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

2020-08-20

Ep 107 -- The Netflix of Healthcare with Dr. Felecia Sumner


What if you could see your doctor as much as you wanted and never have to pay a deductible or co-pay? What if your doctor was not paid based on how many patients they see on a given day?

This week, Dr. Felecia Sumner joins me to talk about the Direct Primary Care  model of healthcare. It’s the Netflix of Healthcare. You pay a monthly subscription fee and get to see your doctor as much as you need to without dealing with insurance providers.

This can be a great thing for stroke survivors and other folks with chronic conditions where you have not only complex needs and more of them than the general population, but you also need a provider who is interested in staying on top of your complex medical history.

Bio

Dr. Felecia Sumner smiles and looks at tye camera with her arms crossed

From Dr. Sumner’s website: https://drfsumner.com/about-me/

Dr. Felecia Sumner is a family medicine physician, national speaker, best-selling author, and wellness strategist dedicated to improving the health and overall wellness of her patients and their communities. She is also the co-founder and Vice President of Synergizers Inc – a health and wellness service company.

Dr. Sumner completed her undergraduate work at Saint Joseph’s University and obtained her medical degree from the Philadelphia College of Osteopathic Medicine (PCOM). While at PCOM, Dr. Sumner earned the highly coveted Student National Medical Association’s PCOM Member of the Year award.

Dr. Sumner is actively involved in community health education and has presented across the country at a number of community, school, and church-related events about healthy lifestyle, nutrition, and disease prevention.

Dr. Sumner’s medical philosophy is inclusive of both traditional and alternative therapies and is focused on providing patient education and explaining things in non-technical language. Thus, her patients gain an increased sense of personal management of their own health, and family members are invited to attend appointments. She is particularly interested in medical media and preventive medicine, in addition to women’s health, nutrition and wellness.

Of personal note, Dr. Sumner lives in Pennsylvania, with her husband and two young daughters. In her free time, Dr. Sumner enjoys reading, singing, cooking, and spending quality time with her family and friends.

Is Racism Real?

This is one of the questions Dr. Felecia answers on Instagram and Facebook about race.

 

Dr. Felecia mentioned the Tuskegee Experiment. You can read more about that here: https://www.cdc.gov/tuskegee/timeline.htm

Here’s an article that talks about several books exploring the history of gynecological care in the US and how it started with brutal experiments on enslaved women: https://www.aaihs.org/black-subjectivity-and-the-origins-of-american-gynecology/

It’s August 2020 and protests are going on in Seattle and around the country. Before our interview, I reached out to Dr. Felecia to see if race was something she wanted to talk about on the podcast. She agreed.

The medical field, like many has failed many times to take care of folks based on race. Differences in care based on race, gender identity, disability, and more continue. Since disparities in treatment can happen even when most providers mean well, it means there must be an unconscious bias at play.

Sharing stories and listening to the stories of others is just one way to address this.

The Real Rx

The Real Rx is where I first hear Dr. Felecia. I started listening because one of the other co-host is Dr. Kimberly Brown, an Emergency Room physician who was a guest on Strokecast back in episode 40.

The Real Rx describes itself as “Real problems. Real talk. Real doctors. Talk to our group of women physicians just like one of your girlfriends. It is like having a virtual house call!”

I enjoyed listening to season one, and I learned stuff. It’s a nice balance of the personal and the professional.

The show is currently on hiatus, but it’s worth going back and listening to the back catalog in your favorite podcast app.

Links

Dr. Felecia Sumner’s website

https://drfsumner.com/

Dr. Felecia on Facebook

https://www.facebook.com/drfeleciasumner

Dr. Felecia on YouTube

https://www.youtube.com/channel/UCQk93BJT2ZSMdD2rwfBsbjQ

Dr. Felecia on Twitter

https://twitter.com/drfeleciasumner

Dr. Felecia on Instagram

https://www.instagram.com/drfeleciasumner/

One of Dr. Felecia’s posts on Instagram about Racism

https://www.instagram.com/p/CBNym5ehV4H/?utm_source=ig_web_copy_link

 

 

Synergize Direct Primary Care

https://www.synergizedpc.com/

Synergize Direct Primary Care on Facebook

https://www.facebook.com/synergizedpc

DPC Frontier

https://www.dpcfrontier.com/

The Real Rx Podcast

https://anchor.fm/the-real-rx

The Real RX on Facebook

https://www.facebook.com/therealrxmedia

The Real Rx on Instagram

https://www.instagram.com/therealrxmedia/

Dr. Kimberly Brown on Strokecast

http://Strokecast.com/Kim

Tuskegee Experiment

https://www.cdc.gov/tuskegee/timeline.htm

Black Subjectivity and the Origins of American Gynecology

https://www.aaihs.org/black-subjectivity-and-the-origins-of-american-gynecology/

Where do we go from here?

  • Visit the links above to learn more about Direct Primary Care and see if it’s right for you and your family.
  • Share this episode with three other people by giving them the link http://Strokecast.com/dpc
  • Subscribe to the Strokecast in your favorite podcast app so you never miss an episode.
  • 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

2020-08-10

Ep 106 -- Using Music to Walk Again with Brian Harris


Music has the power to take us back in time to a fuzzy, nostalgic past. Or it can take us into a future we aspire too. It can show us history or connect us with God. It can take us deep into the emotional side of our brain and help us transcend our present.

 As I invested time with my therapists, Lin Manuel Miranda's lyrics helped keep me going,

Just like my country, am young, scrappy, and hungry, and I'm not throwing away my shot 

My Shot, Lin-Manuel Miranda

And even in the dark days, Billy Joel reminds me that

The good old days weren't always so good and tomorrow's not as bad as it seems.

Keepin' the Faith, Billy Joes

Music can take us to a different place metaphorically, and now, literally. Medrythms uses a system of sensors and specific music tracks to help stroke survivors learn to walk.

The US Food and Drug Administration recently accepted the Digital Therapeutics Platform for Walking from Medrythms into the Breakthrough devices program. This program streamlines the approval process for certain medical devices.

I talked with CEO and Co-founder Brian Harris to learn more.

Bio

Brian Harris keeps his back to a brick wall as he looks at the camera.
 
 

Brian Harris is the Co-Founder and CEO of MedRhythms, a digital therapeutics company focused on the intersection music, neuroscience and technology. 

Brian is a board-certified music therapist and one of 300 Neurologic Music Therapist Fellows in the world.

Brian’s clinical work was focused at Spaulding Rehabilitation Hospital in Boston where he created and implemented their first inpatient full time Neurologic Music Therapy program, specializing in Traumatic Brain Injury, Stroke, and neurologic disease and built this program to be the most comprehensive NMT program in the country. 

Brian is also the Chair of the Arts & Neuroscience group at the American Congress of Rehabilitation Medicine and sits on the Advisory Council of the Academy of Neurologic Music Therapy. He has been an invited speaker at numerous venues throughout the world at venues including: the American Academy of Neurosurgeons, Harvard Medical School, the American Congress of Rehabilitation Medicine, Stanford University, Berklee College of Music, The Neurology Foundation of India, and Google. 

His work has also been featured in Forbes, CNBC, The Huffington Post, Pitchfork, Mashable, The Boston Herald, XConomy, MedTech Boston and on Chronicle Boston.

Brian is an inventor on 2 patents related to MedRhythms digital therapeutic platform and was recently named to MedTech Boston's 40 Under 40 Healthcare Innovators for 2017.

Rhythmic Audio Stimulation in Action

 

Google News Alerts

A Google News alert  is a daily email digest from Google with links to news and article about a particular key word.  You can set one or more up here https://www.google.com/alerts

I have one running for neuroscience and another for stroke. It's how I first hearrd about Medrhythms and the fast track program

Set one up for your own area of interest to give it a try.

Hack of the Week

Make music a part of your life. Listen to music. Create music. Sing. Do it by yourself or with friends and family at a distance or online. Play an instrument. Or just play music while you walk and exercise.

Adding music can be simple and powerful.

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

2020-08-02

Ep 105 -- Heal the Brain with Jane


Sometimes, I interview a guest and we cover everything I wanted to talk about and it's a great conversation. Sometime we go off in a different way completely and I have to throw out my whole plane. And that also can turn into a great conversation. That's what happened with this conversation I had with Occupational Therapist Jane Connely , better known as "Heal the Brain with Jane."

With the occasional chanting and loud child in the background, we talk about Jane's path to OT, the core elements of the OT field that Jane gets so passionate about, and how she helps survivors heal their lives after their injury.

Bio

Jane Connely stands outside in a white T-shirt,

Jane Connely is a Occupational Therapist and neuro specialist in San Luis Obispo, CA. Jane graduated from University of Southern California with her MA in Occupational Therapy in 2013. Her experience working with persons post brain injury pushed her to continue her training to become neuro-developmentally trained (NDT) beginning in 2015 and after 140 classroom hours finished her training in January of 2018 through recovering function.

Through her work, Jane found the current system discharges survivors based on insurance rather than need, which caused a cycle of readmissions and increase in debility. The unmet needs of the brain injured population in San Luis Obispo County led her to begin Heal The Brain With Jane.

Heal The Brain With Jane values current research regarding neuroplasticity and the practical application of this research in the daily lives of the brain injury survivor. Our organization understands that brain injury recovery is a delicate balance of physical, cognitive, and emotional health. All aspects must be addressed in order for the survivor to reach the highest level of recovery. Additionally, it is vital that this population receives continued care as recovery requires continued maintenance.

Stroke and Social Media

I met Jane through Instagram. I'm sure it comes as no surprise that it is a great tool to connect with other stroke related folks. Each platform has its own culture. They all have value. The key is to connect with the one you need at a particular point in time. Or the one that you can help others through.

#Stroke on Twitter

This community seems to be largely medical and industry professionals and researchers. It can be an interesting place to learn more about what happens in the field. You still need to watch it with a critical eye, but it can be informative. Be warned, though. Some people use stroke not in a brain injury context, but in reference to sex acts so you occasionally encounter adult content

#Stroke on Instagram

Survivors dominate the Stroke hashtag in Instagram. You'll also find a lot of OTs, PTs, and SLPs on there. Basically, the professionals that work directly with survivors are on there. Much of the conversation is around inspiration, working through therapy, and living the best post stroke life you can. But there is other stuff, too, because life is complex like that .

Stroke communities on Facebook

There are dozens of stroke related groups on Facebook. Each group develops its own subculture based on the choices the creator or admin makes. In my experience, you'll find a lot more people asking questions or expressing their frustration about stroke life on Facebook.

These are broad generalizations that I hope  give you some context for some of the different groups. Explore a variety of them to find the communities that are right for you.

Like Minded

Jane recently launched a membership program called Like Minded. Here's how she describes it on her website:

Welcome to Like Minded. This is a membership program for brain injury survivors, their families, and caregivers. Like Minded includes authors, nutritionists, yoga instructors and clinicians who are passionate about filling in the gaps of post stroke and post TBI care. Our leaders are survivors themselves or caretakers with intimate understanding of the recovery experience. These individuals have realized that their unique journey with brain injury granted them access into a very special community. The brain injury community is a supportive group of people who have been through it all and come out the other side with a burning desire to help you through this difficult time.

Among the leaders/facilitators are several previous guest of the Strokecast, including:

It looks like a great program. You can learn more here.

Links

Jane on the web

https://healingthebrainwithjane.com/

Jane on Instagram

https://www.instagram.com/heal.the.brain.withjane/

Jane on YouTube

https://www.youtube.com/channel/UCgb7r20xJkSg6EDzOOasggg?view_as=subscriber

Jane on Facebook

https://www.facebook.com/healingthebrainwithjane/

Jane on Pinterest

https://www.pinterest.com/seejanepinning/

No-Brainer Podcast

https://healingthebrainwithjane.com/no-brainer-podcast-1

Peter Levine -- Stronger After Stroke

http://recoverfromstroke.blogspot.com/2007/05/peter-g-levine.html

The One You Feed Podcast

https://www.oneyoufeed.net/

#AbledsAreWeird on Twitter

https://twitter.com/search?q=%23AbledsAreWeird&src=saved_search_click

#Stroke on Twitter

https://twitter.com/search?q=%23Stroke

#Stroke on Instagram

https://www.instagram.com/explore/tags/stroke/

Transtheoretical Model of Change

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

Izzy Wheels

https://www.izzywheels.com/

Snake oil on Strokecast

http://Strokecast.com/SnakeOil

Dr. Karen Sullivan on Strokecast

http://Strokecast.com/Karen

Joe Borges on strokecast

http://Strokecast.com/NeuroNerds

Ella Sofia on Strokecast

http://Strokecast.com/Ella

Where do we go from here?


Here is the latest episode of The Strokecast

2020-07-05

Ep 104 -- Disability Services in Higher Education with Kaitlin Molloy


Click here for a machine generated transcript.

I have no idea what the back to school season will look like for college and university students in the fall. After all, right now it’s early July in 2020. COVID-19 is picking up pace. Protests are still happening. The presidential election is going to get really ugly. And the US is in full recession.

So school could look like anything.

And people like Kaitlin Molloy will see their workloads grow as we all navigate accommodations for students with disabilities in higher education.

Kaitlin’s job is to help students secure the appropriate disability accommodations in school. In this episode we talk about that process and discuss some options.

Hack of the Week

Kaitlin’s recommendation is to be planful.

If you are  starting or continuing higher education, reach out to the disability services staff as early as you can. Once they know you are there or are joining the school community, they can start working with you. Maybe that has impacts on appropriate housing or student employment. Maybe they can address academic challenges.

The earlier you start working with them, the more effective the plan you build with them will be.

Links

Whitney Morean on Strokecast

http://Strokecast.com/Whitney

Maddie Niebanck on Strokecast

http://Strokecast.com/Maddie

Ella Sofia on Strokecast

http://Strokecast.com/ella

Dr. Heather Fullerton talks Pediatric Stroke

http://Strokecast.com/pediatricstroke

JoCo Cruise Attendees on Strokecast

http://strokecast.com/tag/joco/

Where do we go from here?

  • If you’re attending college or university, find out who should be your contact in disability services, and build a plan with them early.
  • If you know someone who attends or works with a college, ask them to listen to this episode and share their thoughts. You can give them the link http://Strokecast.com/college
  • Subscribe to Strokecast for free in your favorite podcast app so you never miss an episode.
  • Don’t get best…get better.

Here is the latest episode of The Strokecast

2020-06-24

Ep 103 -- Dying in hospice, stroke care, and the life of a traveling nurse


Hospice is something I knew existed, but it's not something I've ever had an extended conversation about, until I spoke with Barbara Sussanne.  In her job as an RN, she helps patients and their families navigate the dying process in the final few months of life.

Before that, She worked as a travelling nurse in both some of the largest hospitals in the US and in some of the smallest. She shares her experience of working with stroke patients across her career

We recorded this conversation in March on a cruise ship. It was the last trip of Holland America's Niew Amsterdam before COVID-19 cancelled cruising. The ambient noise you hear is the buffet area of the Lido deck.

This sailing was a charter. It was the 10th annual JoCo Cruise, and the 8th one I've been on. Like in previous years both pre- and post-stroke, I had a great time. I'm booked for 2021 if cruising is still a thing that exists next year. If you like geeks, nerds, musis, crafts, karaoke, and other genre stuff, join us next year. You can learn more at http://JoCoCriuise.com

Bio

Barbara Sussanne graduated in 2002 with a Bachelor of Science in Nursing from Indiana University Southeast School of Nursing.

The first 13 years of her career, she worked in cardiac medicine and ICU Stepdown focusing on patients with heart problems and/or complicated medical problems.

The next 3 years she switched her focus to in home care. Barbara has been on caring for patients receiving medical services in their homes related to their illnesses.

A year and a half ago Barbara was called to hospice where she now works with patients and their families as they navigate through the dying process.

Links

Barbara Sussanne on Instagram

https://www.instagram.com/javajunkie_rn/

JoCo Cruise

http://Strokecast.com/JoCo

JoCo Cruise Discussions on Strokecast

http://strokecast.com/tag/joco/

Bill on Instagram

http://Strokecast.com/Instagram

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

2020-06-17

Ep 102 - Gait Training with the iStride and Dr. Kyle Reed


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 Reed looks at the camera in an outdoors heasdshot

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

kylereed@eng.usf.edu

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.be/vlv7T5PynIM

USF Article about iStride

https://www.usf.edu/news/2019/stroke-patients-relearning-how-to-walk-with-peculiar-shoe.aspx

iStride on NBC DFW

https://www.nbcdfw.com/news/local/stroke-shoe-retrains-the-brain/15/

Pilot Study

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

Abstract from the AHA Journal

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

Abstract from the APTA Conference

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

Constraint Induced Movement Therapy from Physiopedia

https://www.physio-pedia.com/Constraint_Induced_Movement_Therapy

Amy Bastion at the Kennedy Kreiger Institute

https://www.kennedykrieger.org/patient-care/faculty-staff/amy-bastian

Fashionable Canes

http://FashionableCanes.com

Canes on Etsy

https://www.etsy.com/search?q=walking%20cane&ref=auto-1&as_prefix=walk

Where do we go from here?

  • Check out the video above to see the iStride in action, and visit http://Moterum.com to learn more about participating in studies.
  • Share this episode with 3 people you know by giving them the link http://strokecast.com/istride
  • Lift your literal or metaphorical voice high and don’t be ignored in this time of social change
  • 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