2021-01-21

Ep 120 -- How COVID-19 Causes Stroke with Dr. Jason Hinman


 

Click here for a machine-generated transcript.

We know that COVID-19 causes stroke in many cases. You can recover from the disease and then still have a stroke caused by the virus. Sometimes the only way you find out you have a COVID-19 infection is that you go to the hospital with a stroke and they tell you. In the US, about 1500 strokes a week are caused by COVID-19.

But why is this happening?

We're starting to get some answer about how COVID-19 causes stroke thanks to the work of Dr. Jason Hinman and his colleagues at the University of California Los Angeles (UCLA). In this episode Jason and I talk about his research and the relationship between Stroke and COVID-19.

Bio

Dr. Jason Hinman poses for a professional headshot in his white coat.

Jason Hinman, M.D., Ph.D. - Dr. Hinman is Assistant Professor of Neurology at the David Geffen School of Medicine and Interim Director of the Stroke Program at the West Los Angeles VA Medical Center. Dr. Hinman received his MD/PhD degrees from Boston University School of Medicine.

He completed adult neurology residency training at Ronald Reagan UCLA Medical Center with fellowship training in vascular neurology and stroke rehabilitation also at UCLA. His NIH-funded research laboratory focuses on the molecular pathways at the interface of stroke and Alzheimer's dementia using basic and translational models of stroke and cerebrovascular disease. 

The Model

The technology Jason, Dr. Naoki Kaneko,  and their colleagues use is fascinating. They've taken scans (MRIs, CT scans, Angiograms, etc.) of patients' brains and used those scans to build a physical, 3-D model of the networks of veins and arteries in the brain. This allows them to see just how blood flows and where it struggles.

It also means neurosurgeons who may be planning to fix a patient's aneurysms with a stent or coil could practice on an actual model before going into the patient's brain.

With Jason's research, they line the fake vessels in their model with human epithelial cells. These cells are the same ones that line our real blood vessels. As a result, they were able to observe the way the virus interacts with the blood vessels. Then they learn how that interaction can lead to clots and other blood vessel damage, which, in turn, causes a stroke.

Here's a link to the study: https://www.ahajournals.org/doi/pdf/10.1161/STROKEAHA.120.032764

And here's a link to the press release about the study: https:/newsroom.ucla.edu/releases/covid-19-increased-stroke-risk

The Solution

If you've survived a COVID-19 infection, how can you reduce your chances of having a stroke? Right now, the best research says to eat right, exercise, hydrate, and get good sleep.

In other words, do the things the medical establishment has been telling us to do for years. There's no magic solution. We just have to do the hard work of doing the right thing. Which, of course, is also how you reduce your chances of having a stroke even if you haven't had COVID.

I know. It sucks. But at least it's cheap.

BEFAST

More people are having stroke due to COVID-19. Younger people are having strokes. Many of these strokes can be treated and result in minimal disability if the person gets to the right hospital quickly enough.

So make sure everyone you know can recognize a stroke. Teach them to BEFAST.

Sudden loss or change in Balance, Eyesight, Facial droop, Arm control, Speech or language means that it is Time to call an ambulance.

Stroke symptom graphic

The Important Takeaway

Don't catch COVID-19.

The impacts are long lasting. Even if you survive (and most people will) it still damages your blood vessels, your heart, your kidneys, your lungs, and more. If you survive, the Grim Reaper gets another bite at that apple through COVID inspired stroke and other conditions.

Mask up when you go outside. The mask isn't to protect you. It's to protect anyone else that you see and their families. The fact is there is no way to know for sure if you are infected right now. You could be. I could be. Since symptoms may not show up for a couple weeks, we can't know. Mask up so you don't kill someone or give them a stroke.

Minimize social contact. When you do have that contact, keep your distance. Avoid crowded indoor spaces. If you see someone without a mask, stay away from them. If they get offended, so what? Let them. Afterall they're the ones trying to infect and kill you.

Take advantage of delivery and curbside pickup. Work from home if you can.

Not everyone has those options. Respect people who do have to go out to work by respecting rules intended to reduce transmission.

Many of us don't have to stay locked up 24-7 for months on end. We can go out on occasion, but we have to be responsible about it.

Hack of the Week

It's winter, my Dysport (Botox alternative) is wearing off, and we've had a stressful start to 2021. All that adds up to my tone and spasticity getting stronger and tighter.

When I want to undo that fist I make by default, I could just forcefully  open my fingers, but that just encourages more resistance.

What's for effective is to bend my wrist down (flexion) in the direction the wrist tone want to go anyway. When you bend your wrist down, that naturally encourages your fingers to open up.

The reason for that is that the finger extensors -- the muscles that open your fingers run from your forearm over the top of your wrist and the back of your hand. Bending your wrist down causes them to pull on your fingers, opening your fist.

Give it a try.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-01-14

Ep 119 -- Stem Cells and Thrombectomy with Dr. Dileep Yavagal


 

Click here for a machine generated transcript.

Mission Thrombectomy 2020+ is an initiative to double the number of mechanical thrombectomies around the world. This initiative, driven by Dr. Dileep Yavagal, aims to help more stroke survivors, communities, and economies in the developed and developing world by reduces the level of disability cause by stroke.

We talk about that initiative this week, but first we get an update on Stem Cells.

Dr. Yavagal was a guest on Strokecast back in episode 42. We talked his work in stem cell research to treat acute stroke patients. The work was promising but still experimental.

It still is.

Dileep gives us an update on the progress and research protocols involving the treatment. The bottom line is there is NO approved stem cell therapy in the US today. Research has not sufficiently demonstrated safety and effectiveness. But they're working on it.

The only stem cell therapy available for stroke is experimental in research studies. If you choose to participate in those studies, great! Research studies provide the treatment for free.

If someone tries to charge you or collect a fee for stem cell therapy, run, hobble, or wheel away as fast as you can. It is not a legitimate therapy at this time.

Bio

Dr. Yavagal headshot

Dr. Dileep R. Yavagal, MD, FAHA, FAAN, FSVIN is the Director of Interventional Neurology and Co-Director of Neuroendovascular Surgery at the University of Miami & Jackson Memorial Hospitals and Clinical Professor of Neurology and Neurosurgery at the University of Miami School of Medicine. He has recently been appointed to lead the Neurological Cell Therapy Platform at the Interdisciplinary Stem Cell Institute at the University.

Dr. Yavagal is an international thought leader in endovascular therapy for ischemic and hemorrhagic stroke as well as a pioneer in the translation of intra-arterial delivery of cell therapy for stroke. He was the national Co-PI of the first US multicenter clinical trial of Intra-arterial delivery of autologous bone marrow stem cells for ischemic stroke: RECOVER Stroke. He was on the on the steering committee of the SWIFT-Prime and MR RESCUE, both landmark randomized clinical trials of endovascular stroke therapy. He co-authored the landmark 2015 AHA Endovascular Stroke Therapy Guidelines as well as the recent groundbreaking DAWN stroke trial in the New England Journal of Medicine. He is the founder and Past-President of the Society for Vascular and Interventional Neurology (SVIN). He has also co-authored the AHA Policy statement on Stroke Systems of Care.

Dr. Yavagal has received several state and federal research grants to study endovascular stem cell therapies for ischemic stroke using small and large animal models of stroke in his research laboratory. He is considered a pioneering researcher the field of intra-arterial delivery of stem cells in stroke therapy.

Dr. Yavagal is Chair of the Society of Vascular and Interventional Neurology’s (SVIN) global campaign called Mission Thrombectomy 2020+ (MT2020+) and is leading a no-holds-barred charge to accelerate access and remove geographic disparities to mechanical thrombectomy (MT), an interventional treatment for a common type of disabling stroke.

MT2020+ is calling on public health policymakers to increase physical, financial and diagnostic access to MT for patients with disabling strokes.

Stem Cell Updates

Dr. Yavagal's research is about the use of stem cell therapy to treat stroke patients in the first few days of their stroke -- the acute phase. The process his team is exploring involves placing the donor stem cell at the point of injury by using a catheter through the groin or wrist. This method is similar to his other key projects around mechanical thrombectomy. Both involving similar equipment -- a catheter the surgeon navigates through the patient's arteries to remove or deliver a payload. And it takes place in an angio suite, which is an operating room with special imaging equipment.

In a study with the patients' own cells, his team has demonstrated safety, and they have seen results indicating effectiveness, too, even though the study wasn't designed for it.

Recent large animal studies have demonstrated that the process is safe. The next step is to do studies to demonstrate the safety of donor stem cells with humans. Then they can explore effectiveness.

At this point (January 2021) there are no FDA approved stem cell therapies for stroke patients. But we're getting there.

Mission Thrombectomy 2020+

Mechanical Thrombectomy is the gold standard for the treatment of large vessel ischemic stroke, especially when combined with tPA.

In mechanical thrombectomy, a surgeon runs a catheter from the femoral artery in the groin or radial artery in the wrist. They navigate to a clot in the brain and drag it out to restore blood flow.

tPA is a clot busting medicine that works to break up clots in the body to restore blood flow.

When both treatments are used, patients experience much better outcomes.

The challenge is they have to be used quickly. Patients have only 90-minutes to 24 hours to get treatment. The actual window varies widely based on the details of the patient's stroke, MRI, general health, and the specifics f the hospital they get to.

Most of the time, the window is 3 hours That window has been growing though.

When I had my stroke in June of 2017, the window was much smaller. I woke up with symptoms so I had my stroke sometime between 1:00 AM and 7:00 AM. That put me outside the window for the interventions at the time. Six months later the window expanded, and it continues to get better.

Would my right MCA at the basal ganglia thrombus been eligible for removal a few months or a year later if my stroke had just held off a little longer? I'm not sure I want to know.

Mission Thrombectomy 2020+ is an initiative led by Dr. Yavagal to double the number of thrombectomies performed around the world in both developed and developing countries.

A large part of the work involves creating national and regional committees to work with local health ministries. The committees educate politicians, government officials, administrators, and health care influencers on the benefits of mechanical thrombectomy for patients and society.

Disability and shortened life is expensive for a community. It's expensive from the loss of the inherent value of human life and quality of life for many survivors. But it's also expensive in sheer economic impact.

Long term treatment costs money. Loss of worker productivity costs money. Loss of productivity from caregivers costs money. The opportunity cost from untreated stroke is enormous.

In many cases. Prompt mechanical thrombectomy can save lives, reverse some stroke damage, and dramatically reduce the number and severity of disabilities a survivor will live with.

When you can make a case for reducing both human and economic costs, you've got a pretty compelling case.

That's the case Mission Thrombectomy 2020+ makes around the world.

The Jet Plane Comparison

Thrombectomy isn't cheap to start up. You need Angio Suites -- specialized emergency room with specialized imaging equipment. It requires super tiny catheters to go through the blood vessels to retrieve the clots. And it requires expert training for neurosurgeons, nurses, and all the other folks who make hospitals work.

How can developing nations or less prosperous communities in developed nations afford all that?

If they see the value, they'll find a way.

Dr. Yavagal compares it to jet travel. Smaller communities or developing nations still often have air service. That's expensive, too. Airport runways aren't just blacktop highways. Airport infrastructure is much more complex and expensive than it looks. Airplanes are expensive. Maintenance on aircraft is expensive. Staff to fly and repair planes require specialized skill.

How can so many places afford it?

Because the see the value air travel brings. It's critical infrastructure to develop and prosper. And it brings tremendous benefits in both human and economic capital.

They find the money because they see the value.

And that's the goal of Mission Thrombectomy 2020+.

Mission Thrombectomy 2020+ has produced a whitepaper talking about the importance of Thrombectomy and why a community needs to make the treatment available. You can read it here: Mechanical Thrombectomy for Acute Stroke-Building Stroke Thrombectomy Systems of Care in Your Region: Why & How?

Hack of the week

Find your ducks.

We talked with Sarah Parsloe in Episode 111 and Bill Torres in Episode 110.

Sarah tells the story of how Bill feeds the ducks every day. Many stroke survivors struggle with being the recipient of care. This is especially true for those of us who were always trying to take care of others before our strokes. When we're not able to do that anymore, it can be tough.

Bill found the ducks that needed help after his stroke. Even as he worked to recover, each day he fed the ducks at a local pond. He still does. Taking care of the ducks is a great way to help out after stroke -- it's a way to feel needed and to put value back into the world. Being able to contribute -- to make a difference -- is something we all need.

So find your metaphorical or literal ducks and go feed them.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2021-01-02

Ep 118 -- Surprise Brain Tumor and as Post-partum Stroke With Ruth Carroll


 

A machine generated transcript is available here

A 20+ year old hidden brain tumor made itself known just before Ruth Carroll gave birth. A stroke followed the birth of her son and set Ruth on an unexpected journey as a new mother and young stroke survivor.

It's been a few years since all that happened, and I'm delighted to speak with Ruth in this episode. There is something so calming in her demeanor -- even when she's talking about horrific ICU hallucinations. We talk about that, hydrotherapy, family, and more.

Bio

Ruth Carrol stands in a field holding a bouquet of flowers and a glass of wine.

Ruth Carroll is 36 years old. She's from County Cork in Ireland but live in County Dublin as she married a Dub! They have a son who is 3 & half years old called Bobby. 

Prior to this sudden shift in her life direction, Ruth worked in marketing as a brand manager at McDonalds in Ireland

Ruth was diagnosed with a brain tumor a week before Bobby was born. Her pregnancy hormones caused the tumor to grow very quickly & suddenly & this unfortunately caused her stroke the very next day after Bobby was born.  (left side affected)

Ruth has made a good recovery but still has a long way to go. Ruth's neuro surgeon told her he thought she would be bed bound for the rest of her life. She showed him! Ruth is now walking independently. Her left arm & hand is still paralyzed but Ruth  continues working hard on getting them back!  

Ischemic does not mean clot

Most ischemic strokes are due to a clot forming in a blood vessel, so most people think that's what ischemic means. It's not quite true, though.

Ischemia actually refers to a lack of oxygen getting to the cells. Most of the time that's due to a clot, but not always. In fact, it's sometimes therapeutic, like in Remote Ischemic Conditioning which we talked about in episode 55.

In Ruth's case, her stroke was ischemic, but there was no clot. Instead, her brain tumor wrapped around an artery from the outside, cutting off the flow of blood to that part of her brain.

Most treatments for ischemic stroke involve clot busting medications like TPA or clot removal via mechanical thrombectomy. Neither of those therapies would have helped Ruth because there was no clot to break or remove.

They had to pursue surgery to remove the tumor and restore the flow of blood.

Hydrotherapy

Hydrotherapy is an important part of Ruth's recovery program.

Hydrotherapy typically takes place in a special heated pool with a therapist who can help the survivor safely complete the exercise program.

The warm water helps the muscles relax and relieve tone and spasticity. The buoyancy helps reduce balance issue so the survivor can focus on their movement. The water resistance ensure the muscles still get a good work out. And the water reduces the risk of injury from a fall. Finally, a hydrotherapy pool will typically have the accessibility equipment to make it safe for a person with disabilities to enter and leave the pool.

Special pools and specially trained therapists help survivors get special results.

Hack of the week.

Mirroring what Kristen Aguirre said in episode 114 (http://Strokecast.com/GratefulKristen), Ruth suggests looking for shampoo and related products that have a pump.

When you're already living with paralysis and working hard in the shower to, you know, not fall, opening bottles and pouring soap without spilling the product or yourself is exhausting. So don't do it.

When you choose your product, look for bottles that come with pumps. They make it much easier to dispense the product.

If your favorite product doesn't come with a pump option, add one yourself. You can find generic bottle pumps on line.

Here's one example (affiliate link):

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Links

Where do we go from here?

  • Follow Ruth on Instagram at Ruthie_Carroll84 to join her on her journey and see adorable pictures of her family.
  • For more stroke related books, gadgets, gizmos, and bottle pumps, visit the Strokecast Gift Guide at http://Strokecast.com/GiftGuide
  • Share this episode with a friend, colleague, or relative by giving them the link http://Strokecast.com/Ruth
  • Mask up and stay safe in 2021
  • Don't get best…get better.


Here is the latest episode of The Strokecast

2020-12-24

Ep 117 -- Industrial Design and an Art Tram


English transcript here.

I read through my daily Google News Alert about stroke a couple months back and came across an article about the Mobile CT scanner. It's designed to mount in ambulances and aircraft. It helps the medical team confirm a stroke diagnosis and start treatment even before the patient gets to the hospital.

I reached out to one of the designers and that ushered me into the fascinating world of Drs. Nyein Chan Aung and Thinn Thinn Khine.

Bio

Drs. Nyein and Thin Thin Khine cuddle together in front of a tram decorated with an image of Thinn Thinn drinking tea.Photo by James HH Morgan

Dr. Nyein Chan Aung sit in an office space smiling at the camera.

Nyein is an industrial designer, design researcher and artist. He has given himself a mission to "Make Cool Stuff", and has been following that mission since 2005. As a result, he's won several major design awards for products in aerospace, healthcare and camping. He's currently a senior design researcher at Monash University's Design Health Collab, where he oversees the design of high-impact healthcare services and products.

Dr. Thinn Thinn Khine stands in front of a white picket fence with a stethoscope draped over her neck.

Thinn Thinn is an endocrinologist specializing in geriatrics endocrinology. She's been practicing medicine since 2006, and has worked in Myanmar, Jamaica, the US and Australia. She received multiple scholarships and travelling fellowships to be trained as a physician-scientist in the field of the endocrinology in ageing.

Thinn Thinn is also a visual artist. She's exhibited her work in multiple solo art exhibitions in Victoria, and raised funds to support geriatric medicine, aged care mental health and palliative care departments in Monash Health and Barwon Health.

Mobile CT Scanner

The mobile CT Scanner, developed by Monash University and Micro-X mounts in an ambulance, aircraft, or other vehicle. When the EMTs suspect a stroke, they can bring the patient to the vehicle, do the scan, and start heading to the hospital.

While they're on the way, they can transmit those image on ahead so the hospital staff knows what's happening and can stage the appropriate resources. A remote neurologist could even instruct the EMTs to begin the appropriate treatment.

You can read more about the system here: https://www.monash.edu/mada/news/2020/new-ct-scanner-speeds-up-stroke-diagnosis

Palliative Care Unit

The death of Thinn Thinn's mother from stroke inspired the couple to make things easier for others going through these circumstances.

The design the Palliative Care Unit. It's a piece of furniture that can be rolled into a patient's room so family members can sleep there when the COVID-19 situation  is under  control. In the interim, it's a place to support video conferencing and personal items from the patient's home.

You can see more in this video:

https://www.youtube.com/watch?v=0S1ooI2IHcE&ab_channel=NyeinAung

Art Tram Project

Melbourne invited artists to submit work to be featured on trams (street cars) that travel around the city in 2019. It was the perfect project for Nyein to submit the portrait he did of Thinn Thinn sipping tea at the Supper Inn Chinese Restaurant.

You can see Thinn Thinn's face zipping around the city larger than life in this video:
 

https://www.youtube.com/watch?v=eYBcERruqkU&ab_channel=MelbourneInternationalArtsFestival

Books

Nyein referenced a couple book in our conversation.

Chris Voss is a former FBI hostage negotiator who's written a book about how to negotiate in everyday life.

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Walter Isaacson is a historian who wrote about Leonardo da Vinci and The Last Supper.

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(Affiliate links)

Hack of the Week

Thinn Thinn's recommendation is to consider the whole person. Regardless of the condition leading to disability, we are all, first and foremost, people with lives, history, families (genetic or chosen), and dreams. It's easy to get caught up in the specific medical details of a brain injury, but focusing exclusively on that misses the core needs of the person. Whether the medical situation is recovery oriented or palliatively oriented, the whole person is what matters.

Links

Where do we go from here?

  • Check out Nyein and Thinn Thinn's website to learn more about this power couple.
  • For more books and gadgets, check out the Strokecast Gift Guide at http://Strokecast.com/GiftGuide.
  • Don't get best…get better.

 


Here is the latest episode of The Strokecast

2020-12-07

Ep 116 -- Teaching Yoga after a Stroke with Leslie Hadley


(Click here for a machine generated transcript)

Leslie Hadley went from corporate executive to Yoga  teacher to stroke survivor and back to yoga teacher. Along the way, she became an author, life coach, and tapping teacher (not the dance -- the emotional freedom technique).  She shares her story this week, and I share a bunch of my own updates.

You can find Leslie's book on Amazon at http://strokecast.com/book/AwakenFromIllness (affiliate link)

Bio

From Leslie's website:

Leslie Hadley headshot against a gray background

How long have you been doing what you do, and how did you become a Transformational Teacher?

To answer this question, it’s probably best that I share with you a defining moment, and resulting compelling story. I was a single mom, divorced from an abusive relationship, in management, working in a high paying corporate job with people from all over the world. I was beyond shocked when one day they laid me off with two weeks’ notice. They didn’t pack my stuff so the 2 weeks gave me creating time! I was teaching yoga part-time during all of this, and my daughter was a freshman in high school.  I was transferred all over the country, but this time, I promised her I wouldn’t relocate again. Initially, I was in planning mode. Once the adrenaline from that wore off, I felt rejected, afraid and overwhelmed. All I could think about was, “What’s next” “How am I going to pay my bills?” My self-esteem suffered. I am a survivor, so I pulled up my lady bootstraps and got to work. In hindsight, I realized getting laid off from my corporate job was a gift. I liked the income, so I never would have left on my own. I know in my heart if I stayed in corporate I would have never lived out my passion and purpose; but just as important, I have learned about me. I was working 70 hours a week. On weekends, my daughter would come with me to the office. She learned to fax at 5 years old! My daughter once told me she never wanted to do what I did - work 70 hours a week and sell my soul. To this day, she has not and has instead chosen to work with kids as a librarian. I taught her to follow her dream and live her passion. Sometimes what seems tragic at the time is just the wake-up call we need.

I made a commitment to myself, as I did when I started my yoga practice 20 years ago. My commitment was to heal myself from numbness in my legs. Yoga helped me heal, and I was determined! I will turn my yoga passion and teacher training into teaching classes. I made a list of how I was going to do it. In a short amount of time I was teaching 35 classes a week! I was also practicing Thai yoga massage and became a Reiki Master. In spite all of my hard work, I wasn’t making enough money teaching. I wrote in my journal that I would pay my bills and more. I manifested much more money, sharing my gift and helping people. I was actually living my passion and sharing peace and joy.

Five years after I started teaching Yoga, I felt in my heart that there a missing piece in my life. I was passionate about what I was doing, but I felt I could still do more to serve women. I decided to enroll in a nutrition and coaching program. I loved all aspects of the program but coaching really spoke to me. After graduation, I enrolled in a transformational coaching program - Level 1, then Master. Yes, once again, my life changed, and I found that I loved experiencing the transformation in myself and witnessing struggling women transform themselves. The freedom to be you, empowered but easy! Today, I live in compassion land.

The shocking experience of going through divorce, raising my daughter at a very young age, being laid off from my high paying corporate job, healing physically and emotionally brought me to where I am today – coaching people like you on exactly what to do to gain self-esteem, have more love, trust and caring in your lives, so you can gain more happiness, healthy lifestyle and have hope for the future, called empowerment!

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Feldenkrais

Fedenkrais is a form of therapy that's been around for several decades. I'm not sure I would describe it as mainstream, but it does have a lot of enthusiastic supporters in the survivor and therapist communities.

https://www.youtube.com/embed/B21G4lxbwHQ

What's It Like?

I recently appeared on Hannah's What's it Like podcast. The show features folks who have been through a significant life experience and who want to share what it was like.

You can find the show in your favorite podcast app, or just listen right here:

Strokecast and OneNote

OneNote is a virtual 3-ring binder. I've been using it for nearly 20 years in various capacities. I also use it to manage this show.

I recently wrote a blogpost that goes deep into this process. You can read about it here: http://Strokecast.com/OneNote.

Strokecast Gift Guide

If you're looking for gifts for yourself or someone else in your life, check out the Strokecast Gift Guide.

You'll find books by Strokecast guests, other books related to stroke, tools to aid in recovery, and tools to make life a little bit easier.

All these items are available on Amazon through my affiliate links so check it out at http://Strokecast.com/GiftGuide.

Hack of the Week

A wagon is a great tool for getting stuff done. With hemiparesis, it's even more useful. 

First, when I use the wagon, I don't need to use my cane. The wagon gives me the stability I need

But really, the key is how I use it for just simple things:

  • Bringing packages up from the lobby
  • Bringing in groceries from the car
  • Moving larger things around the apartment

Basically, if it takes two hands or arms to move, I'm likely to use the wagon.

Plus it's great even for folks who don't live with disabilities.

This one is very much like  wagon we just picked up: http://Strokecast.com/hack/wagon

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2020-11-10

Ep 115 — Stronger After Stroke with Peter G. Levine


“Stronger After Stroke” is one of the most recommended books for stroke survivors by stroke survivors. It is a roadmap for recovery after leaving the hospital. Peter G. Levine talks about the importance of repetition to neuroplasticity. He dives deeply into Dr. Edward Taub’s Constraint Induced Therapy, and what stroke survivors can learn from musicians and athletes.

And Levine joins us in this episode of the Strokecast.

Bio

(From Pete’s Amazon author page)

Peter G Levine Stands in front of a tile wall wearing a black shirt and facing the camera.

Peter G. Levine is a researcher, author, clinician, adjunct professor, and science communicator. His career in clinical research has been dedicated to finding and reporting on the best systems for driving post-stroke brain plasticity.

For two decades Levine has tested emergent stroke neurorehabilitation options including EMG-based gaming, wearable robotics, mental practice, functional electrical stimulation, transcranial magnetic stimulation, and modified constraint-induced therapy (mCIT). He was the lab co-director at the University of Cincinnati Academic Medical Center, and a Research Associate at Kessler Institute for Rehabilitation. He continued his clinical research with The Ohio State University B.R.A.I.N. lab.

Levine communicates what he’s learned in research through his blog, dozens of magazine and journal articles, hundreds of professional talks on stroke recovery and brain injury, as well as his book, Stronger After Stroke.

Constraint Induced Therapy

Constraint Induced Therapy (CIT) at the most basic level, is about encouraging the survivor to use an affected limb by forcing its use. At one level, we all know we’re supposed to use our affected limbs as much as possible. Of course it’s not always easy.

In my case, I try to do something like flip a switch or open a door three times with my left hand. After three tries, I let myself use my unaffected limb. That way I get the practice and I don’t get too frustrated when I can’t do something yet.

CIT takes that to the next level. It involves restricting the unaffected limb with a sling or other mechanism to force the use of the affected limb for hours a day of therapy. It should be done under the supervision of a therapist because there is certainly a risk of falling or other injury when the unaffected limbs we rely on more than ever are suddenly restricted.

But forcing deliberate use of an affected limb is the best way to bring it back on line.

Practice

One of the key themes we talked about was the importance of practice and repetition. Musicians and athletes (like Peter G. Levine and Stephen Page)  know the importance of repetitive, deliberate practice.

Professionals and amateurs who want to be the best they can, practice. And the enjoy it. Spending hour after hour working on a segment of a song or to shave half a second off a run is how they build the skills they need and want to acquire.

Malcom Gladwell in his book “Outliers” popularized the idea that to develop expertise in something takes 10,000 hours of practice. And deliberate practice at that. It’s a theory based on the work described in The Cambridge Handbook of Expertise and Expert Performance.

Developing skills and particular motions after stroke is similar. It requires more and more repetitions. As Pete shares, it takes 1200 repetitions to develop a single motion in a single joint. Of course walking requires dozens of joints, muscles, and motions. So multiply all those 1200s against one another, and get to work!

Homunculus

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

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

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

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

Four Lessons for Recovery

Pete summed up his approach and book in 4 lessons.

  1. Recovery takes a lot of repetitive practice.
  2. Recovery takes a lot of visualization.
  3. Don’t expect miracles.
  4. Don’t let the perfect be the enemy of the good.

Hack of the Week

Pete uses a strap with Velcro as a simple, low-cost AFO. It’s a tool that helps lift the toe to make walking smoother and combat foot-drop.

The nice thing about a solution like this is that it also gives you access to a wider assortment of shoes while reducing the risk of tripping.

Links

Stronger After Stroke Blog

https://recoverfromstroke.blogspot.com/

Stronger After Stroke on Amazon

https://amzn.to/2U6MBsD

Pete on Research Gate

https://www.researchgate.net/profile/Peter_Levine2

Stephen Page

https://www.medbridgeeducation.com/instructors/stephen-page-ot/

Kessler Institute

https://www.kessler-rehab.com/

Taub Therapy Clinic

https://www.uabmedicine.org/patient-care/treatments/ci-therapy

Dr. Edward Taub

https://www.uab.edu/cas/psychology/people/faculty/edward-taub

Dr. Jill Whitall

https://www.umaryland.edu/commencement/archived-events/commencement-2018/speakers-and-honorees/jill-whitall-phd.php

Signe Brunnström on Wikipedia

 

https://en.wikipedia.org/wiki/Signe_Brunnstr%C3%B6m

Brunnstrom Stages of Stroke Recovery

https://www.neofect.com/us/blog/understanding-the-brunnstrom-stages-of-stroke-recovery

Modified Ashworth Scale

https://www.sralab.org/sites/default/files/2017-06/Modified%20Ashworth%20Scale%20Instructions.pdf

Homunculus

https://en.wikipedia.org/wiki/Cortical_homunculus

Brian Harris on Strokecast

http://Strokecast.com/MedRythms

Where do we go from here?

  • So check out Pete’s book  here and blog here.
  • To get better, continue practicing and doing those exercises your PT and OT recommended.
  • If you think you reached a plateau, try some different exercises, and keep going.
  • Share this episode with someone you know by giving them the link http://Strokecast.com/StrongerAferStroke
  • Don’t get best…get better

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.

*Amazon links are affiliate links. I may receive compensation for purchases made through them.


Here is the latest episode of The Strokecast

2020-11-02

Ep 114 -- Naps, Gratitude, and Yoga with Kristen Aguirre


Kristen Aguirre was working as a TV reporter and anchor in Denver, CO,  when she had her stroke. What followed, of course, changed her life. She spent months in rehab, eventually returned to the air. She has since left that role and now focuses on her recovery, her workouts, and working with other survivors. We cover all that and more in this episode.

Bio

Kristen Aguirre is an emmy nominated latina journalist turned young stroke survivor. At the age of 31 Kristen suffered an ischemic stroke. It left the entire left side of her body paralyzed. Her doctors told her she would probably need a wheelchair the rest of her life.

Despite the prognosis Kristen kept pushing and never lost hope. After months in the hospital and therapy, Kristen is now back to running, lifting weights and rebuilding her career.

She uses her story to motivate others to never stop pushing and how to hold onto hope in daunting times.

Gratitude

One of the topics Kristen talks about is gratitude. As part of her daily prayer and meditation ritual she makes certain to find something to be thankful for each day. At the very least, we’re here. We woke up today. And that’s the start of any new amazing journey.

Neurofatigue

After a stroke, naps take on new importance. Our brains, working with fewer optimized resources, burn a lot more energy.  Plus, a lot of the work of recovery and neuroplasticity can only happen as we sleep. I talked about it in the episodes on this page.

It can be a big thing in a person’s life. While I don’t deal with it as much these days, it still pops up from time-to-time (usually when I’ve been getting less sleep for other reasons…go figure). If I have another injury it will come roaring back with a vengeance.

When it does, it’s not like being tired. There’s no reserve bank of energy to dig into. There’s not an option to push through, Sleep suddenly becomes essential.

Part of living with stroke is not having a reserve pool of resources or bunch of spare spoons. Naps are the natural result of looking into that pool and finding it empty.

Like Minded

Kristen teaches a women’s empowerment workshop in Jane Connely’s Like Minded program. Several Strokecast guest teach in that program. You can find those interviews with Jane, Joe, Ella, Vince, and now Kristen at Http://Strokecast.com/LikeMinded

To learn more about this program for brain injury survivors that comes from the mind of Heal the Brain with Jane, visit the program here:

https://healingthebrainwithjane.com/membership-purchase

Beauty and Her Brain

 Kristen is starting her own podcast focused on issues women face in stroke world. Kristen herself talked about navigating post stroke life and balancing her deficits with her appearance and with getting comfortable in her new skin.

While she’s working on the show, she’s already profiling some of these amazing women on the Instagram page for the show here: https://www.instagram.com/beautyand_herbrain/

Once the show is live I look forward to listening to it and adding it to this list of stroke-related podcasts.

Links

Kristen Aguirre on Instagram

https://www.instagram.com/kristenaguirre

Beauty and Her Brain on Instagram

https://www.instagram.com/beautyand_herbrain/

Kristen Aguirre website

http://kristenaguirre.org

Kristen on LinkedIn

https://www.linkedin.com/in/kristenaguirre/

Kristen on Muck Rack

https://muckrack.com/kristenaguirre

Kristen on Twitter

https://twitter.com/kristenaguirre

Craig Hospital

https://craighospital.org/

Talking Yoga

https://www.talkingyoga.com/

Like Minded with Heal the Brain with Jane

https://healingthebrainwithjane.com/membership-purchase

Like Minded Instructors on Strokecast

http://Strokecast.com/LikeMinded

Neurofatigue on Strokecast

http://strokecast.com/tag/neurofatigue/

Other Stroke Podcasts

http://Strokecast.com/StrokeRelatedPodcasts

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.


Here is the latest episode of The Strokecast

2020-10-19

Ep 113 -- Global Consciousness with Thriller Author Bevan Frank


What if you could change the world with your thoughts? Or get enough people together thinking the same thing to change the fabric of reality? Bevan Frank goes deep on this idea in his debut novel.

Bevan published his first novel, The Mind of God in 2015. It’s a thriller in the spirit of Dan Brown where he explores the idea of Global Consciousness. And then his world turned upside down with a stroke. We talk about that concept and the power of taking care of a dog in this episode.

Bio

Bevan Frank stands outside in front of a pond facing the camera

Bevan Frank has a BA degree in English and Political Studies as well as a postgraduate LLB law degree, both from the University of Cape Town.

After qualifying as an attorney Bevan decided to follow his passion and opted down the path of writing and editing. He has worked as a business magazine editor, journalist, writer, plain language practitioner and communications consultant. His articles have been published in numerous publications locally and globally.

Bevan lives in Hertfordshire with his wife and children. Bevan’s award-winning debut book The Mind of God (A Thriller Novel) is an Amazon #1 Best Seller. He is currently recovering from a stroke and hopes to get going with his second thriller once he emerges from the haze.

Amazon Music and the Strokecast

Strokecast, like thousands of other podcasts, is now available on Amazon Music. This doesn’t affect where you listen today; it just gives you one more option for how you and/or your friends can consume the podcasts you love. You can listen to the show here: http://Strokecast.com.AmazonMusic

Hack of the Week

Bevan suggests getting a dog.  Lexi early on gave Bevan a reason to get out of bed in the morning. He had to feed and walk the dog. And if that’s all he could do in a day, at least it’s a start.

After stroke when we are thrust into the world of disabilities, we suddenly may have people who take care of us. And that’s great; we need it. But it can also be a hard transition if we’ve led the kind of life where we take care of others. To suddenly not be in that position anymore while we also have to reconsider what it means to the career we may no longer be able to pursue or the family we may no longer be able to support is hard.

Plus we may feel that strangers and people we know are now looking at us differently. The see us as a victim, a patient — a cripple. We may feel they look at us with pity.

A dog does none of that. A dog is just happy to be there with you. And it gives you a reason to get out of the bed. Even if other people tell you not to worry about them, you still have the responsibility of caring for that dog to the best of your ability.

A couple weeks ago, I talked with Bill Torres and he talked about feeding the ducks every morning. It’s the same concept. Bill and Bevan made caring for another creature a part of their recoveries.

Here’s a picture of Lexi.

Lexis is a small brown and black Jack Russel terrier dog.

Links

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.


Here is the latest episode of The Strokecast

2020-10-02

Ep 112 -- Stroke Education Resources (Listener Q&A)


Speech Language Pathologist Lauren Schwabish reached out to me on Instagram with a few questions. I answer them in this episode.

If you  have questions you’d like me to address, you can email Bill@Strokecast.com or message me on Instagram where I am Bills_Strokecast.

Do you have tips on what education was most effective for you, or your survivor community?

One of the first places I went was to podcasts. I found the Enable Me show from Australia and the aphasia-centric Slow Road to Better first, but not much else. It’s why I eventually started the Strokecast. I wanted it to be the podcast I wished I had found when I was in the hospital.

Now, of course There are a lot more. If you want to hear more stroke related podcasts, visit http://Strokecast.com/StrokeRelatedPodcasts

I also learned a lot from books. The first two survivor books I read were My Stroke of Insight by Dr. Jill Bolte Taylor and Healing into Possibility by Alison Shapiro.

I’ve also learned a lot reading memoirs from Strokecast Guests Christine LeeTed BaxterMarcia MoranJulia Fox GarrisonJanet Douglas, and Debra Myerson. You can hear my interviews with them and the stroke adjacent authors I’ve interviewed here.

I also learned a lot diving into books about neuroplasticity and anatomy reading The Brain’s Way of Healing by Norman DoidgeRewire Your Brain by John Arden, and Anatomy and Physiology Made Easy by Phillip Vaughan.

If you use a Kindle or other eReader, be sure to check with you local library’s website because you may be able to check out eBooks without ever leaving the house.

And, of course, doctors and therapists are a great resource. Ask them lots of questions to learn more. Most of them love talking about this stuff.

What educational opportunities helped you the most as you left the hospital? What didn’t?

Creating my own content was quite helpful. I began posting detailed descriptions of stroke stuff to Facebook. One of the best ways to learn something is to teach it. It reinforces the details, and it also helped me realize when I didn’t understand something and needed to ask more questions.

Plus it engages other parts of the brain. It’s one thing to take in information, but then to teach it you have to route that information to the motor functions of the brain so you can type and the language center so you can choose the words.

Support groups in the pre-quarantine days were also a fantastic place for more information. Plus you’re among people who get it. At a support group, folks understand what you’re going through.

While staying inside, you can also join several of the dozens of stroke related Facebook groups. Be sure to search for them. These groups may have a few members or thousands of members. The leadership and members will have a huge impact on the character of the group, so try a few to find the ones that best mesh with your personality.

Finally, check out #Stroke and #StrokeSurvivor on Twitter and Instagram. I’ve found that Twitter is likely home to more professionals whereas Instagram is more about the journeys of individual survivors.

I’m preparing a lecture on how to best advocate for yourself when communicating with health care providers. Any hot takes?

First of all, you have to advocate for yourself. Ultimately you are responsible for your own recovery and getting the support and care that you need.

When you go into the doctor’s office, remember they are getting paid to provide the care. This is a business meeting. Like any business meeting, that means you need to prepare in advance, take notes during, and follow up on your activities afterwards.

Prepare ahead by assembling key information like:

  • Blood pressure readings
  • Symptoms
  • List of medications
  • Questions you want answers to.

You can even provide this information ahead of time to help them prepare.

During your appointment, feel free to take notes. You can also bring a partner with you to help retain information. You can even ask if you can record the appointment. They might say no,  but you can still ask.

You also need to recognize that the medical field is highly silo’d. By that I mean they are experts in their narrow field, but they may not be as familiar with other fields. That means you may be relaying information from one provider to another. You may be teaching your primary care physician about stroke or carrying information from a neuropathologist to a ph6ysiatrist.

Finally, if you’re not comfortable with a specific provider, get a different one.

Hack of the Week

Patricia Geist-Martin (from Falling in Love with the Process Part 2) shared another technique that Bill Torres (from Falling in Love in the Process Part 1) used to deal with spasticity in his hand.

He piled books on top of his hand while watching TV. Straightening out his finger and then putting weight on top was one reason his hand is no longer locked in a fist.

Links

Bill on Instagram https://www.instagram.com/bills_strokecast/
Lauren Schwabish on Instagram https://www.instagram.com/lauren.schwabish/
Stroke Podcasts http://Strokecast.com/StrokeRelatedPodcasts
My Stroke of Insight https://www.amazon.com/My-Stroke-Insight-Scientists-Personal/dp/0452295548/ref=sr_1_1?crid=3AWMWJDQM5DKB&dchild=1&keywords=my+stroke+of+insight&qid=1601626888&s=books&sprefix=stroke+%2Cstripbooks%2C213&sr=1-1
Healing Into Possibility https://www.amazon.com/Healing-into-Possibility-Transformation-Lessons-ebook/dp/B002E6IJWE/ref=sr_1_1?crid=2YJ807S2LJYSX&dchild=1&keywords=healing+into+possibility&qid=1601626934&sprefix=healing+into+po%2Cstripbooks%2C205&sr=8-1
Tell Me Everything You Don’t Remember https://www.amazon.com/Tell-Everything-You-Dont-Remember/dp/0062422154/ref=sr_1_1?dchild=1&keywords=Tell+Me+Everything+You+Don%27t+Remember&qid=1601627035&sr=8-1
Relentless https://www.amazon.com/Relentless-Massive-Stroke-Changed-Better/dp/1626345201/ref=sr_1_1?dchild=1&keywords=relentless+baxter&qid=1601627079&sr=8-1
Stroke Forward https://www.amazon.com/Stroke-Forward-Become-Healthcare-Advocate/dp/1733258701/ref=sr_1_1?dchild=1&keywords=marcia+moran&qid=1601627118&rnid=2941120011&s=books&sr=1-1
Don’t Leave Me This Way: Or When I Get Back on My Feet You’ll Be Sorry https://www.amazon.com/Dont-Leave-Me-This-Way/dp/0061120634/ref=sr_1_1?crid=1EBCQJ5YKLB92&dchild=1&keywords=julia+fox+garrison&qid=1601627161&sprefix=julia+fox+%2Cstripbooks%2C206&sr=8-1
A Wonderful Stroke of Luck: From Occupational Therapist to Patient and Beyond https://www.amazon.com/Wonderful-Stroke-Luck-Occupational-Therapist/dp/1480866008/ref=sr_1_1?dchild=1&keywords=Janet+douglas+stroke&qid=1601627279&sr=8-1
Identity Theft: Rediscovering Ourselves After Stroke https://www.amazon.com/Identity-Theft-Rediscovering-Ourselves-Stroke/dp/144949630X/ref=sr_1_1?dchild=1&keywords=debra+meyerson&qid=1601627357&sr=8-1
The Brain’s Way of Healing https://www.amazon.com/Brains-Way-Healing-Discoveries-Neuroplasticity/dp/014312837X/ref=sr_1_1?dchild=1&keywords=The+Brain%27s+Way+of+Healing&qid=1601627463&sr=8-1
Rewire Your Brain https://www.amazon.com/Rewire-Your-Brain-Think-Better/dp/0470487291/ref=sr_1_3?dchild=1&keywords=rewire+your+brain&qid=1601627511&sr=8-3
Anatomy and Physiology Made Easy https://www.amazon.com/Anatomy-Physiology-Concise-Learning-Fundamentals/dp/1534635319/ref=sr_1_4?crid=2ACPD89D15QHF&dchild=1&keywords=anatomy+and+physiology+made+easy&qid=1601624433&s=books&sprefix=anatomy+and+physiology+made+%2Cstripbooks%2C207&sr=1-4
Author Interviews on Strokecast http://Strokecast.com/Authors
Instagram #Stroke https://www.instagram.com/explore/tags/stroke/
Instagram #StrokeSurvivor https://www.instagram.com/explore/tags/strokesurvivor/
Twitter #Stroke https://twitter.com/search?q=%23Stroke&src=saved_search_click
Bill Torres on Strokecast http://Strokecast.com/BillTorres
Patricia Geist-Martin on Strokecast http://Strokecast.com/Process

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.


Here is the latest episode of The Strokecast