Strokecast: The Stroke Podcast for Survivors, Clinicians, Care Partners, and all our Brain Injury Colleagues

I learned about the iStride device when the initial research paper came out last year. It made a big difference in subjects’ ability to walk. I thought you’d like to learn more about it. I know I did. So I reached out to the developer Dr. Kyle Reed. We talk about it, how it works, and the research in this episode.

So what’s the principle behind how it works?

When we start walking after stroke, it’s liberating. As we get more and more mobile we start to compensate for our affected side by walking differently. But that can cause problems later on. And our skills can top out.

At a certain point to get better, we need to break those new bad habits. The iStride is a therapeutic device that you wear on your unaffected foot. It teaches you to rely more on your affected leg to ultimately improve your walking ability years after stroke.

Bio

Dr. Kyle B. Reed is an associate professor in the Department of Mechanical Engineering at the University of South Florida (USF). His rehabilitation research focuses on low-cost methods to restore abilities in individuals with asymmetric impairments, such as from stroke or unilateral amputations.

His research on Haptics focuses on thermal responses of the skin, coordinated motions, and human-robot interaction. He has over 100 publications and has 18 patents issued or pending with three patents licensed for commercialization. He is an Associate Editor for IEEE Transactions on Haptics, an IEEE Senior Member, a Senior Member of the National Academy of Inventors, and was a 2019 Core Fulbright U.S. Scholar.

He has received funding from the National Science Foundation, the National Institutes of Health, the Florida High Tech Corridor, the Orthotic and Prosthetic Education and Research Foundation, the American Orthotic & Prosthetic Association, and industry. Prior to USF, he was a post-doctoral scholar at Johns Hopkins University. He received his Ph.D. and master’s from Northwestern University and his B.S. from the University of Tennessee, all in Engineering.

iStride in Action Research

Here’s the pilot study that initially caught my attention:

https://jneuroengrehab.biomedcentral.com/track/pdf/10.1186/s12984-019-0569-x

There are couple more studies coming out soon showing the benefits of the iStride. Check out the abstracts here:

https://www.ahajournals.org/doi/abs/10.1161/str.51.suppl_1.TP144

https://apta.confex.com/apta/csm2020/meetingapp.cgi/Paper/23350

Always be skeptical of new approaches to recovery, but if it’s not harmful, and it doesn’t interfere with other treatments in terms of time or money, those new treatments may be a great choice.

Thoughts on the Protests

The pro-democracy protests in Hong Kong negatively impacted people’s treatment because they couldn’t get to clinics. The recent anti-police brutality / Black Lives Matter protests in the US also likely disrupted people’s care, which was already disrupted by COVID-19. It’s okay to acknowledge that.

But that doesn’t mean the protests are bad or need to stop. Every group that is fighting for its rights also has people with disabilities in its ranks. With all the upheaval, now is not the time for people with disabilities to stay silent. Now is the time to speak up even louder.

Disability doesn’t mean we can’t or shouldn’t be part of the fight — it just means we may have a different role.

Hack of the Week

An umbrella stand or tall vase is a great place to store canes by the door. It can also be a great place to swap from an indoor to an outdoor cane a you venture into the larger world.

And as long as you have to use a cane, make it awesome.

You can find hundreds of great options on Etsy:https://www.etsy.com/search?q=walking%20cane&ref=auto-1&as_prefix=walk

I’ve also acquired most of mine through FashionableCanes.com.

Links

Reed Lab

http://reedlab.eng.usf.edu/

Dr. Kyle Reed’s email address

[email protected]

iStride Device

http://reedlab.eng.usf.edu/iStrideDevice/

Moterum Technologies

https://moterum.com/

Clinical Trials

https://moterum.com/clinical-trials/

iStride video by USF

https://youtu....

Modern social media means anyone can reach out and connect with other stroke and brain injury survivors. And we are part of an amazing community.

Instagram is where I first encounter stroke survivor and entrepreneur Ella Sofia. We met through an Instagram Live video she did with Joe Borges of the Neuro Nerds podcast.

Ella survived two strokes when she was 14. I’m glad she tells story for several reasons. One though, is the reminder that kids can have strokes. A lot of folks don’t realize that. If you’d like to learn more about stroke in kids, you can listen to my conversation from 2019 with Dr. Heather Fullerton

Another important element is that Ella was athletic and still had her stroke. Being active and healthy with good blood pressure reduces your chances of having a stroke, but it doesn’t eliminate it. A number of guests on the show have been healthy, young and had a stroke. Sometimes it’s for an obvious reason (after the fact) like the Arteriovenous Malformation (AVM) Ella experienced, and sometimes we may never know, which was the case with Whitney Morean.

So why bother getting in shape? First of all, a healthy body does still reduce the odds of stroke even if it doesn’t guarantee that it won’t happen. Second, it makes recovery faster and more complete.

Bio

Ella Sofia, Habit Coach is a content creator at www.retrainyourbrain.ca.

In January 2008, at the age of 14, Ella suffered a hemorrhagic stroke due to an AVM rupture in her cerebellum. About 9 years after her injury, through a long process of self-care and self-reflection, she finally and thankfully realized that mental rehabilitation is just as, if not more important than physical rehabilitation. Now, she specializes in the mind’s role in habit creation to help others with their mental rehab and ultimately help others use habit to simplify their personal growth.

Ella received a Master of Arts, Sociology degree from the University of Waterloo in 2018. Her research revolved around risk management, resilience, and security in Canada airports. She spent nearly 3 years working for the Canadian government in national security while completing her degree. During her time with the government she realized that the resilience of the airports and structures she was studying was not so different from the resilience of the mind. This realization lead her to integrate many of the concepts and practices learned from her research into her coaching today.

What is an AVM?

An AVM is a misconfiguration of blood vessels. Instead of arteries gradually leading to smaller and smaller capillaries that then lead to larger and fewer blood vessels and into veins, in an AVM, that network of capillaries doesn’t develop properly. The blood vessel can’t properly regulate and withstand the blood pressure. Eventually, it can fail. That results in a brain bleed — a hemorrhagic stroke.

Here is an article that talks about it in greater detail.

Changing Habits

Habits — good or bad — are unconscious behaviors. To change them we first have to make ourselves conscious of the context of the habit.

Ella talks about how to do that. When you feel the urge to engage in a bad habit, stop, ask yourself some questions and take some notes.

• Who?
  • Who are you with or thinking about?
• What?
  • What are you doing at the moment? What is going on? Don’t worry if it doesn’t seem connected to your habit. Just make note of it.
• Where?
  • Where are you? Make note of it. Get specific about where you are in your home or in the world.
• When?
  • When did the urge happen? Note the time or other temporal queues,
• What are you feeling?
  • What sort of mood are you in? What other things are you worried about?

You don’t have to do all the analysis. Just start by making note of these things. As you collect data, you’ll start to see trends. Then the work can start.

Links

Ella Sofia’s website

http://retrainyourbrain.ca

Ella on Instagram

http://instagram.com/ellasssofia

Ella on Twitter

http://twitter.com/ellasssofia

Ella on Facebook

https://www.facebook.com/ellasssofia/

Ella on LinkedIn

https://www.linkedin.com/in/ella-sofia-5845bb175/

Ella on Goodreads

Today is both episode 100 and my 3rd Strokeaversary.

Each year, I look forward to this day as one to respect. Survivor reactions to the anniversary of a stroke are as varied as survivors themselves. Some see it as a party; others as a day of dread. Both reactions and all those in between are valid. I lean toward the party angle myself.

It’s not so much the anniversary of the day I suffered a stroke. Instead, it’s the day I survived a stroke. So pass the cake, please!

In reality, I don’t so much end up with a party, though. It usually turns out to be a day of quiet reflection. This year I’ll be tired from work so I may celebrate with a nap. Or a quiet, socially distanced walk around the neighborhood.

Regardless, today is a good day. Just as all those after stroke have the potential to be.

So listen to this week’s episode. I talk about things like mortality, seasons in life, why sleep in the hospital sucks, the amazing staff I had the joy of working with, and the awesome Cathy Lee.

Hack of the Week

I use the handle of my cane to press elevator buttons. Sometime I use the cane to open and close doors, too. It’s one easy way to reduce my chances of picking up a virus in the outside world. Plus, it means I don’t have to put my cane down to call an elevator.

Where do we go from here?

• Think about the seasons in your life. How can that help you manage your priorities?
• Follow @Bills_Strokecast on Instagram
• Share this episode with 3 people by giving them the link http://strokecast.com/3Years
• Don’t get best...get better

Marcia Moran was a consultant who worded with entrepreneurs and helped the write business plans. Her pplan did not include a stroke in 2014, but no one’s does. Since then those skills have helped her advocate for herself and take the small steps she needed to in order to begin her recovery.

Marcia shares her story in this episode, talks about how she’s doing it, and discusses the importance of having or being an advocate.

Bio

From Marcia’s website:

After successfully building her business over the last twenty-plus years, Marcia Moran thought she had life by the tail. Little did she know what was in store.

Marcia Moran has written over fifty business plans, and helped entrepreneurs strategize over how to differentiate their companies in changing environments. Her experience led her to found her own firm, Performance Architect in 2012. She also co-founded Positive Business DC, an organization designed to increase well-being in the workforce in 2012.

After suffering a major stroke in 2014, Marcia applied her skills in planning and strategy as she strived to become whole. She never gave up. Over time she learned to walk again, but Marcia struggled with aphasia, a language disorder. She joined Toastmasters International hoping to regain her speaking abilities. It helped marginally, but in August 2017 she discovered a technological breakthrough that minimized her speaking disability. She then pushed beyond her comfort zone to become a Toastmasters International Club Officer in 2017, followed by Area Director in 2019.

Marcia created Stroke FORWARD because she felt there is a need to share hope to stroke survivors and their caretakers. Learning to become her own health advocate one step a time and exploring holistic methods for healing were keys to her recovery. Marcia speaks and shares her message of hope, inspiration, healing, and a way forward as she goes across the country. She welcomes new opportunities to help individuals affected by major health crises move forward.

Marcia lives with her husband Jim, two very loud cats, and two birds near Washington, DC. Jim played a role of caretaker and advocate and contributed to Stroke FORWARD. His observations and experiences are captured in the book.

On weekends, Marcia, Jim, and the cats go to Deep Creek, Maryland where Marcia paints watercolors. In the evening Marcia and Jim sit out on the deck and watch fireflies flit by.

Marcia holds a B.S. in Political Science with a magna cum laude from the University of North Dakota and a Master’s in Business Administration, from Chapman University in California. She attended Skirinssal Folkehoyskole in Sandefjord, Norway and studied art. She also earned a certificate in Well-being Foundations of Personal Transformation from the Personal Transformation and Courage Institute in Virginia. She volunteers at Brain Injury Services, supporting their Speakers Bureau program.

Small Steps

Marcia talks about working towards her goals by breaking down the process into small steps, and then figuring out how to achieve each step. Sometimes she succeeded and sometimes she did not.

That’s how most recovery goes. It’s about figuring out we want to walk. Then we look at what we need to do to get there. Maybe we need to be able to stand first. Before standing maybe we need to be able to sit up. The key is to break down the big goal into smaller goals we can work towards. This is how our rehab specialists work with us — piece by piece.

It’s not something exclusive to rehab. This is how most productivity plans tell you how to a chieve a goal. It’s the basic model behind project management. It’s how everything from sheets of paper to baseball stadia get built.

Celebrate the Small Victories

In this conversation, you hear a lot of “Woo-hoo!” from Marcia as she celebrated accomplishments large and small along the path of her recovery.

Those small victories matter. When you feel the slightest improvement, celebrate it. Recognize it for what it is — a piece of the puzzle.

I was excited when I could feel my left index finger almost begin to move. Focus on those small movements, improvements in speech, a slight win in memory — whatever it is. Let your brain feed on the positivity of a win, however small so it can continue to give you more of them.

Toastmasters

Toastmasters is a group with more than a thousand chapters around the world that helps folks grow an improve their public speaking and leadership skills. Marcia found great value in the work and the community.

Many of the guest on my other show, 2-Minute Talk Tips have been involved with Toastmasters. You can hear some of them and learn more about the program at http://2MinuteTalkTips.com/Toastmasters

Hack of the Week

Get a heating pad.

A heating pad is grea...

This situation the world is facing with COVID-19 (novel coronavirus) is unlike anything we’ve seen for a 100 years. In just a few months, it has put the entire world economy on pause as hundreds of thousands of people test positive for this deadly disease.

What does this mean for stroke survivors? Are we at higher risk?

Neuro-Physiatrist Dr. Kim Middleton joins us to answer that question and more in this episode of Strokecast.

Bio

Dr. Kimberly Middleton completed medical school at the University of California, Los Angeles David Geffen School of Medicine before doing her residency at the University of Washington.

She is a member of the American Academy of Physical Medicine and Rehabilitation (AAPMR).

Dr. Middleton was one of the doctors who cared for me during the month I lived at the hospital following my stroke. I continue to see her on a regular basis for my Botox/Dysport injections to treat my tone and spasticity.

You can learn more about Dr. Middleton’s background here: https://www.swedish.org/swedish-physicians/profile.aspx?name=kimberley+w+middleton&id=160439

10 Tips to Protect Yourself From COVID-19

1. Wash your hands again. Yes, again.
2. Don’t touch your face.
3. Continue taking your meds.
4. Practice physical social distancing, but continue to connect online.
5. Disinfect your home and deliveries you receive. Cleaning is good home OT.
6. Eat healthful meals to keep your nutrition up.
7. Consider taking supplements like vitamin C.
8. Keep your body strong with exercise.
9. Prioritize sleep.
10. Go deep into that home exercise program your PT or OT gave you.

Handwashing One Handed

Washing our hands is the cheapest and probably most effective way to minimize the chances of catching COVID-19 and hundreds of other conditions. But how do you do it effectively when hemiparesis leaves you with one functional hand?

One way is to use your unaffected hand to wash your affected one. Sure, that one’s probably not as dirty since it’s mainly been hanging around as just a fist, but the act of washing it will wash and scrub the washer. Plus it’s a great opportunity to get some more finger stretches in.

Here are some examples of other techniques.

Links Dr. Kimberly Middleton at Swedish https://www.swedish.org/swedish-physicians/profile.aspx?name=kimberley+w+middleton&id=160439 COVID-19 Info from Swedish Medical Center https://www.swedish.org/patient-visitor-info/coronavirus-advisory WHO on the COVID-19 Pandemic https://www.who.int/emergencies/diseases/novel-coronavirus-2019 NIH on the COVID-19 Pandemic https://www.nih.gov/health-information/coronavirus CDC on the COVID-19 Pandemic https://www.cdc.gov/coronavirus/2019-nCoV/index.html Stroke.org home exercises https://www.stroke.org/en/help-and-support/resource-library/post-stroke-exercise-videos COVID-19 on the AHA https://www.stroke.org/en/about-us/coronavirus-covid-19-resources Stroke.Org Interview with Dr. Eduardo Sanchez https://www.youtube.com/watch?v=VW7zNAz9gA0&feature=emb_logo Home Exercise from Disability Horizons https://disabilityhorizons.com/2016/10/top-10-exercises-disabled-people/ Home Exercises from silver Sneakers https://www.silversneakers.com/blog/total-body-chair-workout-for-older-adults/ Sitting Exercises from Britain’s NHS https://www.nhs.uk/live-well/exercise/sitting-exercises/ Where do we go from here?

• Share this episode with others or post about it to Facebook, LinkedIn, Twitter, or Instagram with the link http://Strokecast.com/covid-19
• Check out the links above to keep your exercise going.
• Stay safe.
• Don’t get best...get better

Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, re...