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.
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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. His assessment was that he wished it worked, but the evidence doesn't support it.
So does it work? Maybe. Did the HBOT drive Andrew's recovery? Or was it just time spent in the chamber alone with his thoughts? Or did it help his recovery because he believed it would? We don't know. That's why we need more double-blind controlled studies to figure it out.
In the meantime, we do know that it is safe for most folks. If a person has the money to spare and doing HBOT will not take time away from traditional PT, OT, and SLP, then, sure. Go for it. And I hope it's successful.
Hack of the Week
Andrew shared two hacks this week. The firs is about yawning.
It's fascinating the way a body with hemiparesis reacts when we yawn. Andrew found he could get some minor control once a yawn or stretch caused his hand and arm to respond.
In my case, in the early days, a yawn would pop my affected arm right up and my fingers would go full jazz hands.
It makes sense when you think about it. The brain damage from stroke may impact higher level brain functions, but yawning is a more fundamental bodily function controlled by the brain stem or acted upon by the spinal cord.
And when we get that movement, look at it, focus on it, and try to take advantage of it. The first time you may not succeed, but the tenth or hundredth or thousandth may be a different story. I t reinforces the idea that your hand still works fine. You just don't have control of it…yet.
Andrew's second hack is to become like a kindergartener. Organize your home carefully with everything put away in a deliberate manner. After stroke, you can't go rummaging effectively though overstuffed drawers and cabinets and expect to find what you want. You don't have the time, energy, spoons, or dexterity for that. A place for everything and everything in its place is how to approach home organization, like a kid's classroom.
Plus, clutter scattered about the place is not a good idea when you have mobility challenges.
Survey
Do you have thoughts about the Strokecast as a show? I want to hear about it. Please complete the listener survey at http://Strokecast.com/survey by March 31, 2023 to share your insight. I'd realy appreciate it.
Links
Where do we go from here?
- Check out Andrew's site, programs, and music by visiting http://AndrewStopps.com
- Share this episode with someone you know by giving them the link http://Strokecast.com/AndrewStopps
- Please complete the listener survey at http://Strokecast.com/survey
- Don't get best…get better.
More thoughts from Andrew
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
![A picture of a highly alert squirrel on a tree branch The text over the image read: I called it the gentle assassin because it was so gentle when [my stroke] happened. I wasn't scared at all, in fact, which is interesting. I probably should have been. - Andrew Stopps](https://strokecast.com/wp-content/uploads/2023/02/Andrew-Stopps-04.jpg)
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Musician, teacher, brain tumor survivor, and now stroke survivor Andrew Stopps joins us to talk about the gentle assassin that almost took his life, and how he's been recovering as we explore issues of post-stroke identity.
Dr. Aravind Ganesh
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.
How can we generate more funding for stroke research and open up research to the broader stroke community around the world? Collavidence may have the answer. We talk about it with Chief Knowledge Officer Dr. Aravind Ganesh in this episode.