2021-04-08

Ep 126 - Kitchen Tips for Stroke Survivors


 

Click here for a machine-generated transcript.

I'm excited to announce the new Strokecast Newsletter.

This free, monthly  email newsletter will launch this summer. You can sign up at http://Strokecast.com/News

It will include synopses of recent events, stroke community news, updates from previous guests and more. So signup for free at http://Strokecast.com/News

11 Kitchen Tips for Stroke Survivors

The core of this week's episode is Kitchen Trips for Stroke Survivors. I talk about them in a lot more detail in the episode, but here is the list.

Mise en  place

Prepare all your ingredients and tools before you start cooking. You'll be less stressed and rushed. You'll be less likely to make a mistake, and you'll be less likely to forget a key ingredient.

Slow is smooth. Smooth is fast.

Take your time while doing your tasks. Focus on getting them done right, rather than getting them done quickly. If you can keep it smooth, you'll be surprised at how much time you ultimately save by not being sloppy and having to fix mistakes.

Let it fall

Don't try to catch a falling knife. It's a good way to seriously injure yourself. When something starts to fall, you may find yourself panicking as you try to stop it and dropping something else. Instead, just let it fall and deal with the aftermath.

Use big coffee mugs as small mixing bowls

Giant coffee mugs are great little mixing bowls. My affected arm and hand are full of tone, but if I can get my fingers in the handle, the tone will hold the mug in place so I can use my unaffected hand to beat an egg or mix tuna salad.

Dycem

Get a roll of Dycem (http://Strokecast.com/Hack/Dycem (affiliate link)). This plasticy, rubbery, non-adhesive stuff is great for keeping bowls, cutting boards, and containers of yogurt in place so they don't slide around as you use them. Your OT probably had a bunch and you can find it on Amazon. When it stops sticking, just was with soap and water and it's good as new.

Sharpen your knives

Dull knives are dangerous knives. They're difficult to use. And the way we (or at least I) use knives post stroke makes them duller, faster. So get them professionally sharpened.

Hot water maker

Get a stand-alone hot water maker. They're a super simple way to always have hot or boiling water safely available. I drink so much more tea sing The GF and I got one.

Stand off-center while doing dishes

We center ourselves at the sink to make it convenient to use both hands. If only one hand works why do we continue to do that? Center your unaffected arm with the sink to reduce reaching, strain, and splashing.

Checklist

Use a checklist to make sure you don't forget a step. The more complex a meal, the more high-stim the environment, the more helpful the checklist will be.

Let the beepers beep

Just because an alert goes off doesn't mean you have to drop everything and attend to it. Your appliances work for you, not the other way around

Be safe

More important than anything else is that you be safe. Don't take unecesary risks, even if that means you have to abandon meal prep halfway though. Worst case, there';s always delivery and take out.

Links

Where do we go from here


Here is the latest episode of The Strokecast

2021-04-01

Ep 125 -- The Spooniepreneur Life


 

Click here for a machine-generated English transcript

A stroke is a forced opportunity to reevaluate our personal and professional lives. Maybe we don't think we can do our previous jobs as well. Or maybe others make that decision for us. Regardless, is now a good time to go into business yourself?

Maybe.

Of course, being an entrepreneur always has its challenges. Pursuing business ownership with stroke related disabilities or Chronic illness poses some additional challenges. And some opportunities

Nicole Neer is a Spooniepreneur -- a business owner and coach living with multiple chronic illnesses. She helps other spoonies -- like stroke survivors navigate and thrive in the entrepreneurial world. We talk all about it in this episode.

Bio

Nicole Neer stands against a white wall looking at the camera with her hands in her pockets. She wears a blue shirt with puffy sleeves and blue jeans

Nicole Neer is the founder and CEO of Bloom Admin Services, a full-service virtual support agency providing online business management, podcast editing, and virtual assistance for online businesses. Because of her experience of being an entrepreneur living with Fibromyalgia, Bipolar Disorder, Anxiety, Sleep Apnea, and Irritable Bowel Syndrome, Nicole is passionate about helping those living with chronic illnesses to build resilient businesses that cope with whatever life throws their way. She's also the host of the Spooniepreneur podcast, a show that highlights what it's like to be an intentional entrepreneur who makes the most of the time and energy you have.

6 Tips for Disabled Business People

1. Decide what it will be.

What do you want to do with your business? It helps a lot if you are passionate about it, but you also need to consider the market. What role do you want this business to play in your life? Is your focus to get rich or just make a little extra pocket change? Or is it somewhere in between?

I would also add that if you are on disability or Medicaid in the US, or other social support programs around the world, be aware of how working on your business could impact your continued eligibility for those programs.

2. Build business plan with non-revenue goals.

Instead of focusing on bringing in $500 or $5,000 this month, focus instead on the targets that will support the revenue. Maybe that's a certain number of Instagram followers or widgets made or Etsy store visits. Concrete, behavior oriented goals may be easier to visualize and focus on achieving

3. Map out your day to accommodate fatigue and naps.

If you deal with neurofatigue, plan for it. You're making your own hours and customer commitments. Fatigue planning, nap schedules, medical appointments, and home therapy are just as few things that impact our ability, energy level, and availability. You can and ought to build your business around these things

4. Plan how to handle bad days. Sometime we have great, high-energy days.

Sometimes we do not. On a good day, develop a plan for the bad days. Is that reallocating work? Is it getting someone to help you? Is it sub-contracting? Does it mean just delaying stuff? There are lots of ways to prepare for them. The important thing is that you do prepare

5. Be honest in advance.

Sometimes planning is not enough, and things do slip. Be honest about it. If you're not going to make a deadline, let the key parties know. Don't try to hide it. Managing expectations is the key to happy customers.

6. Over communicate.

This is related to number 5. People don't like negative surprises from their vendors. They like it even less when they find out you knew a week before you told them. Over communicating -- and doing so with integrity -- helps to set the appropriate expectations and reduce unpleasant surprises.

What do you mean by "Spoonie?"

Spoonies take their name from the Spoon Theory, first articulated by  Christine Miserandino. You can read her essay here.

Basically, it's a way of explaining energy levels folks living with chronic illness or disabilities have. Christine came up with the analogy while trying to explain to her friend what it was like going through a day with Lupus and how every decision we make affects other decisions later in that day.

You start the day with a certain amount of spoons, and everything from getting out of bed, to cooking breakfast, to getting dressed costs a certain number of spoons. When you're out of spoons, you're done for the day.

I'd encourage you to read Christine's essay.

Many disabled and chronically ill folks have embraced the analogy and call themselves spoonies.

Personally, I find it useful to explain why just because I can do something, it doesn't mean I should. For example, I CAN walk around outside without my cane, but it comes with a 2X spoon penalty. And personally, I'd rather save those spoons for something more important.

Hack of the Week

Post-it or Sticky notes are great, but they can clutter up a space. And your important reminders have a way of falling to the floor when you need them.

Trello is a digital alternative. It's a website where you can manage digital sticky notes.

These cards live in columns on a virtual wall and can have all sorts of different information on them. You can move them around from one column to another, change the order and more. It's a great project management system, tool for organizing procedures, or just a way to stay on top of the various things you need to do.

Plus it's a nice way to reduce the chance that something will slip our minds.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-03-12

Ep 124 - A Lesson in A Lesson in Swimming


Click here for a machine generated transcript.

One thing you learn as a stroke survivor is that things change. Plans change. Your world changes in an instant. In that respect, I think many of us had an advantage when COVID-19 broke the planet. We'd been through it before. Many of us had already been at home for weeks, months, or years.

Michael Schutt's world turned upside down when he experienced a series of three strokes. He was told he would never act again, but wouldn't let that stop him. So he wrote a solo performer show to share his story, connect other members of the stroke community with the theater and with each other. And to get back on stage.

He assembled a team to make this thing a reality. He performed a workshop version of the play to find out what works and what doesn't. Michael and his team were getting ready to launch the show for real.

And then COVID hit Los Angeles.

Over the past year, they pivoted. They got a grant, and now "A Lesson in Swimming" is an audio drama you can listen to hear.

In this week's episode, I talk with Michael about his journey. We also get deeper into the media to better understand the nature of these media.

Bio

From Michael's website:

Michael Schutt wears a blue T-Shirt that says Artist as he stands a a music stand with a microphone and smiles at the camera

Each year, roughly 800,000 Americans experience a stroke. In 2015, actor, director, and longtime Moving Arts’ company member Michael Shutt survived three.

​Michael then spent almost three years writing scores of short stories about his experience before teaming up with director and dramaturg Diana Wyenn to take his powerful and unexpectedly hilarious story to the stage. In 2020, they were scheduled to open the world premiere of A LESSON IN SWIMMING at Bootleg Theater in Los Angeles when the coronavirus pandemic hit. It soon became clear that their plans had to get pushed…or they could adapt.

A Lesson in Swimming Trailer

Here's a taste of the story Michael tells.

https://youtu.be/BjYkpY-Cnx0

University of Washington Medical Centers Support Group

The UW hospital network in the Seattle area is now offering monthly virtual stroke support group meetings. The best thing is that you don't need to be in the Seattle area to attend. It's all online.

Each meeting takes place on the second Tuesday of the month through Zoom. 

If you're interested in attending, you can click this link to learn more.

Hack of the Week

USB rechargeable bicycle lights are a great way to  decorate a cane or other mobility aid -- especially if you are going out after dark. They're fun, easy to use, and can make things safer for you by making it easier for other folks or drivers to spot you.

You can find a bunch of different ones on Amazon. This version is a good place to start (Affiliate link).

Links

Where do we do from here?


Here is the latest episode of The Strokecast

2021-02-28

Ep 123 -- Feldenkrais Movement with Nancy Haller


 

Click here for a machine generated transcript by Microsoft Word on the Web.

Feldenkrais movement is a method of retaining the brain by using small, deliberate manipulations of the joints. Practitioners use it to treat everything from stroke-related disabilities to Post Traumatic Stress Syndrome (PTSS) and more.

It's something I read about in my early days of learning about neuroplasticity, but not something I pursued. I still wanted to learn more, so I invited Nancy Haller from the President of the Feldenkrais Guild to talk about the therapy.

Bio

Nancy Haller is a teacher, speaker, and writer with a private practice in the Seattle area. She continually works toward BrainEase using the Feldenkrais Method®. She has authored works on Foreign Accent Syndrome and the Feldenkrais Interactive Movement Chapter included in the Integrated Pain Management Text book.

Nancy brings her own personal story of recovering from brain injury to teaching others to find pathways to BrainEase in daily life. Whether you are experiencing a brain injury, brain fog, feeling brain tired or you have someone you work with or love that is struggling with brain issues.

This book is available on Amazon in both paperback and kindle forms

Science

Feldenkrais doesn't seem to be part of most mainstream treatment programs, though some may recommend it.

So what does the science say?

Researchers Susan Hiller and Anthea Worley from the University of South Australia completed a meta analysis of the available literature in 2015 and came to this conclusion:

There is further promising evidence that the [Feldenkrais Method] may be effective for a varied population interested in improving functions such as balance. Careful monitoring of individual impact is required given the varied evidence at a group level and the relatively poor quality of studies to date.

Susan Hiller and Anthea Worley

That's definitely encouraging. And it makes sense. The Feldenkrais Method involves sometimes imperceptible movement. In the early days of my recovery, I could feel muscles start to come back online before I could actually make them move. Maybe I was activating just one of the hundreds or thousands of individual fibers that make up a leg muscle.

Recognizing that reinforces to the brain that something good is happening here. This route appears to work so let's put more resources there.

In some respects, the Feldenkrais Method seems aligned with that,

Should you try it? Maybe. As with anything, check with your doctor and medical team first. It seems unlikely to cause any harm and if your doctor concurs, check it out.

There are a lot of free resources out there and you'll find some of those in the links below. So you can try it out without paying anything.

It can take some energy, but you don't have to do it for hours on end. It shouldn't interfere with more traditional therapy.

So it likely has some benefit based on the studies, and lots of folks have significant benefits.

It makes sense.

It's unlikely to cause harm.

It doesn't have to cost a lot of money or time to get started.

If it appeals to you, based on this analysis, I'd say go for it.

Oh, and here's an article in the New York Times that talks about Feldenkrais Method and other movement therapies.

Moshe Feldenkrais

Feldenkrais himself had an impressive life. As a teenager, he emigrated from Belarus to Palestine as WWI was ending. He walked there.

He studied judo and jujitsu. In Paris, he studied electronics and physics. He escaped to England as the Nazis were rolling into Paris. He conducted anti-submarine research in Scotland and taught Judo to British sailors.

He would go on to write 9 books, direct the Isreali Army's Department of Electronics, and eventually come to the US where he taught folks the his now eponymous method.

You can read more about him and his works in Mark Reese's Feldenkrais Bio on the Feldenkrais Guild's website here: https://www.feldenkraisguild.com/Files/download/moshe_bio.pdf

Hack of the Week

Accept that you have a brain injury.

There's a stigma associated with brain damage, but if you've survived a stroke, then, by definition, you have a brain injury. In my brain, there is a chunk of scar tissue that used to be live, functioning brain cells.

Once you acknowledge and accept you have this brain damage, it means you don't have to spend energy denying it. Accepting that can be liberating.

It's easier to remember that there's nothing wrong with an affected arm or leg. The problem is all in your head, literally. And that's what you need to treat.

Acknowledging the reality doesn't mean giving up on getting better. Instead, it gives you a starting place that you can build from.

Links

Where do we go from here

  • Check out Nancy's Book on Amazon (aff link) and visit her website to learn more about the Feldenkrais.
  • Check out Feldenkrais.com to learn more about the method.
  • Subscribe to Strokecast in you favorite podcast app so you never miss an episode
  • Don't get best…get better.


Here is the latest episode of The Strokecast

2021-02-04

Ep 122 -- After a Stroke at 22 Mimi Hayes Chose Comedy


(Transcript pending)

Mimi Hayes is a bucket of sunshine. Mimi and I have been in each other's zone of awareness for sometime and we finally connected to record a conversation.

Mimi is a stand-up comedian, author, former high school teacher, young stroke survivor, and is the only person know who walked around Scotland wearing a giant foam brain with Band-Aid on it.

In this episode we talk about the powerful words from an OT, the importance of writing authentically, the nature of burn out, and why everyone should have a fake attorney on retainer.

Bio

Mimi Hayes where's a black blazer, hat, and white blouse and looks at the camera with an expression that seems to say, "I can't believe this nonsense."

From Mimi's Profile on Amazon:

Mimi Hayes is a comedian and author of "I'll Be OK, It's Just a Hole in My Head." A former high school teacher and brain injury survivor, Hayes wrote her first memoir while recovering from a traumatic head injury at the age of twenty-two.

Her honest take on trauma and love followed her to the stage as a stand-up comedian where she has performed on stages such as Denver Comedy Works, Broadway Comedy Club, Stand Up NY, Dangerfield's, and The Upright Citizen's Brigade. She debuted her one-woman show "I'll Be OK" at the 2019 Edinburgh Fringe Festival. She is writing a TED Talk as well as a TV adaptation of the book.

You can find "Mimi and The Brain," her comedic neuroscience podcast available on all streaming devices. You can cyberstalk her at mimihayes.com, follow her on Twitter and Instagram (@mimihayesbrain), or send her a carrier pigeon.

From Mimi's website:

The cover of Mimi's book, "I'll be OK, It's Just a Hole in My Head."

I was always a funny person. Ask my mother. I came out of the womb with an Oscar-worthy performance.  And an audience.  I guess it was Take-Your-Intern-To-The-Birthing-Room Day or something. Anyway, I have grown up with a permanent smile on my face.

And then I had a brain hemorrhage. And I smiled some more.

I smiled more because smiling makes you laugh. And when you laugh, you forget for a second that your brain is actually bleeding which makes absolutely no sense. Humor has always been and will always be my defense mechanism. Perhaps this is why men can't tell when I think we're on the worst first date of all time. My bad. I'm just too good at convincing people that I'm stoked on life.  Even when I lose my motor functions and need help using my legs.

It's a funny life I live.

I'm all better now, by the way.  Well, mostly.  I still run into door frames.

This is my journey, my story, and my laughter.

I don't claim to know much, but I do know this: If you can survive a brain surgery with your sense of humor intact, it's a job well done.

(Commence slow clap)

Mimi Hayes stands in a parking lot wearing a giant foam brain costume around her waist and torso.

Like Minded

Like many of Strokecast guests, Mimi is one of the instructors in Jane Connaly's Like Minded program. You can find all those interviews at http://Strokecast.com/LikeMinded

Like Minded is a membership program featuring classes by stroke survivors, medical professionals, and adjacent folks to help people heal their brains. You can learn more about the program here: https://healthebrain.org/workshops.

Cavernous Angioma

A Cavernous Angioma caused Mimi's hemorrhagic stroke.

It's a malformation that can form in utero or later. It's an issues with a defective network of blood vessels.

Remember, arteries carry blood away from the heart and lungs to nurture the brain, toes, and everything in between. The arteries branch further and further and get smaller and smaller. Eventually, they become capillaries. This is where nutrients and oxygen can pass from the blood to the organs. And carbon dioxide and waste material can pass from the organs to the blood to be carried away. The capillaries get larger and combine together becoming veins which further consolidate to return blood to the heart and lungs so the entire cycle continues.

In a cavernous angioma, the capillaries in part of the brain mis-form. They clump together. The capillaries start feeding through one another.

Where it really becomes a problem is when this clump grows and starts pressing against other brain tissue.

The brain does not like that.

Or, as in Mimi's case, this clump starts leaking blood into the brain.

The brain really does not like that.

A common treatment is to perform brain surgery and remove the clump of capillaries.

While we know that roughly 80% of strokes may be preventable, strokes like Mimi's are not. They can strike anyone at any age regardless of how healthy you are.

BEFAST Ignored

The troubling part of Mimi's story is how the Emergency Rooms disregarded Mimi's condition. The only way she got an MRI was that her mother threatened to sue. Once the saw the results, then they knew Mimi was having a stroke.

We talk about knowing the signs of stroke through the pneumonic BEFAST. Balance, Eyes, Face, Arms, Speech, and Time to call an ambulance. Any change or issue with one of those indicates someone may be having a stroke, and the appropriate response is to call an ambulance to seek medical treatment immediately.

Mimi was ticking the box on three of them -- Balance, Eyes, and Speech. She did seek medical treatment and none of the doctors, nurses, or triage folks thought stroke. They never sought to treat Mimi with anything other than pills for vertigo.

Her mother had to threaten legal action before they did their job and ordered the diagnostic scan.

The healthcare system should be adversarial; we shouldn't have to fight to get appropriate treatment, but sometimes that's what it takes. And Mimi's mother's anger and fake attorney may be the sole reason Mimi is alive today.

Those are good resources to have in your pocket.

Stroke symptom graphic

Networking

I really like the story Mimi tells about how she got her book published. Sure, in part it's about who you know. It's about those magical "connections" she had. She got her deal through networking.

And you know what? That's not a bad thing.

See, networking isn't about schmoozing with business cards at a cocktail party.

It's about just meeting people just to get to know them. When Mimi met the guy who could help her publish, she didn't set out to meet him. She was just open to the conversation with him and lots of other people.

While we're in COVID-19 world right now and not going out to bars or whatever, we can still connect. We can stay in touch with current colleagues or former colleagues through email or LinkedIn. Or whatever. We can stay in touch or renew our relationships with college or high school friends. We can message our neighbors.

We don't need to connect just with folks who can help us. We can look to help others.  And just be a person.

That's really what networking is.

The other thing about Mimi's story is that it demonstrates my favorite definition of luck -- when preparation meets opportunity.

When she met this contact, she already had been doing the work on her book. She'd finished the draft and had already been rewriting. When the opportunity presented itself she was ready. That's how Mimi got lucky.

Power in an OT's Words

 "You are really brave, and you are really strong."

With those words, Mimi's OT gave her the gift Mimi really needed at that moment in time. She acknowledged Mimi during one of the hardest things in Mimi's life. 

Did it take a lot of time or energy for the OT to do that? No, but it made all the difference to Mimi. Encouragement at the ow point in our lives can change everything.

Mimi Does Stand-up

So is Mimi funny? YES!! And not just in our conversation. Here she is doing standup.

https://www.youtube.com/watch?v=WUfh28ZaGLk&feature=emb_logo&ab_channel=MimiHayes

And here's the trailer for her book:

https://www.youtube.com/watch?v=lnmKHuS6iLc&ab_channel=MimiHayes

Tig Notaro

We mentioned comedian Tig Notaro in our conversation.

Tig was diagnosed with breast cancer after recovering from a massive CDIFF investigation. Almost immediately after her diagnosis, she went on stage and performed about it, off the top of her head. It's an amazing performance.

Tig has gone on to make surviving cancer a significant part of performance.

You can hear part of that performance on this episode of This American Life. It's an amazing performance, and Tig is a genius story teller. It's one of the most profound pieces of audio I've listened to.

You Can Quit

Mimi talks about the conversation she had with her friend. She was talking about how overwhelmed she was with work and all the other projects. When her friend suggests she quit.

Mimi's reaction is basically, "I can do that?!"

Yes you can. When you have too many projects that are no longer contributing to your life, you can quit.

If you're pursuing things because fir some reason you don't feel you're allowed to quit, and it's hurting you're life. It's okay. Though I certainly don't have the authority, it doesn't really matter. I give you permission to quit.

Hack of the Week

When things go wrong, acknowledge it and accept it. Especially after stroke when we deal with disabilities that may have us walking into things or laughing inappropriately, it can help to accept that it happened and lean into it.

That doesn't mean you don't take steps to avoid those thing. Not at all.

But being embarrassed about it and beating yourself up over something isn't going to undo it. There's no CNTRL+Z in life.

So lean into it.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-01-28

Ep 121 - High Intensity Gait Training with Meghan Larson


Click here for a transcript generated by Microsoft Word on the Web.

High Intensity Gait Training is a new research-based approach to Physical Therapy. Rather than focusing on the details of walking, it focuses more on the volume of steps — even if they’re not the cleanest steps.  It’s not just the steps, though. It’s also about getting the heart rate up safely. This therapy drives heart rates up to 65-85% of the max.

And you know what? It works.

Patients who go through this therapy walk faster. They walk further. Their sit-to-stand performance is better.

It turns out the intensity primes the brain for the neuroplastic changes that work with the repetitions we need to do to acquire or re-acquire skills like walking.

You can read one of the studies here.

This week we learn about High Intensity Gait Training from Dr. Meghan Larson, PT, DPT, NCS. Not only is Meghan specially trained in this therapy, she is also the woman who taught me to walk at age 46. She was my inpatient PT back in 2017. And she continues to be an utter delight.

Bio

Dr. Meghan Larson, PT, DPT, NCS stands in front of a wall and looks directly at the camera.

Dr. Meghan Larson, PT, DPT, NCS is a board certified Neurological Clinical Specialist Physical Therapist who completed her doctoral work at Columbia University and undergraduate degree at Gonzaga University. Currently, Meghan is a staff Physical Therapist at Swedish Medical Center Cherry Hill Campus in the Acute Rehabilitation Unit. She has previous experience in Neuro ICU, Neuro Telemetry, Long Term Acute Care and outpatient orthopedics therapy. Currently areas of interest and specialty are Stoke Rehabilitation, Vestibular Rehab, gait training and balance re-training. Meghan lives with her husband, two kids and dog in Seattle, WA. She enjoys cooking, running, hiking, traveling and spending time with her growing family.

Education
  • Doctorate Degree- Columbia University
  • Undergraduate Degree- Gonzaga University
  • Board Certification- Neurological Clinical Specialist
Work Experience
  • Current- Staff Physical Therapist at Swedish Medical Center- Cherry Hill Campus in the Acute Rehabilitation
  • Past- Highline Medical Center- Regional Hospital Lead Therapist and Physiotherapy Associates Staff Physical Therapist

Two Things Successful Patients Do

Meghan works with a lot of patients. Some are more successful than others. What drives that difference? Meghan sees two things that the successful patients do

First, they trust the process and the therapists. The therapists spend years studying this stuff. They push us. And sometimes we develop an intense dislike of them because they are pushing us so hard.

But the thing I, most of them know what they are doing. They’re pushing us because pushing us works.

So trust the therapists and the work they are making us do.

The second thing successful folks do is they are kind to themselves.

That doesn’t mean treating therapy as a vacation or not trying hard. It means trying and working and when failing, not beating themselves up. This stuff is hard. We are going to fail. That’s how we know we are trying.

But thinking of ourselves as failures or getting angry with ourselves or engaging in negative self talk doesn’t help.

We have to forgive ourselves for the things we can’t do — yet.

Would you talk to another survivor the way you talk to yourself? Would you call someone the names that you call yourself? If not, then don’t treat yourself that badly either. Be kind to yourself.

 

Caffeinated Comics

A couple weeks ago, I joined visited the Caffeinated Comics. We talked about the insurrection at the US Capitol and a lot about Star Trek. We also talked about Voice Over Artist Tom Kane who recently survived a stroke and now lives with aphasia.

You can learn more about and listen to the episode here.

 

Hack of the Week

If there is something you want to do after stroke, let your therapist know.

If something gave you joy before your stroke, talk about it and dive into the resources available to help with it. Whether it’s a hobby, skill, or other passion, ask your therapists about it. They can help tune your therapy in that direction.

They also just know stuff. They may be familiar with gear or techniques that can help.

If you’re no longer in therapy, they may still be able to help. So shoot them a quick email. There’s help out there. Sometimes you just need to ask. Give it a shot.

And here’s the thing — they want to hear from you even after you’ve finished therapy with them. Especially when they worked with you in the early days after your stroke. They saw you at the very early stages, and they are thrilled to see the progress you’ve made after a month, 6 months, a year, or more.

 

Links

eghan (Fuchs) Larson, PT, DPT, NCS

Academy of Neurological Physical Therapy

Intensity Matters Campaign

BORG Scale

Shirley Ryan Ability Lab

High Intensity Interval Training in Chronic Stroke (HIT)

Variable Intensive Early Walking Poststroke (VIEWS): A Randomized Controlled Trial

Importance of specificity, amount, and intensity of locomotor training to improve ambulatory function in patients poststroke

Clinical Practice Guideline to Improve Locomotor Function Following Chronic Stroke, Incomplete Spinal Cord Injury, and Brain Injury

Emilee Mason on Strokecast

Other Swedish team members on Strokecast

Bill on Caffeinated Comics

 

Where do we go from here?

  • To learn more about, or connect with Meghan, find her on LinkedIn here.
  • Do you know a PT, physiatrist, or survivor who you think would be interested in High Intensity Gait Training? Share this episode with them by giving them the link http://Strokecast.com/HIT.
  • Let your therapists know how you’re doing.
  • Don’t get best…get better.

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.

 

 

Here is the latest episode of The Strokecast

2021-01-21

Ep 120 -- How COVID-19 Causes Stroke with Dr. Jason Hinman


 

Click here for a machine-generated transcript.

We know that COVID-19 causes stroke in many cases. You can recover from the disease and then still have a stroke caused by the virus. Sometimes the only way you find out you have a COVID-19 infection is that you go to the hospital with a stroke and they tell you. In the US, about 1500 strokes a week are caused by COVID-19.

But why is this happening?

We're starting to get some answer about how COVID-19 causes stroke thanks to the work of Dr. Jason Hinman and his colleagues at the University of California Los Angeles (UCLA). In this episode Jason and I talk about his research and the relationship between Stroke and COVID-19.

Bio

Dr. Jason Hinman poses for a professional headshot in his white coat.

Jason Hinman, M.D., Ph.D. - Dr. Hinman is Assistant Professor of Neurology at the David Geffen School of Medicine and Interim Director of the Stroke Program at the West Los Angeles VA Medical Center. Dr. Hinman received his MD/PhD degrees from Boston University School of Medicine.

He completed adult neurology residency training at Ronald Reagan UCLA Medical Center with fellowship training in vascular neurology and stroke rehabilitation also at UCLA. His NIH-funded research laboratory focuses on the molecular pathways at the interface of stroke and Alzheimer's dementia using basic and translational models of stroke and cerebrovascular disease. 

The Model

The technology Jason, Dr. Naoki Kaneko,  and their colleagues use is fascinating. They've taken scans (MRIs, CT scans, Angiograms, etc.) of patients' brains and used those scans to build a physical, 3-D model of the networks of veins and arteries in the brain. This allows them to see just how blood flows and where it struggles.

It also means neurosurgeons who may be planning to fix a patient's aneurysms with a stent or coil could practice on an actual model before going into the patient's brain.

With Jason's research, they line the fake vessels in their model with human epithelial cells. These cells are the same ones that line our real blood vessels. As a result, they were able to observe the way the virus interacts with the blood vessels. Then they learn how that interaction can lead to clots and other blood vessel damage, which, in turn, causes a stroke.

Here's a link to the study: https://www.ahajournals.org/doi/pdf/10.1161/STROKEAHA.120.032764

And here's a link to the press release about the study: https:/newsroom.ucla.edu/releases/covid-19-increased-stroke-risk

The Solution

If you've survived a COVID-19 infection, how can you reduce your chances of having a stroke? Right now, the best research says to eat right, exercise, hydrate, and get good sleep.

In other words, do the things the medical establishment has been telling us to do for years. There's no magic solution. We just have to do the hard work of doing the right thing. Which, of course, is also how you reduce your chances of having a stroke even if you haven't had COVID.

I know. It sucks. But at least it's cheap.

BEFAST

More people are having stroke due to COVID-19. Younger people are having strokes. Many of these strokes can be treated and result in minimal disability if the person gets to the right hospital quickly enough.

So make sure everyone you know can recognize a stroke. Teach them to BEFAST.

Sudden loss or change in Balance, Eyesight, Facial droop, Arm control, Speech or language means that it is Time to call an ambulance.

Stroke symptom graphic

The Important Takeaway

Don't catch COVID-19.

The impacts are long lasting. Even if you survive (and most people will) it still damages your blood vessels, your heart, your kidneys, your lungs, and more. If you survive, the Grim Reaper gets another bite at that apple through COVID inspired stroke and other conditions.

Mask up when you go outside. The mask isn't to protect you. It's to protect anyone else that you see and their families. The fact is there is no way to know for sure if you are infected right now. You could be. I could be. Since symptoms may not show up for a couple weeks, we can't know. Mask up so you don't kill someone or give them a stroke.

Minimize social contact. When you do have that contact, keep your distance. Avoid crowded indoor spaces. If you see someone without a mask, stay away from them. If they get offended, so what? Let them. Afterall they're the ones trying to infect and kill you.

Take advantage of delivery and curbside pickup. Work from home if you can.

Not everyone has those options. Respect people who do have to go out to work by respecting rules intended to reduce transmission.

Many of us don't have to stay locked up 24-7 for months on end. We can go out on occasion, but we have to be responsible about it.

Hack of the Week

It's winter, my Dysport (Botox alternative) is wearing off, and we've had a stressful start to 2021. All that adds up to my tone and spasticity getting stronger and tighter.

When I want to undo that fist I make by default, I could just forcefully  open my fingers, but that just encourages more resistance.

What's for effective is to bend my wrist down (flexion) in the direction the wrist tone want to go anyway. When you bend your wrist down, that naturally encourages your fingers to open up.

The reason for that is that the finger extensors -- the muscles that open your fingers run from your forearm over the top of your wrist and the back of your hand. Bending your wrist down causes them to pull on your fingers, opening your fist.

Give it a try.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-01-14

Ep 119 -- Stem Cells and Thrombectomy with Dr. Dileep Yavagal


 

Click here for a machine generated transcript.

Mission Thrombectomy 2020+ is an initiative to double the number of mechanical thrombectomies around the world. This initiative, driven by Dr. Dileep Yavagal, aims to help more stroke survivors, communities, and economies in the developed and developing world by reduces the level of disability cause by stroke.

We talk about that initiative this week, but first we get an update on Stem Cells.

Dr. Yavagal was a guest on Strokecast back in episode 42. We talked his work in stem cell research to treat acute stroke patients. The work was promising but still experimental.

It still is.

Dileep gives us an update on the progress and research protocols involving the treatment. The bottom line is there is NO approved stem cell therapy in the US today. Research has not sufficiently demonstrated safety and effectiveness. But they're working on it.

The only stem cell therapy available for stroke is experimental in research studies. If you choose to participate in those studies, great! Research studies provide the treatment for free.

If someone tries to charge you or collect a fee for stem cell therapy, run, hobble, or wheel away as fast as you can. It is not a legitimate therapy at this time.

Bio

Dr. Yavagal headshot

Dr. Dileep R. Yavagal, MD, FAHA, FAAN, FSVIN is the Director of Interventional Neurology and Co-Director of Neuroendovascular Surgery at the University of Miami & Jackson Memorial Hospitals and Clinical Professor of Neurology and Neurosurgery at the University of Miami School of Medicine. He has recently been appointed to lead the Neurological Cell Therapy Platform at the Interdisciplinary Stem Cell Institute at the University.

Dr. Yavagal is an international thought leader in endovascular therapy for ischemic and hemorrhagic stroke as well as a pioneer in the translation of intra-arterial delivery of cell therapy for stroke. He was the national Co-PI of the first US multicenter clinical trial of Intra-arterial delivery of autologous bone marrow stem cells for ischemic stroke: RECOVER Stroke. He was on the on the steering committee of the SWIFT-Prime and MR RESCUE, both landmark randomized clinical trials of endovascular stroke therapy. He co-authored the landmark 2015 AHA Endovascular Stroke Therapy Guidelines as well as the recent groundbreaking DAWN stroke trial in the New England Journal of Medicine. He is the founder and Past-President of the Society for Vascular and Interventional Neurology (SVIN). He has also co-authored the AHA Policy statement on Stroke Systems of Care.

Dr. Yavagal has received several state and federal research grants to study endovascular stem cell therapies for ischemic stroke using small and large animal models of stroke in his research laboratory. He is considered a pioneering researcher the field of intra-arterial delivery of stem cells in stroke therapy.

Dr. Yavagal is Chair of the Society of Vascular and Interventional Neurology’s (SVIN) global campaign called Mission Thrombectomy 2020+ (MT2020+) and is leading a no-holds-barred charge to accelerate access and remove geographic disparities to mechanical thrombectomy (MT), an interventional treatment for a common type of disabling stroke.

MT2020+ is calling on public health policymakers to increase physical, financial and diagnostic access to MT for patients with disabling strokes.

Stem Cell Updates

Dr. Yavagal's research is about the use of stem cell therapy to treat stroke patients in the first few days of their stroke -- the acute phase. The process his team is exploring involves placing the donor stem cell at the point of injury by using a catheter through the groin or wrist. This method is similar to his other key projects around mechanical thrombectomy. Both involving similar equipment -- a catheter the surgeon navigates through the patient's arteries to remove or deliver a payload. And it takes place in an angio suite, which is an operating room with special imaging equipment.

In a study with the patients' own cells, his team has demonstrated safety, and they have seen results indicating effectiveness, too, even though the study wasn't designed for it.

Recent large animal studies have demonstrated that the process is safe. The next step is to do studies to demonstrate the safety of donor stem cells with humans. Then they can explore effectiveness.

At this point (January 2021) there are no FDA approved stem cell therapies for stroke patients. But we're getting there.

Mission Thrombectomy 2020+

Mechanical Thrombectomy is the gold standard for the treatment of large vessel ischemic stroke, especially when combined with tPA.

In mechanical thrombectomy, a surgeon runs a catheter from the femoral artery in the groin or radial artery in the wrist. They navigate to a clot in the brain and drag it out to restore blood flow.

tPA is a clot busting medicine that works to break up clots in the body to restore blood flow.

When both treatments are used, patients experience much better outcomes.

The challenge is they have to be used quickly. Patients have only 90-minutes to 24 hours to get treatment. The actual window varies widely based on the details of the patient's stroke, MRI, general health, and the specifics f the hospital they get to.

Most of the time, the window is 3 hours That window has been growing though.

When I had my stroke in June of 2017, the window was much smaller. I woke up with symptoms so I had my stroke sometime between 1:00 AM and 7:00 AM. That put me outside the window for the interventions at the time. Six months later the window expanded, and it continues to get better.

Would my right MCA at the basal ganglia thrombus been eligible for removal a few months or a year later if my stroke had just held off a little longer? I'm not sure I want to know.

Mission Thrombectomy 2020+ is an initiative led by Dr. Yavagal to double the number of thrombectomies performed around the world in both developed and developing countries.

A large part of the work involves creating national and regional committees to work with local health ministries. The committees educate politicians, government officials, administrators, and health care influencers on the benefits of mechanical thrombectomy for patients and society.

Disability and shortened life is expensive for a community. It's expensive from the loss of the inherent value of human life and quality of life for many survivors. But it's also expensive in sheer economic impact.

Long term treatment costs money. Loss of worker productivity costs money. Loss of productivity from caregivers costs money. The opportunity cost from untreated stroke is enormous.

In many cases. Prompt mechanical thrombectomy can save lives, reverse some stroke damage, and dramatically reduce the number and severity of disabilities a survivor will live with.

When you can make a case for reducing both human and economic costs, you've got a pretty compelling case.

That's the case Mission Thrombectomy 2020+ makes around the world.

The Jet Plane Comparison

Thrombectomy isn't cheap to start up. You need Angio Suites -- specialized emergency room with specialized imaging equipment. It requires super tiny catheters to go through the blood vessels to retrieve the clots. And it requires expert training for neurosurgeons, nurses, and all the other folks who make hospitals work.

How can developing nations or less prosperous communities in developed nations afford all that?

If they see the value, they'll find a way.

Dr. Yavagal compares it to jet travel. Smaller communities or developing nations still often have air service. That's expensive, too. Airport runways aren't just blacktop highways. Airport infrastructure is much more complex and expensive than it looks. Airplanes are expensive. Maintenance on aircraft is expensive. Staff to fly and repair planes require specialized skill.

How can so many places afford it?

Because the see the value air travel brings. It's critical infrastructure to develop and prosper. And it brings tremendous benefits in both human and economic capital.

They find the money because they see the value.

And that's the goal of Mission Thrombectomy 2020+.

Mission Thrombectomy 2020+ has produced a whitepaper talking about the importance of Thrombectomy and why a community needs to make the treatment available. You can read it here: Mechanical Thrombectomy for Acute Stroke-Building Stroke Thrombectomy Systems of Care in Your Region: Why & How?

Hack of the week

Find your ducks.

We talked with Sarah Parsloe in Episode 111 and Bill Torres in Episode 110.

Sarah tells the story of how Bill feeds the ducks every day. Many stroke survivors struggle with being the recipient of care. This is especially true for those of us who were always trying to take care of others before our strokes. When we're not able to do that anymore, it can be tough.

Bill found the ducks that needed help after his stroke. Even as he worked to recover, each day he fed the ducks at a local pond. He still does. Taking care of the ducks is a great way to help out after stroke -- it's a way to feel needed and to put value back into the world. Being able to contribute -- to make a difference -- is something we all need.

So find your metaphorical or literal ducks and go feed them.

Links

Where do we go from here?


Here is the latest episode of The Strokecast