2021-06-19

Ep 135 - Your Pet Brain


 

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

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

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

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

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

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

Bio

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

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

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

Aydika James snuggles a large plush brain

Miles the Traveling Penguin

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

You can see his old adventures here.

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

Fluffy Photo Shoot

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

It's all in my Head

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

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

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

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

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

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

Harry Potter and the Deathly Hallows

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

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

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

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

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

It is a simultaneously scary and empowering thought.

Hack of the Week

Find something funny everyday.

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

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

Links

Where do we go from here?

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


Here is the latest episode of The Strokecast

2021-06-12

Ep 134 - Sex Disparities in Stroke Research


 

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

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

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

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

RIGHT?!

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

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

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

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

Bio

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

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

Hack of the Week

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

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

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

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

Like Minded

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

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

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

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

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-06-05

Ep 133 - 4th Strokeaversary


 

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

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

Celebration

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

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

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

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

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

Going Forward

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

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

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

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

Hack of the Week

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

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

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

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

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

Where do we go from here?


Here is the latest episode of The Strokecast

2021-05-27

Ep 132 - AHORA with Dr. Remle Crowe


 

Click here for a machine generated transcript.

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

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

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

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

Tacos are very important.

Bio

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

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

AHORA Means Now

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

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

Let's look at a translation.

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

Stroke symptom graphic

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

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

Ethnic Differences in Stroke

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

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

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

African Americans are also seeing higher stroke rates than Caucasians.

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

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

Jauja Cocina Mexicana on YouTube

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

https://youtu.be/uxb7qSNFkg8

Hack of the Week

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

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

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

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

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

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

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

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

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-05-21

Ep 131 - Zebras, Treatments, and Aging


 

Click here for a machine-generated transcript

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

Zebras

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

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

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

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

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

She saw the zebra.

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

You can hear Rachel tell her story here.

Treatments and the Internet

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

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

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

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

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

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

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

Aging

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

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

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

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

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

Hack of the Week

A rolling laundry cart* is a surprisingly useful tool.

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

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

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

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Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-05-14

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


 

To read a machine-generated transcript, click here.

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

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

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

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

Bio

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

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

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

How to Use It

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

https://youtu.be/KGuRFJIaHkk

Models

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

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

Links

Where do We Go From Here?


Here is the latest episode of The Strokecast

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