in the northern hemisphere when it gets darker earlier and stays darker later. You need to be able to see where you are going, and many of us need to be able to see our feet while walking. You don't want to trip over something in the dark and have another injury.

A flashlight doesn't need to be a big thing. It can be a small thing. There are plenty of designs that will fit on a key chain or in a small pocket. You can even find options for connecting them to your cane.

Before my stroke, whenever I travelled I kept a small "tactical" flashlight in my pocket. It was bright, had a strobe function, and was easy to hold in one hand. It was great when power would go out in a hotel, I would try to find things in an unfamiliar rental car, or an airplane would have a power glitch. I also found it helpful to have the extra light when I plug cables in. 

You can often get free ones as branded give aways from all sorts of organizations, if you don't have one. Your doctor's office may even have some spares laying around printed with the name of whatever drug the pharmacy reps are promoting on any given day.

Or you can order one to fit your particular needs. Obviously, flashlights are not hard to find. Here are a few I found on Amazon that look interesting:

OLIGHT I1R 2 Eos 150 Lumens EDC Flashlight Powered by a Single Built-in Rechargeable Li-ion Battery, Tiny Rechargeable Keychain Light USB Charging Cable Included*

This one is cheap, fits on a keychain, and you can easily recharge it from a computer or many phone chargers.

Streamlight 66122 Stylus Pro 100-Lumen Penlight*

This is slimmer and longer. It will be more at home in a short or coat pocket or a purse or bag. The classic pen light can be unobtrusive when you don't need it. Some folks with dexterity challenges may find it harder to hold with an affected hand.

Fenix PD36R 1600 Lumen Type-C USB Rechargeable EDC Tactical Flashlight*

This type definitely gets more spendy. It may be overkill for most purposes, but it is super bright and durable. It's practical, the strobe may make you feel safer since it may temporarily blind someone who may cause you harm, and…and…Ok. It's kind of an expensive toy. But look how cool!

LightBaum- Adjustable LED Flashlight for Crutches, Canes, & Walkers*

This is interesting. It's a flashlight you can mount on a cane or other mobility device. You don't have to hold it and can use it to directly illuminate your path in the dark.

PS ZAP Cane 1,000,000 Volts W/CASE*

Finally, if it's legal for you to purchase one and possess one in your jurisdiction, this may be an option if you need a weapon of some sort. The cane has a built-in flashlight, sure, but it can also shock someone with a million volts.

Links

(If you don't see the table of links below, visit http://Strokecast.com/FindingForward)

Where do we go from here?

• Connect with Jeffrey on Facebook and check out his website at JeffreyAMorse.com
• Share this episode with someone you know by giving them the link Http://Strokecast.com/FindingForward
• Sign up for the monthly Strokecast email news letter at http://Strokecast/com/News
• Don't get best…get better

Listed in: Health

Surfer, Author, and Stroke Survivor Blake Hill's Journey

Blake Hill is an over achiever with an easy going attitude. Talking to him, you get the sense of a calm guy going with the flow, but underneath, he is paddling like crazy to get to the next big wave.

After surviving a stroke, the turbulence in his life continued to increase, to the point where he was biking up a mountain in Canada and knew it was time to write Westfalia*. We explore the events leading up to his mainly auto-biographical novel in this episode.

If you don't see the audio player below, visit http://Strokecast.com/ByBlakeHill to listen to the conversation.

About Blake Hill

Blake is often thought of as a quiet person. Put a strong cup of good coffee in him and he becomes a chatter box. Although quiet on the surface his brain is always engaged and bounces from thought to thought. If you ask him his greatest accomplishment in life. It would be his role as Dad. Blake has two amazing children. He has spent countless hours flying on airplanes and traveling the world with his pro-surfer son. They have chased waves from California to Europe, Mexico, Indonesia, Japan, Australia and countless other destinations. He’s the proud dad of a daughter who’s strong and independent with a passion for dance.

Blake’s professional life began in the movie business doing lighting for movies and TV shows. During this time period he would balance working on set with cultivating his passion for writing. His day would typically begin at 3am. He honed his craft for writing screenplays while also working on the set of movies. Over the years he amassed a collection of ten screenplays and a children’s book along with having his poetry published many times.

Once his children were born he chose to quit the movie business and focus on his kids. This was truly an amazing time in his life and a true gift from the universe. He is truly grateful to have had so much time with his children while they were growing up.

There’s an adventurous spirit that lives within his soul. He’s been riding motorcycles since he could walk. He’s raced motocross, hare n’ hounds and spent days riding across the Mojave Desert and camping under the stars. His rides across the USA have taken him through blizzards, tornadoes, and across the Arctic circle.

His passion for life was dimmed one day when he encountered a stroke. It was as if a light switch had been turned off. This experience was beyond humbling and fueled his passion for living even more. He’s not only physically strong but he’s mentally fit. The stroke tested his will and mental fortitude. He kept the event private with only a few friends knowing about his mental capacity. He was challenged by the everlasting question of; how are you feeling? His focus was on healing and getting his memory back. He didn’t want the constant reminder of what had happened. His physical self is truly one hundred percent. His mental self is challenged occasionally with loss of memory. He is extremely grateful to be where he is today on a physical, emotional and spiritual level.

Blake’s typical day begins at 4am with an awesome cup of coffee, splashed with cream while spending some quiet time with his two dogs. He works out with free weights, resistance bands, hikes with his dogs and tries to surf every day. He believes that keeping active mentally and physically is the key to happiness. He’s 55 years old and with each and every wave he surfs, he strives to ride the next one better than the last. He truly feels blessed for his amazing life.

You can find Westphalia at Amazon* or wherever you find your books.

Writing Practice

Blake's method of writing combines old school and new.

He starts with a distraction-free environment. To keep himself in the mindset of writing every time, he listens to the same music -- Jackson Browne's Solo Acoustic Volumes 1 and Volume 2.*

He also does all his drafts on yellow legal pads.

These habitual behaviors help ease the brain into writing mode.  It's another way of leveraging the power of neuroplasticity -- the nerves that fire together, wire together. By reinforcing these patterns repeatedly, it makes it easier to write in the future.

Then, he takes his handwritten drafts and types them up. As he types them in to the computer, he's doing a first editing pass.

Visualization

Blake talks about the importance of visualization.

He describes how athletes learn to enhance their performance by visualizing that performance. In their mind they go through the movements, activities, and successful results. The idea is that parts of he brain can't distinguish between actually doing a thing and visualizing doing a thing. You get extra practice. 

Last year, Peter Levine, author of Stronger After Stroke, talked about the same thing. Peter talked about it from thew scientific/medical perspective.

According to studies with FMRI machines, when you watch someone walk or run, you activate the same part of the brain that lights up when you actually walk or run. Imagining the activity gives you similar results to doing the activity.

The best parts of visualization is that it's free and completely harmless. There is no downside and there is a significant upside. So when you have a few moments or hours as you try to get back a limb or control your jaw, take some time to imagine yourself doing it again and again.

To learn more, listen to my interview with Peter G Levine in this episode.

Hack of the Week

Blake talked about his strategy for dealing with the massive life changes after a stroke.

1. Accept where you are. You can start to fix a situation or otherwise address it.
2. Process it. Spend some time with the situation and feel your feelings about it. Ignoring your feelings isn't going to help.
3. Forgive yourself for your feelings. If your feelings are counterproductive, that's okay. Forgive yourself for feeling that way. Then you can work on the situation or reality that you are in.
4. Visualize where you want to be. Leverage the power of your brain to engage your natural neuroplasticity. Figure out how you want your life to look, and visualize your life that way and your abilities that way. Do it again and again.
5. Use your mantra. A preferred phrase or mantra can help you center yourself and bring your mind back to focusing on your priorities and where you want to be.

Links

Helpful resources for more information.

(If you don't see the links below, visit http://Strokecast.com/ByBlakeHill)

Where do you want to go from here?

• Learn more about Blake and his work at ByBlakeHill.com and connect with him on Instagram @ByBlakeHill
• Share this episode with someone you know by giving them the link http://Strokecast.com/ByBlakeHill
• Subscribe to the free Strokecast email Newsletter at Strokecast.com/News
• Don't get best…get better

Listed in: Health

Surfer, Author, and Survivor Blake Hill's Journey

Blake Hill is an over achiever with an easy going attitude. Talking to him, you get the sense of a calm guy going with the flow, but underneath, he is paddling like crazy to get to the next big wave.

After surviving a stroke, the turbulence in his life continued to increase, to the point where he was biking up a mountain in Canada and knew it was time to write Westfalia. We explore the events leading up to his mainly auto-biographical novel in this episode.

To listen to episode, click the player above or click this link.

About Blake Hill

Blake is often thought of as a quiet person. Put a strong cup of good coffee in him and he becomes a chatter box. Although quiet on the surface his brain is always engaged and bounces from thought to thought. If you ask him his greatest accomplishment in life. It would be his role as Dad. Blake has two amazing children. He has spent countless hours flying on airplanes and traveling the world with his pro-surfer son. They have chased waves from California to Europe, Mexico, Indonesia, Japan, Australia and countless other destinations. He’s the proud dad of a daughter who’s strong and independent with a passion for dance.

Blake’s professional life began in the movie business doing lighting for movies and TV shows. During this time period he would balance working on set with cultivating his passion for writing. His day would typically begin at 3am. He honed his craft for writing screenplays while also working on the set of movies. Over the years he amassed a collection of ten screenplays and a children’s book along with having his poetry published many times.

Once his children were born he chose to quit the movie business and focus on his kids. This was truly an amazing time in his life and a true gift from the universe. He is truly grateful to have had so much time with his children while they were growing up.

There’s an adventurous spirit that lives within his soul. He’s been riding motorcycles since he could walk. He’s raced motocross, hare n’ hounds and spent days riding across the Mojave Desert and camping under the stars. His rides across the USA have taken him through blizzards, tornadoes, and across the Arctic circle.

His passion for life was dimmed one day when he encountered a stroke. It was as if a light switch had been turned off. This experience was beyond humbling and fueled his passion for living even more. He’s not only physically strong but he’s mentally fit. The stroke tested his will and mental fortitude. He kept the event private with only a few friends knowing about his mental capacity. He was challenged by the everlasting question of; how are you feeling? His focus was on healing and getting his memory back. He didn’t want the constant reminder of what had happened. His physical self is truly one hundred percent. His mental self is challenged occasionally with loss of memory. He is extremely grateful to be where he is today on a physical, emotional and spiritual level.

Blake’s typical day begins at 4am with an awesome cup of coffee, splashed with cream while spending some quiet time with his two dogs. He works out with free weights, resistance bands, hikes with his dogs and tries to surf every day. He believes that keeping active mentally and physically is the key to happiness. He’s 55 years old and with each and every wave he surfs, he strives to ride the next one better than the last. He truly feels blessed for his amazing life.

You can find Westphalia at Amazon* or wherever you find your books.

Writing Practice

Blake's method of writing combines old school and new.

He starts with a distraction-free environment. To keep himself in the mindset of writing every time, he listens to the same music -- Jackson Browne's Solo Acoustic Volumes 1 and Volume 2.*

He also does all his drafts on yellow legal pads.

These habitual behaviors help ease the brain into writing mode.  It's another way of leveraging the power of neuroplasticity -- the nerves that fire together, wire together. By reinforcing these patterns repeatedly, it makes it easier to write in the future.

Then, he takes his handwritten drafts and types them up. As he types them in to the computer, he's doing a first editing pass.

Visualization

Blake talks about the importance of visualization.

He describes how athletes learn to enhance their performance by visualizing that performance. In their mind they go through the movements, activities, and successful results. The idea is that parts of he brain can't distinguish between actually doing a thing and visualizing doing a thing. You get extra practice. 

Last year, Peter Levine, author of Stronger After Stroke, talked about the same thing. Peter talked about it from thew scientific/medical perspective.

According to studies with FMRI machines, when you watch someone walk or run, you activate the same part of the brain that lights up when you actually walk or run. Imagining the activity gives you similar results to doing the activity.

The best parts of visualization is that it's free and completely harmless. There is no downside and there is a significant upside. So when you have a few moments or hours as you try to get back a limb or control your jaw, take some time to imagine yourself doing it again and again.

To learn more, listen to my interview with Peter G Levine in this episode.

Hack of the Week

Blake talked about his strategy for dealing with the massive life changes after a stroke.

1. Accept where you are. You can start to fix a situation or otherwise address it.
2. Process it. Spend some time with the situation and feel your feelings about it. Ignoring your feelings isn't going to help.
3. Forgive yourself for your feelings. If your feelings are counterproductive, that's okay. Forgive yourself for feeling that way. Then you can work on the situation or reality that you are in.
4. Visualize where you want to be. Leverage the power of your brain to engage your natural neuroplasticity. Figure out how you want your life to look, and visualize your life that way and your abilities that way. Do it again and again.
5. Use your mantra. A preferred phrase or mantra can help you center yourself and bring your mind back to focusing on your priorities and where you want to be.

Links

Helpful resources for more information.

(If you don't see the links below, visit http://Strokecast.com/ByBlakeHill)

Where do you want to go from here?

• Learn more about Blake and his work at ByBlakeHill.com and connect with him on Instagram @ByBlakeHill
• Share this episode with someone you know by giving them the link http://Strokecast.com/ByBlakeHill
• Subscribe to the free Strokecast email Newsletter at Strokecast.com/News
• Don't get best…get better

Listed in: Health

100% with Stroke Survivor and Porn Star Misha Montana

(If you don't see the audio player above, visit http://Strokecast.com/Misha)

Misha Montana puts 100% into everything that she does. From her prodigious and impressive collection of tattoos, to her work ethic, to her unconventional career choices, to now her commitment to raise awareness of the challenges of post stroke life.

Misha joined the stroke club this past spring when her COVID-19 infection spawned a blood clot that slipped through her PFO and lodged in her brain at the age of 31. Despite memory and energy level challenges, along with lingering hemiparesis, she quickly returned to work, determined to not let her stroke stop her.

About Misha

Misha Montana is an adult film star/Director and the Chief Brand Officer and Production Manager for AltErotic. Misha lives in Reno, NV and Los Angeles and cares for her special needs son. In her off time Misha is a cyclist and bodybuilding enthusiast with interest and education in political science and psychology. Misha suffered a stroke on April 14th, 2021 and had heart surgery to repair a PFO shortly after. Misha is an advocate for stroke awareness and is extremely passionate about the cause.

What is a PFO?

A PFO, or Patent foramen ovale, is a hole inside the heart. Roughly 25% - 33% of people have a PFO, including me.

The heart has 4 chambers -- two on the right and two on the left. When blood comes into the heart, it enters on the right side. From the right side of the heart it goes to the lungs to dump carbon dioxide and pick up oxygen for the rest of the body. From the lungs, it goes to the left side of the heart. Along the way, blood clots that accumulate in the system naturally get filtered out. The left side of the heart sends this now oxygen rich blood to the brain, toes, and everything in between.

At least that's how it's supposed to work after birth.

Before birth, while we are still building organs and body parts in the uterus, there is no oxygen for us to breathe. There's no air. We instead get all of our oxygen nutrients, and other stuff through the umbilical cord attached to our mothers system. Since there's no air, there's no reason for blood to go from the right side of the heart to the lungs. It goes straight from right side to left side through the PFO - the hole between the right and left.

That hole is supposed to close on its own shortly after birth when we start breathing air. For most people it does. For up to a third of people it does not.

As we get older, that hole may or may not cause a problem, depending on how big it is and how prone we are to developing blood clots. It allows unfiltered, unoxygenated blood to bypass the lungs and go straight to the left side of the heart and on to the rest of the body.

When a blood clot sneaks through the PFO, bad things can happen. That's how Misha had her stroke. A clot formed as a result of her COVID-19 infection, slipped through her PFO, and lodged in her brain.

She has since had her PFO surgically closed. It's a fairly simple procedure, as internal heart surgery goes.

Other folks on this show have also had PFO related strokes, including Christine Lee in the pre-COVID times.

My PFO did not cause my stroke. Mine was due mainly to high blood pressure. As part of the stroke protocol at the hospital though, they did find the PFO. A follow-up exam afterwards, which involved an ultrasound device put down my throat (thankfully with some awesome sedation) confirmed it was there, but likely too small to cause a problem. They decided to leave it alone.

But now I have a ready excuse for why I was never an endurance athlete.

Driving After Stroke

Misha talked about driving herself to the hospital. Jo Ann Glim did the same thing when she had her stroke.

Both will tell you now not to do that. It's a bad idea.

Of course, I don't blame them. At the time our brains are dying, we are not making the best, most informed decisions.

But what about after stroke?

In the US, driving requirements are set at the state level. Whether you can legally drive after stroke depends on where you live. In most states, if you have had a seizure, you can't drive until it's been at least 6 months after your last seizure.

For other brain injuries, it's more varied. I'm told that a stroke will suspend your license in California. In Washington state, where I live, the state does not suspend thew license of a stroke survivor. The day after my stroke, legally I could drive. That would have been a terrible idea because at that point it simply would have been dangerous.

Driving after a stroke is something to discuss with your doctor and occupational therapist. The decision will depend on whether you can get in and out of d a vehicle safely and operate the controls safely and competently. It will depend on you vision and visual/auditory processing, cognitive abilities, emotional stability and more. There is a lot to consider.

They may refer you to a driving therapist -- someone who specifically trains people with disabilities and brain injuries to drive. They may teach you new skills, or they may simple provide a comprehensive assessment of your ability to drive safely.

I started driving again about 10 weeks after my stroke. I had an assessment with a driving instructor, which included an in person interview and a road test. After riding with me as I navigated the ridiculously tight parking garage in my building and the small, dense roads of my neighborhood, he signed off on me driving and sent the recommendation to my physiatrist.

It cost me roughly $500 and that was not covered by insurance.

I did get two modifications to my car. I added a spinner to the steering wheel so I could manage it with one hand, and I added a turn signal extension so I could use my right hand for that, too.

Oh, and I got my disabled parking license plates!

Driving is a major step in living a new life and having the freedom to get stuff done, especially if walking or public transit are more challenging after stroke. It's also an inherently risky activity with life and death consequences that ought not be taken lightly.

Choose wisely.

Adult Entertainment Industry

As far as I know, Misha is the first professional adult entertainer that I have had an extended conversation with.

Given the scale of the industry, I imagine I have had extended chats with other current or former professionals in the field, but given the stigma it wasn't something that came up.

(Though there was that woman on a Northwest flight who struck up a conversation and when I asked her field of work said, "I provide miscellaneous personal services," and then quickly changed the subject.)

What I really liked was how Misha describes the community and her colleagues. Talented, hard-working, kind and compassionate people just living their lives in an unconventional field and dealing with societal stigma. Often condemned and criticized for their choices by the very people consuming their content.

I don't have strong opinions on it. As long as all involved are consenting adults that's really what matters.

Misha's work in porn is the proverbial elephant in the room here so I can't very well not comment on it. Yet I don't want to make it the whole focus of the conversation, because that would disregard my guest's individualism. And I must restrain my inner thirteen year old from making silly awkward jokes.

So despite opining for six (now seven) paragraphs (and making it about me), the best thing for me to do here is listen to what folks have to say about their experiences.

Hack of the Week

Misha talks about the importance of her planner for keeping track of appointments and other reminders. After stroke or brain injury that impacts executive function, we can't just keep all this stuff in our heads. Even without brain injury, it's probably not a good idea to keep it in our heads. The logistics of life take space and energy in our brains. Using a planner - digital or paper can make a big difference in effectively managing our lives.

The other thing it can do is provide a place to write or to journal. There's value in getting our thoughts out of our heads and onto a list or into a paragraph. I find things will rattle around in my skull until I can record them elsewhere. Even if it’s a stressful thing or a worry, getting it down somewhere actually reduces my stress because at one level, "it's been dealt with."

Paper and pen are one way to do it. Typing on a keyboard or tapping on a phone screen are another. Voice memos or selfie videos are another. Find a way to journal or record your thoughts that is compatible with any deficits you have and that works for your comfort level

Links

(If you don't see the table of links below, visit http://Strokecast.com/Misha)

Where do we go from here?

• Connect with Misha on Instagram or on her other platforms where you can find Misha's adult content
• Share this episode with someone you know by giving them the link http://Strokecast.com/Misha
• Subscribe to the Strokecast email newsletter at http://Strokecast.com/news
• Don't get best…get better

More thoughts from Misha Montana

Listed in: Health

Texan, Stroke Survivor, Writer, Hiker, and One-handed Guitar Player shares his Story

The name "Avrel" means either "Elven King" or "Wild Boar" depending on who you ask. Fortunately, while Avrel Seale is not boring, this multi-book author and stroke survivor is the guest on Strokecast this week.

Our discussion of course covers Avrel's story, but we also get into a discussion about the nature of Generation X and how all this discussion of generations came to be. Avrel also has some great insights into the writing process.

His latest book is "With One Hand Tied Behind my Brain"*, so after you listen to our chat, pick up a copy from your favorite book store.

(For the full content, audio, and video in this story, visit http://Strokecast.com/Avrel)

About Avrel

From https://avrelseale.wordpress.com/bio/

Avrel Seale has authored 10 books, including memoir, humor, philosophy, history, religion, and unsolved mystery. He lives in Austin, Texas, with his wife, Kirstin, and three sons.

In 2018 at age 50, Seale had a major hemorrhagic stroke that left him partially disabled. His story of survival and adaptation, With One Hand Tied Behind My Brain: A Memoir of Life After Stroke*, was published by TCU Press in 2020. His one-handed guitar playing was featured on NPR’s All Things Considered.

In 2017, his memoir Monster Hike: A 100-Mile Inquiry Into the Sasquatch Mystery* was published by Anomalist Books to positive reviews. Wendy Garrett of KCMO Talk Radio in Kansas City called it “fascinating and compelling.” Nick Redfern called it “highly entertaining … a witty, amusing, and adventurous saga.” Andrew W. Griffin wrote, “There is something Walden-ish about Monster Hike that I did not anticipate when I first picked it up … as much about ourselves and our place in nature as it is about ‘monsters.’ ” And Loren Coleman named it one of the 10 Best Cryptozoology Books of 2017.

Dude: A Generation X Memoir* was included in the Austin American-Statesman’s “Best Books of 2008.” Staggering: Life and Death on the Texas Frontier at Staggers Point (2014) chronicles the arrival of Seale’s ancestors in Texas in the 1820s and 1830s and the tumultuous events and brutal conditions of the pioneering years.

Seale often writes and speaks about the Baha’i Faith. In addition to numerous articles about the religion, his books The Hull, the Sail, and the Rudder (2006)*, True Freedom and the Wisdom of Virtue (2007)*, and The Tree – A Spiritual Proposition (2008)* deal extensively with Baha’i concepts.

Though predominantly a nonfiction author, he has written two novellas — the afterlife comedy The Grand Merengue* and The Secret of Suranesh*, which he originally wrote and co-produced as an independent feature film.

His latest book, Nuts: Down the Nueces River With One Stroke, is awaiting publication.

Seale grew up in McAllen, Texas, the son of writer Jan Seale, the 2012 Texas Poet Laureate, and composer and conductor Carl Seale. Earning a bachelor’s of science in radio-TV-film from The University of Texas at Austin in 1989, he returned to the Rio Grande Valley, where he started his writing career as a reporter and a columnist for the McAllen daily newspaper, The Monitor.

In 1992, he returned to Austin and served 16 years as editor of the UT alumni magazine, The Alcalde. From 2011-2015 he served as speechwriter for the president of The University of Texas. Since 2015, he has been a writer and editor in the university’s news, marketing, and development offices.

Subject Matter Expertise:

• Stroke
• Baha’i Theology
• 19th century East-Central Texas History
• Crypto-hominology (sasquatch/bigfoot)
• Persuasive Writing
• The University of Texas at Austin

Homunculus

The core principle of neuroplasticity is the cells that fire together, wire together. The more you do a thing, the more connections will form in your brain to do that thing again. More connections mean more real estate gets taken up in the brain for that task.

A professional basketball player will have a lot more neural connections dedicated to free throws than I will. I might have two. And one of those is dedicated to spelling it.

The metaphor of the homunculus is helpful in understanding how this impacts brain injuries.

The homunculus is a representation of the brain and various parts of the body. The more you use a part of the body, the more neurons it takes up in the brain. For example, the hands and tongue take up more space in the than the elbow and pinkie toe.

The more time and energy you dedicate to something, the more space in your brain is dedicated to that task. For example, a homunculus of my brain would likely show a much larger segment dedicated to speaking than to throwing a baseball.

One way I think about how this applies to survivors (and I may be stretching the homunculus analogy) is that a skill from the prestroke days that a survivor was an expert at may come back before a skill one had limited experience with simply because despite the damage there were simply more nerves dedicated to it.

As you continue to work on a skill post stroke, a larger portion of the brain will be dedicated to it. More nerves, dendrites, and synapses will become involved. This is neuroplasticity at work.

Writing Plan

Avrel writes books, writes speeches,  and writes lots of other stuff, too. He also teaches writing.

Avrel's recommendation for anyone wanting to write a book is to make sure you have something to say. A typical non-fiction book is going to be somewhere between 60,000 and 120,000 words. To give you an idea of what that means, a typical episode of this show is 10,000-14,000 words.

To find out if you have something to say, Avrel suggests writing a long essay about your experience -- about 8,000 words. If you can't get 8,000 words from your experience, maybe you don't know what you want to say, yet. That could change in the future, or you may find another platform for your story.

And once you do get to 8,000 words, you have a thing that you can shop around to magazines or to flesh out further and turn into a book. That long form document becomes the foundation that you can build the rest of your narrative on.

To learn more about writing a memoir, also check out my conversation with Christine H. Lee at http://Strokecast.com/writeyourstory

Guitar Playing

Back in episode 22, I spoke with Craig Martin from OnlineBuske.net. Craig was a British professional guitar player working at clubs and restaurants in Spain when he had his stroke. It took one of his arms and he had to learn to use it again to get back to his beloved guitar playing.  And then it happened again.

Today, he plays guitar and sings. He posts some amazing videos on OnlineBusker.Net and uses them to raise money for stroke organizations around the world. You can hear that conversation at http://Strokecast.com/OnlineBusker

The reason I mention that is Avrel is also a guitarist -- a one-handed guitarist. You can hear some of his playing at the end of the episode or check out this video:

You can see more of Avrel's guitar playing on his YouTube channel. If you play guitar, I'm sure you'll be fascinated by his tutorials, too.

Caffeinated Comics

William Shatner released a new album and went to space. So that was my cue to join Jon Clarke on the Caffeinated Comics podcast to talk about it.

Jon and I are long-time Star Trek fans and I've been fascinated by Shatner for years. In the beginning it was because of the combination of absurd projects he'd done combined with his reported arrogance and poor treatment of other Star Trek cast members. As we've all matured and I've read his memoirs and listed to his music and watched his talk show, I became fascinated in a different way.

His latest album is called simply "Bill" and explores themes of depression, loneliness, guilt, connection, death, love, and horses. Some folks experiencing their own mental health challenges may find it triggering, but it's a fascinating piece of art. You can get the CD here* or find it in the streaming service of your choice.

To listen to the conversation Jon and I have, click here, search for Caffeinated Comics in your favorite podcast app, or just click play below.

Hack of the Week

Avrel's hack is all about playing the guitar. He's able to make the notes and chords by using hammer on and pull off techniques on the fret board. This works well on an electric guitar.

You can see more of Avrel's guitar playing on his YouTube channel. He doesn't just play most of the songs. He also takes the time to demonstrate how he does it and teaches his hammer on technique.

On some tracks, Avrel also uses a digital looing device to expand his playing further.

Links

Where do we go from here?

• Check out Avrel's website to learn more about his varied interests
• Share this episode with someone you know by giving them the link http://Strokecast.com/Avrel
• Subscribe to the free Strokecast email newsletter at http://Strokecast.com/news
• Don't get best…get better.

Listed in: Health

Stroke in Antarctica in a Novel

I don't see many novels that deal with stroke and aphasia. Memoirs, sure, but not novels. That's one of the things that makes Jon McGregor's novel, Lean Fall Stand,* interesting. That, pls the fact that Jon himself is not a stroke survivor. He's someone who has taken an interest in our community an endeavored to learn more.

Jon's novel follows the story of Robert, a research scientist in Antarctica. Robert gets caught in a storm , suffers a stroke, and acquires aphasia. The novel chronicles Robert and his wife's adventures as they enter and then adjust to living in stroke world.

Jon and I talk about the book, Jon's research, his adventure in Antarctica, writing beyond an author's personal experience, and more.

If you don't see the audio player below, visit http://Strokecast.com/Antarctica to listen to the conversation.

About Jon McGregor

Jon McGregor is the winner of the International IMPAC Dublin Literary Award, the Costa Book Award, the Betty Trask Prize, the Somerset Maugham Award, and the American Academy of Arts and Letters E. M. Forster Award, and has been long-listed three times for the Man Booker Prize, most recently for his novel, Reservoir 13. His latest novel, Lean Fall Stand*, is out from Catapult in September 2021. He is professor of creative writing at the University of Nottingham, England, where he edits The Letters Page, a literary journal in letters.

Jon's Resources

Jon talks a lot about the research he did to understand the experience of stroke and aphasia. He met with therapists. He talked with survivors. He attended support groups.

The Stroke Stories podcast is another resource he used to learn about Aphasia and stroke from a survivor's perspective. It's a show that tells stories more as news type pieces rather than in a traditional podcast interview. You can find it in popular podcast apps.

A couple years ago, I was lucky enough to be a guest on the show. You can listen to that episode here: Stroke Stories Episode 50 - Bill Monroe

The Aphasia Access Conversations podcast is another one Jon found helpful. It's a show focusing on the education, experience, and thoughts of speech therapists who work with folks who have aphasia.

For more stroke related podcasts, visit http://Strokecast.com/StrokeRelatedPodcasts.

Jon also learned from Sara Scott's YouTube channel. Sarah survived a stroke at age 18, about 12 years ago. Since then she has posted videos recognizing various strokeaversaries. You can watch her progress in dealing with aphasia over the decade and see her recovery over the years.

Sarah Scott 10 years living with Aphasia

Edwyn Collins is a Scottish musician who made it onto the worldwide charts in the 80s with his post-punk band Orange Juice. He survived a stroke with aphasia in 2005. Jon drew inspiration from the documentary of Edwyn's story, "The Possibilities are Endless"

The Possibilities Are Endless (Official Trailer)

Jon also learned from the Stroke Odyssey production from Rosetta life:

SO Trailer 7

Artists' Residencies

Artist residencies are a fascinating thing. In the one Jon talked about, he applied to go to Antarctica. He would be provided transportation, lodging, and access to the work of research scientists. In return, he would, eventually, make a thing.

In Seattle a couple years ago, the city offered space in a draw bridge that an artist could have for months to make a thing inspired by the space.

The variety of residencies available to artists is kind of amazing. It's an interesting intersection of public relations, marketing, public art, patronage, and other elements.

If you feel a desire to create but want space, education, or inspiration, it may be worth exploring the idea of residencies.

Writing About Marginalized Communities

We discussed the idea of writing about marginalized communities in this interview, specifically about disabled people or people with disabilities.
 

A lot of the same concerns apply when writing about folks of a different race, gender identity, sexual orientation, religion, cultural background, etc.

When you write a character who is of a different group, especially if the character is part of a historically marginalized group, the writer has a special obligation to get it right -- to make sure they can write about the character and the character's experiences with honesty, accuracy, and individuality, without reducing them to a series of stereo types.

I've read parts of Lean Fall Stand* (Jon's team sent me a copy) and so far, his portrayal seems good. Of course, my experience with aphasia is all second hand. I'd encourage you to check it out and share your thoughts.

Become a better writer

Jon is a long time novelist and a professor of creative writing. You might expect him to have advanced models and techniques for becoming a better writer and telling better stories. But what is Jon's advice?

Read more.

Write more.

It's that simple. Sure you need to read deliberately and think about the choices a writer makes in the pieces you read.

To get better at walking, we need to walk more. To get better at moving our fingers we have to move our fingers more. To get better at speaking, we have to speak more.

To get better at writing, we have to write more.

More reading and more writing. Hmm. I can get behind that.

Hack of the Week

Jon talked with as bunch of folks with aphasia and cited two things they did that were helpful.

First, the used their phones and tablets to help communicate. It wasn't just about typing out messages or using special apps, though. It was about using other tools for communication. For example, telling the story of travelling to a city by using the maps app. It was about thinking of different ways to share the story without strictly telling the story.

Second, a lot of the folks Jon spoke with carried a card that explained they have aphasia and explains what aphasia is. There are still millions of people out in the world who have never heard of aphasia and folks with aphasia still have to deal with them. A simple card can make a big difference.

Links

(If you don't see the list of links below, try visiting http://Strokecast.com/Antarctica)

Where do we go from here?

• Follow Jon on Instagram and Twitter.
• Take a look at Lean Fall Stand on Amazon*
• Share this episode with the book or writing lover in your life by giving them the link http://Strokecast.com/Antarctica
• Subscribe to the Strokecast newsletter at http://Strokecast.com/News
• Don't get best…get better.

Listed in: Health

London Cop and Stroke Survivor Becomes a Fantasy Author

James Horton was a young police officer in London. He was 27 and felt invincible. His partner (personal one, not police one) was about to give birth to their first child. Naturally, that's the time a life of high blood pressure caught up with him and he experienced a hemorrhagic stroke.

In this week's conversation, we James and I talk about that experience, how policing in London compares to policing in the US, how his stroke impacted his life and career, and how he came to write his fantasy novels in the Blue Swords series.*

You can listen to our conversation in the player above or in your favorite podcast app. If you don't see the player, visit the full article at http://Strokecast.com/JamesHorton.

About James

From James' Amazon Author page:

James Horton left his hometown in rural Lincolnshire to join the police service in London at the age of nineteen. Serving as a police officer in several units, James has had his eyes opened to the highs and lows that comes with serving as a constable.

Suffering a stroke at the age of twenty-seven, James turned to historic action novels to help settle his mind and aid his recovery.

After his recovery, James decided to start writing his own novel, combining a career in the police and his passion of medieval stories. His first book, BLUE SWORDS, the first of The Crimes and Crests Saga has been based on true events, merged with a historic twist.

Author profits for Blue Swords, books 1&2* will be donated to the Stroke Association UK.

James would love to hear from his readers and can be contacted via his author page.

High Blood Pressure

High Blood Pressure is a major cause of stroke. It caused James' stroke. It caused my stroke. It caused the stroke of many of my guests. It's easy to check because home blood pressure monitors are pretty cheap.

Many people don't check, though. And many never know they even have high blood pressure until it's too late.

And that's because it doesn't hurt.

Generally, high blood pressure causes no pain or outward symptoms while it's slowly destroying our blood vessels, as surely as the surging Colorado River destroyed the rocks in the Arizona dessert to carve the Grand Canyon. That's a beautiful thing to look at in the ground. It's not so beautiful when it's happening in our bodies.

I only found out about mine when I started getting massive nose bleeds at random. By that point, the damage that would lead to my stroke had already been done.

The American Heart Association recommends we work to keep our blood pressure below 120/80 (I'm currently right there - YAY!)

I spoke about how it causes damage in much greater detail with Dr. Nirav H. Shah in episode 47.

You can listen to that episode here:

(If you don't see the player, visit http://Strokecast.com/JamesHorton)

Here are 3 blood Pressure Monitors available on Amazon. Really, there are dozens or hundreds of options. I have no experience with these three directly, but they're a good place to start your shopping.

HoMedics Automatic Blood Pressure Monitor, Wrist*

Blood Pressure Monitor Upper Arm, Mebak Automatic Digital BP Machine Cuffs for Home Use*

OMRON Silver Blood Pressure Monitor, Upper Arm Cuff*

Johnny Cash -- Hurt

James talked about his experience listening to Johnny Cash's Hurt.

(If you don't see the video, http://Strokecast.com/JamesHorton)

Stroke Recovery Time Frame

There are still doctors and others who will tell a stroke survivor they have 6 months or 12 months of recovery and what they have at that point is all they'll ever get back James doctor told him he had just 12 weeks to recover.

This is NONSENSE.

As long as you live, you can still recover and regain function. Even years down the road survivors continue to recover. At four years post-stroke, I'm still getting finger control back.

Recovery will be fastest in the early days, sure, but it continues to be possible with hard work for years and decades after stroke.

Don't let anyone put an artificial cap on your recovery.

Hack of the Week

James talked about two things that help him with anxiety and depression.

First, get exercise. Even if it's just a little bot. Get some exercise. Get moving as best you can. It helps with health, but more importantly it helps with clearing your head.

Secondly, and in an oddly related way, is to try writing. That could be by hand, by keyboard, by voice, whatever. Writing is a powerful tool for not only enhancing your communication but also for helping you get stuff out of your head and calm your mind.

So take a few minutes to exercise your body and to exercise your pen.

Links

(If you don't see any links, click here.)

Where do we go from here?

• Connect with James through his Facebook page here.
• Buy James' Blue Swords novels on Amazon here.
• Subscribe to the Strokecast newsletter for monthly updates here.
• Don't get best…get better.

Listed in: Health

Stroke Leaves a Woman "Trapped Within"

Jo Ann Glim and her husband were enjoying the semi-retired lifestyle in their new, Florida home. They enjoyed day trips, volunteer activities, and other adventures. Jo Ann was starting a new temp gig at the Tropicana offices, and they were making all sorts of plans for the coming years

.A blood vessel deep in Jo Ann's brain had other plans. It ruptured and damaged her Thalamus on her first day at a new temp job.

Jo Ann would spend two weeks basically unconscious. With lots of work, determination, a a great team, she dove into her recovery.

Twenty four years later, she joins us to talk about her journey, her writing, the risks of being a problem solver, and the things that helped along the way.

Her book, Trapped Within: A True Story of Survival, Recovery, Love, and Hope* is available on Amazon.

About Jo Ann Glim

Jo Ann Glim was born in Chicago, Illinois to a military family and raised in Anacortes, Washington in the far reaches of the Pacific Northwest in a three-generational household. Even though the family was poor, she never knew it.  Poverty taught her life skills: self-sufficiency, creativity, and saving for a rainy day. Her childhood home was filled with love. Tragedy struck when she was fourteen and her mother passed away. Within three weeks, her grandparents were relocated to a nursing home in Illinois and she was taken in by her mother's sister. Everything she had known to be home was gone.

​After she finished school, Glim's career followed three paths: MEDIA - (as a disc jockey/copywriter) WSDM-FM Chicago, KMPX-FM San Francisco, and KIKI-AM Hawaii; and continued in COMMUNICATIONS - a forty-year freelance portfolio with credits including an award-winning column in fourteen northern Illinois newspapers; one-liners for nationally known comedians; monthly articles for Manatee County Florida's Chamber of Commerce Current magazine, to name a few. She took courses in BUSINESS MANAGEMENT - at a local college and after moving to the suburbs, began working for Kelly Services. Sixteen years later, she retired as an on-site Human Resources Manager responsible for the temporary needs of a Fortune 500 company. ​

She now lives in Florida with her husband, Bill, and their Scottish Terrier, Lucy. Her passions are writing, photography, and travel. She loves Chicago pizza, and is happiest travelling with her hubby, playing handbells, or on hiking trails with her camera and dog.

Book

Jo Ann sent me a copy of her book before we talked.  The book, Trapped Within: A True Story of Survival, Recovery, Love, and Hope*, chronicles her stroke and rehab experience. She gets deeper into her relationships with doctors, therapists, and her therapy roommate and shares fears, frustrations, and lessons learned along the way.

Jo Ann writes with a crisp style that's easy to read. Her chapters are short. If you can read only a few pages without a nap, it's a nice choice. Or you can just read chunks of  it at one go.

You can find Trapped Within on Amazon in paper or eBook versions.

Check it out at http://Strokecast.com/TrapedWithin*

"Trapped Within": Book Trailer

Elizabeth Kubler-Ross and the 5 Stages of Grief

Kubler-Ross wrote about grieving and death.  Recovering from stroke is similar, except instead of grieving over the loss of another person, we are grieving for the loss of our prior selves. Getting through that process takes time, but it also helps us adapt to the new life we have after stroke.

The 5 stages of grief are:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance.

If you're struggling with moving on with your life a neuropsychologist or other counselor can help you navigate this path.