Tawnie, the Neuro Mermaid

How do you measure blood pressure at home?

Lots of stroke survivors joined the stroke club due to high blood pressure. I'm one of them.

The biggest challenge with high blood pressure is that it doesn't hurt. Most people will feel no symptoms unless something goes terribly wrong. Or they might learn they have the condition if they get an annual physical.

Because of the danger of high blood pressure directly, and because of the danger of other conditions that manifest as high blood pressure, it's important to check it regularly, and that doesn't mean you have to go to the doctor every week.

You can find home blood pressure meters all over the place -- from Amazon to Costco to the corner grocery store. But which one is best? And what do you need to know if you've already had a stroke?

This week, I'm joined by Carol Lucarelli of Omron Healthcare. Omron is a leading manufacturer of home blood pressure meters. In fact, one of their devices is sitting on the table next to me as I type this. It was that very device that gave me the 210 over 160 reading that kicked off my stroke story several years ago. More recently it read 134 over 77 -- not perfect, but still much better than the condition that collapsed my right middle cerebral artery.

One reason I wanted to talk with Carol was that I heard about Omron's Going for Zero mission. The other reason is that I like tech and gadgets, especially when they can save lives.

IMAGINE A HEALTHIER WORLD

We believe the next generation won’t be defined by age, but by a world without heart attacks or strokes. This is a world-changing mind-set we call Going for Zero™. We do our part through technology supporting personal fitness, heart health, healthy lungs and freedom from pain. You bring this commitment to life by understanding and sharing heart health with every step.

https://omronhealthcare.com/generation-zero/

Carol joins us to talk about how these devices work, how they compare to the doctor's office, and why we should trust devices from Omron from wrist devices to upper arm cuffs to smart watches.

If you don't see the audio player below, click here to listen to the conversation on the original site.

Who is Carol Lucarelli?

Carol Lucarelli is the Executive Director of Marketing and Ecommerce at OMRON Healthcare, the global leader in personal heart health and wellness technology.

Lucarelli is a seasoned marketing professional with over 25 years of experience in the consumer packaged goods space. During her time at OMRON, Lucarelli has led the marketing initiatives for numerous product innovations, including the launches of HeartGuide Complete as well as VitalSight, OMRON’s first remote patient monitoring service.

Wrist vs Arm

Home blood pressure monitors typically come in two types -- wrist or upper arm.

The wrist mounted devices are typically smaller. You simply put it on your wrist, secure it, press a button, and raise your hand to get it at the appropriate level.

The upper arm models will typically wrap around your bicep or upper arm. Some will have the guts of the device on the cuff; others will have a hose that goes to a device on your desk, table, or lap.

In the past, I assumed the upper arm would be the more reliable device because that's what many medical facilities use. Over the past few years, though, I've seen more medical teams using the wrist versions for convenience.

Carol also explained that whether it's wrist mounted or upper arm mounted, the devices are held to the exact same standard of accuracy. As long as a device is on the Validated Device List, you can assume the model is accurate.

Ask your doctor if they have a recommendation. There are all sorts of health reasons why one style might work better for someone than another style. Different deficits after stroke may impact the choice. While cognitive, language, sensory, and pain challenges can all have an impact, hemiparesis - or limb paralysis - is probably the bigger factor.

Once you choose your device, it's also a good idea to bring it with you the next time you go to the doctor. This way your doctor can double-check its accuracy against their own blood pressure equipment. While the Validated Device list ensures your model is generally accurate, this process ensures your particular meter is accurate.

Hemiparesis recommendations

Typically, we take blood pressure measurements on the left arm. It's closer to the heart and will provide a more accurate reading for non-stroke folks.

After stroke, a stroke affected limb, however, doesn't have the same muscle activity of a non-affected limb. And that muscle activity affects blood pressure readings. That limb may also experience more edema or swelling due to less effective circulation, lymphatic draining, and other things. That can also impact the blood pressure readings.

So, to correctly read blood pressure, you should take a reading on the unaffected side. A difference of 10 points between the sides is not uncommon.

The other issue that impacts readings is arm position. The cuff where the reading takes place should be level with the heart. With an upper arm cuff, that's easy. With a wrist mounted device, it's more challenging. You have to be able to lift the wrist to the same height as the heart.

Your arm is also supposed to be relaxed when you take the reading so it should be on a bed, table, shelf, or some other item to hold it at heart level. To get an accurate reading, the arm should not be held up under its own power.

If you have a care p

What is chronic pain?

Pain sucks. Chronic pain sucks even more. And for many stroke survivors, this is now their life. Actress, artist, documentarian, and stroke survivor Maggie Whittum explored the world of chronic pain with us in episode 38 and with Barbie dolls filled with nails or covered in suffocating clay. Other survivors have talked about living with pain, even when there is nothing "wrong" with the limb. 

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And once you've lived with pain for several months you don't become accustomed to it. In fact, the nervous system increases  your response to pain.

So what's going on here?

The brain damage from stroke drives chronic pain in many survivors through a perfect storm of symptoms:

1. Decrease in sensory filtering
3. Increase in sensitivity

4. Homuncular changes in the mind-body connection

In this conversation, Physiotherapist and pain specialist Brendon Haslam joins us to talk about the nature of post stroke pain, how clinicians may treat it, why some medication work while others don't, and how, after stroke, we may no longer know just how big or small our hand is.

If you don't see the audio player below, visit the original article page here.

Who is Brendon Haslam?

Brendon is a physiotherapist and current PhD candidate with the University of Melbourne. Brendon has a particular interest in pain following stroke, and his PhD is focusing on identifying contributions to upper limb pain in stroke, and understanding possible neural networks involved in the pain experience.  The aim of this research is to increase understanding of pain following stroke, and subsequently develop effective interventions to manage the significant problem of chronic pain in stroke.

What is chronic pain?

Once someone experiences a pain for 3 months, it's considered chronic pain.

The nature of chronic pain after stroke goes deeper, though. For one thing, we normally think of pain as resulting from tissue damage or injury. While sometimes joint injury, shoulder subluxation, tendonitis, and other conditions may be a factor, they don't tell the whole story.

For example, lightly touching an affected limb may be extremely painful. Applying the exact same stimulus to and unaffected limb and an affected limb may feel like nothing on one side and extremely painful on the other, even if there is no physical difference in the stimuli.

A stroke affected limb may just hurt for no obvious reason. And that can be what the survivor just has to live with.

Over the last 20-25 years, as Brendon explains, our understanding of pain has evolved quite a bit. We no longer think of it as coming from specific pain receptors. Rather, it a broader sense of safety or danger to the body. And the more someone lives with chronic pain, the more sensitive the nerves at the spine will become to those sensations. Rather than learning to ignore the pain, we can become even more sensitive to it.

One of the biggest challenges with stroke recovery is how the brain sometimes loses the ability to inhibit or disregard signals and data. In the case of chronic pain, the brain fails to disregard those signals as the spinal cord in effect raises the volume.

In the case of tone and spasticity, as we learned from Dr. Wayne Feng, the brain loses the ability to inhibit signals from the spine to the affected limbs that drive tone.

For some survivors, like artist Seth Ian Shearer and NeuroNerd Joe Borges, the stroke reduced the ability of their brains to filter out or inhibit external sensory input. The go

Tawnie, the Neuro Mermaid

Tawnie the Neuro Mermaid bled into her brain for a week before the doctors in Ohio took her seriously. When the neurosurgeons began treating her they were shocked she was still alive. Still, the hemorrhagic stroke ended her dual career paths in in bar tending and special education.

Naturally, Tawnie came up with an alternative. She became a mermaid, an entrepreneur, and an advocate and supporter of other members of the stroke community.

In this long overdue Strokecast interview, Tawnie shares her story of trying to get treatment, how she got into mermaiding, her experience with cannabis, and the power of the stroke community.

If you don't see the audio player below, visit the original blog post on the Strokecast website here.

Who is Tawnie, the Neuro Mermaid?

As Tawnie shares:

At 28 I had a hemorrhagic stroke go misdiagnosed for a week. That's right I was bleeding in my brain 🧠 for a week so I have been documenting & sharing my recovery.

As a former special education teacher I'm interested in retraining my brain, biohacking, & helping others become 1% better everyday.

Working from home & running a business from my phone gives me the flexibility & support I've always wanted. I enjoy helping others do the same!

I love sharing tips tricks & my life follow along & ask any questions 🤗 I look forward to connecting

Https://msha.ke/tawniethemermaid

Medical Records

One of the challenges Tawnie had in getting her stroke diagnosed was a GIGO problem -- Garbage In, Garbage Out. The initial doctor she talked to failed to recognize her symptoms as a those indicating a stroke, and he made the notes in her records. That was the first problem. It was the garbage in.

Then, as Tawnie sought the advice of other doctors, they referred to her initial records, took the garbage in as truth, and failed to do their own assessment of Tawnie's symptoms, and produced recommendations based on that initial assessment. Garbage out.

It took a nurse who hadn't seen Tawnie's medical records to recognize that she was having the medical emergency that would ultimately lead to a helicopter evacuation.

In the US, at least, your medical records are yours. You are entitled to them. If you use the popular My Chart patient portal, you may have direct access to them. If not, you can reach out to your hospital, doctor's office, or other medical practitioners, and get copies of them. You can also get copies of your scans, X-rays, MRIs, etc.

The most important reason to get them is so you know what is actually in them. Whether you can correct them is another matter, but if there is incorrect information in them, you should know about it so you can give that context in future conversations.

The information in your records may impact future treatment. Nake sure it's not garbage.

Migraines

Migraines suck.

I think we can all agree on that.

So far I've only had one, I think. It was in the hospital after stroke. I felt my vision narrowing at the edges. It reminded me of how my vision would be impacted the flash cube in the Kodak Instamatic in the 1970s.

Of course Tawnie's life long migraines were much more severe. She did get treatment for them, but no one checked for the aneurysm that was waiting to rupture. Tawnie powered through.

Carmen De La Paz also experienced migraines for years before her stroke. She thought they were just dehydration so she would make a habit of drinking more water to address them -- until one day one of them ruptured.

Sometimes the cause of a migraine is an aneurysm in a blood vessel. Caught early, aneurysms can be treated before they turn into debilitating hemorrhagic strokes. The patient needs to seek treatment, though. The doctor has to order tests, like an MRA, and the insurance company has to agree to pay for it.

In Tawnie's case, the first two things happened. The insurance company failed by refusing to approve the scan that could have prevented Tawnie's stroke.

You Look Fine!

Many people will tell a survivor things like:

You look great!

You'd never know you had a stroke!

Looks like you're all better now!!

When people say these things they usually mean well. In reality, though, they can feel quite hurtful.

Many survivors live with invisible disabilities -- cognitive, emotional, communication and other challenges that other folks can't see. Statements like those above ignore these challenges.

After a few months, outward signs of the stroke may have dissipated, but internal struggles remain. Compliments like these invalidate and undermine the challenges that may still be part of our lives.

They also make it easier for folks to blame us for being "lazy" when we have a high-neurofatigue day and simply need more sleep.

Mermaids

Tawnie embraced mermaiding. There is a community online of folks who put on tails and fins. They lounge around the pool or go swimming with their tails and celebrate the life style and community.

It's interesting to have an episode with Tawnie the Neuro Mermaid right after I came back from the JoCo Cruise with its own substantial pod of mermaids.

Tawnie's motive for becoming a mermaid is a great approach. The challenge with returning to a hobby after stroke is that you remember how well you used to do it. And if your ability to perform the same task is impacted by your stroke, it's frustrating. With a new hobby, though, as part of your new life, you don't have a pre stroke version of the experience to compare it with.

So pick up a new hobby and start from scratch. You can only get better at it.

Survivor Sundays

Each Sunday, Tawnie joins Maddi Niebanck for Survivor Sundays on Instagram. It's an informal live show that gives Tawnie and Maddi the opportunity to connect with each other a

Write your own recovery from stroke

It's one thing to have a stroke in an urban center surrounded by hospitals and ambulances. It's another experience altogether when you're at a snowy ski resort in a remote Canadian town. You can't call the caretaker because you are the caretaker, and your only connection to the outside world is a Satellite phone you left in the office.

That was June Hawkins' experience as the dark specter of high blood pressure unleashed a cavalcade on emboli into her brain.

In this episode, she shares the details of her story and how she's been writing her way to recovery.

If you don't see the audio player below, click here to go to the original blog post.

Who is June Hawkins?

June’s heart has always drawn her towards living life as an adventurer.  She has been a mountain guide, marathon runner and canoeist, mother of two children and program coordinator of a provincial crisis line. But her lifelong passion has always been cross country skiing. She developed and operated what became a one of the most successful ski schools in Canada, attracting skiers from across North America. June possesses the unique ability to make people feel relaxed and welcomed and considers her biggest accomplishment is that of teaching a fearful beginner skier the joy of getting down a hill safely.

She had her stroke early in the morning of February 1, 2021. She was living and working for the winter at Nipika Mountain Resort in British Columbia, Canada as the on-site custodian and ski instructor. June says her stroke journey has blessed her with the time and the ability to continue with her other passion: writing.

​June’s recovery journey has provided a rich world from which to write and her hope is to speak to survivors using their language and to educate others about stroke using theirs.

Nature of writing

June found writing to be a great way to clear her own head. Navigating the world can be more complex after stroke and reducing the noise both coming in from the outside and the noise generated by our own thoughts. Writing can get that stuff out of the way.

But where do you start?

I find simply writing long to do lists helps, even if I never use the list. It's a great way to get started.

Others find it helpful to write that they don't know what to write.

The approach June takes in her program is to pass out writing prompts. These are questions or topics or themes to get you started. The great thing about writing prompts is that 5 people can get the same prompt and end up writing 7 different things and all of them are on topic.

It's a place to explore your thoughts.

With June's program, participants get to share their writing with other members of their cohort -- other brain injury survivors. Since it's ongoing for a series of weeks, it's also an opportunity to build relationships across distance with a diverse group of people who still share a major life event in common.

And it's all with the stroke of a pen http://www.withastrokeofmypen.ca/

High Blood Pressure

High blood pressure is the silent killer because it doesn't hurt. You can live with it for years as it slowly stiffens and damages the blood vessels in your heart and brain until a clot forms there, drifts there, or the wall of the vessel fails.

The scale of damage high blood pressure does is astounding. In addition to being a leading cause of stroke, heart attack, and, therefore, disability and death at the individual level, it cost countries billions and trillions of dollars in lost productivity and increased health care costs.

And you never know it's happening unless you check.

So target 120/80 and work with your doctor to get there. Pick up a home monitor if you don't already have one. There cheap and may be the key to saving your life or the lives of people you care about.

Stoicism

June has been spending time diving into the philosophy of the Stoics.

Stoicism has a rich tradition extending thousands of years and is underserved by pop culture interpretation of what it means to be stoic.

It's based around four key values:

• Courage
• Temperance
• Justice
• Wisdom

I think it's easy to see how those values can really come into play after stroke. They inform ways of thinking that can help us get through this new world.

Will it work for you? Maybe. You can learn more at http://dailystoic.com

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 really appreciate it.

Hack

June cited two hacks for recovery.

The first is simply to try typing with your affected side. It's not easy, but those repeated small motions are just the type of motion you want to get back.

The second was to get a TV tray or breakfast-in-bed tray. This is a tray with short legs that you put over your lap. Sure, you could use it for croissants and coffee. June uses it for her computer. By using this platform and a keyboard, she reduces the shoulder and elbow strain that accompanies computer use after stroke.

Links

Where do we go from here?

• To learn more about June and her writing workshops, visit http://WithAStrokeOfMyPen.ca
• Share this episode with someone you know by givin

Stroke Survivor and Composer Andrew Stopps defeats the gentle assassin

Andrew Stopps call stroke "The Gentle Assassin."

Like many (but not all) of us, Andrew found it remarkable that stroke did not hurt. That's often the case with an ischemic stroke. Mine didn't hurt either, and I found it remarkable at the time. It was a profoundly interesting experience.

Lack of pain doesn't mean lack of impact though. Andrew found his music career suddenly upended and his mosaic career suddenly suspended as his husband rushed him to the hospital. He lost (for now) the ability to play the clarinet. He discovered unexpected laughter and tears. And it redirected his life.

Andrew and I talk all about his encounter with the Gentle Assassin in this week's conversation.

If you don't see the audio player below, click here to visit the original blog post.

Who is Andrew Stopps?

Andrew Stopps has taught music for over 20 years in Australia, UK and New Zealand. His teaching experience ranges from a woodwind instrumental teacher and band director in rural South Australia to Head of Music at the Australian International Performing Arts High School in Sydney. In 2009 he moved to New Zealand and in 2012 he was a finalist for the NEITA Excellence in Teaching Award.

He is the founder of the Wellington City Concert Band, NZ Youth Symphonic Winds and the Wellington Band and Orchestra Festival. He is also the founder of the Hoa Project that provides support and mentoring to music teachers around New Zealand.

He has been a composer and arranger since high school and his works are performed by ensembles around the world. He has travelled to Washington DC for the World Premiere of my work “Welcome to Aotearoa” for concert band in 2019. This year his “Middle Earth Suite” is to be world premiered in Melbourne, Florida. 

In November 2021 he experienced a mini stroke immediately followed by a massive stroke. He has made a 98% recovery using music therapy, brain plasticity, and with the support of his husband.  He continues to compose and is currently writing his book "In One Stroke".

You can connect and chat with Andrew at andrewstopps.com

"I am Andrew Stopps."

Before going to the hospital, while struggling with language and dexterity, and while his brain was dying, Andrew still had one thing to do. He needed to declare his identity. He needed to write "I am Andrew Stopps," before heading out the door.

Our personality, individuality, and human existence is dependent on our brain. In the middle of a brain attack, like stroke or brain tumor, all of those things are at risk. Many survivors have to reckon with the idea that they will never be the way they were; this experience has made them a different person.

Dr. Debra Meyerson explored this whole question in her book, "Identity Theft: Rediscovering Ourselves After Stroke."* I spoke with Debra and her husband about the topic and her book in 2019. You can listen to that discussion here.

Diaphragm and Core

When we talk about left or right side weakness after stroke we're not just talking about arms and legs. The same weakness can affect our core muscles -- the ones in our chest and abdomen. Weakness there can make it harder to sit up, leverage those muscles to make a big effort, impact our breathing or even hinder digestion and elimination.

The diaphragm is the main muscle that controls breathing. When it moves smoothly in one way, we inhale. When it moves properly in the other way, we exhale. When stroke weakens it, things get screwey.

Most of us never think about our diaphragms. Andrew is different. Because he's a musician with a career playing an instrument that relies heavily on breath control, he was already intimately familiar with the functioning of his diaphragm and how it behaved differently after stroke.

It resulted in unusual laughter, among other things.

Because he was familiar with it, he could also focus his efforts on regaining control. Additionally, consider our previous discussion about the homunculus. Andrew likely has more brain real estate dedicated to his breathing and diaphragm. Deliberate, repeated focus means cells were firing together more often. And the cells that fire together, wire together.

Emotional Lability and PBA

Emotion lability and pseudo bulbar affect also came up in our conversation. This condition is common after stroke. It refers to how survivors may find themselves crying at the slightest provocation or laughing at inappropriate times. It's a result of the physical damage to the brain.

I've certainly experienced the unexpected tears, especially in the early days. Especially interesting was when I would find myself weeping from simple physical exertion in PT. It was crying without emotional context in my case. I didn't feel sad, just curious.

This can be frightening to both the survivor and their family, especially if prior to the stroke, the survivor was a fairly stoic person who showed little emotion. Now when the cry for little or no reason, it can really share them and their care partners up.

The question of, "Am I now a person that cries over TV commercials?" Further feeds into questions of identity after stroke.

Hyperbaric Oxygen Therapy

Hyperbaric oxygen therapy involves spending a chunk of time in a oxygen-rich, high pressure chamber every day. Andrew paid out of pocket for this treatment in New Zealand, and feels it helped his recovery. Of course, he's also not sure if it was the actual therapy that helped or if it was more the isolated meditation time that made the difference.

The science doesn't provide much clarity.

HBOT does help with infections, post-burn treatment, carbon monoxide poisoning, nitrogen bubbles in the blood (the bends), and some other conditions.

The lack of any rigorous, controlled, double-blind studies on the effectiveness of HBOT after stroke is an issue. It's an expensive, time consuming process with no significant evidence that it works.

I spoke with Dr. Michael Bennet a few years back about the treatment. You can listen to that conversation here. He's an expert in and advocate for HBOT