2021-05-07

Ep 129 -- Take a Deep Dive with Motus Nova CEO David Wu


 

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

The Motus Hand and Motus Foot from Motus Nova ("New Movement") are air-powered, robotic exoskeletons for in home therapy after a brain injury.

Ella Sofia introduced me to the team a couple months ago, and they are now a sponsor of the Strokecast.

I wanted to learn more about the product and the company so this week I talk with Motus Nova CEO David Wu.

Bio

David Woo smiles in front of a blank white wall.

Veteran entrepreneur with over a decade's worth of experience in tech startups focused on healthcare. Recipient of the 2020 Emory Entrepreneur of the Year award in Technology and 2019 Georgia's Most Innovative Tech Startup. 

Does it make sense?

When considering any therapeutic device, you need tp start with 2 questions:

  1. Is it safe?
  2. Does it work?

Usually the first one is the easier one to answer.

In the case of the Motus Hand and Motus Food, the US Food and Drug administration has approved them as class one devices. That means they are safe and effective, so we're off to a great start.

You can go deeper, though, and look at the studies done at multiple hospitals and care centers.

Here are some examples:

https://motusnova.com/how-it-works/#studies

Those studies can be helpful to share with your OT, PT, or physiatrist if you decide to ask your medical team (and it's always a good idea to ask your medical team).

The other element I encourage folks to consider is the cost in time and dollars to get the benefit.

Any treatment you pursue should be in addition to traditional therapies. Or it should take place when you are not already in outpatient therapy.

And that's one advantage of the Motus solutions -- you don't need to replace your existing therapist with these devices. The main problem with outpatient therapy is that we don't get enough of it. Time and again, experts come on the show and explain we need to get thousands of reps in.

Rewiring the brain is a brute force practice. We have to do the exercises and motions again and again and again to get better. You just can't achieve the scale required in a traditional outpatient therapy model. That makes the Motus devices a much needed supplement to regular therapy. That also means spending an hour a day on it while you listen to podcasts or watch TV is worth the time for most folks.

Now we can consider the financial cost. The rental model incentivizes the patient to do the work, get better, and then return the unit. At roughly $99/ week, that will make sense to a lot of folks. Maybe not for others today, but for many it is an affordable safe, and effective solution for stroke recovery.

Regression

We talk about making progress through rehab a lot, but we don't often talk about the opposite -- regression.

David told the story of a veteran who was making good progress in rehab and actually was able to get around with a walker until he went home. Once we go home, we get less therapy. And other things come up so we put off doing home exercises. Before we know it, we've missed a day. And then a week. And then is a month. We never decided to stop. We just...stopped

When that happens, we get in danger of learned non-use. Or at least of progress goin backwards.

Recovery isn't done or finished until the day we die. We have to keep doing the work. And the more work we do, the better our chances of recovery.

Hack of the week

The more our mind spins with thoughts, ideas, anxieties, embarrassing memories from 8th grade, and random TV theme songs ("Thhhhheeeeeee ship set ground on the shore of this…") the harder it can be to focus on recovery. Or even on a good night's sleep or a productive afternoon.

Meditation is a powerful way to get control of our thoughts and brains again. It can help quiet the noise that burns energy and distracts us from what's important. In Carmen De La Paz's bonus hack this week, she explains that meditation isn't about a guru or a chant. It's about a straight forward element of focus. That means you can meditate while working on a thing, Or sweeping a floor. Or breathing.

The key is to simply focus on one thing and let everything else pass from your mind.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-04-29

Ep 128 -- Gratitude, Meditation, and Power Tools with Carmen De La Paz


 

Click here for a machine-generated transcript.

This week, I spoke with Carmen De La Paz.

Carmen is an Emmy-nominated TV personality. She spent years appearing on HGTV and the Oprah Winfrey network. She's a carpenter, an artist, a bilingual host, a singer, an actor, a musician, a dancer and more.

Carmen is also a stroke survivor who's story involves a helicopter ride, waking up to the last rites, multiple hospital infections (including sepsis and staph), and encephalitis.

And today she is back to working with power tools, creating art, supporting the community of Waukesha, WI, and figuring out her next app.

And Carmen is an absolute delight to speak with as she shares her story.

Bio

Carmen De La Paz smiles and looks at the camera while wearing a light blue plaid button down shirt

From Carmen's website:

Carmen De La Paz, Designer, Carpenter, DIY expert and TV personality, inspires people worldwide through television projects and her recently established YouTube channel, featuring videos in both English and Spanish. A “hands on designer” and accomplished craftsperson, Carmen does all of her own work, handling power tools, to create with wood, metal and glass. She is also owner of De La Paz Designs, an interior/exterior design studio specializing in creating designs focusing on decorative finishes and custom made furniture for interior/exterior residential and commercial spaces.

Voted one of the top 200 most knowledgeable people in the construction industry in the United States by Fixer.com, Carmen brings the female perspective on home improvement, power tools, design and “do-it-yourself" to the television screen and the internet in both Spanish and English through a variety of projects. Appearing as Co-Host and Carpenter in two Emmy Nominated seasons of the make-over show, "Home Made Simple" on the Oprah Winfrey Network. Often recognized for her work on HGTV - Carmen’s carpentry and design skills were featured on six seasons of HGTV’s highly rated makeover series Hammer Heads which garnered Imagen Award Nominations for Best Reality Show. In addition to many other shows on HGTV, Carmen appeared as one of HGTV’s celebrity carpenters on a season of highly-rated HGTV’s Design Star and was a judge on Mike Holme's All American Handy Man Competition.

Additionally, Carmen currently can be seen as the host in multiple seasons of the PG&E webisode series, Energy House Calls, which was nominated for an Imagen Award for Best Web Series, Reality or International. Continuing to share her expertise and craftsmanship, Carmen appeared on George to The Rescue, filmed simultaneously in English for air on NBC and in Spanish for air on Telemundo.

Carmen has gained a strong international Spanish language following from her four years on FOX International’s Spanish language channel, FOXLIFE, with several shows airing in 17 countries including the US, Canada, South America, Mexico and the Caribbean. While at FOX Carmen was creator, producer and host of 40 episodes of her own show, Be Handy con Carmen. Additionally, Carmen hosted 40 episodes of the DIY show, Hágalo Fácil, for FOX LIFE,and was featured in 80 Episodes of Talkshow Hola Martin and 3 seasons of the highly rated Spanish language talk show, Tu Vida Más Simple.

Carmen’s other TV credits include: HGTV’s, Showdown I & II – where she was featured, for two seasons, as the only female carpenter to compete in the show; NBC’s Today Show – Weekend Edition; HGTV’s – 250K Challenge; HGTV – 25 Worst Landscaping Mistakes; HGTV – 25 Worst Renovation Mistakes; HGTV – Home for the Holidays; DISCOVERY Español – Mientras No Estates & Ideas Para La Casa; WE Network – Holiday Home Invasion, Children's Show Paloozaville as Co-Host to John Lithgow and host on FOX Television’s children’s show The DJ KAT Show.

Carmen served as brand ambassador and spokesperson respectively for 3M and the ScotchBlue brand for four years. During her time, she produced content and hosted several how-to videos for ScotchBlue, represented 3M at several industry conferences including Hispanicize 2015, and represented ScotchBlue in a variety of media efforts including Satellite Radio and TV Media Tours, magazine and print Contributions, as well as public events all over the country.

Born in San Juan, Puerto Rico and raised in Wisconsin, Carmen is an alumna of Syracuse University and has a BFA in Music Theatre. She also studied Broadcast Journalism though the UCLA Certificate program. Carmen is a musician, plays nine instruments and has an amazing vocal style.

Carmen's Demo Reel

See Carmen in action here:

https://youtu.be/Yd-iXM8dk-Y

Gratitude

A recurring theme from many survivors is gratitude. Many of us, while we don't recommend the stroke experience, feel a sense of gratitude for the life we have now. I'm one of them. Carmen talks about how grateful she is for her life today. Neuro Nerd Joe Borges expressed that sentiment, too. As did Kristen Aguirre and Vince Holland among others.

I get that not everyone will feel that way. Sometimes the particular deficits we are left with make that harder. And some people don't make it.

We may be grateful because we realize things could have been so much worse.

But many times stroke makes us reassess our life. It suddenly interrupts normal life. Everything has to stop, whether we want it to or not. And that interruption isn't just about a week off. It can be months or years.

And that interruption is a time to stop and rethink what we are doing.

That's interruption can be something we are grateful for. It makes us stop and make decisions about how we want to live our lives going forward.

While I might like to see all my deficits go away tomorrow, I wouldn't want to not have had this experience. It's made me who I am today. And it's brought amazing people into my life.

But again, I don't recommended having a stroke. While Carmen and I and others had to be forced into this shift, if you haven't had a stroke, you can still take a break and rethink your priorities to make sure they really are bringing value into your life.

And take some time to put together your own gratitude practice to recognize the things that bring value to your life.

Waukesha, WI

Waukesha, WI is Carmen's home town. With a population of roughly 70,000 people, it's just outside Milwaukee, and a couple hours away from Chicago.

And the town has really embraced Carmen. She's working on civic projects, and the love she has for the community really comes through in our conversation.

Art and Stroke

Carmen talks about the change to her art since her stroke. Her description sounds more disciplined and focused that before.

Before her stroke, she described her art as embodying the idea of catharsis -- a building and building until it bursts through. Since her stroke, it seems less chaotic. More refined, focused, and discipline.

Here's an article about the interview Carmen did just before her stroke.

In addition to the changes brought on by our disabilities, stroke can affect us in other ways. I find my writing to be more focused now. But the example that really jumps out at me is the conversation I had with Seth Shearer a couple years back. You can listen to that conversation at http://Strokecast.com/Seth

Seth is a Seattle artist. After his stroke, his art changed dramatically. The change was so dramatic it felt like a different person painted it. Seth began to paint under his middle name of Ian because of the difference.

The things we want to say and how we want to say them are influenced not just by the outside world, but by how we perceive the outside world. Our senses provide raw data, but our brains create meaning from that data. And when our brains change, the way they create that meaning also changes.

Our ability to then express that meaning is impacted by how our brains can use our bodies, by how we can focus on a thing, and by the volume of mental resources we can bring to bear on bear on the project.

And that can be a beautiful thing.

Aneurysm Basics

An aneurysm is an often misunderstood medical condition. The general public thinks it's when the brain just starts bleeding catastrophically. And that's close, but not quite right.

In reality an aneurysm is a weak spot or bubble in the side of a blood vessel or at a spot where the blood vessels divide. As long as the aneurysm doesn't break, leak, or get too big, you can go your whole life with an aneurysm and never know it. Millions of people walk around with aneurysms in their brains and will never know.

Carmen's aneurysms manifested for 10 years as migraines. That bulge in the wall of a vessel can cause problems and press against stuff it shouldn't. Remember, there's not a lot of extra space inside our skulls. They're pretty well packed.

Unfortunately many folks don't get the scan that can show the aneurysm. You can't treat an aneurysm if you don't know it exists. If you do learn it exists, there are some amazing surgical procedures to treat it. Or if it's minor enough neurologists may suggest leaving it alone

But sometimes they are weak enough that they break. And when they rupture and send blood coursing directly into the brain, the results are catastrophic. Many hemorrhagic strokes are caused by ruptured aneurysms and folks who survive are quite lucky.

Motus Nova

Motus Nova is a sponsor this week.

I just started using the Motus Hand device. It's an air-powered, computer-controlled, robotic exoskeleton for my affected hand. It's a therapy tool, rather than an adaptive tool.

One thing I really like about it is the way it collects data and scores my performance on its video games. It's sometimes hard to see the gains we make in therapy over time because they happen slowly. But the reports and data make it much easier to see improvements over time.

I also learned after my first session that I have much less wrist extension than I thought. So now I know one more thing to specifically target.

If you'd like to see if the Motus Hand or Motus Foot can help with your recovery, visit http://Strokecast.com/MotusNova and use the code Strokecast for 10% off your first month.

Hack of the Week

Clamps are an essential tool in woodworking. They give the carpenter and extra, super stable hand. You know who else can use an extra, super stable hand?

Stroke survivors with limb weakness!

A simple clamp is something you can use to hold a thing in place. Maybe that's a piece of timber. Maybe it's a cutting board. Maybe it's a piece of paper you're trying to sign. The variety of clamps available is mind boggling. The right one depends on what you want to do. You can find a bunch of different options on Amazon here.*

Here's one in particular that seems one-hand friendly. I may need to pick up a few myself.*

And of course, I'm still have a warm feeling for the traditional C-Clamps of my youth. You can find those here.*

Explore some different options. And the next time you try something and think, "This would be a lot easier with two (or three or four) hands," make a mental note to look for a clamping solution.

Links

Where do we go from here?

  • Visit Carmen's store and learn more Carmen's work at CarmenDeLaPaz.Com
  • The free Strokecast newsletter launches this summer. Sign up for the monthly newsletter at http://Strokecast.com/Newsletter
  • Follow or subscribe to the Strokecast in your favorite podcast app so you never miss an episode
  • Don't get best…get better.

*Affiliate links


Here is the latest episode of The Strokecast

2021-04-16

Ep 127 -- One Fine Day Everything Changes


 

Click here for a machine generated transcript

One Fine Day everything changes. Nothing will be the same. Sometimes that's a good thing. Sometimes it's not. And sometimes we won't know for years.

Sameer Bhide was living the American dream. He grew up in India, Came to the US for college, graduated with his Masters Degree, got his green card, and too a great job in IT consulting. By the time he was 47, he was married with kids and living in a great home in the suburbs of Washington, DC with a sports car.

And then a genetic abnormality reared its ugly head inside of his head. He had a hemorrhagic stroke.

Over the next couple years, he would lose his job, go through a divorce, and move out of the amazing house.

But Sameer continued to work on his recovery. He travelled to India to supplement a western stye recovery with eastern techniques.

He chronicles his experiences in the book One Fine Day. And he shares his story in this episode of the Strokecast

Bio

From Sameer's website:

Sameer Bhide headshot against a bluish background

On January 31st, 2017, at the age of 47, Sameer suffered an extremely rare catastrophic hemorrhagic stroke in his cerebellum, underwent two brain surgeries, and spent a month in a medically induced coma. Not just his life-changing debilitating illness, later on, he had to quit working, and on top of that, he also went through a divorce. He is extremely grateful and thankful to the Universe that he survived and he promises the Universe that he is going to make the most of the fact that he is alive. 

Book cover of One Fine Day

Sameer is on a unique journey of life, a journey complete with excellent highs and heart-wrenching lows. He is a true fighter, excellent writer and a motivational speaker and thus, written an inspirational book titled “One Fine Day” a unique story of resilience and hope in facing the new normal. It is a transformative memoir about his illness and experiences dealing with adversity and how he came back from the brink of hopelessness/death with the help of a diverse community of friends, caregivers, colleagues and other people around him in his adopted country (USA) and his country of birth (India) besides his family.

Sameer’s mission starting with his book is to help and guide people worldwide on how one can prepare for and embrace their new normal whatever it is for them with positivity, grace and gratitude.

Writing Process

I find the process survivors go through to write their books fascinating. In part that's because I've started work on mine. But it's also interesting because people choose different ways to work around their disabilities. Writing a book requires energy, a willingness to revisit some of the most painful and frightening moments we've lived through, access to language, an ability to type or handwrite, and wherewithal to bring it to market.

None of those come easy after stroke.

Sameer worked with a ghost writer for his book. This gave him a few advantages.

For one, he could work in bursts. He didn't have to sit down for hours. This way he could work around things like neurofatigue or the discomfort that can come from typing a lot. He would share his story with the ghostwriter who would write the story out. Then Sameer could make revisions. They could go back and forth to tell Sameer's story in Sameer's voice.

Sameer also leveraged his work experience in crafting a product plan. E jokes about it, but it makes a lot of sense.

Even if we can't work in our pre-stroke profession, we can often still find a way to leverage those skills and experiences in post stroke life.

When a lot of people see a stroke survivor, the see a person with disabilities. What they don't see is the IT project manager, the lawyer, the judge, the assembly line worker, the retail manager, the author, the actor, the pilot, the broadcaster, etc. Yet we are those things and more.

And in the projects we pursue after stroke, we can often leverage those skills. We bring a treasure trove of experiences to post-stroke life. Sure, some of them may be harder to access now, but they are still there.

It's up to us to figure out how to use and find new applications for those skills.

Disability in India

On Twitter, elsewhere in social media, and in conversations with disabled people in the US, you'll see discussion about lack of accessibility, and the challenges of that. And we absolutely should talk about it. The Americans with Disabilities Act is 30 years old and its ridiculous so many people still have to fight for the accessibility and accommodation that Federal law "guarantees" to us.

As Sameer points out, the situation is worse in India. You simply won't see the level of accommodation and accessibility that you see in the US. Sameer grew up in India, the came to the US, then became disabled, then went to India, giving him a deep perspective on the issue.

It mirrors the limited observations I shared about my week there a couple years ago.

Accessibility is a growth area around the world with different challenges in different places. And being "better" is not the same as being "good.

Hack Jugaad of the Week

Sameer talked about the importance of  meditation and mindfulness in his recovery.

Between added stress and the experience of over sensitivity to environmental stimulation, our minds can be exhausting spaces. It makes it hard to focus on recovery, and an overly exhausted mind may not be optimized for the neuroplasticity needed for recovery.

There are two key tools the popular Headspace app and video chat meditation centers with his guide in southern India.

There are lots of software solutions and YouTube channels that can help you with your own meditation and mindfulness needs. When I was receiving outpatient care one such session was even covered by my insurance at the time.

Explore your options or ask your care team for their recommendations if you feel meditation or mindfulness can help you.

Motus Nova

I'd also like to take a moment and welcome new sponsor Motus Nova to the Strokecast. You'll be hearing from them in a couple week.

Motus Nova makes devices to help stroke survivors with our at home rehab. For example, the Motus hand is a robotic exoskeleton that help you use your hand to play games and do exercises. It’s similar to the way my PTs and OTs used to manipulate my affected limbs in therapy sessions.

It’s designed to make it easier to get in the thousands of repetitions we need to ensure a strong recovery.

If you'd like to learn more or find out if the Motus Nova devices can help your recovery, visit http://Strokecast.com/MotusNova to complete a free online assessment. And use the Promo code "Strokecast" to save 10% on your firs month.

Special thanks to Strokecast guest Ella Sophia for introducing us.

Links

Where do we go from here?

*Affiliate link. I may receive compensation if you make a purchase through the link.


Here is the latest episode of The Strokecast

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