Ep 132 - AHORA with Dr. Remle Crowe

 

Click here for a machine generated transcript.

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

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

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

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

Tacos are very important.

Bio

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

AHORA Means Now

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

Let's look at a translation.

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

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

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

Ethnic Differences in Stroke

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

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

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

African Americans are also seeing higher stroke rates than Caucasians.

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

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

Jauja Cocina Mexicana on YouTube

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

https://youtu.be/uxb7qSNFkg8

Hack of the Week

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

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

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

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

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

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

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

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

Links

Where do we go from here?

• Download and share the AHORA and BE FAST Graphics
• Subscribe to the upcoming Strokecast newsletter at http://Strokecast.com/News
• Share this episode on social media or with others by giving them the link http://Strokecast.com/Ahora
• Don't get best…get better

Here is the latest episode of The Strokecast

Ep 131 - Zebras, Treatments, and Aging

 

Click here for a machine-generated transcript

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

Zebras

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

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

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

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

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

She saw the zebra.

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

You can hear Rachel tell her story here.

Treatments and the Internet

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

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

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

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

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

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

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

Aging

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

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

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

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

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

Hack of the Week

A rolling laundry cart* is a surprisingly useful tool.

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

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

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

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Links

Where do we go from here?

• Subscribe to the new Strokecast newsletter launching this summer at http://Strokecast.com/News
• If you missed it, go back and listen to my conversation with Rachel about her daughter's stroke and the one-handed bra at http://Strokecast.com/BraEasy
• Follow Alex's story on Instagram at http://instagram.com/Wheelchain_Rapunzel
• Don't get best…get better.

Here is the latest episode of The Strokecast

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

 

To read a machine-generated transcript, click here.

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

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

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

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

Bio

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

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

How to Use It

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

https://youtu.be/KGuRFJIaHkk

Models

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

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

Links

Where do We Go From Here?

• Shop for a Bra at http://BraEasy.com
• Model for Bra Easy if you are so inclined by emailing sales@BraEasy.com
• Subscribe to the free Strokecast newsletter launching this summer by visiting http://Strokecast.com/news
• Don't get best…get better

Here is the latest episode of The Strokecast

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

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?

• To see if the Motus Hand or Motus Food is right for you, visit http://Strokecast.com/MotusNova
• Subscribe to the free Strokecast Newsletter at http://Strokecast.com/News
• Find me on Instagram at http://Strokecast.com/Instagram
• Don't get best…get better

Here is the latest episode of The Strokecast

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

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

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:

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. 

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?

• Check out Sameer's book, One Fine Day on Amazon* or wherever you get your books.
• The Strokecast newsletter launches this summer so signup today at http://Strokecast.com/news
• Don't get best…get better

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

Here is the latest episode of The Strokecast

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

• Subscribe to the Strokecast newsletter at http://Strokecast.com/News
• Share your favorite kitchen tips with Bill@Strokecast.com
• Stay safe in the kitchen and make yummy things
• Don't get best…get better

Here is the latest episode of The Strokecast

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 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?

• Check out the Spooniepreneur Podcast here or wherever you listen to podcasts.
• You can learn more about Nicole's services at Bloom Administrative Services.
• Follow or subscribe to the Strokecast for free in your favorite podcast app so you never miss an episode.
• Don't get best…get better.

Here is the latest episode of The Strokecast

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:

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?

• Listen to "A Lesson in Swimming" and follow Michael on Instagram.
• Follow or subscribe to the Strokecast for free on your favorite podcast app so you never miss an episode.
• Don't get best…get better.

Here is the latest episode of The Strokecast

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