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

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 havi

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.

Jasmine Loh was enjoying a pleasant lunch at work when the aneurysms hidden in her brain suddenly burst. Her world went blank briefly while the stroke settled into this thirty-something's head. A few minutes later, she reconnected with reality and went back to work to continue validating the performance of semiconductor fabrication equipment.

That was in 2014.

She left her job in semiconductor manufacturing due to her stroke, wrote a book, taught herself email marketing, and now does digital services for friends and clients

In 2021 I met Jaz  through Clubhouse.  She co-hosts an online support group there from her home in Singapore.

I enjoyed hearing Jaz's perspective on her stroke story, her dreams in the early days, and her experience of nearly "crossing over."

You can experience all that, too, in this conversation with Jasmine Loh.

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

About Jasmine Loh

Want to know about me?

I am...

- a brain aneurysm stroke survivor and a cancer survivor from Singapore 🇸🇬💪

- Founder of 2nd Chance in LIFE Club 🥰

- a mother of 2 dogs and 2 cats 🐶😻

- left my 19 years MNC corporate career (Systems and Automation Engineer, 2015) 🥳

- Co-founder of Always Awake LLP (yep, turned my side hustle to my main biz) ✌️

I give hope and help self-employed, solopreneurs, entrepreneurs and small business owners to position their brick and mortar businesses online, to get qualified leads and enquiries via building websites, landing pages, funnels, managing their social media marketing and ads campaign. 

Surface my clients’ business that is optimized for online presence, so that they can claim their stake effectively in the digital space by:

1. Increasing their exposure online

2. Generate more qualified leads and enquiries

3. That can convert to sales

Clients who have worked with me over the years, grow with me together as I help them transform their business in stages to where they want.

My goal for them, is that they are no longer that burnt out individuals that’s being bogged down by digital transformation strategies that they are not familiar with, as I am here to help them.

They can reclaim their health and time back, do things that they like and spend time with the people that they love.

———————————————

“Life has no limitations, except the ones you make.” ~ Les Brown

“Today is history in the making.” ~ Jasmine Loh

✌️P.S... 

I’m also looking to connect with folks who are blessed with a 2nd Chance in LIFE after a health crisis.  Let’s inspire, help, support and uplift each other in ways we can. 

There’s so much more to life than just biz.  🥰

Stroke in Women vs Men

Stroke can present differently in women and men.

BEFAST is a good starting point for recognizing stroke in all genders.

A stroke will usually manifest as a sudden loss of or change in :

B- Balance

E - Eyesight or vision

F - Facial Symetry

A - Ability to hold both arms up

S - Speech, slurring, or language

T - It's time to call an ambulance

This list is not comprehensive, especially for women and AFAB folks. It will reflect most strokes, but not all. In the case of Jaz's stroke, it's not as much help.

The American Heart Association also identifies these as symptoms of stroke, especially in women:

• General weakness
• Disorientation and confusion or memory problems
• Fatigue
• Nausea or vomiting

Whether it's BEFAST or these additional symptoms, the most important detail remains -- with stroke, time lost is brain lost. The most important thing to do for someone who may be experiencing a stroke is to call an ambulance.

You can read more about the differences in stroke between men and women here: https://www.goredforwomen.org/en/about-heart-disease-in-women/signs-and-symptoms-in-women/symptoms-of-a-stroke

And if you want to learn more about how women are underrepresented in stroke research, you can listen to my interview with Brent Strong here.

Jaz's Dreams

The brain sometime copes with trauma through metaphor. It has a lot of

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 us

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

Olivia and Emilee were my two, awesome inpatient OTs a couple years ago, and we stayed in touch after I left the hospital.

One day, Olivia told
me about the amazing new $40K rehab bike they just got. They were getting great
results with patients. It's too bad my stroke didn't happen a year later.

The new device was the RT300. It combines therapy, eStim, and data with exercise to help patients improve their core, their leg use, their arm use, or all three at once.

So Olivia put me in touch with Restorative therapies.

In this conversation from 2019 I got to learn all about this technology.

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

How does eStim work?

The brain controls
the muscles and makes us move by sending electrical signals through our nerves
with various chemical processes. After stroke the brain may no longer be able
to do that to certain muscles. That's how we get paralysis, hemiparesis, and all
sorts of similar issues.

That also means that
we can bypass the brain and move those muscles by sending an electrical signal
directly to the nerves at the muscle to stimulate them to make them move. This
is great because movement is important to both health and recovery.

And that's what
eStim does.

The most popular
eStim for Stroke survivors is TENS. This is the type I used in the hospital and
later at home. I attach a couple electrodes to my affected arm, and for 30
minutes, my hand will open and close. Or my wrist will go up and down. Or I'll
do something with my shoulder.

Combining eStim with
exercise is great therapy and promotes recovery.

And the units cost about $40 on Amazon.

FES is the type of eStim you'll find in the Bioness products and the WalkAide. These devices use eStim to prevent foot drop and replace an AFO. The user wears it strapped below the knee as they walk, and it stimulates the muscle that lifts your foot as you walk.

I tried them both
and had some good results with the WalkAide. At $5,000, though, it didn't make
enough of a change in my life to justify buying it.

IFES is the
technology Restorative Therapies uses in their RT300 bike and Xcite treatment
device. The use eStim on up to 12 muscles at once in a specific, timed pattern
to accomplish a task. It's complex, but it can help the brain relearn to do
these things in the future.

Restorative
Therapies Team

Jim Janicki is the President and CEO of Restorative Therapies. Jim has an extensive management background in sales, R&D,  and operations in the chemical, medical, diagnostic, pharmaceutical, and biotech industries. He joined Restorative Therapies in 2018.

Wendy Warfield is the Clinical Education Manager. She makes sure that patients, therapists, physicians, and researchers understand how to most effectively use the Restorative Therapies devices. Wendy is well-suited for this role . She began working at an Occupational Therapist in 2003, and bring that survivor focused perspective to the work that she does.

Some weeks back, I
got to try the xCite. I got to work with the reps Stephanie and Michael when
they visited the Seattle areas.

Unlike the bike, the
Xcite is only for clinical use. It features a series of preprogrammed
activities like reaching for a water bottle or brushing your hair. It fires the
nerves in sequence so the muscles do what they need to do for me to complete
the act.

Me and the xCite

Here are some
pictures and a video from my experience.

Main menu on the Xcite highlighting different exercises loaded into the unit.

Detailed menu on the Xcite allowing a therapist to enable or disable stimulation to specific muscles.

Just a few of the electrodes on my arm.

Stroke Stories

On anoth

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

(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 u

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