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.

amzn_assoc_tracking_id = "currentlybill-20";
amzn_assoc_ad_mode = "manual";
amzn_assoc_ad_type = "smart";
amzn_assoc_marketplace = "amazon";
amzn_assoc_region = "US";
amzn_assoc_design = "enhanced_links";
amzn_assoc_asins = "0062407805";
amzn_assoc_placement = "adunit";
amzn_assoc_linkid = "08f7668ad61d3230d3cd077558f74830";

//z-na.amazon-adsystem.com/widgets/onejs?MarketPlace=US

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

amzn_assoc_tracking_id = "currentlybill-20";
amzn_assoc_ad_mode = "manual";
amzn_assoc_ad_type = "smart";
amzn_assoc_marketplace = "amazon";
amzn_assoc_region = "US";
amzn_assoc_design = "enhanced_links";
amzn_assoc_asins = "1501139169";
amzn_assoc_placement = "adunit";
amzn_assoc_linkid = "4b1b3286bbe651d6fef62f67df0d890d";

//z-na.amazon-adsystem.com/widgets/onejs?MarketPlace=US

(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!

amzn_assoc_tracking_id = "currentlybill-20";
amzn_assoc_ad_mode = "manual";
amzn_assoc_ad_type = "smart";
amzn_assoc_marketplace = "amazon";
amzn_assoc_region = "US";
amzn_assoc_design = "enhanced_links";
amzn_assoc_asins = "B087SJRB8Q";
amzn_assoc_placement = "adunit";
amzn_assoc_linkid = "b9260f7986dcf731554f4d6f1c5c2b44";

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

2020-09-24

Ep 111 -- Falling in Love with the Process (Part 2)


How do you tell someone’s story in a book without actually writing your story of learning their story? What is qualitative research? We answer those questions and more as I nerd out with Drs. Patricia Geist-Mart and Sarah Parsloe about Communication theory.

In Episode 110, I talked with Bill Torres, the subject of the book, “Falling in Love with the Process.” You can listen to that episode here.

In this episode, I talk with the authors of the book, Dr. Patricia Geist-Martin and Dr. Sarah Parsloe, professors of Communications at San Diego State University and Rollins University respectively.

The result is a wide ranging discussion that let me nerd out a bit about Communication Theory, which is something I haven’t talked a whole lot about since college.

We discuss topics like:

  • What communication is and how it defines relationships
  • The nature of qualitative research
  • The challenges in telling someone else’s story
  • Cyberactivism
  • Ableism and intersectionality
  • Inspiration porn
  • …and much more

And you’ll get to hear more about what it’s like to work with Bill.

Bios

Patricia Geist-Martin stands in front of a brick wall and smiles at the camera.

Patricia Geist-Martin (Ph.D. Purdue University) is a Professor Emerita in the School of Communication at San Diego State University. Her research examines the stories people tell in making sense of their lives, particularly in their journeys through health and illness. Falling in Love with the Process: Cultivating Resilience in Health Crises: A Stroke Survivor’s Story (2020), is Dr. Geist-Martin’s fifth book. Website: https://patriciageistmartin.com

Sarah Parsloe stand in front of a pond and looks at the camera 150

Sarah Parsloe (Ph.D. Communication, Ohio University) is an Assistant Professor in the Department of Communication at Rollins College, Winter Park, FL.  Her research examines the ways in which people make sense of identity threats that arise from experiences of disability and chronic illness, including uncertainty, stigma, and prejudice against people with disabilities (ableism). She is particularly interested in studying the communication processes of (self-)advocacy.

Movies

We talked briefly about a couple movies that came to mind while talking with Bill. Here are the trailers.

Lessons Learned

Patricia spoke about the about the amazing resilience she learned from Bill. The fact that we can go through so much and then still go out and do the work of recovery is amazing. And then to go beyond our own recovery to helping others as Bill has done is a powerful thing.

Sarah talked about two lessons she learned from Bill.

The first is the importance of relationships. Bill has friends he’s known for decades and he continued to feed those relationships throughout his life both before and after his stroke. And when he needed them — they were there. Maintaining relationship later in life goes a long way to not only enriching that live but also in feeding health.

Speaking of feeding one’s health, Sarah also learned from watching Bill feed the ducks. He has something he cares about and takes care of every day. After stroke, it’s easy to think we can’t take care of others because we have to be taken care of, but that’s a dangerous path to go down.

Taking care of others can be an important way to drive our own sense of importance (in a good way) even if it’s in a different context. Maybe we can’t take care of others the same way we could before stroke, but maybe there’s a new way of providing moral or emotional support while still getting support and care from others.

Even if that means finding some hungry ducks.

From my perspective, the worst thing that can happen to a person is to have nothing to do. It’s fine in limited doses, but having nothing to — no reason to start the day — can lead to a nasty spiral of depression. It’s why so many people die within a year of retiring from their jobs.

Or maybe you’re just getting a peek at my own anxieties there.

Cyber Activism

We talked a bit about cyber activism and how social media has given disabled people and people with disabilities a way to raise their concerns and say ableism and Eugenics are not ok. It’s a tool that means this community will not be ignored.

Twitter hashtags are some of the places where these stories come out, including:

We talked about Dr. Kimberlé Williams Crenshaw who developed the theory of Intersectionality when discussing issues of race, disability, gender and more. You can read more about her work here: https://aapf.org/our-team

Talila A. Lewis is a lawyer and activist focusing on deaf wrongful conviction cases Talila founded the HEARD organization. You can read more about Talila’s work here: https://www.talilalewis.com/about.html

Hack of the Week

Singing is sometimes a way to get words out for folks who struggle with aphasia. Because of the way the brain is wired, singing can get based block in the traditional language centers. If you find yourself fighting to speak the words, try to do a little song.

Links

Falling in Love with the Process https://he.kendallhunt.com/product/falling-love-process-cultivating-resilience-health-crisis-stroke-survivors-story
Falling in Love with the Process on Facebook https://www.facebook.com/fallinginlovewiththeprocess
Falling in Love with the Process on Amazon https://www.amazon.com/Falling-Love-Process-Cultivating-Resilience/dp/1524989894/ref=sr_1_1?dchild=1&keywords=falling+in+love+with+the+process&qid=1600308306&sr=8-1
Patricia Geist-Martin, Ph.D. on the web https://www.patriciageistmartin.com/
Patricia Geist-Martin, Ph.D. on SDSU https://communication.sdsu.edu/faculty_and_staff/profile/-patricia-geist-martin
Patricia’s email pgeist@sdsu.edu
Sarah Parsloe, Ph.D  at Rollins University https://www.rollins.edu/communication/faculty-staff-listing/
Sarah Parsloe, Ph.D on research Gate https://www.researchgate.net/scientific-contributions/Sarah-Parsloe-2123013686
Sarah’s email sparsloe@rollins.edu
Bill Torres on Strokecast http://Strokecast.com/BillTorres
Patricia and Bill on the Hand In Hand show https://www.handinhandshow.com/2020/07/18/episode-101-enjoy-the-recovery-process-bill-shares-his-journey/?fbclid=IwAR1T8DLyL81bKT0vcA4ax8_UXmIGGV3Cmvmk-3VlJxGMkzreaR3aYKQ5Lrg
Neuro Nerds Podcast http://TheNeuroNerds.com
Joe Borges on Strokecast http://Strokecast.com/NeuroNerds
Pathos, Logos, and Ethos http://2minutetalktips.com/2017/11/07/episode-035-let-the-audience-react-and-ancient-rhetoric-today/
Arrival — Trailer https://youtu.be/tFMo3UJ4B4g
Big Fish — Trailer https://youtu.be/M3YVTgTl-F0
#AbledsAreWeird on Twitter https://twitter.com/search?q=%23AbledsAreWeird&src=typed_query
#CripTheVote on Twitter https://twitter.com/search?q=%23cripthevote&src=typed_query
#NoBodyIsDisposable https://twitter.com/search?q=%23NoBodyIsDisposable&src=typed_query
Kimberlé Williams Crenshaw on Wikipedia https://en.wikipedia.org/wiki/Kimberl%C3%A9_Williams_Crenshaw
TL Lewis website https://www.talilalewis.com/
Heard http://behearddc.org/
Alice Wong on Twitter https://twitter.com/SFdirewolf
Autoethnography on Wikipedia https://en.wikipedia.org/wiki/Autoethnography#:~:text=Autoethnography%20is%20a%20form%20of,and%20social%20meanings%20and%20understandings.
The Hero’s Journey on Wikipedia https://en.wikipedia.org/wiki/Hero%27s_journey

Where do we go from here?

  • Order the book from the publisher or Amazon if you want to hear more about Bill Torres and falling in love with the process.
  • Share this episode with academic, professor, or college student in your life by giving them the link http://Strokecast.com/Process.
  • Follow me on Instagram at Bills_Instagram.
  • 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.


Here is the latest episode of The Strokecast

2020-09-17

Ep 110 -- Falling in Love with the Process (Part 1)


At 85, stroke survivor Bill Torres works out every day, feeds the ducks, and helps other survivors along the way. He has fallen in love with the process of getting better. This week, we hear Bill’s story.

Bill Torres had a stroke at 71. Fourteen years later, he’s recovered and at age 85 spends his days feeding the ducks, hitting the speed bag, working out, and helping stroke survivors around the country navigate their own process of stroke recovery.

This episode is a little different. Bill just started telling stories and sharing his wisdom and who am I to get in the way of that with pre-prepared interview questions. I just wanted to hear more. So this episode highlights the core things that Bill and I talked about.

I hope you find Bill as fascinating as I do.

Bio

Bill Torres wears a red t-shirt and looks directly at the camera in this headshot

Bill Torres grew up in San Diego, where he now lives.

His career took him to places as varied as Long Island, NY; Jakarta, Indonesia; and a school in Venezuela. He taught English, sold franchises, brought Arby’s to large parts of the Pacific Northwest, and brought racquetball to the US.

Bill survived a stroke at age 71 and now, at age 85, helps other stroke survivors along on their own journey of recovery.

Bill is the subject of the new book, Falling in Love with the Process, by Dr. Patricia Geist Martin and Sarah Parsloe.

He feeds the ducks every day.

Bill’s story

Hack of the Week

Bill recommends old-school hair curlers as great tools for dealing with hand tone and spasticity. Combined with exercise, they help folks straighten out their finger and keep their hand open. If you’ve got some laying around, give them a try. Or ask Bill. He probably has a few in his car.

Links

Where do we go from here?

  • Check out Bill’s video above or visit http://BillTorres.net to learn more and connect directly with Bill.
  • Look for Episode 111 after September 23 to hear authors Drs. Patricia Geist-Martin and Sarah Parsloe share their story of working with Bill.
  • Fall in love with your own process of recovery
  • Don’t get best…get better

Here is the latest episode of The Strokecast

2020-09-10

Ep 109 -- Play Games to get that Hand Back with Neofect CEO Scott Kim


It’s been awhile since I checked in with the folks at Neofect so in this episode I chat with CEO and co-founder Scott Kim.

If you follow the technology and gear around rehab, you’ve probably heard of Neofect. They make a product called the Smart Glove. I talked about it with OT Lauren Sheehan a couple years ago at http://Strokecast.com/Lauren. You can listen at that link.

The Smart Glove is a plastic exoskeleton with very sensitive sensors that you wear on your stroke affected arm. Then you play video games with that arm. The sensors detect the slightest motion and translate that motion into in-game activities. It encourages you to do more therapy by making it more engaging. It makes getting those thousands of reps in that much easier.

We talk about that, enhancements to the product, new products, and some of the decisions a CEO has to make

Bio

Neofect CEO Scott Kim faces the camera while wearing the Smart Glove on his left hand. It looks like a plastic exoskeleton.

Scott Kim is the co-founder and CEO of Neofect USA, a digital health company that creates customized digital rehabilitation solutions for patients with neurological and musculoskeletal injuries.

Scott met his business partner, Hoyoung Ban, at the Darden Business School at University of Virginia and they quickly connected over personal experiences with the healthcare system and rehabilitation. Scott was born with spina bifida, so after having major surgery on his back as a child, he spent tons of time in rehabilitation. After moving to the U.S. for college, Scott started to notice the gaps in the healthcare system — and that gave him an idea of how he could contribute and make the process more engaging.

Before starting Neofect, Scott worked as a management consultant, a product manager in the software industry and for mobile gaming companies such as GREE, Z2Live (which is now Activision Blizzard) and 505 Games. He founded a couple startups before using all his experience to create Neofect in 2010. Scott now leads a national team from Neofect’s U.S. headquarters in San Francisco.

About Neofect

Neofect’s creates gamified rehabilitation solutions for patients recovering from stroke and other neurological and musculoskeletal conditions. This started with the Neofect Smart Glove and has progressed to include the Neofect Smart BoardNeofect Smart PegboardNeofect Smart KidsNeofect CognitionNeofect Smart Balance, and the NeoMano robotic glove for functional assistance. They also have a new app: Neofect Launches Connect, a Companion App for Stroke Rehabilitation

Traditional rehabilitation exercises are repetitive and monotonous and don’t engage or encourage patients during recovery. This can make patients less likely to stick with programs if they’re not feeling excited or seeing measurable improvements. Each Neofect rehabilitation solution is designed with gamified therapy, using content that’s carefully curated with the help of expert therapists. Every game invigorates the muscles and stimulates visual and auditory senses, reinforcing cognitive functions and accelerating neuroplasticity.

Neofect’s devices are available through physical therapy or occupational therapy, and most can also be used at home. They’re making rehabilitation more fun and engaging, and helping people recover their range of motion.

No Barriers

Scott talked about his work with the No Barriers organization. Here’s how that group describes itself:

The mission of No Barriers is to fully unleash the potential of the human spirit.  Through transformative experiences, tools and inspiration, we help people embark on a quest to contribute their absolute best to the world.  In the process, we foster a community of curious, brave and collaborative explorers who are determined to live the No Barriers Life.

You can learn more about No Barriers here: https://nobarriersusa.org/

Hack of the Week

Remember that you are not alone.

It may seem like it, but there are hundreds of thousands of new stroke survivors in the US every year and millions more around the globe. Yet it can still feel isolating. Mobility challenges make it seem easier to stay home. Communication challenges make it seem easier not to talk. And cognitive difficulties may mean connecting with others burns spoons faster.

But when you do meet up with a group of stroke survivors, you’re among a group that “gets it.” We understand what it’s like to have a brain problem.

So remember there are others out there who can go through this with you. During this time of COVID-19 that may mean we aren’t doing in person meetings, but many groups are meeting online thanks to the power of video conferencing. And there are dozens of Facebook groups you can join.

Follow the #StrokeRecovery hashtag on Instagram to see what other survivors are doing and reach out.

Or just watch and smile (or half smile because, well, you know 🙂 ) and know that you are not alone.

Links

Where do we go from here?


Here is the latest episode of The Strokecast

2020-08-27

Ep 108 -- Hope After Stroke with Tsgoyna Tanzman


Speech Language Pathology is a fascinating field. Covering everything from swallowing to memory to the fundamentals of language to not biting your cheek every damn biter during dinner, it’s something most folks outside stroke world or the disabled community never really think about.

Tsgoyna Tanzman is an author and a Speech Therapist in Southern California. In this episode Tsgoyna and I talk about:

  • What we mean by “cognitive issues”
  • The multiple different types of aphasia
  • Managing over stimulation after stroke
  • The nature of recovery
  • The impact of telemedicine
  • How race affects post-stroke care and assessment
  • The process of editing and self-publishing a book

If any of that  sounds interesting to you, be sure to listen.

Bio

Tsgoyna Tanzman stands outside facing the camera in a clear landscape

As a Speech-Language Pathologist and Life Coach for more than 25 years, Tsgoyna has helped thousands of people transition after stroke and brain injury to the next stages of their lives. Having worked in hospitals, home care, residential and skilled nursing facilities, clinics, and community settings, she’s an expert at helping people find their inner and outer resources needed for the process of recovery.

Tsgoyna’s unique approach combines traditional and holistic speech therapy along with the life coaching practices used by some of the most successful people on the planet. Trained by legendary coaching gurus Tony Robbins, Dr. Dawson Church, and Brooke Castillo; she’s also a Master Practitioner of Neurolinguistic Programming. Tsgoyna is best known for her down-to-earth practicality, enthusiasm, and sense of humor while compassionately guiding caregivers and survivors through recovery.

Book cover of Hope After Stroke

She is the author of the bestseller book, Hope After Stroke for Caregivers and Survivors: The Holistic Guide to Getting Your Life Back. Tsgoyna’s humor and poignant life stories appear in 15  different anthologies of Chicken Soup for the Soul. She is a current contributor to Thrive Global (Huffington Post). Her blog pieces about mental health appear on the largest online addiction recovery site: I Love Recovery Cafe.  Tsgoyna gained national attention on CNBC News, USA Today, Glamour Magazine, Woman’s Day Magazine, the LA Times and the Chicago Tribune for authoring the first-ever line of greeting cards for the unemployed in 1991,”Pink Slip Productions.”

3 Tips for Over Stimulation

While I hope everyone is social distancing and avoiding large gatherings so that COVID-19 kills fewer people and causes fewer strokes, someday we will be out socializing again. If you struggle with over stimulation in social events, Tsgoyna has three tips to make it a little easier for stroke survivors to manage.

  1. Make sure you get adequate rest before and after the event.
  2. Find a space at the event where you can decrease the stimulation.
  3. Focus on talking to one person at a time in another, quieter part of the room.

The 1950s

I mentioned the cognitive assessment they gave me where I was asked to describe what was happening in the image.

I answered “1954.”

(actually, the specific year changes every time I tell this story, but it’s always the fifties)

Here is that image:

Image used to evaluate cognitive skills that CurrentlyBill described as 1956

 

Free Workbook Sample

Cover of Tsgoyna's free 21 Day Sample of the Recovery Journal

To get Tsgoyna’s free 21 Day Sample of the Recovery Journal and sign up for Tsgoyna’s mailing list, visit this link:

http://strokecast.com/HopeAfterStrokeGuide

Free Wheelin’ with Carden

Logo for the Free Wheelib with Carden Podcast

I was recently featured on the Free Wheelin’ with Carden Podcast.

Carden Wycoff is podcaster and disability activist in Atlanta. She interviews guests about their experiences  going through life with disabilities, the nature of accessibility, the impact of the ADA, and how we can all work to combat ableism, and push for a more accessible world.

You can listen to our conversation about my story and the power of Neuroplasticity here: http://strokecast.com/BillVisits/FreeWheelin

Hack of the Week

Meditation is key. It’s about taking a moment to prepare yourself for the day. Just like you prepare yourself to leave the house by putting on pants of a sort or a skirt (probably), you can prepare yourself for the day by taking some time to prepare your mind.

It can be as simple as taking a few minutes to find one thing to focus on with each of the five senses in that moment — site, hearing, taste, touch, and smell. If you want to get really fancy may throw proprioception into the mix.

Ultimately, the survivor does all the work of recovery. And it is work. So take a few minutes each morning to prepare.

Links

Where do we do 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