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)

Click here for a machine generated transcript

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.

Here is the latest episode of The Strokecast

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)

 

Click here for a machine-generated transcript

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 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?

• Check out Jaz's website and eBook at http://JasmineLoh.com
• Share this episode with someone you know by giving them the link http://Strokecast.com/Jaz
• Subscribe to the free, monthly Strokecast email newsletter at http://Strokecast.com/News
• Don't get best…get better.

Here is the latest episode of The Strokecast

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)

 

Click here for a machine-generated transcript

About Anna and Ryan Teal

Aphasia Readers was created by husband-and-wife team, Ryan and Anna Teal. Prior to Ryan’s stroke, he was an intelligence analyst, and Anna has an extensive background in marketing.

Ryan had a massive stroke at the age of thirty-four, which left him with aphasia and apraxia. Throughout his recovery, the repetitive practice of reading out aloud seemed to be a tried-and-true form of speech therapy practice with promising results. However, the only books available to practice on a simple level were children’s books. As an adult, reading these types of books felt a little demeaning. Although Ryan and Anna had many good laughs reading aloud about “a trip to grandma’s house,” they quickly realized a need for simple, short readers with adult-themed content to support those in the aphasia community.

After more than a year in the making and extensive collaboration with the renowned Mary A. Rackham Institute University Center for Language and Literacy and input from top neurological teams, they finally wrote their first book of Aphasia Readers for adults. Their ultimate hope is to provide accessible and affordable supplementary speech practice tools for others in the aphasia community to help pave the way for a successful recovery.

Eagle Syndrome

Eagle Syndrome caused Ryan's stroke. It' a fascinating condition. Sometimes it's caused by tonsillectomy or throat trauma. Sometimes, the cause is less clear.

Basically the Styloid bone below the ear grows way bigger than it should. When it does that. Bad things can happen. It can cause throat and mouth pain. It can directly impact or squeeze nerves in the face or neck and cause pain that way.

Or in Ryan's case, the bones ca press against the carotid arteries (two of the four blood vessels that supply the brain) eventually blocking them off and severing the supply of blood. When blood flow to the brain or part of the brain gets blocked, that causes an ischemic stroke.

You can read more about Eagle Syndrome here: https://www.medicalnewstoday.com/articles/321946

Aphasia Readers

The Aphasia reader series of books is designed to help adults with aphasia learn to speak again. Anna and Ryan worked with the University of Michigan to validate the product.

The Aphasia Reader addresses the problem of needing simple books for adults to practice reading that aren't kids books. There is already a lot of infantilization that happens to adults when the go into the hospital or become disabled. Reading books about playing with toys or visiting a long deceased grandmother can feel insulting and further grind away at the self-esteem of an adult who finds themselves unable to speak, walk, or feed themselves.

The Aphasia Readers are a skill building alternative. Level 1 came out in 2021. You can find it here on Amazon* or from http://aphasiareaders.com

Levels 2 and 3 will be available sometime in 2022.

Hack of the Week

Ryan and Anna shared two hacks.

Ryan uses Otter.AI or the Google recorder app on his phone to follow conversations. They do voice-to-text conversion so you can get live captions of the conversation you are part of in real time.

This is technology that has come a long way in recent years. By both listening and reading a conversation at the same time, Ryan can more easily process what's being said, especially if the topic changes.

It's similar to watching TV with the closed captions on. I do that because it just makes things easier to follow. It means I'm less distracted by other things and I'm less likely to get lost while watching a program. The dialog and the captions reinforce one another.

(Special note: In my professional life I work as a contract trainer for Microsoft teaching journalists how to use Microsoft 365)

This technology is also available in a lot of online tools. Microsoft Teams includes closed captioning at no charge so you can turn it on and follow along with the speakers in real time. A presenter in PowerPoint can also enable captions (and translation) for their slides as the speak.

At the top of this article there is a link to a transcript of the episode. I create that using this technology. I upload the episode to the web in Microsoft Word and a few minutes later I have a transcript. If you'd like to learn more about that process, you can check out these 5, 90-second videos I created for Microsoft: http://aka.ms/TranscribeinWordOnTheWeb

The second hack they shared was the Fridge Functional Phrases. These are seasonal or event based lists of words or phrases someone with aphasia can practice. And Anna and Ryan put them on the refrigerator door. Every trip to the fridge becomes a chance to sneak a little speech therapy in.

You can find a bunch of their lists at this link or use the idea to make your own.

Links

(If you don't see the list of links below click http://Strokecast.com/AphasiaReaders)

Where do we go from here?

• Visit AphasiaReaders.com to learn more about Anna and Ryan's work
• Share this episode by giving people the link http://Strokecast.com/AphasiaReaders
• Subscribe to the Strokecast email newsletter at http://Strokecast.com/news
• Don't get best…get better

Here is the latest episode of The Strokecast