2021-09-12

Stroke Leaves a Woman "Trapped Within"


 

Jo Ann Glim and her husband were enjoying the semi-retired lifestyle in their new, Florida home. They enjoyed day trips, volunteer activities, and other adventures. Jo Ann was starting a new temp gig at the Tropicana offices, and they were making all sorts of plans for the coming years

.A blood vessel deep in Jo Ann's brain had other plans. It ruptured and damaged her Thalamus on her first day at a new temp job.

Jo Ann would spend two weeks basically unconscious. With lots of work, determination, a a great team, she dove into her recovery.

Twenty four years later, she joins us to talk about her journey, her writing, the risks of being a problem solver, and the things that helped along the way.

Her book, Trapped Within: A True Story of Survival, Recovery, Love, and Hope* is available on Amazon.

About Jo Ann Glim

Jo Ann Glim sits in front of a dark background looking at the camera. She wears a black dress with white polka dots. She wears dark rimmed glasses

Jo Ann Glim was born in Chicago, Illinois to a military family and raised in Anacortes, Washington in the far reaches of the Pacific Northwest in a three-generational household. Even though the family was poor, she never knew it.  Poverty taught her life skills: self-sufficiency, creativity, and saving for a rainy day. Her childhood home was filled with love. Tragedy struck when she was fourteen and her mother passed away. Within three weeks, her grandparents were relocated to a nursing home in Illinois and she was taken in by her mother's sister. Everything she had known to be home was gone.

​After she finished school, Glim's career followed three paths: MEDIA - (as a disc jockey/copywriter) WSDM-FM Chicago, KMPX-FM San Francisco, and KIKI-AM Hawaii; and continued in COMMUNICATIONS - a forty-year freelance portfolio with credits including an award-winning column in fourteen northern Illinois newspapers; one-liners for nationally known comedians; monthly articles for Manatee County Florida's Chamber of Commerce Current magazine, to name a few. She took courses in BUSINESS MANAGEMENT - at a local college and after moving to the suburbs, began working for Kelly Services. Sixteen years later, she retired as an on-site Human Resources Manager responsible for the temporary needs of a Fortune 500 company. ​

She now lives in Florida with her husband, Bill, and their Scottish Terrier, Lucy. Her passions are writing, photography, and travel. She loves Chicago pizza, and is happiest travelling with her hubby, playing handbells, or on hiking trails with her camera and dog.

Book

Jo Ann sent me a copy of her book before we talked.  The book, Trapped Within: A True Story of Survival, Recovery, Love, and Hope*, chronicles her stroke and rehab experience. She gets deeper into her relationships with doctors, therapists, and her therapy roommate and shares fears, frustrations, and lessons learned along the way.

Jo Ann writes with a crisp style that's easy to read. Her chapters are short. If you can read only a few pages without a nap, it's a nice choice. Or you can just read chunks of  it at one go.

You can find Trapped Within on Amazon in paper or eBook versions.

Check it out at http://Strokecast.com/TrapedWithin*

"Trapped Within": Book Trailer



Elizabeth Kubler-Ross and the 5 Stages of Grief

Kubler-Ross wrote about grieving and death.  Recovering from stroke is similar, except instead of grieving over the loss of another person, we are grieving for the loss of our prior selves. Getting through that process takes time, but it also helps us adapt to the new life we have after stroke.

The 5 stages of grief are:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance.

If you're struggling with moving on with your life a neuropsychologist or other counselor can help you navigate this path.

Hack of the Week

Lainie Ishbia from Trend-Able, who I spoke with in Episode 136 suggests that if you struggle with fastening buttons on a shirt, you can get around that.

Just sew (or have someone else sew) the shirt closed at the buttons and turn it into a pull over. That way, you can still wear those stylish button down shirts without spending hours dealing with fussy closures single-handedly.

Another option for those shirts, if you're not ready to get them sewn up, is to get a button puller*. This is an inexpensive device that makes it easier to fasten buttons with one hand. I use mine most when I'm trying to put my dress shirts on a hanger.

Either way, you now have 2 fewer reasons to not wear that nice shirt.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-09-02

From Locked in to Pageant Queen


 

At 30 years old, social worker Jeri Ward was incredibly busy. Perhaps too busy. Having a stroke was the not even on her radar. But then again, is it ever?

Multiple hospital visits and a failed thrombectomy later, she found herself completely paralyzed and unable to speak for months in a hospital bed. Scared, bored, and frustrated she would go on to recover, win the title of Mrs. Ohio International, and partner with the American Heart Association to raise awareness of stroke in the general population.

Jeri spoke to me for over an hour in the days leading up to the Mrs. International.

About Jeri Ward

Jeri Ward wears a gray blazer in a white/off white room near as window. She has long, brown hair.

Jeri Ward lives and works in Ohio. She built a busy career as a social worker, Autism specialist, and volunteer. Jeri was always on the go, with one project after another.

In the midst of that hectic schedule she nourished her passion of pageant life and lived it for decades. In 2018, Jeri was crowned Mrs. Ohio America.

Later that year, Jeri barely survived a massive ischemic stroke. She was locked inside her own body in an ICU bed for months. Gradually, she recovered her speech and movement. And she rededicated herself to the cause of stroke awareness and advocacy.

In 2021, Jeri returned to pageant life, winning the title of Mrs. Ohio International with a new platform of raising stroke awareness and advocating for survivors both at home and around the world.

She started the Lemonade Project to help folks learn and practice appropriate self-care.

Jeri currently works at the American Heart Association as a Development Director.

Mrs. International Pageant

A  lot of folks have preconceived notions about pageant winners, and often those notions are not true. Jeri is the fourth pageant winner I've had the pleasure meeting. Marsha Scmid was a guest on the show a couple years back after winning the title of Ms. Wheelchair USA. It was a stroke caused by a chiropractor that her eligible for that pageant.

Ina previous job, I had the pleasure of working with Hilary Billings, a former Miss Nevada. I interviewed Hilary for my other podcast, 2-Minute Talk Tips. You can hear that conversation here.

And I went to college with a woman who would go on to become Miss Montana. They have all been some of the smartest, hardest working people I know. Really incredible individuals.

The Mrs. International pageant, as Jeri describes it, puts a premium on contestants' platforms, a I don't mean their shoes.

This was a great match for Jeri who has turned her stroke into a cause -- to take every opportunity she can to help with stroke education and advocate for survivors.

Jeri did an amazing job at the finals, coming in in third place. She chronicled her journey on Instagram

Ohio Legislation

Jeri channeled her career experience, her stroke advocacy work, and the drive she uses in pageant life to help the Ohio State legislature pass SB21, which updates protocols for EMS. The short version is that this law will require ambulances to take stroke patients to an appropriate hospital, rather than the closest hospital.

As we know, time lost is brain lost, and moving folks from hospital to hospital costs time, money, and long-term disability

This legislation will help change that in Ohio.

Hack of the week

Explain things to people simply. Jeri talks about the headphones she wears due to her sensory processing challenges. She'll mention briefly why she wears them in meetings at work.

Disclosing and talking about disabilities is a challenging subject. Outside of our doctors, no one is entitled to know our medical history. Even then, there are limits. There are lots of very good reasons for minimizing disclosure given how wide-spread ableism is in this world.

At the same time, there's something to be said for acknowledging the elephant in the room. The elephant is metaphor in this case. Imagine you are having a conversation with a few people at somebody's home. You are not circus or zoo folks. Then an elephant walks into the room and just sits there. And no one says anything. How can anyone focus on the main thrust of the conversation?

A fraking elephant just walked into the room!

In order for conversation to continue, someone needs to say something about the elephant. Pretending it's not there isn't going to work. Once the owner/roommate of the elephant says, "Oh, that's just Bob. He's cool. So, anyway…"

You may still have a lot of questions about Bob, but you can put those aside from now and get back to a productive conversation.

When folks mention "the elephant in the room," they are talking about something that is big, unexpected, and that folks might want to ignore, but can't. Acknowledging the elephant lets us get back on track.

Sometimes, all we need to do is acknowledge our elephants.

When Jeri puts in her earphones in a business meeting, is that an elephant worth acknowledging? Often, yes. Should it be? Probably not.

But someone who isn't familiar with sensory processing challenges may be speaking, see someone put on headphones and assume they are being blatantly rude and ignoring them in an aggressive manner.

By telling people what you need, such as when Jeri mentions why she uses them without going into detail, it lets the meeting get back on track without someone taking offense.

On another note, this is why it's important, if you're comfortable doing so, to share your story. To normalize disability and the tools we use to make our world more accessible. Canes and headphones and rollators and splints and service dogs may be elephants today, but they don't have to be in the future.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-08-23

Brain Remapping After Stroke


 

After a stroke, do nearby nerve cells take over the function of dead nerve cells as folks regain function? That's what we would expect, but new research from Dr. William Zeiger suggests that is not the case. After giving very specific strokes to mice, they used advanced imaging techniques to understand just what was happening in those little mouse brains. It was not what they expected.

We talk about that research, brain remapping after stroke, the importance of constraint induced therapy, and more in this episode.

Bio

Dr. William Zeiger professional head shot. He wears a white doctor's coat against a gray background as he looks at the camera

Dr. Zeiger is a physician scientist in the Department of Neurology at UCLA. Clinically, Dr. Zeiger works as a neurologist specializing in movement disorders, particularly Parkinson disease and atypical parkinsonian disorders. Dr. Zeiger also runs a neuroscience research lab focused on investigating cortical circuit dysfunction in neurological disorders.

The Study

You can read the paper Dr. Zeiger and his team produced here: https://www.nature.com/articles/s41467-021-24211-8

You can read an article about the study here. It's how I learned about the research and is a little more accessible: https://www.eurekalert.org/pub_releases/2021-06/uoc--hbc062521.php

Basically, researchers gave mice strokes in a specific part of the brain to stop a single whisker from working. They use a technology called 2-Photon Microscopy to examine the brains of these mice. They wanted to see if other nerves would simple take on responsibility for that whisker. That did not happen.

Then they removed all the other whiskers from the mice. Once they did that, mice began recovering function in that remaining, stroke affected whisker. Essentially, it was a form on Constraint Induced Therapy for the mice.

This gives us some interesting information about neuroplasticity. It's hard to extrapolate to humans, but it does point toward the needs for ongoing research into just what is happening during brain recovery.

The Neuro Nerds

The Neuro Nerds is one of my favorite podcasts. Host Joe Borges was a guest on this show back in episode 65.

This week, I was Joe's guest on The Neuro Nerds. We talked stroke stories, nerd stuff, Doctor Who, podcasting, the brain injury community, and much more. You can listen in your favorite podcast app or right here by pressing play.

Hack of the Week

One of the biggest risks for stroke survivors and Parkinson's Disease patients is falls. Falling is of course even more likely at night because it's dark and we're tired. And many of those late night falls happen during late night trips to the bathroom.

If you're a fall risk, one solution is a bedside commode or a urinal jug (sorry that doesn't help you, ladies). It may not be pretty or something you want in your bedroom, but if it means you don't fall and pick up another brain injury or other injury, it's probably worth it.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-08-10

Can you treat depression with Tai Chi?


Recent research shows that doing Tai Chi after a stroke may reduce depression. We talk with the author of the study in this episode.

It's a nice complement to our previous episode where we talked about the nature of Post Stroke Depression. Depression is an insidious illness that undermines recovery, healing, relationships and the joy we could find in life.

Traditional treatments may include talk therapy and/or medication. There are also a host of new treatments being studied. And there's a bunch of snake oil or scam treatments out there, too. Plus there's a whole bunch of stuff in between.

Dr. Ruth Taylor-Piliae has been working in the stroke field and with Tai Chi for a long time. Her research is a promising starting point for exploring the potential of ancient Tai Chi practices to treat Post Stroke Depression.

Bio

From the University of Arizona College of Nursing

Dr. Ruth Taylor-Piliae poses for a headshot in front of a golden brown backdrop

Dr. Ruth Taylor-Piliae is an Associate Professor in the College of Nursing at the University of Arizona. The goal of her research is to increase physical activity among older adults with heart disease and stroke through the implementation of innovative interventions such as Tai Chi, to improve physical functioning, reduce fall rates and improve quality of life.

Dr. Taylor-Piliae received her B.S.N. from California State University Fresno, her M.N. from the Chinese University of Hong Kong, and her Ph.D. from the University of California San Francisco. She completed a 2-year post-doctoral fellowship in cardiovascular epidemiology and prevention at Stanford University. Dr. Taylor-Piliae has received funding as a principal investigator from the American Heart Association/American Stroke Association, Hospital Authority of Hong Kong, National Institute of Health, and the Robert Wood Johnson Foundation.

She reviews for professional journals and has had over 70 peer-reviewed manuscripts published in top-tiered journals both within nursing and inter-professional journals. She is highly cited for her work (citations>3600, h-index=30, i10-index=54).

For more details, see https://www.nursing.arizona.edu/rpiliae

Should you do Tai Chi?

Maybe. Ask your doctor.

Before engaging in any new exercise program or treatment, ask your doctor to make sure you can do it safely.

I am not a doctor. I say it all the time. I'm just a marketing guy who knows way more about neurology and neuroplasticity than any marketing should know.

That said, let's run Tai Chi through my snake oil filter.

Is Tai Chi safe?

For the most part, yes. Of course if you have balance or movement challenges, an adaptive for may be more appropriate. Take steps to make sure you don't fall. Falling is probably the biggest risk, but it should be an easy one to mitigate,

Is it expensive?

Generally, it's probably not that costly. It's not going to cost you tens of thousands of dollars. With some searching, you can find free or low cost options.

Will it interfere with traditional therapies?

It doesn't have to. If you have the time and energy, you can do Tai Chi in addition to PT, OT, Speech, or Mental Health therapy. If you decide to do Tai Chi as part of your recovery, this random guy on the internet suggests to do it in addition to, rather than instead of regular therapy.

Will it actually help your recovery?

Maybe. As Ruth and I discussed, her research shows it does reduce Post Stroke Depression. Granted, it's a small study.

There are a lot of things survivors are encouraged to do to help recovery. Move. Exercise. Practice patterns. Learn stuff. Connect with other people. Find things you enjoy doing and do them. Those are just a few, but Tai Chi does support those.

Final analysis

Especially if you enjoy doing Tai Chi and your doctor says its safe, then go for it. There appears to be a potential benefit and no significant downside. That's a win by my math.

Paralympic Games

The 2020 Paralympic Games will take place in Tokyo between August 24th and September 5. You can learn more about the games from the main site here. You can also learn more about the US team of 200+ athletes here.

Check out their stories. Try to catch some of the games on TV or online. These are athletes who are competing with disabilities and showing what can be possible. Perhaps there's a sport you would like to become more involved in. These athletes may show you a way.

Check out the athletes' stories and follow your favorites on social media. What an you learn from them that you can apply to your own life?

And maybe there's not a life-changing takeaway other than, "That was awesome!" And you know what?

That's okay, too.

Hack of the Week

You don't need specialized grippers for jars and containers. Simple rubber band can make handling things with weak hands much simpler. They're cheap and come in a variety of sizes. Here's a listing on Amazon.*

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-08-02

Ep 137 - Get the Arm Back with Vagus Nerve Stimulation




A lot of the attention in stroke research is paid to the acute phase. How can we treat a stroke in the ER? What can we do so it doesn't get worse? How can we prevent strokes from happening? What can we do in inpatient rehab to help folks get better?

Those are all important things,  and the stunning innovations happening around us are amazing, newsworthy, and truly impacting people's lives in a meaningful way.

But there's not as much attention given to chronic stroke. Sure, there's some. There are people working really hard to help stroke survivors recover even years after stroke. But not as much makes it into the news.

That's one reason I was interested in Dr. Jesse Dawson's work at the University of Glasgow. The recently published a study in the Lancet about using Vagus Nerve Stimulation to drive recovery in patients years after stroke. And their procedure looks promising.

Bio

Dr. Jesse Dawson headshot. He directly faces the camera against a white background

Dr. Jesse Dawson is a Professor of Stroke Medicine and Consultant Physician in the Queen Elizabeth University Hospital. His research portfolio includes prevention and rehabilitation clinical trials in stroke survivors. His main interest is in improving the long-term outcome after stroke. Dr. Dawson holds a BHF/Stroke Association programme grant, HTA NIHR funding and NIH funding and runs a large outcomes adjudication system for multi-national stroke trials. He is the NHS Research Scotland lead for stroke research and sits on the editorial board of Stroke.

Dr. Dawson is currently researching the role of xanthine oxidase inhibition as a novel preventative treatment after stroke. This is the focus of a UK wide clinical trial, funded by a programme grant from the BHF/Stroke Association.

He is also studying novel treatments for upper limb weakness after stroke, including vagus nerve stimulation and robotic therapy. These studies included a large NIHR funded study, funding from Chest Heart Stroke Scotland and a collaboration with industry. 

Dr. Dawson is the Medical Outcomes Manager for the endpoint committee of the large NIH funded CLEAR III trial, the NIH funded MISTIE III study, the European Union FP-7 funded EuroHYP study and the international SITSOPEN collaboration. This involves review of all trial endpoints and co-ordination of the endpoint adjudication process for these large phase III studies.

He supervises several PhD and MD students, including students with competitive government and charitable funded fellowships. He co-directs a large MSc programme in Clinical Pharmacology and is Director of the Vertical Theme for Clinical Pharmacology and Therapeutics for the MBChB programme. He is a regular MRCP PACES examiner and external higher degree examiner for several UK univeristies.

The Research

This is a fascinating study because even though they are stimulating the Vagus nerve, they are not actually treating it. Instead they are using it as a messenger to the brain to say, "Wake up! It's time to learn something." Essentially, it's trying to get the brains attention so traditional Occupational and Physical Therapy can work. And it seems to be working. It will be interesting to see if in future studies they can get similar results with Speech Therapy.

The other important take away here is that this work with chronic stroke survivors -- folks who had strokes years ago -- even in the control group. Granted the experimental group that got the Vagus Nerve Stimulation got better results.

The point is, though, that intense physical and occupational therapy gets results even years after as stroke, demonstrating once again that the 6 or 12 month caps on recovery are complete and utter nonsense.

Hack of the Week

Pick a small thing to focus on. Perhaps it’s a small task. Or part of a small task. Or maybe it's a new goal you haven't done before but it seems within reach. Do that. Focus on that. Achieve that. The look for more small challenges. Lots of wins on small challenges adds up to big success in the long run.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

Understanding Post Stroke Depression


 

Surviving a stroke is not the end of a medical issue. It's the start of a new journey, with new challenges. Major depression is often one of those challenges. It interferes with recovery, rehab, adjusting to a new life, and maintaining relationships.

In short, it's big problem. And it's pretty common.

According to new research by Dr. Laura Stein from the Icahn School of medicine, depression after stroke is twice as likely to occur as depression after heart attack. There's something unique about stroke that leads to depression.

On top of that, if a person lived with Generalized Anxiety Disorder before stroke, they are 1.7 x as likely to experience Major Depression after stroke.

In this conversation, Dr. Laura Stein talk about her research and what survivors, caregivers, and medical practitioners need to know.

Bio

Dr. Laura Stein smiles at the camera while wearing a white doctor's coat against a gray back drop

Laura K. Stein, MD, MPH is an Assistant Professor of Neurology at the Icahn School of Medicine at Mount Sinai and attending physician at the Mount Sinai and Mount Sinai Queens Stroke Centers. She is board certified in Neurology and Vascular Neurology by the American Board of Psychiatry and Neurology. Dr. Stein received a BA from Amherst College and her MD and MPH from the Icahn School of Medicine at Mount Sinai. She completed her internship, neurology residency, and vascular neurology fellowship at Mount Sinai. 

Dr. Stein's interests are in stroke clinical care, stroke outcomes research, and medical education. She is the Neurology Residency Associate Program Director and precepts first year medical students in the Art and Science of Medicine preclinical skills course. Dr. Stein received the Department of Neurology Resident Class of 2020 Award of Appreciation for Dedication & Commitment Towards Excellence in Mentorship and 2020 Institute for Medical Education Excellence in Teaching Award. 

The Research

Dr. Stein's research was part of the American Stroke Association’s virtual International Stroke Conference. You can read the paper here.

You can read the article where I first encountered her work here.

The approach of looking at depression after heart attack vs looking at depression after stroke is an interesting one. It's a nice way of controlling for other potential causes.

The research looked at Medicare recipients, Medicare is a US government health insurance program, generally for folks 65 and older. It lets researchers draw from a rich collection of data. There are two significant tradeoffs, of course.

First, it's restricted to the US so there's no international representation in the study. Obviously, depending on the research question in particular, that may or may not be an issue.

Second, it's restricted to folks 65 and older. Can we say that the results of this study apply to younger stroke survivors?

Maybe?

Probably?

We don't know. And this study was not designed to answer that question. I'd say it does get us closer, though, and it opens up an opportunity to do further research that asks different but related questions.

That's what good studies do. The answer specific question with solid evidence and clear analysis. And the result can introduce new questions for researchers to explore in different studies.

In the meantime, it's likely safe to say, that regardless of age, stroke survivors are probably more likely to experience depression, and the community needs to be vigilant for the signs of depression and seek treatment accordingly.

Symptoms of Major Depression

Diagnosing depression involves identifying symptoms from a couple lists. To "earn" a depression diagnosis, a patient needs 5 symptoms from list 1 and all 4 from list 2. They are:

List 1 (Pick 5 or more)

  • Depressed Mood (most days)
  • Loss of Interest or pleasure
  • Weight loss or gain
  • Insomnia or hypersomnia (nearly every day)
  • Psychomotor agitation or limitation
  • Fatigue (nearly every day)
  • Feelings worthless or experiencing inappropriate guilt
  • Decreased concentration (nearly everyday)
  • Thoughts of death or suicide

List 2 (All 4)

  • Symptoms cause significant distress or social/professional impairment
  • Symptoms not attributable to a substance or medical condition
  • Symptoms not explained by another disorder
  • No history of manic episodes

You can read more details about the symptoms here.

You can probably see one of the issues. Many of those symptoms may be directly attributed to the disabilities and brain damage of the stroke without it being Major Depression. That's why it's important to work with a medical professional to tease them apart.

Symptoms of Generalized Anxiety Disorder

Generalized Anxiety Disorder is about more than feeling nervous. It's more complicated and severe.

The National Institute of Mental Health describes it this way:

People with generalized anxiety disorder (GAD) display excessive anxiety or worry, most days for at least 6 months, about a number of things such as personal health, work, social interactions, and everyday routine life circumstances. The fear and anxiety can cause significant problems in areas of their life, such as social interactions, school, and work.

Generalized anxiety disorder symptoms include:

  • Feeling restless, wound-up, or on-edge
  • Being easily fatigued
  • Having difficulty concentrating; mind going blank
  • Being irritable
  • Having muscle tension
  • Difficulty controlling feelings of worry
  • Having sleep problems, such as difficulty falling or staying asleep, restlessness, or unsatisfying sleep

You can read more about the condition here.

Neuropsychology

While most psychologists and psychiatrists can help stroke survivors and others with depression and other conditions, there is a specialty that may be even more helpful -- neuropsychology.

A while back, I talked with Dr. Karen Sullivan from I Care For Your Brain. She wrote the "Interactive Stroke Recovery Guide."*  You can listen to that conversation or learn more at http://Strokecast.com/Karen

A neuropsychologist has additional, specialized training to work specifically with folks who have brain injuries. They dive deep into the details of the injury to provide the best customized treatment plan, leveraging expertise that generalists don't have.

They work with folks with a wide array of functionality and challenges.

FLAME vs FOCUS

As long as we are talking about depression, we should also talk about antidepressants a little -- specifically SSRIs and how the relate to stroke.

In 2011, the FLAME study was published in the Lancet. In short, it demonstrated that stroke survivors who took Prozac (Fluoxetine) experienced stronger motor recovery. Many hospitals saw those results and began putting more stroke survivors on Prozac because, well, why not? If the patient tolerates it well, and it can help folks work better, it's probably a good idea. And if it reduces or prevent post stroke depression (or other depression) that's a solid win.

I talked with Dr. Nirav Shah about this back in November of 2018. You can listen to that episode here.

That's how I started on an SSRI in my stay. They originally tried Prozac with me, but I had a not great reaction to it. It apparently gave me an anxiety attack. So we quickly stopped that (thank you, Xanax, I think). We talked about it some more and tried again with a different SSRI -- Lexapro (Escitalopram) because I had tolerated it well during a tough time some years earlier.

Cheap, no negative side effects, and potentially helpful is win.

A month after my interview with Nirav, and a year and a half after my stroke, the FOCUS study came out, attempting to duplicate the results of the FLAME study on a bigger scale.

It failed.

The scientific consensus now is that SSRIs do not help with motor recovery. They do still help with depression.

The hospital no longer recommends SSRIs as part of the motor recovery protocol.

So what does that mean for folks like me?

I asked my doctor last year if that meant I should stop taking them. We talked about it and she explained I could certainly stop if I wanted to.

"But, dude -- it's 2020."

And she had a valid point.

(Okay, maybe I paraphrased that)

And that's why Escitalopram still has a place in my pill organizer.

As always, everyone's stroke and circumstances will vary, so talk to your doctor before making any changes to your medication.

Hack of the Week

Get a dog.

A dog can be helpful after stroke, whether it's a service dog or simply a companion animal.

When you have a dog, you have a responsibility to take care of it. You have to feed it, walk it, groom it, and give it cuddles.

Sometimes that may be reason enough to get out of bed and get moving for the day.

Links

Where do we go from here?

  • If you think there's a chance you might be experiencing depression, talk to your medical team
  • Share this episode with someone you know with the link http://Strokecast.com/depression
  • Subscribe to the free, monthly Strokecast email newsletter at http://Strokecast.com/news
  • Don't get best…get better.


Here is the latest episode of The Strokecast

2021-07-15

Ep 137 - Get the Arm Back with Vagus Nerve Stimulation


A lot of the attention in stroke research is paid to the acute phase. How can we treat a stroke in the ER? What can we do so it doesn’t get worse? How can we prevent strokes from happening? What can we do in inpatient rehab to help folks get better?

Those are all important things,  and the stunning innovations happening around us are amazing, newsworthy, and truly impacting people’s lives in a meaningful way.

But there’s not as much attention given to chronic stroke. Sure, there’s some. There are people working really hard to help stroke survivors recover even years after stroke. But not as much makes it into the news.

That’s one reason I was interested in Dr. Jesse Dawson’s work at the University of Glasgow. The recently published a study in the Lancet about using Vagus Nerve Stimulation to drive recovery in patients years after stroke. And their procedure looks promising.

Bio

Dr. Jesse Dawson headshot. He directly faces the camera against a white background

Dr. Jesse Dawson is a Professor of Stroke Medicine and Consultant Physician in the Queen Elizabeth University Hospital. His research portfolio includes prevention and rehabilitation clinical trials in stroke survivors. His main interest is in improving the long-term outcome after stroke. Dr. Dawson holds a BHF/Stroke Association programme grant, HTA NIHR funding and NIH funding and runs a large outcomes adjudication system for multi-national stroke trials. He is the NHS Research Scotland lead for stroke research and sits on the editorial board of Stroke.

Dr. Dawson is currently researching the role of xanthine oxidase inhibition as a novel preventative treatment after stroke. This is the focus of a UK wide clinical trial, funded by a programme grant from the BHF/Stroke Association.

He is also studying novel treatments for upper limb weakness after stroke, including vagus nerve stimulation and robotic therapy. These studies included a large NIHR funded study, funding from Chest Heart Stroke Scotland and a collaboration with industry. 

Dr. Dawson is the Medical Outcomes Manager for the endpoint committee of the large NIH funded CLEAR III trial, the NIH funded MISTIE III study, the European Union FP-7 funded EuroHYP study and the international SITSOPEN collaboration. This involves review of all trial endpoints and co-ordination of the endpoint adjudication process for these large phase III studies.

He supervises several PhD and MD students, including students with competitive government and charitable funded fellowships. He co-directs a large MSc programme in Clinical Pharmacology and is Director of the Vertical Theme for Clinical Pharmacology and Therapeutics for the MBChB programme. He is a regular MRCP PACES examiner and external higher degree examiner for several UK univeristies.

The Research

This is a fascinating study because even though they are stimulating the Vagus nerve, they are not actually treating it. Instead they are using it as a messenger to the brain to say, “Wake up! It’s time to learn something.” Essentially, it’s trying to get the brains attention so traditional Occupational and Physical Therapy can work. And it seems to be working. It will be interesting to see if in future studies they can get similar results with Speech Therapy.

The other important take away here is that this work with chronic stroke survivors — folks who had strokes years ago — even in the control group. Granted the experimental group that got the Vagus Nerve Stimulation got better results.

The point is, though, that intense physical and occupational therapy gets results even years after as stroke, demonstrating once again that the 6 or 12 month caps on recovery are complete and utter nonsense.

Hack of the Week

Pick a small thing to focus on. Perhaps it’s a small task. Or part of a small task. Or maybe it’s a new goal you haven’t done before but it seems within reach. Do that. Focus on that. Achieve that. The look for more small challenges. Lots of wins on small challenges adds up to big success in the long run.

Links

Dr. Jesse Dawson at the University of Glasgow

Dr. Dawson on Google Scholar

Dr. Dawson on Neuro News

Vagus nerve stimulation paired with rehabilitation for upper limb motor function after ischaemic stroke

Where do we go from here?

Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

*Affiliate links


Here is the latest episode of The Strokecast

2021-07-06

Ep 136 -- AFO Shoes Don't have to be Ugly


 

AFOs (Ankle-Foot Orthotics) offer many stroke survivors freedom by letting us safely walk. They lift our affected feet as we take our steps so our toes don't drag on the ground and trip us. They give us the mobility that foot drop threatens to take.

But they're not usually very attractive. And finding shoes that work with them is a challenge because they need to be bigger and wider so we can squeeze a weak foot and brace into the show.

A common question I hear from survivors is, "Where can I get shoes that aren't so ugly?"

Well, I don't always have great answers to that, but Lainie Ishbia does. Laine runs the Trend-Able blog and is one half of the emBRACE IT podcast. She's an expert on finding and making accessible fashion, and she joins us this week to share her story.

Bio

Lainie Ishbia looks at the camera over her left shoulder. She has long black hair and wears a dark leather jacket.

Lainie Ishbia is a blogger and podcaster helping people with invisible and visible disabilities look good and feel good. Her website at Trend-Able.com offers tips and strategies for literally and metaphorically  balancing fashion and physical needs. She develops tips for find accessible clothing options. If you can't find it, she offers tips on modifying clothes to make them work.

Lainie lives with Charcot-Marie-Tooth disease. It's a hereditary, degenerative nerve condition that today impacts her hands and feet. She began wearing AFOs on each foot at age 30 and mourned the loss of sleek heels at the time.

Since then, she's turned around her perspective, leveraged skills acquired through a career in social work and now helps folks with disabilities live their best lives with confidence, self esteem, and passion.

You can find more details of Lainie's story here.

Disability and Lifestyle

Living with disability (visible or not) is a lifestyle. It shapes what we wear, the careers we pursue if able, and the social activities we pursue. And we learn so much along the way.

I often say I now know way more about neurology and neuroplasticity than any marketing guy should ever know.

And now I know the foot bed in a shoe may be removal. And I know there is a thing in a shoe called a foot bed.

Lainie's fashion blog goes well beyond just the particulars of clothing and includes tips and strategies on how to navigate the world, like 5 Cocktail Survival Tips for Unsteady Girls or A Girlfriend's Guide to Dating with an Invisible Disability.

Disability Pride Month

July is Disability Pride Month.

I'm a little fuzzy on the origins and scope of the celebration, but my understanding is it started in 2015 in New York City to recognize the importance of the Americans with Disabilities Act.

How ought we celebrate it in 2021?

It will depend largely on your personal comfort level. Don't let anyone tell you you're doing it wrong.

The first thing is to recognize, accept, and believe with all your heart (original, mechanical, acquired from someone else, etc.) that there is no shame in being disabled.

Say it out loud if you can. There is no shame in disability.

We are people with lives to live. Sure, those lives may be different from the lives of the temporarily abled, but they are no less valuable.

Second, you can celebrate disability pride by simply being visible. By being a part of the world, participating in it and taking up space in it just like any temporarily-abled person. Don't let people pretend we don't exist. Don't hide from people just because our presence makes them uncomfortable.

Third, when someone talks about diversity and inclusion, make sure they are talking about disability in that, too. A diverse organization with no disabled people is not a diverse organization.

Fourth, share your story with folks. You don't have to share it with the world in a podcast, blog or YouTube channel if you don't want to. But you can share it with people in your community and family.  The woman who hosted the graduation party Lainie talked about in our interview (probably) wasn't trying to keep disabled people from having a good time at the party. It's likely the challenges Lainie faced never even occurred to her. The more we tell our stories, the more people will think about accessibility.

That's just a few ideas to consider. Ultimately, you can celebrate in the manner that feels most comfortable to you. If that means you walk, roll, or hobble down the street in a parade or protest, great. If it means all you can do is remind yourself there is no shame in disability, that's great, too.

Disabled is not a bad word. There is no shame in it.

Have a fantastic Disability Pride Month!

Hack of the Week.

Lainie suggests picking up (no pun intended) mini-lint-rollers, like these.*

These have sticky sheets used for getting lint or pet hair off your clothes. If you struggle with manual dexterity, though, they can also be great for picking up change at a store counter. They can also be a nice solution when that pill box spills on the floor and Plaxix and Lisinopril go everywhere!

"But, Bill, why wouldn't I just pick things up with my unaffected hand?"

There are a few reasons.

First, a toned or spastic hand can probably still hold a lint roller, and if you have some shoulder control, you can move it. One of the most important tools in recovery is to use your affected limb as much as possible in practical way. Just because it's no longer fully connected to your brain is no reason not to make it work.

Second, especially when I need to get something on the floor, I often need to use my unaffected arm to balance or stabilize myself. If I get in an awkward position and my unaffected hand is busy, it's much more difficult to not fall.

Everything in life can be therapy!

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-06-19

Ep 135 - Your Pet Brain


 

"Your Pet Brain" is a big adorable, plush brain with giant eyes for those of us who could use a spare one. And my girlfriend wanted one. We could both use some extra neurons. As her birthday approached I decided to order one.

Brain shipped in his box (yes, I'm already anthropomorphizing and gendering him). Cathy went downstairs to take care of something and the saw the distinctive box. She felt a wave of mild envy, and thought, "Aww, someone else got a brain."

 Then she took a closer look at the box and saw my name on it. She scooped it up, brought it up stairs and giddily shuffled through our apartment to show me. She was thrilled! I briefly toyed with the idea of making her wait another day until her birthday, but that seemed unfair since the box made it clear what it was.  And I think brain appreciated it too, because the box wasn't super comfortable.

A gray plush brain with big eyes sits on the box he sipped in. The box has an illustration of him.

This week's conversation is wide ranging. While it all starts with how a delightful, big, plush brain can help and empower folks with physical brain damage or psychological it conditions It goes deeper than that. We talk about the importance of play, emotional education, the nature of the brain, the mind and soul, and outsourced manufacturing strategies. Ultimately, it's about how to human.

Anyway, our pet brain is now named Brian and I'm delighted by that combination of wordplay and mundanaity. He's sitting on the couch next to my desk as I type this thinking brainy thoughts and snacking on smart food.

Bio

Aydika James, a woman with long, black hair looks at the camera.

Artist, adventurer, neuro-hobbyist and Humanity’s #1 fan, Engagement Art Producer Aydika James creates things that make the world a better place. (She also makes a killer cocktail.) With global projects ranging from The Kodiak Queen to YourPetBrain.com, to wacky ride-able “art cars”, to private legacy sculptures that tell the story of someone’s life, Aydika is fascinated by how art, play and “edu-tainment” can be used to unite crowds around a shared experience that stimulates widespread change.

A firm believer that any vision can be achieved when we keep asking the question, “How do you paint with people?”... Her wish is to see a world where each person is supported in seeing, being and celebrating their own unique gifts, so we may astound ourselves with how profoundly beautiful we can make this planet, and our experience on it together.

Aydika James snuggles a large plush brain

Miles the Traveling Penguin

Years ago, I had a job that involved travelling 80-12 nights a year across the US. I did really enjoy it. My most frequent travelling companions was Miles, the traveling penguin. He maintained a blog of his travel photos for many years. He was beginning to switch to Instagram just before COVID-19 closed everything.

You can see his old adventures here.

A small, stuffed penguin in a red scarf sits next to a delicate flower petal

Fluffy Photo Shoot

I mentioned the JoCo Cruise while talking with Aydika. This is the fluffy friends group photo from March 2020.

It's all in my Head

One of the themes I come back to time and again is the idea that there is nothing wrong with my arm, and there is nothing wrong with my leg, It's literally all in my head.

And it is. Because that's where my injury happened. That's where the damage is  -- right near the middle cerebral artery on the right side.

When most folks say, "It's all in your head!" they're saying it derisively. They're saying there's nothing wrong and that you're just thinking wrong. They're saying it's not real.

“Tell me one last thing,” said Harry. “Is this real? Or has this been happening inside my head?”

Dumbledore beamed at him, and his voice sounded loud and strong in Harry’s ears even though the bright mist was descending again, obscuring his figure.

“Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?”

Harry Potter and the Deathly Hallows

The things that happen in our head are our reality. They're the only reality we have. The real world is just light waves/particles, sound waves disturbing the air, and pressure on our skin that sends signals to our brain.

Our brain is where that raw data gets turned into our reality. It's where those raw impulses become our experience of the world. It's where we assign meaning to the waves, particles, and impulses.

As stroke survivors, we know this better than most folks.

Mental health, physical health, and spiritual health have fuzzy lines between them, at best. In reality, they are much closer to being the same thing than many folks realize.

How we move in the world is all dependent on how our brains process all that incoming data and compares it to the meaning it assigned to previous rounds of incoming data.

It is a simultaneously scary and empowering thought.

Hack of the Week

Find something funny everyday.

That doesn't mean you have to tell jokes or be funny. Look around you in your home, in your work, in your social media, in your hospital room, wherever you are, Just try to find one thing that can make you smile, chuckle, or laugh every day,

Because when you can laugh, you can learn. Our world can seem absurd at times because it is. Acknowledge that. If you can find one funny thing a day, that can help tremendously.

Links

Where do we go from here?

A gray plush brain with big eyes sits on a couch and appears to eat a bag of chipsBrian the brain relaxes with a snack


Here is the latest episode of The Strokecast