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