2022-01-24

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?


Here is the latest episode of The Strokecast

2022-01-17

Jaz vs. The Red Dragon: A Stroke Story


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?

Jasmine Loh sits and looks at the camera in a professional style headshot. She wears glasses and a green, blue, and yellow head covering.

I am...

- a brain aneurysm stroke survivor and a cancer survivor from Singapore πŸ‡ΈπŸ‡¬πŸ’ͺ

- Founder of 2nd Chance in LIFE Club πŸ₯°

- a mother of 2 dogs and 2 cats 🐢😻

- left my 19 years MNC corporate career (Systems and Automation Engineer, 2015) πŸ₯³

- 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.  πŸ₯°

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.

Stroke symptom graphic highlighting BE FAST (Sudden change in Balance, Eyesight, Facial symmetry, Arm control or speech/language means it is time to call and ambulance),

Jaz's Dreams

The brain sometime copes with trauma through metaphor. It has a lot of Darmok and Jalad at Tanagra moments. The normal world and perceptions have failed the brain. The body's own blood is attacking or starving the brain. And the brain still tries to make sense of it. And there is some beauty in the horror that comes out of it.

In the case of Christine Lee, when her aphasia denied her access to the word "eggs" it gave her "shell bells" as an alternative.

Jaz's brain, drowning in her own blood, gave her the dream of a red dragon to fight. She scoured the town for power-ups and health solutions, like in a video game. She did battle with the dragon. And the dragon was winning. When it was about to secure its victory, it let Jaz a bit so she could keep fighting. Without Jaz to fight, the was no way for the dragon to live.

The brain is always trying to make sense of the data coming into it, or being generated by other parts of the body. The results can be beautiful, funny, horrifying, confusing, and usually a mix of all of those feelings and more.

Clubhouse

Clubhouse is a free, online platform for live audio discussions. While it started out as an invitation only tool, it's now open to anyone. You just need to download the app to your Android or iOS device and sign up.

Within the tool, there are a bunch of different "rooms" you can join. Each one of those rooms will have one or more speakers leading a conversation that may include anywhere from 2 people to hundreds of people. You can choose to just listen or you can volunteer to speak. You are always free to start your own room as well, on a topic of your choosing.

Topics/Rooms include things like:

  • Brain Injury Life
  • Profiting from Bitcoin
  • Public Speaking
  • Police Shooting discussions
  • Congressional Politics
  • Meditation
  • Tech News
  • Motivation
  • Work Life Balance
  • Dating
  • NFTs
  • Fashion
  • …and more.

Really, it goes on.

I first joined Clubhouse last spring when Maddie Niebanck invited me.

Each week, Jaz cohosts a room at 6:00 PM Pacific time on Monday Evenings. You can find Jaz's room here on the app https://www.clubhouse.com/club/2nd-chance-in-life

Links

(If you don't see the table of links below, visit http://Strokecast.com/Jaz)

Where do we go from here?


Here is the latest episode of The Strokecast

2022-01-03

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

Anna and Ryan Teal pose together outside for a selfie. On the left Anna wears a #aphasia tank top. On the right, Ryan wears a green t-shirt

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 cover of the Aphasia Readers Level 1 book

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?


Here is the latest episode of The Strokecast

2021-12-13

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

Jeffrey Morse Headshot against a gray background

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!

Finding Forward book cover featuring Jeffrey Morse paragliding with a bird landing on his forearm

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?


Here is the latest episode of The Strokecast

2021-11-29

Ep 092 -- FES for Stroke Survivors

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.

sStim

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 Headshot

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 headshot

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.

Me and the xCite

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.

Here are some
pictures and a video from my experience.

https://youtu.be/HJo07_JimOA

Stroke Stories

Stroke Stories Podcast logo

On another note, Stroke Stories, a UK podcast focused on, well, stroke survivor stories, featured my story on episode 50. You can listen to it here:

The show mostly
features UK survivors, but more recently has been including folks from other
parts of the worlds. I enjoy listening for the wide range of folks the bring on
the show.

It's also different
from other podcasts in that it features a narrator rather than a host and a
guest. Basically, the person who interviewed me does not appear in the show.
His job was to help me tell my story and get out of the way. In that respect,
it's more like a radio show.

Definitely check it
out and add it to the list of podcasts you regularly listen to.

Hack of the Week

Wendy's hack for us
is to keep moving. Movement is important to recovery. It keeps the muscles and
tendons healthy and flexible. It's important for cardio vascular exercise.

Getting the
appropriate exercise helps with heart health, blood pressure, and can reduce
the risk of another stroke.

Even if we have
physical limitations today, moving as much as possible makes future recovery
more realistic.

While some exercises
may be better than others, you don't have to get caught up in details. The
important thing is to just keep moving.

Links

Restorative Therapies on the web

https://restorative-therapies.com/

Restorative Therapies on Twitter

https://twitter.com/restothera

Restorative Therapies on Instagram

https://www.instagram.com/restothera/

Restorative Therapies on YouTube

https://www.youtube.com/user/restothera

Restorative Therapies on LinkedIn

https://www.linkedin.com/company/restothera/

Restorative Therapies on Facebook

https://www.facebook.com/restothera/

Kennedy Krieger Institute

https://www.kennedykrieger.org/

RT300

https://restorative-therapies.com/ifes-systems/rt300/

Xcite

https://restorative-therapies.com/ifes-systems/xcite/

TENS on Amazon

https://www.amazon.com/s?k=tens&ref=nb_sb_noss_2

Emilee on Strokecast

http://Strokecast.com/Emilee

Lana Malovana on Strokecast

http://Strokecast.com/Raccoon

Dr. Shah and Sentinel Healthcare

http://Strokecast.com/Sentinel

Lauren Sheehan on Strokecast

http://Strokecast.com/Lauren

Bioness

http://www.bioness.com/Home.php

WalkAide

https://acplus.com/walkaide

Jim janicki on LinkedIn

https://www.linkedin.com/in/jim-janicki-26884b/

Wendy Warfield on LinkedIn

https://www.linkedin.com/in/wendy-warfield-1a1a3660/

Stroke Stories Podcast

https://www.stroke.org.uk/life-after-stroke/stroke-stories-podcast

Bill on Stroke Stories

https://play.acast.com/s/strokestories/strokestoriesepisode50-billmonroe

Where do we go from
here?

  • To learn more about the RT300 bike, the Xcite device, or Restorative Therapies, check out their website at  https://restorative-therapies.com/.
  • Ask your PT or OT about their thoughts on IFES.
  • Share this episode with someone in your life by giving them the link http://Strokecast.com/RSI
  • Subscribe to Strokecast and Stroke Stories in your favorite podcast app so you never miss an episode
  • Don't get best…get better.


Here is the latest episode of The Strokecast

2021-11-23

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 wears a dark blue shirt and looks at the camera in a headshot that appears to be taken outdoors in front of trees.

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.

The cover of Westfalia by Blake Hill

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?


Here is the latest episode of The Strokecast

2021-11-04

100% with Stroke Survivor and Porn Star Misha Montana


 

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

A view of Misha Montana from her right side as she looks at the camera. An Eye of Sauron tattoo is visible on her right shoulder. Her left hand is in her long, black hair

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

Where do we go from here?


Here is the latest episode of The Strokecast