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

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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.

Here is the latest episode of The Strokecast

Life Coach Survived 2 Strokes and a TBI

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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

Here is the latest episode of The Strokecast