2022-08-15

Dark Moon Shine: Stroke Dialogs from Jeri and her Dad



Jeri Goldstein built an online business coaching musicians who want to book more gigs. After all, success as a musician requires working in the music business. Many aspiring stars are hugely talented with the music side, but not so much the business side. Jeri helps them.

Then the phone call came, and Jeri's life changed. It a good thing her business was highly portable

Her father survived a massive stroke, so Jeri did what she had to do. She packed up the car and the dog and headed down to Florida to help her family navigate the post stroke world and learn to adapt to her father's aphasia.

Jeri chronicled her experience with her dad in her book Stroke Dialogs: Conversations with Dad*. She sent me a copy, and we talked about her experience in this conversation. And she explains what "Dark Moon Shine" is all about.

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

 

Who is Jeri Goldstein?

Jeri Goldstein sits out side, smiling with her head resting on her hand.

Jeri Goldstein is a career development coach for professional performing artists and entertainment industry professionals. She coaches musicians performing in all genres of music from traditional acoustic to jazz, classical to world music, children’s music to blues and rock and hip-hop to rap. Jeri has also worked with authors, actors, storytellers, visual artists, and other small business owners. Her specialty is to help her clients discover their unique niche market and to create strategic business and marketing plans.

For twenty years, she was a booking agent and artist manager for touring artists on the acoustic music circuit. She worked with musicians, actors, and dancers.

A picture of the cover of the book Stroke Dialogs: Conversations with Dad

She is a music and book publisher. In addition to Stroke Dialogues*, Jeri has written two other books. Her award-winning book, How To Be Your Own Booking Agent THE Musician’s & Performing Artists Guide To Successful Touring*, is used by musicians world-wide and has been a textbook used in music business courses throughout the U.S. and Canada. It reached #1 on Amazon in the Music Business category and has sold over 60,000 copies world-wide. The Tiny Guide to Huge Success* is a collection of 100 blog posts taken from thirteen years of over 650 entries designed to help performing artists build and maintain a successful touring career.

Jeri presents in-person seminars and keynote lectures at universities, conferences and for businesses and organizations in the music and entertainment industries. Her online course Booking & Touring Success Strategies & Secrets has been taken by hundreds of professional touring artists.

In 2020 she launched her first podcast, Get Great Gigs which featured interviews with artists and other entertainment industry professionals that discussed inspiring career strategies before and during the COVID-19 pandemic.

Jeri began her internet-based business in 2008. Her use of internet marketing strategies and social media provided the perfect platform for her to work from anywhere. In November 2012, she set up shop in Florida to be with her dad during his recovery from a stroke. After selling her home in Charlottesville, VA, she relocated to Delray Beach, FL permanently in August 2015 and continues to live there today.

Homunculus

The homunculus is a representation of the brain and various parts of the body. The more you use a part of the body, the more neurons it takes up in the brain. For example, the hands and tongue take up more space in the than the elbow and pinkie toe.

The more time and energy you dedicate to something, the more space in your brain is dedicated to that task. For example, a homunculus of my brain would likely show a much larger segment dedicated to speaking than to throwing a baseball.

A drawing of the homunculus of the human brain

One way I think about how this applies to survivors (and I may be stretching the homunculus analogy) is that a skill from the prestroke days that a survivor was an expert at may come back before a skill one had limited experience with simply because despite the damage there were simply more nerves dedicated to it.

In the case of Jeri's dad, we have someone who lived a life of numbers. When he lost his words and names with aphasia, he still had numbers.

As you continue to work on a skill post stroke, a larger portion of the brain will be dedicated to it. More nerves, dendrites, and synapses will become involved. This is neuroplasticity at work.

Negotiation

Jeri talked a little about negotiation in this conversation. It's an important skill. It's also important to recognize that negotiation isn't just about resolving an argument. It's a process of working with others to meet everyone's needs as much as possible.

When folks are in a negotiation, it's helpful to articulate and understand priorities and preferences for all participants. And that involves knowing what you care about and why you care about it.

Understanding that "why" is the thing that will keep you open to new and even better solutions.

Self-Publishing and Know your Audience

Jeri self-published her book because she knew her audience. She also knew the process and had done it before when it was a lot harder. The key, though, is she knew the audience.

When selling a book in a hyper-niche space, an independent writer or small, specialized publishing house can have a lot of success.

I like this approach a lot. Often authors self-publish for control because traditional publishers aren't interested. There are plenty of other reasons, too, as previous guests have described.

From a traditional marketing and sales perspective, Jeri started with her audience -- her customers. She knows who will buy her book, and then worked backwards from there, asking, "What is the best way to get this book in their hands?" She concluded that a major publisher would not be as effective with their focus on big retailers.

As an entrepreneur who has sales and marketing skills, she knew she could more effectively reach the niche audience of the stroke world. She opted to self-publish.

Cluster Brainstorming

Cluster brainstorming is a way to identify things that you find important and to drill down on those ideas to get more clarity.

It starts with an idea and then you define that idea in greater detail. And then you go into those definitions and try to understand the.

For example, maybe a goal is to recover from stroke. What does that mean? My successful recovery may look very different from that of a more athletic individual who lived for sports, hiking, and lifting heavy things.

Cluster brainstorming helps you unpack that. You start by writing a word or goal that matters to you. Then you start writing down words associated with that first one. Then you take the most interesting of the words you wrote down and do the same things for those.

At the end of the process, you have a whole bunch of thoughts and ideas on the page, and these are the things that matter to you. These can define the "Why" of your recovery. You can see how smaller or more tactical items. It's easier to do an exercise or activity when it's clear how that exercise or activity fits into the broader picture of your life.

The brainstorming activity can help you identify your priorities, but it's all just a pretty paper until you put it into action and turn these ideas and concepts in the SMART goals that can drive your recovery. You can learn more about SMART goals in episode 86 on this page.

The Tongue Twister

When you're positive and patient,

When you are persistent in practice,

Full recovery is possible

and anything is possible.

That simple tongue twister is one of the tools Jeri worked out for her dad. He needed practice pronouncing his Ps and this did the trick. It also had the extra benefit of providing a positive perspective on his present predicament.

Repeating phrases like this also help you to believe it. It's the repetition that drives neuroplasticity.

It's also a good phrase o use to practice your mic technique for a podcast to keep your plosives under control

Win of the Week

I walked more than 6000 steps in one day during a weekend getaway with my GF. It's quite a bit considering my pace, brace, and cane.

You hear a lot about my wins and my guests' wins on the show. Now, I want to hear about yours.

I'm starting a new feature called the win of the week, and I want to know what went well for you.

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 Bill@strokecast.com.

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 choose from the wins and share my favorites in future episodes so we can all celebrate with you.

Hack of the Week

Jeri cited 3 tips for helping and empowering her dad in his recovery.

First, she placed Labels around the house on objects to help her dad recognize and retain the names. This is similar to the approach that Anna Teal took with her husband is making lists of seasonal phrases to stick on the refrigerator. The reminders and repetition can help rebuild those neural pathways.

Jeri's dad also liked games and puzzles. Playing Bridge with his friends was a highlight of his day before stroke and relearning it after stroke was a priority. It was also an important way to help him interact with friends beyond his immediate family.

Working on puzzles is great practice after stroke. It works on skills around visual processing, pattern recognition, logical and process thinking, and, of course, manual dexterity. Can assembling puzzles solve the missing piece of recovery?

The most important element, though, was letting her dad drive his recovery. Identifying his priorities and his concerns and making them the focus of his recovery efforts kept him involved in his recovery. The more interested we are in the activities of therapy and the goals of therapy, the more likely we are to do the activities of therapy.

Plus, making sure the survivor has agency in this process matters. Because therapy is not something done to a survivor. It's something done by a survivor.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2022-07-27

Stroke from a Genetic Condition Ended this Entrepreneur's Dream & Drove a New One



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

 

Who is Keith Taylor?

Keith Taylor wears a blazer and looks at the camera against a dark backgroundKeith 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?


Here is the latest episode of The Strokecast

2022-07-12

Life Coach Survived 2 Strokes and a TBI



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.

 

Who is Julie Kuch?

Julie Kuch headshot where she looks at the camera wearing a denim jacket in the kitchen

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.

Stroke symptom graphic highlighting BE FAST (Sudden change in Balance, Eyesight, Facial symmetry, Arm control or speech/language means it is time to call and ambulance),

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.

A picture of Julie Kuch's snowboard hellmet with a significant dent and major scratch from a collision with another snowboarder. The crash gave Julie a significant concussion, but the helmet saved her life.

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?


Here is the latest episode of The Strokecast

2022-06-30

Stress, Stroke, and Hormones



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

 

Who is Michelle Rusk?

Michelle Rusk smiles at the camera in this selfie taken in a kitchen.

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/

A screen shot of an Instagram post celebrating patient discharge. The IG caption reads "The best and saddest day EVER. . On the difficult days, we pause and look back at how far they’ve come before we move forward again. . Then they’re ready and we GO at those challenges head on. . Until we make it to the end of our time together. They no longer need me. 🥲"

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?


Here is the latest episode of The Strokecast

2022-06-20

The Stroke Artist: A Tale of Survival, Painting, and Urology



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.)

 

Who is Dr. Bevan Choate, MD?

A gray scale headshot of Dr. Bevan Choate from the neck up. His face fills the frame.

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.

n abstract palette knife painting by Stroke Artist Dr Bevan Choate named Studlagilhttps://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 (ktolson@multicare.org) 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?


Here is the latest episode of The Strokecast

2022-06-11

5th Strokeaversary



June 3, 2022, was my fifth Strokeaversary.

It's an important milestone. My risk for a second stroke is now statistically lower, but that not why this matters. It's not about celebrating experiencing a stroke. It celebrating survival and recovery. It's about coming back from a battle with my own blood vessels both damaged and enriched.

It's complicated. But that blood clot on the morning of June 3, 2017, changed the direction of my life for good.

In this solo episode I share some more thoughts and feelings about my experience.

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

 

Don't get best…get better

I end every episode and nearly every blog post with this line, but what does it mean?

It means that constantly trying to be the best is a flawed path. To be the best at something means that everyone else has to be worse. It is an approach that actively discourages people from working together to help one another. The experiences of these past few years show us just how much we do need to work together and support one another.

Instead of focusing on being the best, focusing on just being a tiny bit better every day. Make the effort to consistently improve just a tiny bit. Help others to improve just a tiny bit, too.

Those little bits of improvement -- of growth -- add up over the days, weeks, months, and years. It can take you so much further that just focusing on the win/lose yes/so succeed/fail dichotomy that a focus on being the best promotes.

Where is my recovery today?

My recovery is ongoing. It didn't stop at the 6 month mark. Or the 12 month mark. Or the 24 month mark. Recovery doesn't stop on some artificial timeline.

My fingers are still getting better. I'd say I have about 15% of the use of my left hand back at this point. I can use it for practical stuff. Not in the same way I did before the stroke of course, but it will get there given enough time and work.

Right now my legs are tired because of an unplanned Costco shopping excursion where they were out of electric mobility carts. And since it was unplanned, I didn't wear my AFO so it was a lot more work. But I did it. And I wouldn't have been able to 3 years ago.

I also recently got my latest thrice yearly Dysport injection (a BOTOX alternative) . This medication treats the tone and spasticity in my left arm. My doctor was able to use less this time and treat fewer muscles. Again, it's another example of progress.

It's not all perfect, of course. I'm still living with fatigue, exacerbated by my recent COVID experience. So that's fun. And it's part of the reason I'm getting this episode out a week later than I had planned.  Adapting is what we do, though.

Going forward

I still have lots of projects to pursue as I go forward. I'm working on a book right now. Actually, I've been working on it for a year and a half and had to start over somewhere in the middle. I look forward to sharing more details on that later in the year.

I've also been doing more talks with survivor groups, students, and more to share my story and to help others share their stories. I plan to do more of that in the coming year. If you're looking for a speaker for your support group, reach out and let me know.

Storytelling

That brings me to the importance of storytelling. It's a theme that comes up again and again in my work. Professionally, I help journalists use Microsoft tools to tell stories more efficiently. I tell stories as part of that training process. Strokecast itself is built around empowering survivors and professionals tell their stories to educate and encourage the entire stroke community. Those stories help build connections across the silos of expertise and experience we find ourselves living in.

In sales and marketing, we say, "Facts tell; stories sell." Talking about stroke isn’t just about drilling into the biological details (though that is important). It's about telling the stories of real people or processes to connect those facts the lived experience we have. It's about helping patients, doctors, researchers, therapists, and commercial partners all experience one another as real people instead of just a bullet point list of details.

People don't want to go to a lecture on facts. They do want to go hear someone's story. That's how people connect with material.

Our earliest cultural touchstones in Western Civilization are based around storytelling -- from the ancient greek mythology to the slightly less ancient Homeric tales to the Christian bible where Jesus instructs his followers not with just precepts, but with parables -- stories -- that make the point.

The Brothers Grimm didn't just make a list of rules for safety and moral codes. The collected, recorded, and refined the fairy tales to serve as warnings to children about the dangers of the world.

My story and your story are how we can talk about stroke with others. That we can explain what it is, what to do, how to spot it, and potentially, how to avoid it. And even more importantly, that stroke and brain injury doesn't need to be an end. It can be a change -- a new beginning to a new phase in life. We may lose somethings while we gain so many more.

Was stroke a blessing or a curse?

I ask this question of most of my guests because it's one I struggle with myself. Most of my guests say it was a blessing. I'm not so sure.

For my detailed thought process on this question, though, I encourage to you listen to the episode or check out the transcript.

How can you support me?

There are a few things you can do to support me and the Strokecast. These are all things that help to grow the platform so more people can experience that value that you experience. Growing the platform will be a big help to me.

First, tell people about the show or tell them about your favorite episodes. The single best way to get more people to listen to a podcast is word of mouth from trusted friends and colleagues. They can find it in their favorite app, or they can just go to http://Strokecast.com

Second, subscribe to the Strokecast newsletter so you get updates and news when I'm able to share them via email.

Third, follow me on Instagram where I am @Bills_Strokecast. I post a lot of quotes from previous episodes and a few personal updates.

Fourth, invite me to speak to your virtual or local stroke support group. My webcam is always ready. Or hire me to speak at your conference or professional event/meeting. Just email me at Bill@Strokecast.com

Hack of the Week

When it's time to shop for a new mobile phone, look for one with a screen size of 5.5" or smaller. They're getting tough to find.

If you have only one functioning hand a larger screen is much harder to use. You have to be able to hold it in your hand and reach all the important stuff on the screen with just your thumb. If you can’t reach something on the screen it's quite frustrating, and it increases the odds you'll drop your phone.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2022-05-31

Deb Shaw Champions the Challenges after 3 Strokes


Deb Shaw was at the top of her career, selling cybersecurity technical products to government customers for a silicon valley powerhouse. Things were going great. Then she had a stroke. And then she had another stroke. And then she had a third stroke, paired with a concussion.

Since then, she started a nonprofit with her husband and has produced more than 10 booklets for stroke survivors to help them navigate their new lives.

Recently, the American Heart Association named Deb their latest Survivor Hero.

Deb shares her journey in this conversation.

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

 

About Deb Shaw

A professional headshot of Deb Shaw. He wears an orange jacket against a dark backdrop and looks at the camera

Deb Shaw is an inspirational three-time ischemic stroke survivor and the Founder & President of a nonprofit who remains steadfastly upbeat, despite her ongoing difficulties. Deb channeled her energy into creating “Champion the Challenges,” a nonprofit organization that helps motivate stroke survivors to pursue her three P’s of a successful recovery: Patience, Positivity, and Practice. Be patient in everything, have a positive outlook, and practice your exercises every day.

Deb founded and launched ChampiontheChallenges.org, a rapidly growing 501c3 focused on helping stroke survivors reimagine their stroke rehabilitation journey.  The website is filled with inspirational content, therapy ideas, and success stories all designed to encourage.  Deb has written 11 Quick Read Booklets ™ that are geared to inspire and educate the stroke community. The booklets are available on-line as flipbooks, or in print editions, all compliments of Deb.

“Champion the Challenges” was started during Covid because she wanted to share the inspiration, motivation, technology, and helpful stroke ideas, all in one website. This is her way to give hope to many people needing to discover their inner strength.

3Ps

Deb's approach to recovery is based on the three Ps:

  1. Patience
  2. Positivity
  3. Practice

Patience with yourself is critical. While we are all trying to recover, it doesn't always happen as quickly as we would like. Sometimes we can't do things yet that we feel like we ought to be able to do. That's okay. It happens. Getting angry and frustrated with ourselves may be natural in the moment, but ultimately is not helpful. We need to be patient with our brains and our bodies to give them the space they need to heal and to relearn our lives.

Positivity helps us get through the day. Negative feelings are natural and okay in the moment, and long term they can become a problem. Living in and dwelling in the negative is not going to get us where we need to be. A positive attitude and approach to our tasks and lives may not guarantee success, but I have never heard of someone succeeding while dwelling in a cloud of negativity.

Practice is the other key element. A positive attitude may make recovery a possibility, but it's practice that can turn that possibility into actual success. Neuroplasticity is a powerful force in recovery, and building those new neural pathways requires thousands of repetitions of activities. It takes practice and then more practice.

2022 Stroke Hero Awards: Survivor Hero – Deb Shaw

https://youtu.be/T7n4qx1JR-g

Llamas and Alpacas

For my Girlfriend's birthday, we went to Topstall Farm to visit play with llamas and alpacas. It's a short 1.5-2 hour drive from Seattle.

The person who runs the farms limits groups to 6 people so we get a personal experience. She told us all about the critters and explained how they care for them.
 

Cathy feeds 3 alpacas,

A recently shorn dark brown alpaca with a furry heard stands in a field and looks at the camera

Cathy walks the llama Armando

Bill and Cathy stand on either side of Armando the llama

A close up view of the proud gray llama Lafayette.

Then we got up close and personal. We walked into the paddock and got to feed them by hand. One thing that amazed me was how soft the alpacas lips were as they took the pellets right from my palm. They were aggressive about getting to the food but gentle about taking it.

After we fed the alpacas, we took the llamas for a walk. It was 2 people per llama. Cathy and I got to take Armando on a half mile hike around the property.  Armando wasn't terribly interested in the walk, but he went along with it. Every 20 or 30 feet or so he would stop and bend down to start snacking on some grass, as though to convince us he hadn’t eaten in FOREVER. We weren't buying that however.

The walk itself was a challenge because it wasn't a paved path or smooth trail. The ground was uneven and muddy in places, as you would expect. I managed pretty well with my cane (I used the cheap one), but I certainly got my PT in for the day.

A recently shorn alpaca stands in a field. he has white fur and one eye is blue and white. The other is brown.

This is the alpaca I spent time feeding. His name is Woody. He's 14 years old and deaf since birth. His different color eyes are also a genetic quirk. Once we all wandered into the paddock with our bowls of food, Woody ignored everyone else and sauntered right up to me for his snack.

Isn't it a coincidence that the disabled llama found the disabled human and decided to make a friend? Maybe, but I like to think he sensed a connection.

If you want to get up close and personal with live, fluffy animals, and you happen to be in the Puget Sound region, head on over to Topstall Farm. Tell Armando, Woody, and (oh, yeah) their humans that I said, "Hi."

COVID-19

It took more than two years, but COVID-19 finally got me.

A picture of a Rapiid Antigen COVID-19 test that reads positive.

I was on a business trip in Hawaii. It was a successful trip, which was great. The day before I was supposed to fly home, I felt off, and not in a stroke-y way (you know what I mean). I took a rapid test. The instructions say to wait 15 minutes for a result. My test lit up brightly and boldly positive in less than 3 minutes. The next day, I visited a doctor's office for a PCR test to confirm. It confirmed.

That meant cancelling my flight and isolating in the hotel for another 5 days. I probably could have gotten on the plane without telling anyone, but intentionally exposing 150 people like that seemed like the wrong choice.

The CDC recommends 5 days of isolation. After that, if symptoms are mild, the CDC allows masked travel if necessary and recommends isolating as practical after that.

You may think, "Awesome! Five bonus days in Honolulu!"

Sounds great in theory, but,

I was still not feeling well

I couldn’t leave the hotel room

The beach and surf were tantalizingly close, but they just teased me from my city view room with a peek of the water.

A slight beach view between to hotels from the 18th floor

Housekeeping brought up a big table and put it in front of my door to signal that this was a quarantine room. They piled it high with towels, tooth brushes, and coffee packs so I would be all set to hunker down. I ordered all my food through Uber Eats. They would deliver to the front desk. The front desk would deliver to my blockading table. They would knock on the door and scurry away. I'd put on my mask, pop open the door and snatch my dinner.

A room service table filled with towels and supplies to last 5 days.

Then I'd go back to washing my underwear in the sink so I'd have clean clothes the next day.

After 5 days, I was well enough to head back to Seattle.

I'm still recovering. My voice is a little rough, as you may have heard in the opening and closing of this episode. I'm a little stuffed up. I still feel a little off, but for the most part I'm fine. I just need to get more sleep. My main concern at this point is not infecting Cathy so I'm masking up at home and sleeping on the couch.

This could have been so much worse. And you know why this more of an inconvenience and not a full on health crisis? Because I got my damn vaccines! They may not have completely stopped the infection, but they gave my body the training and tools it needed to fight off this infection.

I'm annoyed, but I'm not in a hospital on a ventilator. And I'm not knocked out. This is a big win during the pandemic.

Hack of the Week

Deb talked about 2 hacks this week.

There is a lot of value in thinking about other people. I don't mean to compare ourselves to other people; that path leads to despair. Instead, think of how you can help other people, even if that's just a kind word. Brightening someone else's day can easily brighten yours as well.

On the more concrete aspect of recovery, a towel can be a great tool to help with hamstring exercises.

The hamstrings are the muscles on the back of your thighs. When they contract, they bend your knee and lift your heel towards your butt.  That bending is important for walking, stair climbing, balance, and more. Using a towel wrapped around your ankle can help you exercise your hamstrings to help them come back online consistently. Deb describes this in our conversation.

I would add that this is a great process to discuss with your PT to make sure you know how to do this safely. The last thing you want is to fall and acquire another injury while rebuilding your life after stroke.

Links

Where do we go from here?


Here is the latest episode of The Strokecast