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.


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

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