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