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

2021-10-23

Texan, Stroke Survivor, Writer, Hiker, and One-handed Guitar Player shares his Story


 

The name "Avrel" means either "Elven King" or "Wild Boar" depending on who you ask. Fortunately, while Avrel Seale is not boring, this multi-book author and stroke survivor is the guest on Strokecast this week.

Our discussion of course covers Avrel's story, but we also get into a discussion about the nature of Generation X and how all this discussion of generations came to be. Avrel also has some great insights into the writing process.

His latest book is "With One Hand Tied Behind my Brain"*, so after you listen to our chat, pick up a copy from your favorite book store.

(For the full content, audio, and video in this story, visit http://Strokecast.com/Avrel)

About Avrel

Avrel Seale Lokk straight at the camera, supporting his chin with his left hand. He is seated in front of a lavendar backdrop

From https://avrelseale.wordpress.com/bio/

Avrel Seale has authored 10 books, including memoir, humor, philosophy, history, religion, and unsolved mystery. He lives in Austin, Texas, with his wife, Kirstin, and three sons.

In 2018 at age 50, Seale had a major hemorrhagic stroke that left him partially disabled. His story of survival and adaptation, With One Hand Tied Behind My Brain: A Memoir of Life After Stroke*, was published by TCU Press in 2020. His one-handed guitar playing was featured on NPR’s All Things Considered.

In 2017, his memoir Monster Hike: A 100-Mile Inquiry Into the Sasquatch Mystery* was published by Anomalist Books to positive reviews. Wendy Garrett of KCMO Talk Radio in Kansas City called it “fascinating and compelling.” Nick Redfern called it “highly entertaining … a witty, amusing, and adventurous saga.” Andrew W. Griffin wrote, “There is something Walden-ish about Monster Hike that I did not anticipate when I first picked it up … as much about ourselves and our place in nature as it is about ‘monsters.’ ” And Loren Coleman named it one of the 10 Best Cryptozoology Books of 2017.

Dude: A Generation X Memoir* was included in the Austin American-Statesman’s “Best Books of 2008.” Staggering: Life and Death on the Texas Frontier at Staggers Point (2014) chronicles the arrival of Seale’s ancestors in Texas in the 1820s and 1830s and the tumultuous events and brutal conditions of the pioneering years.

Seale often writes and speaks about the Baha’i Faith. In addition to numerous articles about the religion, his books The Hull, the Sail, and the Rudder (2006)*True Freedom and the Wisdom of Virtue (2007)*, and The Tree – A Spiritual Proposition (2008)* deal extensively with Baha’i concepts.

Though predominantly a nonfiction author, he has written two novellas — the afterlife comedy The Grand Merengue* and The Secret of Suranesh*, which he originally wrote and co-produced as an independent feature film.

His latest book, Nuts: Down the Nueces River With One Stroke, is awaiting publication.

Seale grew up in McAllen, Texas, the son of writer Jan Seale, the 2012 Texas Poet Laureate, and composer and conductor Carl Seale. Earning a bachelor’s of science in radio-TV-film from The University of Texas at Austin in 1989, he returned to the Rio Grande Valley, where he started his writing career as a reporter and a columnist for the McAllen daily newspaper, The Monitor.

In 1992, he returned to Austin and served 16 years as editor of the UT alumni magazine, The Alcalde. From 2011-2015 he served as speechwriter for the president of The University of Texas. Since 2015, he has been a writer and editor in the university’s news, marketing, and development offices.

Subject Matter Expertise:

  • Stroke
  • Baha’i Theology
  • 19th century East-Central Texas History
  • Crypto-hominology (sasquatch/bigfoot)
  • Persuasive Writing
  • The University of Texas at Austin

Homunculus

The core principle of neuroplasticity is the cells that fire together, wire together. The more you do a thing, the more connections will form in your brain to do that thing again. More connections mean more real estate gets taken up in the brain for that task.

A professional basketball player will have a lot more neural connections dedicated to free throws than I will. I might have two. And one of those is dedicated to spelling it.

The metaphor of the homunculus is helpful in understanding how this impacts brain injuries.

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

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

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

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

Writing Plan

Avrel writes books, writes speeches,  and writes lots of other stuff, too. He also teaches writing.

Avrel's recommendation for anyone wanting to write a book is to make sure you have something to say. A typical non-fiction book is going to be somewhere between 60,000 and 120,000 words. To give you an idea of what that means, a typical episode of this show is 10,000-14,000 words.

To find out if you have something to say, Avrel suggests writing a long essay about your experience -- about 8,000 words. If you can't get 8,000 words from your experience, maybe you don't know what you want to say, yet. That could change in the future, or you may find another platform for your story.

And once you do get to 8,000 words, you have a thing that you can shop around to magazines or to flesh out further and turn into a book. That long form document becomes the foundation that you can build the rest of your narrative on.

To learn more about writing a memoir, also check out my conversation with Christine H. Lee at http://Strokecast.com/writeyourstory

Guitar Playing

Back in episode 22, I spoke with Craig Martin from OnlineBuske.net. Craig was a British professional guitar player working at clubs and restaurants in Spain when he had his stroke. It took one of his arms and he had to learn to use it again to get back to his beloved guitar playing.  And then it happened again.

Today, he plays guitar and sings. He posts some amazing videos on OnlineBusker.Net and uses them to raise money for stroke organizations around the world. You can hear that conversation at http://Strokecast.com/OnlineBusker

The reason I mention that is Avrel is also a guitarist -- a one-handed guitarist. You can hear some of his playing at the end of the episode or check out this video:

https://youtu.be/R8KvuFozFQE

You can see more of Avrel's guitar playing on his YouTube channel. If you play guitar, I'm sure you'll be fascinated by his tutorials, too.

Caffeinated Comics

The logo for the Caffeinated Comics podcast. It features a page for comic book layout, a coffee ring stain, and a drawing of a man from behind as he puts on a cape.

William Shatner released a new album and went to space. So that was my cue to join Jon Clarke on the Caffeinated Comics podcast to talk about it.

Jon and I are long-time Star Trek fans and I've been fascinated by Shatner for years. In the beginning it was because of the combination of absurd projects he'd done combined with his reported arrogance and poor treatment of other Star Trek cast members. As we've all matured and I've read his memoirs and listed to his music and watched his talk show, I became fascinated in a different way.

His latest album is called simply "Bill" and explores themes of depression, loneliness, guilt, connection, death, love, and horses. Some folks experiencing their own mental health challenges may find it triggering, but it's a fascinating piece of art. You can get the CD here* or find it in the streaming service of your choice.

https://youtu.be/gpbtOksAuoE

To listen to the conversation Jon and I have, click here, search for Caffeinated Comics in your favorite podcast app, or just click play below.

https://rmpn-media.s3.us-east-2.amazonaws.com/cc/cc_249_101821.mp3

Hack of the Week

Avrel's hack is all about playing the guitar. He's able to make the notes and chords by using hammer on and pull off techniques on the fret board. This works well on an electric guitar.

You can see more of Avrel's guitar playing on his YouTube channel. He doesn't just play most of the songs. He also takes the time to demonstrate how he does it and teaches his hammer on technique.

On some tracks, Avrel also uses a digital looing device to expand his playing further.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-10-07

Stroke in Antarctica in a Novel


 

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

I don't see many novels that deal with stroke and aphasia. Memoirs, sure, but not novels. That's one of the things that makes Jon McGregor's novel, Lean Fall Stand,* interesting. That, pls the fact that Jon himself is not a stroke survivor. He's someone who has taken an interest in our community an endeavored to learn more.

Oatmeal, a light-brown Jellycat brand teddy bear, sits on a couch and read's Jon McGregor's Lean Fall Stand

Jon's novel follows the story of Robert, a research scientist in Antarctica. Robert gets caught in a storm , suffers a stroke, and acquires aphasia. The novel chronicles Robert and his wife's adventures as they enter and then adjust to living in stroke world.

Jon and I talk about the book, Jon's research, his adventure in Antarctica, writing beyond an author's personal experience, and more.

About Jon McGregor

Author Jon McGregor wears a dark patterned shirt, suspenders, and a beret while standing against a dark green wall looking at the camera

Jon McGregor is the winner of the International IMPAC Dublin Literary Award, the Costa Book Award, the Betty Trask Prize, the Somerset Maugham Award, and the American Academy of Arts and Letters E. M. Forster Award, and has been long-listed three times for the Man Booker Prize, most recently for his novel, Reservoir 13. His latest novel, Lean Fall Stand*, is out from Catapult in September 2021. He is professor of creative writing at the University of Nottingham, England, where he edits The Letters Page, a literary journal in letters.

Jon's Resources

Jon talks a lot about the research he did to understand the experience of stroke and aphasia. He met with therapists. He talked with survivors. He attended support groups.

The Stroke Stories podcast is another resource he used to learn about Aphasia and stroke from a survivor's perspective. It's a show that tells stories more as news type pieces rather than in a traditional podcast interview. You can find it in popular podcast apps.

A couple years ago, I was lucky enough to be a guest on the show. You can listen to that episode here: Stroke Stories Episode 50 - Bill Monroe

The Aphasia Access Conversations podcast is another one Jon found helpful. It's a show focusing on the education, experience, and thoughts of speech therapists who work with folks who have aphasia.

For more stroke related podcasts, visit http://Strokecast.com/StrokeRelatedPodcasts.

Jon also learned from Sara Scott's YouTube channel. Sarah survived a stroke at age 18, about 12 years ago. Since then she has posted videos recognizing various strokeaversaries. You can watch her progress in dealing with aphasia over the decade and see her recovery over the years.

Sarah Scott 10 years living with Aphasia

(If you don't see the embedded video, visit http://Strokecast.com/Antarctica)

Edwyn Collins is a Scottish musician who made it onto the worldwide charts in the 80s with his post-punk band Orange Juice. He survived a stroke with aphasia in 2005. Jon drew inspiration from the documentary of Edwyn's story, "The Possibilities are Endless"

The Possibilities Are Endless (Official Trailer)

(If you don't see the embedded video, visit http://Strokecast.com/Antarctica)

Jon also learned from the Stroke Odyssey production from Rosetta life:

SO Trailer 7

(If you don't see the embedded video, visit http://Strokecast.com/Antarctica)

Artists' Residencies

Artist residencies are a fascinating thing. In the one Jon talked about, he applied to go to Antarctica. He would be provided transportation, lodging, and access to the work of research scientists. In return, he would, eventually, make a thing.

In Seattle a couple years ago, the city offered space in a draw bridge that an artist could have for months to make a thing inspired by the space.

The variety of residencies available to artists is kind of amazing. It's an interesting intersection of public relations, marketing, public art, patronage, and other elements.

If you feel a desire to create but want space, education, or inspiration, it may be worth exploring the idea of residencies.

Writing About Marginalized Communities

We discussed the idea of writing about marginalized communities in this interview, specifically about disabled people or people with disabilities.
 

A lot of the same concerns apply when writing about folks of a different race, gender identity, sexual orientation, religion, cultural background, etc.

When you write a character who is of a different group, especially if the character is part of a historically marginalized group, the writer has a special obligation to get it right -- to make sure they can write about the character and the character's experiences with honesty, accuracy, and individuality, without reducing them to a series of stereo types.

I've read parts of Lean Fall Stand* (Jon's team sent me a copy) and so far, his portrayal seems good. Of course, my experience with aphasia is all second hand. I'd encourage you to check it out and share your thoughts.

Become a better writer

Jon is a long time novelist and a professor of creative writing. You might expect him to have advanced models and techniques for becoming a better writer and telling better stories. But what is Jon's advice?

Read more.

Write more.

It's that simple. Sure you need to read deliberately and think about the choices a writer makes in the pieces you read.

To get better at walking, we need to walk more. To get better at moving our fingers we have to move our fingers more. To get better at speaking, we have to speak more.

To get better at writing, we have to write more.

More reading and more writing. Hmm. I can get behind that.

Hack of the Week

Jon talked with as bunch of folks with aphasia and cited two things they did that were helpful.

First, the used their phones and tablets to help communicate. It wasn't just about typing out messages or using special apps, though. It was about using other tools for communication. For example, telling the story of travelling to a city by using the maps app. It was about thinking of different ways to share the story without strictly telling the story.

Second, a lot of the folks Jon spoke with carried a card that explained they have aphasia and explains what aphasia is. There are still millions of people out in the world who have never heard of aphasia and folks with aphasia still have to deal with them. A simple card can make a big difference.

Links

(If you don't see the list of links below, try visiting http://Strokecast.com/Antarctica)

Where do we go from here?


Here is the latest episode of The Strokecast

2021-09-27

London Cop and Stroke Survivor Becomes a Fantasy Author


 

James Horton was a young police officer in London. He was 27 and felt invincible. His partner (personal one, not police one) was about to give birth to their first child. Naturally, that's the time a life of high blood pressure caught up with him and he experienced a hemorrhagic stroke.

In this week's conversation, we James and I talk about that experience, how policing in London compares to policing in the US, how his stroke impacted his life and career, and how he came to write his fantasy novels in the Blue Swords series.*

You can listen to our conversation in the player above or in your favorite podcast app. If you don't see the player, visit the full article at http://Strokecast.com/JamesHorton.

About James

Headshot of stroke survivor, fantasy author, and London police officer James Horton. James smiles facing the camera in front of a white backdrop

From James' Amazon Author page:

James Horton left his hometown in rural Lincolnshire to join the police service in London at the age of nineteen. Serving as a police officer in several units, James has had his eyes opened to the highs and lows that comes with serving as a constable.

Suffering a stroke at the age of twenty-seven, James turned to historic action novels to help settle his mind and aid his recovery.

After his recovery, James decided to start writing his own novel, combining a career in the police and his passion of medieval stories. His first book, BLUE SWORDS, the first of The Crimes and Crests Saga has been based on true events, merged with a historic twist.

Author profits for Blue Swords, books 1&2* will be donated to the Stroke Association UK.

James would love to hear from his readers and can be contacted via his author page.

High Blood Pressure

High Blood Pressure is a major cause of stroke. It caused James' stroke. It caused my stroke. It caused the stroke of many of my guests. It's easy to check because home blood pressure monitors are pretty cheap.

Many people don't check, though. And many never know they even have high blood pressure until it's too late.

And that's because it doesn't hurt.

Generally, high blood pressure causes no pain or outward symptoms while it's slowly destroying our blood vessels, as surely as the surging Colorado River destroyed the rocks in the Arizona dessert to carve the Grand Canyon. That's a beautiful thing to look at in the ground. It's not so beautiful when it's happening in our bodies.

I only found out about mine when I started getting massive nose bleeds at random. By that point, the damage that would lead to my stroke had already been done.

The American Heart Association recommends we work to keep our blood pressure below 120/80 (I'm currently right there - YAY!)

I spoke about how it causes damage in much greater detail with Dr. Nirav H. Shah in episode 47.

You can listen to that episode here:

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

Here are 3 blood Pressure Monitors available on Amazon. Really, there are dozens or hundreds of options. I have no experience with these three directly, but they're a good place to start your shopping.

HoMedics Automatic Blood Pressure Monitor, Wrist*

Blood Pressure Monitor Upper Arm, Mebak Automatic Digital BP Machine Cuffs for Home Use*

OMRON Silver Blood Pressure Monitor, Upper Arm Cuff*

Chart from heart.org showing levels of hypertension

Johnny Cash -- Hurt

James talked about his experience listening to Johnny Cash's Hurt.

(If you don't see the video, http://Strokecast.com/JamesHorton)

https://youtu.be/8AHCfZTRGiI

Stroke Recovery Time Frame

There are still doctors and others who will tell a stroke survivor they have 6 months or 12 months of recovery and what they have at that point is all they'll ever get back James doctor told him he had just 12 weeks to recover.

This is NONSENSE.

As long as you live, you can still recover and regain function. Even years down the road survivors continue to recover. At four years post-stroke, I'm still getting finger control back.

Recovery will be fastest in the early days, sure, but it continues to be possible with hard work for years and decades after stroke.

Don't let anyone put an artificial cap on your recovery.

Hack of the Week

James talked about two things that help him with anxiety and depression.

First, get exercise. Even if it's just a little bot. Get some exercise. Get moving as best you can. It helps with health, but more importantly it helps with clearing your head.

Secondly, and in an oddly related way, is to try writing. That could be by hand, by keyboard, by voice, whatever. Writing is a powerful tool for not only enhancing your communication but also for helping you get stuff out of your head and calm your mind.

So take a few minutes to exercise your body and to exercise your pen.

Links

(If you don't see any links, click here.)

Where do we go from here?


Here is the latest episode of The Strokecast