Strokecast: The Stroke Podcast for Survivors, Clinicians, Care Partners, and all our Brain Injury Colleagues

Stroke research is important, and there's not enough of it. Finding funding for small and medium sized projects is hard and getting wider awareness of them is even harder.

Collavidence seeks to change that. It's a Kickstarter-like platform for medical research, with a focus on stroke. Research teams Post research projects they are developing, and the public can choose to back them. They also participate in working groups with other experts to further refine the projects as the y pursue results.

Collavidence Chief Knowledge Office Dr. Aravind Ganesh joins us in this episode to talk about the platform and how democratizing the research funding process can help us all.

If you don't see the audio player below, visit the original post here, or look for the Strokecast in you podcast app.

Click here for a machine-generated transcript

Who is Dr. Aravind Ganesh?

Dr. Aravind Ganesh

Dr. Aravind Ganesh is a Vascular and Cognitive Neurologist. He completed his MD degree at the University of Calgary, followed by a DPhil in Clinical Neurosciences at the University of Oxford’s Centre for Prevention of Stroke and Dementia as a Rhodes scholar. He earned an Associate Fellowship from the United Kingdom’s Higher Education Academy through his teaching contributions at St John’s College (Oxford). He completed his neurology residency in Calgary, followed by a combined fellowship in stroke and cognitive neurology, funded by Alberta Innovates and the Canadian Institutes of Health Research.

Dr. Ganesh is a Fellow of the Canadian Stroke Consortium, and is actively involved in the development of best-practice guidelines for stroke and dementia care. His clinical research is focused on the natural history, prevention, and treatment of stroke and cognitive impairment. He is passionate about medical education, and serves on the editorial boards of Neurology, Neurology: Clinical Practice, and Stroke.

Should you back projects on Collavidence?

Maybe.

If you feel the project has value (or could have value), if it sounds like something you would like to support, if the team behind it seem credible, and if you can afford it, go for it! Contributions don't have to be large to be meaningful.

Be aware that it's always possible a project won't work out. There are lots of things that can go wrong, just like on other crowd funding platforms like Kickstarter and Go Fund Me. Exercise caution, like you do with other financial concerns.

If you want to have a concrete, direct impact on the research projects that can make life better for the stroke community, though, this might be a great way to do it.

Survey

Do you have thoughts about the Strokecast as a show? I want to hear about it. Please complete the listener survey at http://Strokecast.com/survey by March 31, 2023 to share your insight. I'd realy appreciate it.

Hack of the Week

This week's hack is more for researchers. That's to communicate with the community.

Often researchers may pursue projects to address what they see as problems in the stroke field, and that's great. It's also important, though, to listen to the people they want to help. Does a research project address a problem member of the survivor community actually care about solving?

A recurring theme from disability advocates is, "Nothing about us without us." That means before folks try to solve things for people with disabilities, they ought to actually communicate with people with disabilities. Don't try to solve a problem we don't have. And don't assume that solution created by just a group of abled folks will work or appeal to disabled folks.

Get the input of people with disabilities, and involve us in the process. Hire disabled consultants and architects on projects benefiting the disabled. And keep in mind that accessible design is good design.

Nothing about us without us.

Links

Where do we go from here?

• Check out some of the projects on Collavidence.com
• Share this episode with someone you know with this link: http://Strokecast.com/CrowdFundingResearch
• Complete the Strokecast listener survey at http://Strokecast.com/survey
• Don't get best…get better

More thoughts from Dr. Aravind Ganesh

Whether you're celebrating the new year on January 1, January 22, September 15, your birthday, your Strokeaversary, or some other date in 2023 or beyond, it's a time to pause and think about where you want to go and what you want to do.

We could talk about resolutions, but that seems to set us up for failure. Few people set and achieve resolutions. Failing them within 2 weeks of the new year is pretty much a comedy trope at this point. So with all that cultural baggage, let's not talk about resolutions.

Let's talk things we can do. Here are 5 things you can build into your plan for the new year.

If you don't see the audio player below, visit http://Strokecast.com/MSN/NewYear to listen to the episode.

 

Click here for a machine-generated transcript

Decide what you want

Many people go through life on autopilot; they let the things they want be decided by societal standards or other people or their perceptions of what they're supposed to want.

Others choose goals, priorities, and direction once and never think about it again.

Stroke adds yet another layer to that. Most stroke survivors I speak with say the stroke changed not only their abilities but also the way the think about life. It adjusts their priorities or brings a level of clarity they might not have had before.

Whether you thought you knew what you wanted before a stroke or not, surviving a stroke gives you a reason to stop.

To stop and think about your goals.

It gives you a chance to think about what you really want now.

That doesn't mean you have to scale back because of language, physical, cognitive or other disabilities. It's possible your dreams now can be even bigger.

What it does mean is you have some work to do. You have to figure out what you want to do and why you want to do it.

Before you pursue a goal or plan of action for your new year, decide if you want the result. Maybe running seems like something you SHOULD do, but do you really want to? You're unlikely to be successful at achieving a goal you don't care about.

Take some time and a pen and paper or blank digital document or dry erase board or a partner who can serve as a scribe, and make a list of things you care about and want to do. What are you passionate about? What do you care about? What lights a fire under you?

After stroke your answer may be wildly different than it was before.

If the answer is "nothing," that's okay, too. Perhaps dedicate your year to finding something you care about. Or find a counselor you can  communicate with. Lack of interest in things could be a sign of depression.

In my experience, many people don't know what they really care about or want to do because they haven't taken the time to figure it out. The run on autopilot doing what they think they are "supposed to do" rather than what truly inspires their soul.

So think about what you want and then decide to pursue it.

Make a plan

Once you know what you want to do, then you can figure out how to do it. Talk to people who can help. Maybe that means getting more PT, OT, or speech therapy. Maybe it means finding a business or writing coach. Maybe it means more work by yourself at home.

You don't have to get it all at once. Break it up into smaller pieces and work on a plan to complete these individual pieces.

One method that helps it to build SMART goal. These are goals that are Simple, Measurable, Achievable, Relevant, and Time bound. I talked more about SMART goals in an earlier episode at http://Strokecast.com/SMART.

Find a community

Loneliness and isolation are two if the biggest non-medical challenges stroke survivors face. It may seem even harder for younger stroke survivors who suddenly find themselves flung off the traditional life paths of advancement their peers are on.

So find a community of stroke and brain injury survivors. We're out there.

Look for local support groups. Many are meeting online these days. Try different groups until you find one you feel comfortable it. Afterall, each group develops its own personality. Some will be mainly social while others will focus more on education. Some will be more diverse while others may be made primarily of older folks. If you're not comfortable in one group, try another.

Check out the various Stroke hashtags on Instagram, Twitter, and Tik Tok. Follow and interact with folks using tags like:

• #Stroke
• #StrokeSurvivor
• #StrokeLife
• #StrokeAwareness
• #StrokeRecovery

Try some others that you come up with. Watch the content. Like and comment on it. Share your favorites.

Share your story

All those stroke stories that you've found helpful? They were told by someone who thought their own story was boring and not worth telling. Many people can't imagine how their experience can help others.

So consider telling your story. That doesn't mean you need to start a podcast or YouTube channel (but let me know if you do). Just work on becoming comfortable telling it to other survivors and your family members and friends.

If you have a forum to tell your story, tell it. Maybe it will help another survivor feel not so alone. Or it will help your colleagues understand other folks in their own family or social circle. Maybe a stranger will learn the BEFAST warning signs, and that will make all the difference in someone else's stroke.

At the very least, it may help you better understand and make peace with your own experience.

As a species, we thrive on storytelling. And you have a doozy to share.

Reach out to your therapists

If it's been a while since you were in contact with your medical team or you ended therapy for whatever reason, reach out to your former PTs, OT, SLPs, Doctors, etc. Let them know how you’re doing and share your progress.

If you can't visit the medical facility, send them an email, or send a note or card to the facility.

They work hard to get us to the next level, but they don't see most of us after that. Most of them love it when former patients send them an update or reach out to them.

They helped us so much. This is an easy, cheap, and powerful way to help them.

Have a great new year

This new year, whenever you mark it, is yours to decide what to do with. I know, that's easy to say and sometimes it's harder to see it. But the time is going to pass regardless of what you choose to do.

Take this moment and make some decisions. Do the things you can do to influence the outcome of your future. Whatever your goal is, you won't get any closer to it unless you know what it is and take active steps to get there.

Survey

As we head into the new year, I want to hear from you about how I can make this show better. Or to keep it the same if you like it the way it is. Visit http://Strokecast.com/Survey to fill out the short form and share your thoughts. You can do so anonymously. If you'd like to shed a little anonymity, you can enter a drawing for a $25 Amazon gift card. For more details and to complete the survey, please visit http://Strokecast.com/Survey.

Win of the Week

If you had an accomplishment or win, big or small since your stroke, the community wants to hear about it. Visit http://Strokecast.com/Win to learn how you can share it so we can all celebrate.

Hack of the Week

If you pour liquor from bottles, look for 1 ounce or 1.5 ounce pour stoppers like these on Amazon: http://Strokecast.com/Hack/Stopper. * I found some that I use at Total Wine so they're readily available.

I enjoy nice whiskey, Scotch, and bourbon in moderation (my doctor said, "Just don't drown your brain in it." The problem I have with the bottles comes from my hemiparesis.

Pulling the lid/cork from the bottle means holding the bottle in place. I have to count on my weaker and spastic arm to hold the bottle still while I remove the lid with my other hand. And then I have to rely on my affected arm to not jerk and spill the bottle the instant the lid pops free. Putting the cork/top back in is easier, but still presents similar challenges. So let's reduce the risk of spill.

These pourers mean that I have to only pop the lid off once, and then put the pourer in. Over the course of the next several months when I want to sip a dram, I just pick up the bottle and pour.

The bonus perk here is that I know exactly how much I'm pouring -- no accidental overpours.

If you have non-alcohol bottle, like flavorings for coffee or olive oil, you may want to take a look at these stoppers, too. The texture of the liquid may be an issue, but look into it to figure out what works for you.

Links

Where do we go from here?

• As you start your new year, whenever it starts, do the 5 things we talked about here:
  • Decide what you want
  • Make a plan, Find a community
  • Share your story
  • Contact your therapists

• Share this guide with someone you know by giving them the link http://Strokecast.com/NewYear
• Visit http://Strokecast.com/Win to share your win
• Don't get best…get better.

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

1) Decide what you want

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

2) Make a plan

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

3) Find a community

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

4) Share your story

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

5) Contact your therapists

There are 5 things stroke survivors can do to have a great new year. I discuss them at http://Strokecast.com/NewYear

When most stroke survivors go home, that's not the end of recovery or therapy. They often get to go to an outpatient facility a few times a week to continue making progress with PT, OT, and speech therapy. It's great when that's feasible.

Unfortunately, it can mean spending several hours to attend a 45 minute session. An it may require that not only from the survivor but also from a care partner. Transportation logistics, scheduling challenges, etc. can take energy that would better spent on recovery and rehab.

But do we really need to travel?

The pandemic radically sped up the adoption of telemedicine and remote healthcare. Facilities added infrastructure and patients learned to use Zoom and Teams. A lot of therapy -- especially speech therapy can be done online with a remote therapist.

Lenora Edwards is a Speech Language Pathologist with Better Speech. Better Speech has more than 150 therapists around the US offering remote Speech Therapy.

In this episode, Lenora tells us how this works, how it helps, and when remote therapy doesn't make sense.

If you don't see the audio player below, visit http://Strokecast.com/MSN/BetterSpeech to listen to the conversation.

 

Click herefor a machine-generated transcript

Who is Lenora Edwards?

Lenora Edwards is an ASHA board certified Speech-Language Pathologist.

Throughout her career as a speech therapist, she has enjoyed treating and evaluating a wide variety of speech and language issues across the lifespan.

Aphasia, Apraxia, and Dysarthria

These are three common speech challenges after a stroke.

Aphasia is trouble finding words. A person has all their thoughts, feelings, and smarts, but they just can't access the vocabulary to express themselves. They're not dumb, and they still have all their intellectual capability and processes. They just can't use words.

In some cases, they can understand things fine; in others, they lose the ability to understand words, too. Sometimes they can read and write. Sometimes those functions break.

Apraxia is a challenge of getting the words in the right order. Once you can access your words, and pull them off a metaphorical shelf, you still need to chain them together into sentences and paragraphs to communicate with other people.

Dysarthria isn't a language issue itself; it's a speech issue. Dysarthria happens when we have trouble with the mechanics of speech -- tongue, larynx, jaw, and lip movements for example. This is what had for a little while. My hemiparesis wasn't just my arm and leg, but also the muscles on the left side of my face and mouth. It resulted is some slurring and mild pronunciation challenges. Overall, it was one of my milder deficits at the time. Most folks thought it cleared up in a couple weeks; I continued to notice it for 6 months.

One fascinating aspect of all this is just how much goes into language and communication. There are so many different ways it can go wrong, it's a wonder anyone can speak at all.

Adjective Sequence

We learn our first language intuitively We pick it up as a child from those around us, cultural tools, our environment, and later school. We don't learn the rules first. We learn them after we've already been using them for much of our lives.

In English, adjective sequence is one of those rules. Many of us heard or read the children's books about Clifford, the big, red dog. Just saying that phrase will trigger a memory for many folks. Even if this is the first time you've heard about Clifford, you understand what I mean. You may not be aware that by big, I mean house-sized, but you get the point.

If I mention Clifford, the red, big dog, it seems wrong. And it is because in English (in the US, at least), size adjectives come before color adjectives. That's the rule. When did I learn this?

Last year. Seriously.

I never knew this was a rule before, but I "knew" it was a rule. I knew it intuitively from hearing and speaking the language for 50+ years. I think that's the experience most people have.

It's one of the reasons language is so fascinating. Two sentences adhering to the core rules of grammar with all the same words come into our awareness, and one of them is simply wrong. And we may not know why. But we know it.

Adjective sequencing is an interesting topic. You can read more about it at Grammarly.

Emojis!

English is a phonetic language. We build our words with letters and letter combinations that make sounds that align with the sound of the words when we speak. We can create any written word with just 26 symbols.

Other languages are symbolic. Characters may not represent a sound, by a symbol. Combining symbols and impressions of images and concepts is how to create words. Many languages from Asia are primarily symbolic languages. Learning to "spell" words is more complex, if you can even call it spelling.

Language is continuing to evolve, though. Over the past 30 years, we've seen the definite increase in symbolic elements coming into our written communication. For example : )

Using the keyboard to create symbols from letters grew rapidly in the online communities of the late 80s and early 90s. Gradually, we started to see Emojis, or dedicated symbolic characters come into the mainstream of communication, to the point where we now have hundreds of them. 😊

Abbreviations and acronyms have become words. We know what lol, WTF, AFK, and more mean at a glance even though we might never say them out loud. They exist mainly in our typed language.

One thing I like about emojis is that they can add nuance to our text-based communication. The add a flair to the conversation that might have been a tone in the voice in a vocal conversation. They help add emotion back into text that got stripped out when we started typing.

And since they're visual, everyone can understand, right? I mean a smiley face transcends borders and language, right?

Well, all languages evolve, even emojis. At one point, the eggplant and peach emojis just represented a vegetable and fruit. Over time, they've come to be stand-ins for sexual activity. If you don't know that, it can make for some awkward situations.

With abbreviations, it matters, too. For some, LOL means "laughing out loud." For others, it means, "Lots of Love." Knowing who your typing with and that you both have the same interpretation matters.

There was an interesting thread on the Ask A Manager site about this recently. It discussed the face with steam coming from the nose. 😤 This may even look different on different devices. But if someone sends that to you, does that mean they are working hard or does it mean they are angry. You can read the thread here.

And this is one more reason why language is such a fascinating area and why aphasia really sucks.

Hack of the Week

We've heard it before because it is so important -- be patient, and allow those around you to be patient with you.

Our own recovery takes time. It's a marathon, not a sprint. Reacquiring abilities can take years.

It's equally important for others in a survivor's life to be patient. There is an instinct to help as much as possible -- to rush and open a door, to take things from a survivor to carry them, or to finish their sentences for them. But don't. sure, help if asked. Or if you want to offer help, that's okay. But when a survivor declines help, respect that decision.

The way to learn to do things again is to do them. We have to be patient with ourselves and others to make that possible.

Links

Where do we go from here?

• Check out the links above to learn more about Lenora and Better Speech.
• Share this episode with someone you know by giving them the link http://Strokecast.com/BetterSpeech
• Share your Win of the Week by calling 321-5Stroke and sharing it in a voicemail.
• Don't get best…get better.

A minor electric signal is all it takes to move a couple hundred pounds of human.

When we walk, the brain sends a signal through the spine to the individual muscles of the legs, feet, and core to manage the complex orchestra of contraction and relaxation that makes balance and walking possible. After stroke, the brain may stop sending all or some of those signals. That breaks the ability to walk. It happened to me and millions of others.

There is nothing wrong with my leg, though. The muscles, joints, tendons and nerves in my leg, foot, and core are all still there and as fully functional as they were before the stroke. They're just waiting for he signal from my brain which, in the beginning, never came.

Rehab was about getting the brain to send that signal again. And it started sending some of it. It's not as complete as it used to be. Or as strong. But it's enough that I can walk with my cane and brace well enough, and not quite as well without my aids.

But, again, it's a brain issue, not a leg issue. If you can send a signal to those muscles without the brain, can you effectively get those muscles to move and walk more effectively? Yes you can.

That's what Neural Sleeve from Cionic does.

In this episode, I speak with Cionic CEO and founder Jeremiah Robison about the Neural Sleeve, why it works, how stroke survivors can learn more, and how his daughter inspired this product.

If you don't see the audio player below, visit http://Strokecast.com/ElectricPants to listen to the conversation.

Click here for a machine-generated transcript

Who is Jeremiah Robison?

Jeremiah Robison is the Founder and CEO of CIONIC, an innovative company that builds lightweight and durable bionic clothing driven by powerful algorithms that adapt in real time to each individual's mobility needs.

He started the company in 2018 after his daughter was diagnosed with cerebral palsy and he was frustrated at the lack of effective technology available to help improve her mobility. Four years later, CIONIC introduced the breakthrough, FDA-cleared Cionic Neural Sleeve, the first product to combine sensing, analysis and augmentation into a wearable garment.

Prior to CIONIC, Jeremiah spent twenty years at the intersection of data, algorithms, and the human body, driving innovation in sensing and machine learning at Apple, Openwave Systems, Slide, and Jawbone. Jeremiah has a BS and MS in Computer Science from Stanford University.

Jeremiah's daughter

Jeremiah's daughter, Sofia, was apparently in a rush to meet this amazing world. She was born early, weighing just 2 pounds, 4 ounces. She developed Cerebral Palsy in the process.

Cerebral Palsy (CP) and stroke are similar conditions. In fact, as Dr. Heather Fullerton explained in episode 49 ( http://Strokecast.com/PediatricStroke) roughly 50% of CP is caused by stroke in utero or shortly after birth. CP is the result of not enough oxygen getting to the right part of the brain at the right time of development. Brain cells die or don't develop or don't form the right networks the way they should. As a result, a child can develop any number of challenges around mobility, speech, dexterity, and more. Just like adults (and other children) with stroke.

The damage from stroke in the brain is also, in part, due to lack of oxygen getting to the right parts when they need it due to a disruption in the blood supply.

Stroke survivors have a lot in common with our neuro cousins in the CP and MS communities, to name a few.

Jeremiah talks about wanting to help Sofiawith her gait, as any parent would. Jeremiah was in a position to do something about it, and the Neural Sleeve comes from that experience.

Sofia herself is now 12 years old and has developed a presence on Instagram with the family's nonprofit at @WAWOSORG. Sofia shares her own inspirational tips and exercise strategies for other kids with CP or other disabilities.

View this profile on Instagram

WAWOS (@wawosorg) • Instagram photos and videos

FES

FES stands for Functional Electric Stimulation. I talked about the technology in more detail in episode 92 - Electrodes and a Stationary Bike — FES for Stroke Treatment.

I've used eStim in therapy while I was inpatient and then at home, too. Devices are available on Amazon for $30-$50.* You put 2-4 electrodes on an arm or leg, roughly at either end of a muscle. The AA battery powered unit sends a minor electric signal to the electrode. The nerves at the end of the muscle detect it and think the brain is sending the signal. The nerve then contracts or relaxes the muscle.

The muscle is doing the actual work. It can be a great way to help an affected limb get some exercise, stretch some tendons, and generally not waste away. In the shoulder, it can even treat subluxation.

FES is the next level of eStim. Instead of just making the muscle move, it makes it, and other muscles move much more precisely to accomplish a specific function. In the case of Restorative Therapies, this was to coordinate movement to drive rahab.

https://youtu.be/HJo07_JimOA

Some of the more well-known FES devices are those from Bioness and Walkaide. They specifically stimulate the muscles that lift our toes (the dorsiflexors) to eliminate foot drop while walking. They are an alternative to an AFO. The look like a cuff that a person wears just below the knee. They work great for some folks, but not all. They're also not typically covered by insurance.

I tried them both earlier in my post-stroke life. The Walkaide worked better on my gait, but at $5K-$6K to buy the unit (in 2019), I decided the benefit simply wasn't worth the cost for me. For others, the device is a great solution. Author Maddi Niebanck who survived a stroke at 22 and was in episode 97 uses the Bioness and is a big fan.

The Neural Sleeve takes this technology further. As Jeremiah explained, the network of electrodes in the device means that precise placement is not as important. Software can adjust for that.  With its larger assortment of electrodes, it can also stimulate more muscles and address other aspects of gait. And it looks less like a home-release ankle monitor.

The rental aspect of the Neural Sleeve also makes it more accessible to more folks, similar to the approach adopted by show sponsor Motus Nova for its rehab device.

The best rehab gear is the gear you won't need forever, and that rental becomes much more compelling. At least under the American model of health care financing.

Cionic Images

You can get a look at the device in these images. Or visit http://cionic.com.

No Plateau Podcast

Many stroke survivors have heard of Saebo. The make a series of devices for survivors. One of them is the Saebo Step, which is an alternative AFO. They sent me one several months ago, and I use it as my summer AFO. Specifically, it's the one I use when I wear short pants or sneakers.

They also have a podcast called the "No Plateau Podcast" which is a great name for a stroke oriented show. And I'm the guest on episode 6. It was a lot of fun and I didn't have to do the editing.

In the episode, I share my stroke journey and we talk about the good, the bad, and the ugly of stroke rehab. We also talk about what I mean when I say, "Don't get best…get better." And we talk about some of the inequities affecting female presenting and BIPOC stroke survivors.

You can listen right here. If you don't see the audio player below, visit http://Strokecast.com/ElectricPants to listen to the conversation. Or go directly to the audio at this link.

And check out more episodes of the No Plateau Podcast on Saebo's website or in your favorite podcast app.

Hack of the Week

Jeremiah recommends patience. Recovery is a journey as we well know, and we can take it just a piece at a time.

It's also important to capture the process in notes, video, audio, and/or pictures. As we make progress day-by-day we won't see it. It's only when we look back at our records that we see how far we've come.

And of course this aligns well with the idea of "Don't get best…get better." It's that incremental progress that matters…little bits every day that over time add up to success and goal achievement.

Links

Where do we go from here?

• To learn more about Cionic, Jeremiah, and Sofia, visit http://Cionic.com or check out the social media links in the table above.
• Share this episode with someone you know by giving them the link http://Strokecast.com/ElectricPants
• Subscribe to the Strokecast newsletter at http://Strokecast.com/News
• Don't get best…get better.

Calli Varner and I don't have a lot in common. Calli is athletic and into sports. I … am not. I was born in New York City; Calli was born in the Midwest. Calli thrives in Phoenix, AZ. I still don't understand whatever possessed someone to put the 5th largest city in the US in the middle of an oven.

We do have a few things in common, though. We both like cats. We both like to write. And we both experienced stroke at a relatively young age.

Sportswriter Calli Varner survived her stroke at 35 Thanksgiving weekend in 2021.

I first read Calli's story through the America Heart Association's profile and wanted to learn more. You can read that original profile here. I wanted to hear more so Calli joins me in this episode to share her adventure.

If you don't see the audio player below, visit http://Strokecast.com/MSN/Calli to listen to the conversation.

Click here for a machine-generated transcript

Calli was lucky in her recovery, but luck isn't just about the randomness of fate in the universe. I like the definition that says luck is what happens when preparation meets opportunity.

Getting to an ambulance quickly made a difference for Calli. Getting tPA quickly made a difference. Already being athletic made a difference. Determination in her recovery made a difference. Simple, clear goal setting made a difference. And the help of Lt Dan, pushed it over the top.

Who is Calli Varner?

Calli is a sports lover and writer in Scottsdale. At 35, she never expected to experience a stroke at such a young age. She is active, attending cycling classes three times a week. While visiting her parents over Thanksgiving, Calli suffered from a moderate acute ischemic stroke when a blood clot traveled to her brain.

After eight months of recovery that included living with her parents, and going back and forth to doctor's appointments, Calli is now fully recovered and ready to get back to football games. Here is how she was able to become stronger after her stroke thanks to the support around her (especially her cat, Lt. Dan) and keeping her eye on the prize, attending a Chiefs game in the fall. 

You can follow Calli on Twitter at @CalliDoesSports

Calli and Lt Dan

Fast Treatment

The BEFAST stroke warning signs (Balance, Eyes, Face, Arms, Speech, Time) includes time in the list because it is so essential.

Many ischemic (clot-based) strokes can be stopped with a drug called tPA. It has to be administered within the first 3-4.5 hours after stroke symptoms first appear, though.

While research is looking to extend that window, today, those limits apply.

Every minute of stroke means more dead brain cells. tPA can reduce the damage by restoring the flow of blood, oxygen, and nutrients to starving cells before they die, but can't bring them back once they're dead. Calling an ambulance is the essential first aid step when someone MIGHT be experiencing a stroke.

In Calli's case, she got treatment quickly which helped drive her recovery and get her to the life she lives today.

Fibromuscular Dysplasia

According to the Mayo Clinic, Fibromuscular Dysplasia is a condition that leads to changes in the size of blood vessels, often supplying the brain or kidneys.

Narrower blood vessels mean less blood flow to critical parts of the body. These choke points in the circulatory system can also lead to turbulence and turbulence makes clot formation more likely.

Calli has this condition in the vessels in her neck and it MAY be what led to her stroke.

Ultimately, up to 20% of strokes are "cryptogenic," meaning there is no known cause. It's frustrating because it means survivors don't know how to prevent it.

In Calli's case, they speculate that the reason her fibromuscular dysplasia didn't cause issues before was because she was in such great physical shape.

Being in great shape doesn't mean you won't have a stroke. It just makes it more likely and potentially delays it to a later point in life. And that could well be why Calli had her stroke at 35 instead of 25. But, again, I'm not a doctor. Just a random marketing guy.

Strokecast Gift Guide

Calli recommended the book, "Fear is a Choice" by James Connor.* James survived cancer and went on to an American  football career in the NFL. Calli found great inspiration in the book. You can find it here.*

You can also find it in the Strokecast Gift Guide. If you're looking for books by guests on the show, books related to stroke or recovery from other folks, gadgets to help with recovery, or gadgets to make life a little easier, check out the Strokecast Gift Guide.

It's a list of neat stuff with links to buy it on Amazon. You can check it out at http://Strokecast.com/GiftGuide. *

THE Game

On Sunday, September 11, 2022, the Kansas City Chiefs of the NFL journeyed to Phoenix, AZ to battle the Phoenix Cardinals, and Calli was at the game.

Congratulations, Calli, on achieving one of your main stroke recovery goals. I hope the stadium experience was everything you hoped it would be.

And to top it off, Calli's Chiefs won the game 44 to 21.

https://twitter.com/CalliDoesSports/status/1569752438298800130

Hack of the Week

Calli suggest you let yourself feel what you feel.

So often after stroke or other trauma, we don't want to explore our feelings. We want to pretend things didn't happen or that they didn't affect us. But they did.

Denying our feelings delays dealing with them but we can't delay forever. It's like we're borrowing from the future and we'll have to pay back that emotional energy with interest.

Dealing with this stuff, though, helps us become the new person we are. I think every survivor I've talked with describes the "new me." We're transformed by stroke.

The old life is gone. We may get back to aspects of it, or parts of it, and the person we are now may (or may not) be substantially similar), but we are new. And how do we grow into that?

It starts with letting yourself feel your own feelings.

Links

Where do we go from here?

• Follow Calli on Twitter and Instagram
• Share this episode with someone you know by giving them the link http://Strokecast.com/Calli
• Subscribe to the Strokecast Newsletter at http://Strokecast.com/News
• Don't get best…get better

More thoughts from Calli

Anna Kerry went from yoga fan and enthusiast to Yoga teacher. Then the pandemic hit. A   year later, at age 35, she had a stroke due to as PFO.

In this episode she shares her story. She tells us how yoga got her through stroke recovery and how it informs her work today. Anna talks about the relationship between trauma and yoga, and she talks about the impact stroke has had on her life with her husband.

As Anna has gone through this journey and continued both her studies and her teaching, she developed a yoga program specifically for stroke survivors.

And Anna explores the power and near sacredness of her own yoga mat.

If you don't see the audio player below, visit http://Strokecast.com/Anna to listen to the conversation.

 

Click here for a machine-generated transcript

Who is Anna Kerry?

In Anna's own words:

I had a stroke aged 35 in March 2021. I've had a regular yoga practice for about 10 years and decided I loved the practice so much that I wanted to learn how to teach and share my love of yoga. I qualified in Aug 2020 and had only been teaching for around 7 months when I had a stroke. As the stroke came out of the blue I had to dig deep into my yoga practice to help me through and believe that my yoga practice has helped my mindset and my mental health during this traumatic time.

I'm now in a position where I want to help other stroke survivors through their recovery so I designed The Life After Stroke Programme -- a 6 week programme designed to help stroke survivors regain their life and confidence through a holistic and embodied approach to recovery.

What is a PFO?

Anna's stroke was caused by a PFO. She found that out a month after her stroke, and she will likely get it fixed eventually.

A PFO is a hole in the heart. Roughly 25% of the population has one. I have one. Guests Misha Montana and Christine Lee both had PFOs that led to their strokes.

After we are born, our blood follows a path through the heart. It comes in the right side. When the heart beats, the blood on the right side heads out of the heart to the lungs. There, it drops of CO2, picks up oxygen, filters out clots, and heads to the left side of the heart. It will pour into the left side and when the heart beats, it sends that oxygen-rich blood on to the brain and other parts of the body. Then that blood drops off its oxygen, picks up CO2, and heads back to the right side of the heart to start the whole cycle over.

Before we are born, though, the process is different. While we are developing in our mothers’ uteruses, we don’t breath air. All the oxygen and nutrients we need to build fingers and toes and kidneys and hearts and brains comes from the umbilical cord.

Since we’re not breathing air, there’s no point in sending blood to the lungs. Instead, in utero it goes straight from the right side of the heart to the left side of the heart through a hole in the middle. That hole is called a Patent Foramen Ovale, or a PFO. It normally closes on its own shortly after we are born.

A quarter of the time it doesn’t close after birth, and that allows unoxygenated, unfiltered blood to sneak across the heart, skip the lungs and drag a blood clot to the brain.

So, if you’ve had a stroke, and you have a PFO, should you have surgery to close that hole?

Maybe.

Christine and Misha had their PFOs closed. I did not. Anna is waiting to get her PFO closed.

I talked about this issue in a lot more detail with Dr. David Thaler. You can listen to that conversation at http://Strokecast.com/pfo.

A Place of Her Own

Anna Kerry has a special place in this world -- it's her yoga mat.

At first glance, it's just a piece of material, but once she is on her mat it becomes a portal to take her to another special place.

The mat allows her to center herself. It's a place she can experience joy and agony; happiness and anger; tears and laughter; and everything in between. When Anna is on her mat she can take a break from the rest of the world so that she can deal with the rest of the world. It triggers a mind shift to put her in a place where she can process things and, well, do yoga.

Lots of us have things like a yoga mat. Maybe it's a special blanket or a childhood toy. Maybe it's a trinket that takes us back to a trip we took years ago or it's a gift from a lover or friend. Perhaps it’s a special chair that holds our memories of the past.

Once we touch or engage with that thing -- whatever it is -- we can feel a change in our own energy.

Is that a bit woo-woo? Not really. Perhaps it is a metaphysical portal to a different plane of time and energy.

Or perhaps it's another example of the core principle of neuroplasticity -- cell that fire together, wire together.

Our brains work on patterns and shortcuts. That's why therapy works. The more repetitions w get in PT, OT, or Speech Therapy, the more we drive new neural pathways so we can walk, speak, or bake cookies again. Repeating a process reinforces those connections until we can almost do it automatically.

A special place -- like Anna's yoga mat -- can do that, too. Sitting down on that mat can kick off those routines in the brain that shift us to a different place. The object starts the program running in our brains, and our brains do the rest.

And the really great thing about Anna's yoga mat is that when life dictates, she can roll up her special place and take it with her.

Other Yoga Themed Episodes

Teaching Yoga after a Stroke with Leslie Hadley

 Leslie Hadley went from Corporate executive to yoga teacher to stroke survivor and back to yoga teacher. Along the way she added life coach and tapping expert to her repertoire. She joins us in this episode to share her journey and explain what tapping and the Emotional Freedom technique is.

Stroke, Naps, Gratitude, and Yoga with News Anchor Kristen Aguirre

Kristen worked as a news anchor in Denver, survived a stroke, and was fired. She worked to pick up the pieces of her life, returned to the anchor desk back east and found gratitude is the key.

Win of the Week

Shelly shared her win of the week with us. You can hear it in the episode. Here's what she had to say:

My name is Shelly, and I had a stroke four months ago.

I was at the hospital for two weeks of acute rehab. I came home in a wheelchair, but I've been working really hard, and this week I did my farthest walk -- 4.2 miles.

Things are still not 100% for sure. My arm isn't working that well. I can't feel in the arm.

But the leg -- I've just been walking so much that I think things have improved. The more I've done, the more I think things improve.

I didn't understand that when I first had the stroke. In physical therapy, when they would say that I could learn to walk without feeling, but as I've done it and now people can't always tell that I had a stroke when I walk, so that's been exciting for me.

Thanks for letting us be part of your recovery, Shelly!

What is a recent win you've had?

Maybe you walked a lot. Or said a complete paragraph out loud. Or got a new job. Or slept a whole night. Or chewed and swallowed regular food without incident. Or booked a new OT appointment.

I want to know what's gone well with you, big or small. And I want to share it with the listeners.

You can record a brief message telling me who you are, when your stroke was and what you accomplished. You can do this with the voice memo feature on your phone or another recording process and email that recording to [email protected].

Or you can do it the simple way. Simply call (321) 5stroke, any time day or night, and leave a voicemail describing your win.

I'll share wins in future episodes so we can all celebrate with you.

Hack of the Week

Anna explained we need to take time to check in with ourselves. Yoga breathwork is one way to do that. It doesn't need to be yoga, though. Anna offered 3 key ways to do this.

First, don't shy away from your feelings. A therapist can help you explore them further.

Stroke is trauma. Grieving is natural. Clinical Depression is a common result of stroke (see http://Strokecast.com/depression for more information). It's a major life change and it's perfectly normal to feel feelings about it.

Ignoring them won't make them better. Therapists can help. Neuropsychologists are also available with special training to help folks with brain injuries (see http://Strokecast.com/karen for more details).

Second, acknowledge and recognize anger, anxiety, and other uncomfortable feelings. Those feelings are trying to tell you something. Talk to your anxiety like it's a small child. It wants attention and it's throwing a tantrum. Why?

Third, offer yourself kindness and compassion. You're not an expert in this new body, brain, and life. You'll get things wrong, and that's okay. Forgive yourself for not having it all figured out.

Links

Where do we go from here?

• To learn more about Anna Kerry and her work, follow her on Instagram @theikosyoga and check out her website at https://theikosyoga.com/.
• Share this episode with someone you know by giving them the link http://Strokecast.com/Anna
• Send in your win of the week to [email protected] or call 321-5stroke
• Don't get best…get better.

Depression sucks, and it lies. It's a life threatening condition that affects a lot of stroke survivors and can block their recoveries.

In 2010, business owner Keith Taylor survived a stroke. A rare genetic condition meant that the arteries and veins in his body don't always connect the way they're supposed. It's called Hereditary hemorrhagic telangiectasia (HHT). One day, that flawed connection leaked and began killing brain cell.

Keith began his journey through the stroke care system of the time, into the depths of depression, leaving the business he planned his life around  and to the life he lives today helping stroke survivors in Central Oregon and around the world live their best lives. He shares his journey in today's episode.

If you don't see the audio player below, visit http://Strokecast.com/MSN/Keith

 

Click here for a machine-generated transcript

Who is Keith Taylor?

Keith Taylor runs Strength After Stroke

Keith Taylor is a deeply passionate, and dedicated leader in the stroke community. He is dedicated to helping stroke survivors regain their own power and strength to live a full and productive life. While owning and being the sales manager of a large manufacturing business in Oregon, he had a stroke at the age of 48. After looking for, and not finding, anyone to help with the depression and lack of confidence after his stroke, he decided to create that for other stroke survivors.

He is President of the Board of Directors with Stroke Awareness Oregon and is the owner of Strength after Stroke; a company dedicated to providing resources for stroke survivors to re-ignite their desires and regain their confidence.

What is HHT?

HHT stands for Hereditary hemorrhagic telangiectasia. That tells most of us…absolutely nothing.

The condition impacts the way the blood vessels in our body connect.

When the circulatory system works properly, blood flows from the heart under high pressure through the arteries to deliver oxygen and nutrients to the organs throughout the body. One big artery (the aorta) comes off the heart and splits into smaller and smaller arteries that carry blood to the kidneys, the toes, the brain, and every other part. The arteries are built to withstand the blood pressure.

Veins take blood from the organs and bring it back to the heart. Along the way, the deliver carbon dioxide to the lungs and waste material to the kidneys, liver, and other disposal sites. The blood is no longer under such high pressure at this point.

In between, there are capillaries. These are the tiny, thin blood vessels that allow oxygen and nutrients to pass from the blood to the organs and for carbon dioxide to pass back. Arteries branch smaller and smaller and thinner and thinner to become this huge network of capillaries, which the consolidate and get bigger and bigger until they become veins. Meanwhile, that branching down and consolidating up reduces the pressure on the blood in the system

In a patient with HHT, those capillaries don't always form where they are supposed to. Instead, the arteries will connect directly to the veins. These malformations are weak spots since the veins may not be able to handle the pressure of the blood coming into them. These AVMs, or arterial-venous malformations can then rupture or leak resulting in a hemorrhagic stroke.

You can learn more about HHT at the CDC's website here: https://www.cdc.gov/ncbddd/hht/index.html#:~:text=HHT%20is%20a%20disorder%20in,present%20between%20arteries%20and%20veins.

HHT is not the only cause of AVMs but it is an important one.

Nosebleeds

Nosebleeds are an important signal that something may be wrong. Frequent or regular nosebleeds are something to discuss with your doctor.

Nosebleeds are a common indicator of HHT. Someone who has HHT will need to keep on top of their monitoring to reduce the chances of a dangerous stroke or other conditions. HHT by itself doesn't have many visible symptoms so nosebleeds can be a good flag.

In my case, it was nosebleeds that revealed my high blood pressure, which remains one of the top causes of stroke. The problem, of course, with high blood pressure is that it doesn't hurt. Unless you're checking it, you won't know you have it. Nosebleeds, however, are one powerful indicator.

If you or someone you care about has frequent nosebleeds, discuss it with your doctor. There can be lots of different causes, but often the nosebleed is the least severe consequence of that cause.

Depression Lies

I talk about depression a lot on the show because it is a big deal and stroke has been shown to cause depression. Depression can be a deadly disease.

It can also tell us not to get out of bed. Or to skip our exercises. Or to question if we should even be here. Or try to convince us we are a burden to the people who love us.

Depression interferes with our recovery, our energy, our relationships, and our view of the future.

But always remember the biggest fact about depression: Depression lies. All the time.

I first encountered this concept while reading a blog post from writer, actor, and professional geek Wil Wheaton. You can see that post at http://Strokecast.com/DepressionLies

When depression says we shouldn’t get out of bed or off the couch, depression lies.

When depression tells us our friends and families wish we weren't there, depression lies.

When depression tells us to skip therapy because it doesn't matter, depression lies.

Don't listen to the liar that is depression. Help is available. Your doctor therapist will be happy to point you in the right direction.

Hack of the Week

When you forget a name or word, channel your inner Elsa, and let it go. Just relax. It's okay to struggle with names and words. People you deal with will be okay with it. The more you stress about it, the harder it will be to remember and the more likely you are to struggle with other words, too.

Often we worry about what strangers will think about us when we are out and about, but the thing is they don't really care. Everyone we see is caught up in their own fear that everyone is judging them that they don't have the attention or energy to actually judge others.

If you think someone does give you a dirty look or something like that, remind yourself that their probably thinking about that cringey thing they said at their 8th grade dance. Somehow it just smacks them at random from the depths of their memory.

But the key is that's it's not about you. So relax.

And let it go.

Links

Where do we go from here?

• Check out Keith's work at http://StrengthAfterStroke.org
• Share this episode with someone you know by giving them the link http://Strokecast.com/Keith
• Subscribe to the free Strokecast newsletter at http://Strokecast.com/News
• Don't get best…get better.

Julie Kuch had her first stroke in 2009 when she was 30. No one believed her at the time, and she had to convince a neurologist to order an MRI before the medical system began to take her seriously.

And once they did take her seriously, the system still didn't offer Julie rehab or even education about how to live life as a stroke survivor.

Several years later, Julie had a do-over -- her second stroke. Oh, and she through in a TBI in between.

Between her strokes, Julie created the services she wished she had for her own stroke. She became a life coach for brain injury survivors.

To learn just what a life coach does, how their services help, and how Julie built this life, listen to this episode.

If you don't see the audio player below, visit http://Strokecast.com/Julie to listen to the conversation.

 

Click here for a machine-generated transcript

Who is Julie Kuch?

Julie is a concussion and stroke survivor. She is a Life Coach for people who have had a brain injury. She has helped 100’s of people find joy and purpose in life again.

Julie has survived to strokes and a TBI. Her second stroke was in January 2022. She is currently recovering (very well) from this, her third brain injury. The experience has Julie feeling more passionate than ever that part of her mission in this life is to help as many people as possible recover and feel better than before their brain injury.

Julie is grateful for her brain injuries and the valuable lessons they have given her.

Julie wants everyone that has experienced a TBI to feel the same, and she know they can. Julie says, "So much of the suffering we go through recovering from brain injuries is not necessary. I teach my clients how to transform from feeling resentful, frustrated, angry, shameful and depressed about the state of their life to feeling accepting, loving, and at peace about themselves and their capacity after a brain injury."

Julie certified as a Life Coach through The Life Coach School.

A Go Getter Gets Depression

Depression is a topic we don't talk about often enough. It's a common stroke deficit, like hemiparesis and aphasia. It interferes with recovery and exercise routines.

And it’s not just feeling sad or mourning the end of your previous life. It's a genuine problem that burns energy and can make it even harder to get out of bed and do PT. Or do the basics of taking care of ourselves.

Last year, I talked with Dr. Laura Stein from Mount Sanai in New York. She talked about new research showing that stroke itself causes major depression, and not just the impacts of stroke.

In 2009, no one told Julie she might encounter depression. We also had less overall public awareness about depression. And when it did hit Julie, she was not prepared to deal with it. She had to deal with her own limiting beliefs about antidepressant medication and about people with depression.

Julie talks about the shame and embarrassment she had around her treatment. By 2022, she was better prepared to deal with it.

Depression, like stroke, can happen to anyone. It can be a deadly condition. And like any other stroke deficit, it's nothing to be ashamed of.

We can know that, but that doesn't guarantee we'll believe that.

Why drive during a stroke?

Julie had her stroke while she was driving to the doctor's office. But she didn't pull over and call an ambulance.

Jo Ann Glim had her stroke in a deli while trying to fix an office sandwich crisis.

Misha Montana drove back to Reno while having a stroke.

James Horton drove home while having a stroke,

Driving while experiencing a stroke is a terrible idea. It's dangerous. It's difficult.

The problem is that we rely on our brains to evaluate every situation of every minute of every day. In a stroke, though, the brain is under attack. Millions of brain cells are dying every minute. Various parts are scrambling in panic mode to figure out what is happening, what no longer works, and what to do next.

The part that should tell us what common sense is has become the part that is broken.

So, what can we do?

We talk about neuroplasticity as how we recover after stroke. The core principle is, "Cells that fire together, wire together." 

It's not just recovery, though. Neuroplasticity governs how we learn. We say things like "Practice makes perfect" because doing something repeatedly is often how we learn it. Practice IS the firing together of neuroplasticity. The more we repeat a thing, the more resilient the connections in our brains become. The bigger they become. The more permanent they become.

If you grew up in the US and I say, "I pledge allegiance…" you probably immediately want to say, "to the flag."

If you grew up Catholic and I say, "In the name of the father," you probably felt the urge to touch your forehead.

These are patterns we developed over years of repetition.

Here's how this impacts driving. By repeating BE FAST early and often, we internalize not only the most common symptoms of stroke, but also the action. T = Time to call an ambulance.

B – a sudden loss of or change in balance

E – a sudden change in or loss of eyesight or vision

F – single side face droop

A – in ability to hold both arms up

S – loss of or change in speech, vocabulary, or ability to process language

T – Any of this means it is time to call an ambulance

BE FAST = Balance, Eyes, Face, Arms, Speech, Time to call an ambulance.

Repeat it until "Time to call an ambulance" is as ingrained as the sign of the cross or the pledge of allegiance. In a crisis, that may then be the course of action the dying brain grabs on to.

Helmets Save Lives

Julie told the story of her concussion during the conversation. This is a picture of the helmet she was wearing at the time.

Yes, she still suffered a traumatic brain injury in the accident, but the helmet took the brunt of it. When you look at the dent in that image, it might not look too dramatic, but if you take another look and then imagine what that would look like on someone's head.

Now that's terrifying.

What is a Life coach?

Julie is a Life Coach for brain injury survivors. But what does that mean?

As Julie describes it, she helps live their best life. In some respects, it's similar to what a mental health professional does, but to a lesser degree.

A life coach helps a client develop practical skills for life within the context of the coach's expertise.

A big part of Julies work is helping folks understand the difference between facts and thoughts. Often, we assume that our thoughts are facts, and that causes problems. Saying it's 73 degrees is a fact. Saying it's too warm to do PT is an opinion or a thought. When we act on thoughts like that, we can limit our recovery.

Many of us have limiting beliefs about our abilities, relationships, money, and more. Those limiting beliefs are things that we have convinced ourselves are facts when in reality they are not. And yet they have become part of the way our brain interprets the world due to neuro plasticity.

A life coach like Julie helps clients unpack those limiting beliefs and jettison the ones that don't work. Freeing yourself from your limiting beliefs allows you to achieve more.

While a life coach is not a replacement for a psychologist, they can still help people live better lives.

Hack of the Week

There are three tools that helped Julie with the mindset of recovery that she uses with her clients,

First, mourn the life that could have been.

After a brain injury, life will be different. We are different. Some disabilities may be short term while others are long term. It's okay to be sad and disappointed. Getting stuck in sadness and disappointment won't undo the injury, though. It will only delay your entry in a new and possibly amazing life.

Taking time to mourn the life that could have been can help you move on to the life yet to be.

Second, receive the gift of rest.

Rest and sleep are important, yet many of us flee from them (myself included too many times). That's where much of the work of healing happens though. A brain focused on just getting to the next big thing isn't taking the time it needs to prepare for the next big thing. Take the time to rest and recover.

Third, manage your thoughts.

The key principle behind Julie's coaching is that thoughts and opinions direct our actions and beliefs. We think they are immutable, but they are not. We can change them. We can decide which ones to dwell on.

The core idea of neuroplasticity is that "nerves that fire together, wire together." PT, OT, and Speech Therapy are governed by this theory. It's why we have to do thousands of repetitions to rediscover our limbs and build new pathways in our brains.

And it's why dwelling and revisiting unhelpful thoughts is not helpful. The more often we think something or repeat a belief, the more the nerves will wire that thought or belief, giving the brain a shortcut to that thought or belief.

Make sure you leverage the power of neuroplasticity to bring good things into your life.

Better year for Geek Movies: 1982 or 1989?

I was just on the Caffeinated Comics Podcast where we discussed this question along with the trends that transformed movies through the 80s. From Bladerunner to Batman, and Tron to the Little Mermaid, a lot of amazing movies came out in those years.

You can hear us discuss it on the podcast here: https://radiomisfits.com/cc286/

Or you can listen and watch on YouTube right here:

https://youtu.be/b4gY3KD17i4

Links

Where do we go from here?

• To learn more about Julie's coaching programs visit http://JulieKuchCoaching.com. Follow Julie on Instagram to stay on top of her recovery and see her videos.
• Share this episode with someone you know by giving them the link http://Strokecast.com/Julie
• Subscribe to the Strokecast newsletter at http://Strokecast.com/news
• Don't get best…get better

What is stress and how does it impact stroke recovery? In this episode, I talk with Speech Language Pathologist, Wellness coach, and endocrinology expert Michelle rusk about the nature of stress and the role of Cortisol in our bodies.

Modern life is stressful enough without contending with stroke and recovery. Add more mundane and major sources of stress to our lives on a daily basis drives out bodies to a continuous state of Fight, Flight, or Freeze. Overtime, that causes more health problems, which introduces more stress to the system

Breaking the cycle of stress requires that we understand more about it and  just how it impacts our bodies.

If you don't see the audio player below, visit http://Strokecast.com/Stress to listen to the conversation

 

Click here for a machine-generated transcript

Who is Michelle Rusk?

Michelle Rusk is a North Carolina based Speech Language Pathologist, licensed to treat patients in North Carolina and Virginia. She is also a Wellness Coach and Dutch Test practitioner working with clients from all over.

She owns and operates Coastal Speech Therapy and Wellness. Coastal Speech Therapy & Wellness is a private practice offering virtual therapy throughout Virginia and North Carolina for those with brain injury. She serves patients as a therapist, certified brain and hormone health coach, and DUTCH test practitioner.

What is Cortisol?

Cortisol is one of the body's stress hormones. When an emergency arises, the body dumps cortisol into the system to increase blood pressure, blood sugar, and other mechanisms that give us extra resources to run away or fight a threat.

Humans have been around for about 100,000 years. Up until the last hundred years or so, that system worked fine. Modern life though, for all the wonderful and amazing things it offers, introduces a lot of low level stress that builds and builds.

In response, our bodies push more cortisol into the system. We end up living with a higher level of cortisol than we were ever meant to. That contributes to a whole array of health issues.

As Michelle explains, the way to address that is with lifestyle changes,

What is the Dutch test?

Michelle uses the Dutch test with her wellness patients. It's a urine test that assesses the levels of hormones in a person's system, with cortisol being the big one.

The company actually offers a variety of tests that work in different ways to assess hormone levels. You collect the samples at home, send them off to the lab, and then get the detailed results.

You can learn a lot more about the tests and see sample reports at http://DutchTest.com.

Once you get results, you should discuss them with your doctor or medical team. Actually, it's probably a good idea to talk with your medical team first because these tests can cost several hundred dollars and generally won't be covered by health insurance.

Social Wellness Groups

Michelle's comments on social wellness groups are also interesting.

An online or in person stroke support group is a powerful thing. There's a lot of value in connecting with other survivors. It's not just about getting tips for living with stroke or learning about local resources, though.

It's about the community.

Often we can go through our days isolated. Most of the people we talk to have not experienced a stroke. They can't understand our experience.

In a support group, though, we're around people who do "get it." And that's a big deal.

A social wellness group takes that to another level. There are the benefits of the community, sure, but there's the added benefit of the instructor led skill development. Michelle is able to coach conversational norms, among other things, to help reduce the sense of isolation out in the real world.

Michelle on Discharge Day

Michelle mentioned how amazing discharge day is, even if it is tinged with sadness as the relationship changes. Here's the post she mentioned: https://www.instagram.com/p/CcQuULsOABh/

Mimi Hayes Kick Starter

Mimi Hays survived a stroke shortly into her first job as a teacher in her twenties. She had a ridiculous amount of trouble getting treatment which still makes me angry. So naturally, she turned to a career in comedy, and she's a delight. We talked all about her adventures here: http://Strokecast.com//mimi

Mimi has performed all sorts of places, including the massive Edinburgh Fringe Festival in Scotland. Now she's trying to get back to Fringe and has launched a KickStarter to do that. It's open until July 9, 2022.

Check it out here, and follow Mimi on social for fabulous minutes throughout the day.

Hacks of the Week

Michelle had three different hacks to share with us this week

First, don't isolate yourself. You don't have to do recovery alone. From the therapists to the doctors to the other patients to family and friends, there are people who want to be there on the journey with you. Let them, and invite them.

I always say the stroke club is full of cool kids. But the dues really suck!

Second, find therapy in everyday life. Whether that's trying to use an affected hand to turn on a light or finding reason to speak just a few more words, the therapy that really matters isn't taking place on a mat table (though that helps). It's taking place when you do or attempt to do the tasks in life that have the potential to bring you joy.

Third, don't guess. Dutch Test. To understand what is going on with your hormones, start by knowing what those levels are. Then you and your medical team can discuss the lifestyle changes that can be most helpful.

Links

Where do we go from here?

• To learn more about Michelle, her work, or the Dutch Test, visit https://www.coastalstw.com/
• Do you know someone with stress in their life? Or who might otherwise enjoy this episode? Tell them to listen at http://Strokecast.com/Stress
• Subscribe to the free Strokecast newsletter at http://Strokecast.com/news
• Don't get best…get better.

Often we tend to think of "patients" and "providers." While sometime we may accuse medical teams of forgetting that their patients are whole human beings and not just a wrist band and chart in a hospital bed, it works the other way, too. We sometimes forget that our doctors are more than white coats adjusting out medications and asking who the president is -- again.

But doctors are, in fact, human. And they can create art. And they can have strokes.

Dr. Bevan Choate, MD, was a surgeon and urologist just enter the heart (or kidney) of his career. One morning, everything changed. He shares his story of the past 18 month in this episode.

(If you don't see the audio player below, visit http://Strokecast.com/Bevan to listen.)

 

Click here for a machine-generated transcript

Who is Dr. Bevan Choate, MD?

Bevan was bornin 1985 in San Angelo, TX.  What do you do when you are born in San Angelo, TX? You grow up on a horse. As Bevan says:

"I grew up in a cattle ranching family.  Cowboying since I could ride a horse but perhaps due to the Waylon and Willie song, they didn’t want me to grow up to be a cowboy. So, I was given all the odd and less glamorous jobs.

https://www.youtube.com/watch?v=RePtDvh4Yq4&ab_channel=kdn3249

I realized about midway through undergrad that I wanted to be a doctor.  I was always a science geek at heart, and figured medicine to be a pure and noble application of science.

I excelled in medical school and completed my five-year Urology residency in Albuquerque at the University of New Mexico Hospital.  It was the roughest five years of my entire life.  Being a sleepless subordinate for almost two thousand days is a tough pill to swallow.  Nonetheless, I persevered and began practicing Urology in Albuquerque.  It was my calling.  I love it.  I love my patients and some of them even love me.  I did quite a bit of oncologic surgery and got good at robotic surgery using the Da Vinci robot. "

Things changed for Bevan on December 3, 2020. That's when a left vertebral artery dissection threw a clot that lodged in the left part of his cerebellar and proceeded to kill millions of valuable brain cells.

The dissection has no "attributable etiology." That's how doctors write a shoulder shrug emoji. No one knows why it happened. Bevan just got lucky.

The surgeons who were not Bevan got to work. His procedures included a ventricular shunt, a craniectomy, and a left cerebellar strokectomy (surgical excision of infarcted brain tissue post-stroke with preservation of skull integrity, distinguishing it from decompressive hemicraniectomy).

As Bevan says, "Yep, I have about 80-85% of a brain.  Not playing with a full deck"

Following this adventure, Bevan contended with:

• Acute Deficits
  • Double vision
  • Visual impairment
  • Vertigo
  • Left-sided ataxia
  • Loss of left fine motor function
  • Inability to walk or balance
• Chronic Deficits
  • Loss of left fine motor function
  • Balance issues
  • Right sided stroke neuropathy
  • Left-sided ataxia

Since then, he's accomplished some impressive things, not the least of which are living and walking. He's also become a published author and a professional artist.

He's also still practicing medicine and seeing patients. The laser may need to wait a little while though.

It's been quite the year and a half.

Typing around a Stroke

People approach their stroke recovery in different ways. Bevan and Michael Schutt both launched their writing projects to learn to type with their affected side again.

My approach to typing was the opposite. Instead of forcing my left hand to the keyboard, I wanted to get faster more quickly. I taught myself to type more quickly with one hand. I'm currently at about 34 wpm (average for two-handed typists is about 44 wpm).

Has that slowed my recovery? Maybe. Recovery is a delicate balance of accepting a disability and fighting that disability. Too far in one direction is not great for living the best life possible for many folks.

Of course, every stroke is different. I can admire the approach others took without feeling mine was wrong. Especially since my fingers are still (slowly) coming back.

And if they don't, that's fine, too.

Why write?

Bevan started writing his book to collect anecdotes. It's so easy to forget the details of an event with time, especially if we don't realize at the moment how important they might be. The very acting of writing or typing them out gives them a stronger hold in our memory. Every time we read them again, we can reinforce that hold they have. We can extract more incite from them.

You don't have to write a book, though. When I was in the hospital, I tried to post at least one anecdote from the day every day to Facebook. Part of that was to keep people informed of my status. Part was my compulsion to entertain folks and make sure they got value from check in on me (that's something I should probably unpack at some point). Part of it was to chronicle what I was going through for future reference.

In Bevan's case, doing that led to "The Stroke Artist."* It's his memoir of his stroke experience as a doctor who returns to the art he enjoyed, then made it a second profession. The varied paths stroke take us on never cease to amaze.

You can find Bevan's book on Amazon here. *

So write down your stories. Maybe it's just a collection of random anecdotes and paragraphs without a plan. Maybe it's all jumbled in time. If you can physically write, record video or audio. Or take pictures. Or tell your stories to someone else.

The stories we tell connect us with the world across the ages, going both backwards and forwards in time.

As the 11th Doctor said, "We're all stories in the end."

Bevan's Art

Bevan started creating art just to create art. That's probably the best reason to do it.

When I started blogging in 2006, it was because I realized I hadn't written anything that wasn't an email or a PowerPoint slide in years and I needed to write for the sake of writing. Of course, that set me on the path to where I am today, but that's not really the point I'm trying to make here.

Bevan returned to art after stroke and before long, he was selling art online. You can browse his work and even make a purchase at his website. You can find that here.

https://artrepreneur.com/showroom/q3GhqiFsYA2jL75iy

The relationship between stroke and art is fascinating. It gets into the physical changes in the brain brought on by stroke, the lifestyle changes we are forced to make, and the shift in our own priorities and world view after stroke. Bevan and I talked about some of that in our conversation. If you found that discussion interesting, I'd also encourage you to listen to my conversation with Seattle artist and survivor Seth Ian Scheer from 2019.

Stroke Strides Support Group

The Stroke Strides support group is a virtual group, based at Multicare Good Samaritan Hospital in Western Washington. They are looking for survivors who would like to speak to their group individually or as part of a panel. If you are looking for channels to share your story, this is a nice one. The last time I did it the group was fairly small, which means it's great if you want to get started speaking to other groups.

They are starting up their next series of talks in July 2022, and I'll be part of that. If you'd like to join as well, reach out to Kristin Olson ([email protected]) for more details.

Hack of the Week

Big goals can be inspiring, but they can also be hard to achieve. To really kick start your recovery, set small, simple goals. Work towards small improvements. Those small goals and habits over time add up to big things. That's how you ultimately achieve success.

Bevan's hack align nicely with my regular mantra: Don't get best…get better.

Links

Where do we go from here?

• Pick up a new painting for your wall here, and check out Bevan's book, The Stroke Artist, here.
• Follow Bevan on Instagram @BevanChoate.
• Tell someone you know about this episode and give them the link http://Strokecast.com/Bevan so they can enjoy it, too.
• Subscribe to the free Strokecast email newsletter at http://Strokecast.com/News.
• Don't get best…get better.