2021-08-02

Ep 137 - Get the Arm Back with Vagus Nerve Stimulation




A lot of the attention in stroke research is paid to the acute phase. How can we treat a stroke in the ER? What can we do so it doesn't get worse? How can we prevent strokes from happening? What can we do in inpatient rehab to help folks get better?

Those are all important things,  and the stunning innovations happening around us are amazing, newsworthy, and truly impacting people's lives in a meaningful way.

But there's not as much attention given to chronic stroke. Sure, there's some. There are people working really hard to help stroke survivors recover even years after stroke. But not as much makes it into the news.

That's one reason I was interested in Dr. Jesse Dawson's work at the University of Glasgow. The recently published a study in the Lancet about using Vagus Nerve Stimulation to drive recovery in patients years after stroke. And their procedure looks promising.

Bio

Dr. Jesse Dawson headshot. He directly faces the camera against a white background

Dr. Jesse Dawson is a Professor of Stroke Medicine and Consultant Physician in the Queen Elizabeth University Hospital. His research portfolio includes prevention and rehabilitation clinical trials in stroke survivors. His main interest is in improving the long-term outcome after stroke. Dr. Dawson holds a BHF/Stroke Association programme grant, HTA NIHR funding and NIH funding and runs a large outcomes adjudication system for multi-national stroke trials. He is the NHS Research Scotland lead for stroke research and sits on the editorial board of Stroke.

Dr. Dawson is currently researching the role of xanthine oxidase inhibition as a novel preventative treatment after stroke. This is the focus of a UK wide clinical trial, funded by a programme grant from the BHF/Stroke Association.

He is also studying novel treatments for upper limb weakness after stroke, including vagus nerve stimulation and robotic therapy. These studies included a large NIHR funded study, funding from Chest Heart Stroke Scotland and a collaboration with industry. 

Dr. Dawson is the Medical Outcomes Manager for the endpoint committee of the large NIH funded CLEAR III trial, the NIH funded MISTIE III study, the European Union FP-7 funded EuroHYP study and the international SITSOPEN collaboration. This involves review of all trial endpoints and co-ordination of the endpoint adjudication process for these large phase III studies.

He supervises several PhD and MD students, including students with competitive government and charitable funded fellowships. He co-directs a large MSc programme in Clinical Pharmacology and is Director of the Vertical Theme for Clinical Pharmacology and Therapeutics for the MBChB programme. He is a regular MRCP PACES examiner and external higher degree examiner for several UK univeristies.

The Research

This is a fascinating study because even though they are stimulating the Vagus nerve, they are not actually treating it. Instead they are using it as a messenger to the brain to say, "Wake up! It's time to learn something." Essentially, it's trying to get the brains attention so traditional Occupational and Physical Therapy can work. And it seems to be working. It will be interesting to see if in future studies they can get similar results with Speech Therapy.

The other important take away here is that this work with chronic stroke survivors -- folks who had strokes years ago -- even in the control group. Granted the experimental group that got the Vagus Nerve Stimulation got better results.

The point is, though, that intense physical and occupational therapy gets results even years after as stroke, demonstrating once again that the 6 or 12 month caps on recovery are complete and utter nonsense.

Hack of the Week

Pick a small thing to focus on. Perhaps it’s a small task. Or part of a small task. Or maybe it's a new goal you haven't done before but it seems within reach. Do that. Focus on that. Achieve that. The look for more small challenges. Lots of wins on small challenges adds up to big success in the long run.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

Understanding Post Stroke Depression


 

Surviving a stroke is not the end of a medical issue. It's the start of a new journey, with new challenges. Major depression is often one of those challenges. It interferes with recovery, rehab, adjusting to a new life, and maintaining relationships.

In short, it's big problem. And it's pretty common.

According to new research by Dr. Laura Stein from the Icahn School of medicine, depression after stroke is twice as likely to occur as depression after heart attack. There's something unique about stroke that leads to depression.

On top of that, if a person lived with Generalized Anxiety Disorder before stroke, they are 1.7 x as likely to experience Major Depression after stroke.

In this conversation, Dr. Laura Stein talk about her research and what survivors, caregivers, and medical practitioners need to know.

Bio

Dr. Laura Stein smiles at the camera while wearing a white doctor's coat against a gray back drop

Laura K. Stein, MD, MPH is an Assistant Professor of Neurology at the Icahn School of Medicine at Mount Sinai and attending physician at the Mount Sinai and Mount Sinai Queens Stroke Centers. She is board certified in Neurology and Vascular Neurology by the American Board of Psychiatry and Neurology. Dr. Stein received a BA from Amherst College and her MD and MPH from the Icahn School of Medicine at Mount Sinai. She completed her internship, neurology residency, and vascular neurology fellowship at Mount Sinai. 

Dr. Stein's interests are in stroke clinical care, stroke outcomes research, and medical education. She is the Neurology Residency Associate Program Director and precepts first year medical students in the Art and Science of Medicine preclinical skills course. Dr. Stein received the Department of Neurology Resident Class of 2020 Award of Appreciation for Dedication & Commitment Towards Excellence in Mentorship and 2020 Institute for Medical Education Excellence in Teaching Award. 

The Research

Dr. Stein's research was part of the American Stroke Association’s virtual International Stroke Conference. You can read the paper here.

You can read the article where I first encountered her work here.

The approach of looking at depression after heart attack vs looking at depression after stroke is an interesting one. It's a nice way of controlling for other potential causes.

The research looked at Medicare recipients, Medicare is a US government health insurance program, generally for folks 65 and older. It lets researchers draw from a rich collection of data. There are two significant tradeoffs, of course.

First, it's restricted to the US so there's no international representation in the study. Obviously, depending on the research question in particular, that may or may not be an issue.

Second, it's restricted to folks 65 and older. Can we say that the results of this study apply to younger stroke survivors?

Maybe?

Probably?

We don't know. And this study was not designed to answer that question. I'd say it does get us closer, though, and it opens up an opportunity to do further research that asks different but related questions.

That's what good studies do. The answer specific question with solid evidence and clear analysis. And the result can introduce new questions for researchers to explore in different studies.

In the meantime, it's likely safe to say, that regardless of age, stroke survivors are probably more likely to experience depression, and the community needs to be vigilant for the signs of depression and seek treatment accordingly.

Symptoms of Major Depression

Diagnosing depression involves identifying symptoms from a couple lists. To "earn" a depression diagnosis, a patient needs 5 symptoms from list 1 and all 4 from list 2. They are:

List 1 (Pick 5 or more)

  • Depressed Mood (most days)
  • Loss of Interest or pleasure
  • Weight loss or gain
  • Insomnia or hypersomnia (nearly every day)
  • Psychomotor agitation or limitation
  • Fatigue (nearly every day)
  • Feelings worthless or experiencing inappropriate guilt
  • Decreased concentration (nearly everyday)
  • Thoughts of death or suicide

List 2 (All 4)

  • Symptoms cause significant distress or social/professional impairment
  • Symptoms not attributable to a substance or medical condition
  • Symptoms not explained by another disorder
  • No history of manic episodes

You can read more details about the symptoms here.

You can probably see one of the issues. Many of those symptoms may be directly attributed to the disabilities and brain damage of the stroke without it being Major Depression. That's why it's important to work with a medical professional to tease them apart.

Symptoms of Generalized Anxiety Disorder

Generalized Anxiety Disorder is about more than feeling nervous. It's more complicated and severe.

The National Institute of Mental Health describes it this way:

People with generalized anxiety disorder (GAD) display excessive anxiety or worry, most days for at least 6 months, about a number of things such as personal health, work, social interactions, and everyday routine life circumstances. The fear and anxiety can cause significant problems in areas of their life, such as social interactions, school, and work.

Generalized anxiety disorder symptoms include:

  • Feeling restless, wound-up, or on-edge
  • Being easily fatigued
  • Having difficulty concentrating; mind going blank
  • Being irritable
  • Having muscle tension
  • Difficulty controlling feelings of worry
  • Having sleep problems, such as difficulty falling or staying asleep, restlessness, or unsatisfying sleep

You can read more about the condition here.

Neuropsychology

While most psychologists and psychiatrists can help stroke survivors and others with depression and other conditions, there is a specialty that may be even more helpful -- neuropsychology.

A while back, I talked with Dr. Karen Sullivan from I Care For Your Brain. She wrote the "Interactive Stroke Recovery Guide."*  You can listen to that conversation or learn more at http://Strokecast.com/Karen

A neuropsychologist has additional, specialized training to work specifically with folks who have brain injuries. They dive deep into the details of the injury to provide the best customized treatment plan, leveraging expertise that generalists don't have.

They work with folks with a wide array of functionality and challenges.

FLAME vs FOCUS

As long as we are talking about depression, we should also talk about antidepressants a little -- specifically SSRIs and how the relate to stroke.

In 2011, the FLAME study was published in the Lancet. In short, it demonstrated that stroke survivors who took Prozac (Fluoxetine) experienced stronger motor recovery. Many hospitals saw those results and began putting more stroke survivors on Prozac because, well, why not? If the patient tolerates it well, and it can help folks work better, it's probably a good idea. And if it reduces or prevent post stroke depression (or other depression) that's a solid win.

I talked with Dr. Nirav Shah about this back in November of 2018. You can listen to that episode here.

That's how I started on an SSRI in my stay. They originally tried Prozac with me, but I had a not great reaction to it. It apparently gave me an anxiety attack. So we quickly stopped that (thank you, Xanax, I think). We talked about it some more and tried again with a different SSRI -- Lexapro (Escitalopram) because I had tolerated it well during a tough time some years earlier.

Cheap, no negative side effects, and potentially helpful is win.

A month after my interview with Nirav, and a year and a half after my stroke, the FOCUS study came out, attempting to duplicate the results of the FLAME study on a bigger scale.

It failed.

The scientific consensus now is that SSRIs do not help with motor recovery. They do still help with depression.

The hospital no longer recommends SSRIs as part of the motor recovery protocol.

So what does that mean for folks like me?

I asked my doctor last year if that meant I should stop taking them. We talked about it and she explained I could certainly stop if I wanted to.

"But, dude -- it's 2020."

And she had a valid point.

(Okay, maybe I paraphrased that)

And that's why Escitalopram still has a place in my pill organizer.

As always, everyone's stroke and circumstances will vary, so talk to your doctor before making any changes to your medication.

Hack of the Week

Get a dog.

A dog can be helpful after stroke, whether it's a service dog or simply a companion animal.

When you have a dog, you have a responsibility to take care of it. You have to feed it, walk it, groom it, and give it cuddles.

Sometimes that may be reason enough to get out of bed and get moving for the day.

Links

Where do we go from here?

  • If you think there's a chance you might be experiencing depression, talk to your medical team
  • Share this episode with someone you know with the link http://Strokecast.com/depression
  • 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

2021-07-15

Ep 137 - Get the Arm Back with Vagus Nerve Stimulation


A lot of the attention in stroke research is paid to the acute phase. How can we treat a stroke in the ER? What can we do so it doesn’t get worse? How can we prevent strokes from happening? What can we do in inpatient rehab to help folks get better?

Those are all important things,  and the stunning innovations happening around us are amazing, newsworthy, and truly impacting people’s lives in a meaningful way.

But there’s not as much attention given to chronic stroke. Sure, there’s some. There are people working really hard to help stroke survivors recover even years after stroke. But not as much makes it into the news.

That’s one reason I was interested in Dr. Jesse Dawson’s work at the University of Glasgow. The recently published a study in the Lancet about using Vagus Nerve Stimulation to drive recovery in patients years after stroke. And their procedure looks promising.

Bio

Dr. Jesse Dawson headshot. He directly faces the camera against a white background

Dr. Jesse Dawson is a Professor of Stroke Medicine and Consultant Physician in the Queen Elizabeth University Hospital. His research portfolio includes prevention and rehabilitation clinical trials in stroke survivors. His main interest is in improving the long-term outcome after stroke. Dr. Dawson holds a BHF/Stroke Association programme grant, HTA NIHR funding and NIH funding and runs a large outcomes adjudication system for multi-national stroke trials. He is the NHS Research Scotland lead for stroke research and sits on the editorial board of Stroke.

Dr. Dawson is currently researching the role of xanthine oxidase inhibition as a novel preventative treatment after stroke. This is the focus of a UK wide clinical trial, funded by a programme grant from the BHF/Stroke Association.

He is also studying novel treatments for upper limb weakness after stroke, including vagus nerve stimulation and robotic therapy. These studies included a large NIHR funded study, funding from Chest Heart Stroke Scotland and a collaboration with industry. 

Dr. Dawson is the Medical Outcomes Manager for the endpoint committee of the large NIH funded CLEAR III trial, the NIH funded MISTIE III study, the European Union FP-7 funded EuroHYP study and the international SITSOPEN collaboration. This involves review of all trial endpoints and co-ordination of the endpoint adjudication process for these large phase III studies.

He supervises several PhD and MD students, including students with competitive government and charitable funded fellowships. He co-directs a large MSc programme in Clinical Pharmacology and is Director of the Vertical Theme for Clinical Pharmacology and Therapeutics for the MBChB programme. He is a regular MRCP PACES examiner and external higher degree examiner for several UK univeristies.

The Research

This is a fascinating study because even though they are stimulating the Vagus nerve, they are not actually treating it. Instead they are using it as a messenger to the brain to say, “Wake up! It’s time to learn something.” Essentially, it’s trying to get the brains attention so traditional Occupational and Physical Therapy can work. And it seems to be working. It will be interesting to see if in future studies they can get similar results with Speech Therapy.

The other important take away here is that this work with chronic stroke survivors — folks who had strokes years ago — even in the control group. Granted the experimental group that got the Vagus Nerve Stimulation got better results.

The point is, though, that intense physical and occupational therapy gets results even years after as stroke, demonstrating once again that the 6 or 12 month caps on recovery are complete and utter nonsense.

Hack of the Week

Pick a small thing to focus on. Perhaps it’s a small task. Or part of a small task. Or maybe it’s a new goal you haven’t done before but it seems within reach. Do that. Focus on that. Achieve that. The look for more small challenges. Lots of wins on small challenges adds up to big success in the long run.

Links

Dr. Jesse Dawson at the University of Glasgow

Dr. Dawson on Google Scholar

Dr. Dawson on Neuro News

Vagus nerve stimulation paired with rehabilitation for upper limb motor function after ischaemic stroke

Where do we go from here?

Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

*Affiliate links


Here is the latest episode of The Strokecast

2021-07-06

Ep 136 -- AFO Shoes Don't have to be Ugly


 

AFOs (Ankle-Foot Orthotics) offer many stroke survivors freedom by letting us safely walk. They lift our affected feet as we take our steps so our toes don't drag on the ground and trip us. They give us the mobility that foot drop threatens to take.

But they're not usually very attractive. And finding shoes that work with them is a challenge because they need to be bigger and wider so we can squeeze a weak foot and brace into the show.

A common question I hear from survivors is, "Where can I get shoes that aren't so ugly?"

Well, I don't always have great answers to that, but Lainie Ishbia does. Laine runs the Trend-Able blog and is one half of the emBRACE IT podcast. She's an expert on finding and making accessible fashion, and she joins us this week to share her story.

Bio

Lainie Ishbia looks at the camera over her left shoulder. She has long black hair and wears a dark leather jacket.

Lainie Ishbia is a blogger and podcaster helping people with invisible and visible disabilities look good and feel good. Her website at Trend-Able.com offers tips and strategies for literally and metaphorically  balancing fashion and physical needs. She develops tips for find accessible clothing options. If you can't find it, she offers tips on modifying clothes to make them work.

Lainie lives with Charcot-Marie-Tooth disease. It's a hereditary, degenerative nerve condition that today impacts her hands and feet. She began wearing AFOs on each foot at age 30 and mourned the loss of sleek heels at the time.

Since then, she's turned around her perspective, leveraged skills acquired through a career in social work and now helps folks with disabilities live their best lives with confidence, self esteem, and passion.

You can find more details of Lainie's story here.

Disability and Lifestyle

Living with disability (visible or not) is a lifestyle. It shapes what we wear, the careers we pursue if able, and the social activities we pursue. And we learn so much along the way.

I often say I now know way more about neurology and neuroplasticity than any marketing guy should ever know.

And now I know the foot bed in a shoe may be removal. And I know there is a thing in a shoe called a foot bed.

Lainie's fashion blog goes well beyond just the particulars of clothing and includes tips and strategies on how to navigate the world, like 5 Cocktail Survival Tips for Unsteady Girls or A Girlfriend's Guide to Dating with an Invisible Disability.

Disability Pride Month

July is Disability Pride Month.

I'm a little fuzzy on the origins and scope of the celebration, but my understanding is it started in 2015 in New York City to recognize the importance of the Americans with Disabilities Act.

How ought we celebrate it in 2021?

It will depend largely on your personal comfort level. Don't let anyone tell you you're doing it wrong.

The first thing is to recognize, accept, and believe with all your heart (original, mechanical, acquired from someone else, etc.) that there is no shame in being disabled.

Say it out loud if you can. There is no shame in disability.

We are people with lives to live. Sure, those lives may be different from the lives of the temporarily abled, but they are no less valuable.

Second, you can celebrate disability pride by simply being visible. By being a part of the world, participating in it and taking up space in it just like any temporarily-abled person. Don't let people pretend we don't exist. Don't hide from people just because our presence makes them uncomfortable.

Third, when someone talks about diversity and inclusion, make sure they are talking about disability in that, too. A diverse organization with no disabled people is not a diverse organization.

Fourth, share your story with folks. You don't have to share it with the world in a podcast, blog or YouTube channel if you don't want to. But you can share it with people in your community and family.  The woman who hosted the graduation party Lainie talked about in our interview (probably) wasn't trying to keep disabled people from having a good time at the party. It's likely the challenges Lainie faced never even occurred to her. The more we tell our stories, the more people will think about accessibility.

That's just a few ideas to consider. Ultimately, you can celebrate in the manner that feels most comfortable to you. If that means you walk, roll, or hobble down the street in a parade or protest, great. If it means all you can do is remind yourself there is no shame in disability, that's great, too.

Disabled is not a bad word. There is no shame in it.

Have a fantastic Disability Pride Month!

Hack of the Week.

Lainie suggests picking up (no pun intended) mini-lint-rollers, like these.*

These have sticky sheets used for getting lint or pet hair off your clothes. If you struggle with manual dexterity, though, they can also be great for picking up change at a store counter. They can also be a nice solution when that pill box spills on the floor and Plaxix and Lisinopril go everywhere!

"But, Bill, why wouldn't I just pick things up with my unaffected hand?"

There are a few reasons.

First, a toned or spastic hand can probably still hold a lint roller, and if you have some shoulder control, you can move it. One of the most important tools in recovery is to use your affected limb as much as possible in practical way. Just because it's no longer fully connected to your brain is no reason not to make it work.

Second, especially when I need to get something on the floor, I often need to use my unaffected arm to balance or stabilize myself. If I get in an awkward position and my unaffected hand is busy, it's much more difficult to not fall.

Everything in life can be therapy!

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-06-19

Ep 135 - Your Pet Brain


 

"Your Pet Brain" is a big adorable, plush brain with giant eyes for those of us who could use a spare one. And my girlfriend wanted one. We could both use some extra neurons. As her birthday approached I decided to order one.

Brain shipped in his box (yes, I'm already anthropomorphizing and gendering him). Cathy went downstairs to take care of something and the saw the distinctive box. She felt a wave of mild envy, and thought, "Aww, someone else got a brain."

 Then she took a closer look at the box and saw my name on it. She scooped it up, brought it up stairs and giddily shuffled through our apartment to show me. She was thrilled! I briefly toyed with the idea of making her wait another day until her birthday, but that seemed unfair since the box made it clear what it was.  And I think brain appreciated it too, because the box wasn't super comfortable.

A gray plush brain with big eyes sits on the box he sipped in. The box has an illustration of him.

This week's conversation is wide ranging. While it all starts with how a delightful, big, plush brain can help and empower folks with physical brain damage or psychological it conditions It goes deeper than that. We talk about the importance of play, emotional education, the nature of the brain, the mind and soul, and outsourced manufacturing strategies. Ultimately, it's about how to human.

Anyway, our pet brain is now named Brian and I'm delighted by that combination of wordplay and mundanaity. He's sitting on the couch next to my desk as I type this thinking brainy thoughts and snacking on smart food.

Bio

Aydika James, a woman with long, black hair looks at the camera.

Artist, adventurer, neuro-hobbyist and Humanity’s #1 fan, Engagement Art Producer Aydika James creates things that make the world a better place. (She also makes a killer cocktail.) With global projects ranging from The Kodiak Queen to YourPetBrain.com, to wacky ride-able “art cars”, to private legacy sculptures that tell the story of someone’s life, Aydika is fascinated by how art, play and “edu-tainment” can be used to unite crowds around a shared experience that stimulates widespread change.

A firm believer that any vision can be achieved when we keep asking the question, “How do you paint with people?”... Her wish is to see a world where each person is supported in seeing, being and celebrating their own unique gifts, so we may astound ourselves with how profoundly beautiful we can make this planet, and our experience on it together.

Aydika James snuggles a large plush brain

Miles the Traveling Penguin

Years ago, I had a job that involved travelling 80-12 nights a year across the US. I did really enjoy it. My most frequent travelling companions was Miles, the traveling penguin. He maintained a blog of his travel photos for many years. He was beginning to switch to Instagram just before COVID-19 closed everything.

You can see his old adventures here.

A small, stuffed penguin in a red scarf sits next to a delicate flower petal

Fluffy Photo Shoot

I mentioned the JoCo Cruise while talking with Aydika. This is the fluffy friends group photo from March 2020.

It's all in my Head

One of the themes I come back to time and again is the idea that there is nothing wrong with my arm, and there is nothing wrong with my leg, It's literally all in my head.

And it is. Because that's where my injury happened. That's where the damage is  -- right near the middle cerebral artery on the right side.

When most folks say, "It's all in your head!" they're saying it derisively. They're saying there's nothing wrong and that you're just thinking wrong. They're saying it's not real.

“Tell me one last thing,” said Harry. “Is this real? Or has this been happening inside my head?”

Dumbledore beamed at him, and his voice sounded loud and strong in Harry’s ears even though the bright mist was descending again, obscuring his figure.

“Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?”

Harry Potter and the Deathly Hallows

The things that happen in our head are our reality. They're the only reality we have. The real world is just light waves/particles, sound waves disturbing the air, and pressure on our skin that sends signals to our brain.

Our brain is where that raw data gets turned into our reality. It's where those raw impulses become our experience of the world. It's where we assign meaning to the waves, particles, and impulses.

As stroke survivors, we know this better than most folks.

Mental health, physical health, and spiritual health have fuzzy lines between them, at best. In reality, they are much closer to being the same thing than many folks realize.

How we move in the world is all dependent on how our brains process all that incoming data and compares it to the meaning it assigned to previous rounds of incoming data.

It is a simultaneously scary and empowering thought.

Hack of the Week

Find something funny everyday.

That doesn't mean you have to tell jokes or be funny. Look around you in your home, in your work, in your social media, in your hospital room, wherever you are, Just try to find one thing that can make you smile, chuckle, or laugh every day,

Because when you can laugh, you can learn. Our world can seem absurd at times because it is. Acknowledge that. If you can find one funny thing a day, that can help tremendously.

Links

Where do we go from here?

A gray plush brain with big eyes sits on a couch and appears to eat a bag of chipsBrian the brain relaxes with a snack


Here is the latest episode of The Strokecast

2021-06-12

Ep 134 - Sex Disparities in Stroke Research


 

We know that fast treatment is critical to surviving a stroke and reducing long-term disability.

We know that there are a lot of studies that look at treatments that work and don't work.

We know that the results of those studies will inform ER procedures and major spending projects at hospitals around the world.

We know that men and women are biologically identical and that treatment for one sex will be just as effective on the other sex, right?

RIGHT?!

Okay. Maybe we don't know that because it's not true. So how do sex differences impact the efficacy or safety of stroke treatments? Well, we don't really know that, either.

Because it turns out women are underrepresented in acute stroke research studies by 6 - 20 percentage point.

Brent Strong and Julia Pudar published a meta-analysis of more than 100 stroke research studies this spring. And they published in in JAMA Neurology, which is really impressive, especially since they are still students.

Bent and I talk about this research and why it matters in this week's episode.

Bio

Brent Strong sits near an office window with the blinds down and open wearing a purple shirt and dark jacket

Brent Strong is a recent graduate of Michigan State University where he earned a Bachelor of Science in physiology. As an undergraduate, he collaborated with Dr. Mathew Reeves to study issues in stroke medicine such as biases in clinical trials, sex disparities in treatment, and post-stroke depression. Brent will be attending graduate school in statistics at the University of Glasgow in the fall, where he hopes to continue his research on stroke.

Hack of the Week

The pump bottles that Kristen and Ruth recommended for shampoo and other bath products are great, but they're not the only solution.

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If you're using a shower chair in the shower, you can place a nonfunctioning limb on your lap and then apply your shampoo to that arm. Then put down the bottle, and scoop up the bath substances with your un affected arm.

If you're further along in your recovery and standing up, hopefully you have some arm use back. Now you can do the same thing, but instead of putting your arm on your lap (since you don't have a lap while standing), bend your arm to get your forearm slightly horizontal. Or let the tone and spasticity do it for you. Then pour the shampoo on your forearm, put down the bottle, and scoop it to elsewhere on your body.

It’s a great way to get clean and get some bonus exercise in.

Like Minded

I'm thrilled to announce a new sponsor this week -- the Like Minded program by Jane Connely.

Like Minded is a membership program that offers online classes, workshops and support groups for stroke survivors. There's an impressive list of presenters in the community, including Physical Therapists, Occupational Therapists, Speech Language Pathologists, Fitness Experts and Survivors. Many of the instructors have been guests in the Strokecast. You can find those interviews here.

Membership in Like Minded includes a subscription to NeuroFitVR. This program uses Virtual Reality to help stroke survivors experiencing cognitive challenges.

Membership costs just $45 a month and you can save 20% off on your first month when you use the promo code Strokecast. You can learn more and sign up if you so choose here: http://Strokecast.com/LikeMinded

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-06-05

Ep 133 - 4th Strokeaversary


 

It's been 4 years since my stroke. It feels like 4 months. It's a good time to reflect on the experience.

The most important piece is that I'm still recovering. Within the past 6 months I've gotten more independent finger control back. That may not seem like much, but the key point is that recovery can continue for years.  Anyone who says recovery stops at 6 or 12 months is spewing nonsense.

Celebration

I choose to recognize this date. Maybe next year I should arrange a full party. It's not a celebration of having a stroke, though. It's a celebration of surviving a stroke. It's a celebration of that new birthday. That day could have gone so much worse than it did. I'm grateful to still be here, alive and kicking (if off balance). Life is short. I may have only another 200 years to live, and I've got a lot of stuff to do in that time.

My partner has a harder time with it. She describes that day as the worst in her life. Her experience was very different and traumatizing in a different way. See it's one thing to face your own mortality. It's another to face your partner's mortality. She had a lot more to stress about and worry about on that day than I did. All I needed to do was lay there, not  dies, and visualize tine spaceships in my veins shooting laser beams at the clot.

So I temper my enthusiasm because it's not fair to make her relive that while I come out positive about my new direction.

Still, it is important to commemorate it. But everyone will have a different reaction to their own or a loved one's Strokeaversary.

It was still a good day to reveal my tattoo to the world. You can see pictures and read all about that at http://Strokecast.com/tattoo.

Going Forward

I've got a bunch of plans I'm working on for the next year

  • I want to write a book (making some progress there)
  • I'm launching the Strokecast newsletter in July
  • I plan to start PT again this summer
  • I want start doing more talks and presentations to share lessons from stroke and the power of yet

…and there's probably a dozen more things on my list, too.

But I'll get there because I'm still here.

Hack of the Week

Use larger plates or bowls to carry things from the microwave.

A lot of food containers, TV dinners, chicken pot pies, and craptacular pizza that comes from the microwave comes in flimsy containers. They're meant to be carried with two hands or the collapse under their own weight.

To solve the problem, I just stick that whole container on a plate to carry it somewhere. I can then safely manage it with one hand.

With soup or cereal, I'll often put that bowl into a larger bowl to also make it easier to handle with less sloshing.

It means there are a couple more dishes to do, but that easier than getting microwave chicken masala out of the carpet

Where do we go from here?


Here is the latest episode of The Strokecast

2021-05-27

Ep 132 - AHORA with Dr. Remle Crowe


 

Click here for a machine generated transcript.

BEFAST is the pneumonic device English speakers can use to recognize most strokes. Balance, Eyes, Face, Arms, Speech, Time to call an ambulance.

But what if you speak Spanish instead of English? BE FAST doesn't directly translate well. So how can you recognize a stroke?

PhD Research Scientist and EMS expert Dr. Remle Crowe and two of her colleagues worked on this problem over the past year. They came up with the Spanish pneumonic AHORA. Ahora translates to Now which captures the same urgency.

In this episode we talk about the evolution of the pneumonic, the ethnic disparities in stroke in the US, the EMS system in Mexico, and how we can use data to improve patient outcomes. Oh, and tacos.

Tacos are very important.

Bio

Dr. Remle Crowe stands in front of a blurred office background wearing a white blouse and blue blazer

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

AHORA Means Now

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

A graphic of the AHORA pneumonic device to help spanish speakers recognize a stroke.

Let's look at a translation.

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

Stroke symptom graphic

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

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

Ethnic Differences in Stroke

Among the data we talked about was ethnic differences in stroke.

For one thing, Hispanic folks who have a stroke are more likely to have a hemorrhagic stroke than non-Hispanic Caucasians. This is a big deal, because, while hemorrhagic strokes aren't as common in general as ischemic strokes, they are more likely to be fatal, and they may result in more severe deficits and disabilities.

Additionally, Hispanic folks are more likely to have strokes at a younger age than non-Hispanic Caucasian folks.

African Americans are also seeing higher stroke rates than Caucasians.

As we talk through the data though, the key thing is that these differences are not biologically based. They're societally based. That means it's a problem that can be solved. It's just not easy.

Additionally, it also turns out that when COVID-19 lock downs began happening EMS transport rates also declined more among non-white patients than it did for white folks.

Jauja Cocina Mexicana on YouTube

Remle talked about her favorite YouTube channel for Mexican food. You can  check that out here:

https://youtu.be/uxb7qSNFkg8

Hack of the Week

I have probably 10 or more hoodies in my wardrobe that I rotate through. By hoodie, I mean a zip-up sweatshirt with 2 pockets and, well, a hood.

I didn't wear them nearly as often in the pre-stroke days, but now I find them super helpful. For a stroke survivor, hoodies offer these advantages.

Playing/practicing with using the zipper is good exercise for an affected hand.

The extra pockets are great even just around the home since I can't really access the pants pockets on my affected side.

When my affected arm is tired or I just need to take some weight off my shoulder I can stick it in my pocket.

When I want to take a quick nap, I can just pull the hood up over my head. It will block some light and tell (some) people to leave me alone.

I suppose someone struggling with overstimulation would also benefit from cutting off some of the outside world be deploying a hood.

I find them to be simple, practical solutions to make life a little easier.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-05-21

Ep 131 - Zebras, Treatments, and Aging


 

Click here for a machine-generated transcript

After I published last week's episode, I realized I had more to say. Thus, we have this week's episode.

Zebras

"When you hear hoof beats, think horses, not zebras."

This is a phrase I've seen used to describe making a diagnosis of a medical condition. Consider the most common condition first; it's probably not the exotic one.

And that's a great approach that provide excellent medical care -- most of the time.

In my conversation with Rachel from BraEasy last week, it almost led to her daughter's death. Her daughter began having seizures at 8-years old. The medical team diagnosed it as an anxiety condition, and referred her to counsellors. They thought horses.

Rachel recognized that wasn't right and kept digging. Finally, she insisted on a physical exam and brain imaging revealed a potentially fatal tumor.

She saw the zebra.

The point is, we need to listen to our medical professionals because generally they are right. But not always. We still have to advocate for ourselves, even though a brain injury makes that harder. We have to educate ourselves, ask questions, learn more, and then ask more questions to make sure we get the best out come for our health that we can.

You can hear Rachel tell her story here.

Treatments and the Internet

Model, Influencer, and Disability Advocate Alex Dacy has been dealing with a bunch of backlash online lately.

Alex is Wheelchair_Rapunzel on Instagram. She's a wheelchair user who lives with Spinal Muscular Atrophy, a degenerative condition that impacts the motor neurons. That means her limbs don't work well, she's struggled with swallowing, breathing, and other things. She's does a nice job of telling her story so I'd encourage you to check out her Instagram to learn more.

She recently started a new treatment with a medication called Risdiplam, or, as Alex calls it, "Twerk Juice." She's been getting some great results and has been sharing her journey online.

And people have been giving her crap for it. And not just because she's a woman on the internet.

People purporting to be part of the SMA community are claiming she's empowering ableds to criticize disabled people, that she's giving people false hope, etc. Again, you can check out her story directly.

It's got me thinking more about what it means to recover from stroke. A lot of times we can see improvements in our conditions with enough work, the right attitude, and time. Stroke is an interesting neurological injury because unlike many others, it doesn't have to get worse over time. Stroke is not degenerative.

So what does that mean to our identities as members of the disabled community?

Aging

In April, I technically turned 50. Well, that's what the calendar says. I've decided to continue to be 35, though.

But there is still value in acknowledging what the calendar says.

At 50, that means 80 is as close as 20. And 20 feels like it was just about 5 years ago. Each year feels faster, and I imagine the next 30 years will feel even faster than the past 30 years have. That's kind of mind-boggling.

It also feels like life up to this point has been about growing up and preparing to start an adult life. I guess I should think about actually starting thatat some point.

After all, according to the calendar, I've live probable a little less than a quarter of my life now.

Hack of the Week

A rolling laundry cart* is a surprisingly useful tool.

i was a little skeptical when The GF ordered one for our apartment, but I've learned to trust her judgement on this things (seriously, how did I live so many years without a hot water maker?).

Early on after stroke, I still used a cane and AFO indoors. My arm was in a sling. Moving the laundry bucket from the bedroom to the washing machine meant kicking it down the hall and trying not to fall in the process. It turns out that's just silly.

So we got a rolling cart like the ones you use in a laundromat. It's got a nice poll that makes it easy to grab, and it's got wheels that make it easy to drag around. Super simple and highly recommended, especially if you don't need stairs to access the laundry.

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Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-05-14

Ep 130 -- Bra Easy and the One-Handed Bra


 

To read a machine-generated transcript, click here.

Let's talk about bras! Specifically, dealing with bras one-handed!

Don't worry. In this episode I don't opine on exactly what you put where to get the thing on.

Instead, I talk with Rachel Whittaker, the Australian entrepreneur who turned a terrible situation into BraEasy -- The company in position to help bra wearers around the world.

She tells us about her then 9-year old daughter stroke and how that led her to a bra the wearer could put on and take off easily with one hand

Bio

Rachel Whittaker faces the camera in front of a pink background with a repeating pattern of Bras.

I am passionate about being a voice for people with a disability. After my daughter had a stroke during brain surgery to remove a brain tumor, I became very aware of the struggle that women have every day trying to put on a bra. So I invented an easier bra that can be put on with one hand. 

We called it BraEasy.  I am the inventor and CEO of BraEasy Pty Ltd based in Melbourne Australia.

How to Use It

Here Jamie demonstrates how she puts on and removes the Bra Easy bra.

https://youtu.be/KGuRFJIaHkk

Models

Bra Easy uses several models on their website, and most are not professional models. Because reflecting the customer base does not require professional models. Bra wearers of course come in all shapes, sizes, ages, colors, and limb configurations. So should the folks modeling the product.

If you're interested in joining the models featured on the site and Bra Easy's social media, reach out to sales@BraEasy.com

Links

Where do We Go From Here?


Here is the latest episode of The Strokecast