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?

• Follow Barbara on Instagram @JavaJunkie_RN
• Follow Bill on Instagram @Bills_Strokecast
• Share this episode with someone you love by giving them the link: http://Strokecast.com/Hospice
• 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

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 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

Ep 101 -- Youth Stroke and Habits with Ella Sofia

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	http://goodreads.com/ellasssofia
Ella on YouTube	https://www.youtube.com/channel/UC-HWP8LcCycox4OB1N2tXnw
Book a Consultation	https://retrainyourbrain.ca/book-a-consultation/
Joe Borges on Strokecast	http://Strokecast.com/NeuroNerds
The NeuroNerds Podcast	https://theneuronerds.com/
My Stroke of Insight	http://drjilltaylor.com/book.html
Pediatric STROKE ON strokecast	http://Strokecast.com/pediatricstroke
AVM Information	https://www.totalhealth.co.uk/clinical-experts/mr-christos-tolias/arteriovenous-malformation-avms-faqs

Where do we go from here?

• Visit http://retrainyourbrain.ca to learn more about Ella and her work.
• Share this episode on your favorite social platform by using the link http://strokecast.com/ella
• Subscribe to 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

Ep 100 — Strokeaversary 3

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

Here is the latest episode of The Strokecast