2019-08-25

Ep 083 -- Identity Loss after Stroke with Dr. Debra Myerson


I first encountered Dr. Debra Meyerson, Ph.D, through Twitter. She has written a book about stroke and the loss of a sense of identity that follows it. More than a memoir, it tells her story as she navigates the new, post-stroke world, and the stories of a couple dozen other survivors and how their reaction mirror or differ from hers.

[caption id="attachment_851" align="alignright" width="166"]A light brown stuffed bear sits on a blue couch reading a book. Production Assistant Oatmeal reads through Identity Theft.[/caption]

She wrote the book because in her experience, not enough rehab facilities and hospitals adequately prepare survivors for the changing sense of self they are likely to encounter, especially as they face the real world with new disabilities.

She sent me a copy of the book, and I'm happy to feature her and husband/caregiver Steve Zuckerman in this week's episode.

Bio

(From https://www.identitytheftbook.org/about-deb-meyerson)

Debra Meyerson headshot"My name is Debra Meyerson"

It took me two years to re-learn that sentence!

In 2010, when I was a professor at Stanford, I suffered a severe stroke. I lost all movement of my right arm and leg; even worse, I lost all ability to communicate.

Cover of Identity Theft: Rediscovering Ourselves after StrokeWhile I won my struggle to survive, much of my identity – as a Stanford professor, a speaker and writer, an athlete, a mother and a wife – was taken from me. My mind was working but I was trapped inside a broken body, unable to do what I used to do. And maybe even worse, I couldn't tell anyone what I was experiencing.

With hard work and a lot of help I regained enough mobility to again be independent, and have recovered some ability to speak. But I have come to accept that I will never again have all the capabilities I once had.

I'm still slowly recovering more of my abilities and am continuing to rebuild my identities. I've found few resources to help with the emotional piece of this journey, and have heard the same from many of my fellow survivors. That's why I wrote "Identity Theft: Rediscovering Ourselves after Stroke (May 2019)."

Cover of Tempered RadicalsAs a professor, I studied and taught about how small, everyday actions can disrupt what’s normal, chip away at the status quo, and create positive change. That work led me to write Tempered Radicals, first published in 2001. ​Now, in a very different context, I live by the message I previously taught. With small, deliberate efforts, and a lot of conscious choices, I continue my slow recovery, discover more about myself, and shape my new identities.

Hand in Hand Show

The Hand in Hand show is another stroke related podcast that's been around for a while.

Cam, the host, is one of the survivors featured in Debra's book. She talks about navigating the challenging world of finances and disability payments.

Last year, Debra was a guest on Cam's show. You can hear that interview here:

 

And because this is simultaneously a large and a small community, I was also a guest on Cam's show earlier this year. You can hear that conversation here:

 

Ischemic Stroke Without a Clot

One of the interesting science-y thing about Debra's stroke, is that apparently there was no clot.

There are 2 types of strokes that we generally talk about: a hemorrhagic stroke which results from a bleed in the brain and an ischemic stroke which result from a clot in the brain.

But ischemic doesn't actually mean "clot." It refers to a lack of oxygen and glucose getting to the cells. Ischemia can result in cell death because the cells starve. Ischemia and cell death is usually the result of a clot blocking blood flow to part of the brain, which is why we usually treat those terms as synonymous.

In Debra's case, she had a vertebral artery dissection. That means the lining inside one of the arteries in the back of her head was damaged. In many cases, this allows clots to form, which break off and float further into the brain where they cause a stroke. In this case, though, the damage was such that the lining of the artery itself flapped over and blocked blood from getting through. This appears to have resulted in TIAs (transient ischemic attacks) in the months leading up to her stroke.

This is one more reason why if you experience stroke like symptoms or other weird neurological stuff, it's imperative to seek medical treatment ASAP, even if the symptoms go away.

Anecdotally, many of the young, athletic ischemic stroke survivors I've spoken with got their strokes from a vertebral artery dissection. A sharp blow or sudden twist in the neck can damage those arteries and result in a stroke months or years later.

Again, anecdotally, I've also heard a number of stories about folks having a stroke from a vertebral artery dissection due to a neck adjustment by a chiropractor. I understand many chiropractors use a different technique now, but be very cautious about letting anyone adjust your neck. The risk just isn't worth it.

Ischemia is an interesting thing and isn't always bad either. Dr. Nirav Shah talked to us about Remote Ischemic Conditioning back in episode 55: http://Strokecast.com/RIC.

What are you working on?

At the top of the page on this website, you see links to other stroke podcasts and Facebook groups. I'd love to expand/improve those lists.

If you have a stroke-related:

  • Podcast
  • Book
  • YouTube channel
  • Vlog
  • Blog
  • Virtual support group
  • Real life support group
  • Movie
  • ..other project

I want to know about it and maybe feature it on the show or this website.

Just fill out this form: http://Strokecast.com/MyProject and we can further support this community.

Let me know if you have any questions: bill@Strokecast.com

Hack of the Week

Debra has found tremendous freedom in her Hickies.Hickies alternative laces

Hickies are an alternative to shoe laces that allow folks to secure their shoes with one hand or even to turn traditional lace up athletic shoes into slip-on/slip-off shoes.

They can be a great alternative to Velcro shoe closures because, quite frankly, the selection of good-looking Velcro based sneakers is pretty slim.

You can learn more about Hickies here: https://www.hickies.com

Links

Identity Theft: Rediscovering Ourselves after Stroke https://www.identitytheftbook.org/
Buy the Physical, Kindle, or Audio book on Amazon https://www.amazon.com/Identity-Theft-Rediscovering-Ourselves-Stroke/dp/1449496318/ref=tmm_hrd_swatch_0
Stroke Forward  -- Debra and Steve's Non-Profit Http://strokefwd.org
Tempered Radicals: How People Use Difference to Inspire Change at Work https://www.amazon.com/Tempered-Radicals-People-Difference-Inspire/dp/0875849059/ref=sr_1_2
Tempered Radicals: How Everyday Leaders Inspire Change at Work https://www.amazon.com/Tempered-Radicals-Everyday-Leaders-Inspire/dp/1591393256/ref=sr_1_3
Rocking the Boat: How Tempered Radicals Effect Change Without Making Trouble https://www.amazon.com/Rocking-Boat-Tempered-Radicals-Without/dp/1422121380/ref=sr_1_1
Debra on Twitter https://twitter.com/identity_stroke
Debra on Facebook https://www.facebook.com/identityandstrokebook/
Debra on LinkedIn https://www.linkedin.com/in/debra-meyerson-identityandstroke/
Debra on Instagram https://www.instagram.com/identityandstroke
Debra on YouTube https://www.youtube.com/channel/UCu9xxw1RyUaHX55vXkuuo8w/videos
Debra on Good Reads https://www.goodreads.com/author/show/516811.Debra_Meyerson?from_search=true
Debra on Book Bub https://www.bookbub.com/profile/debra-e-meyerson
Identity Theft on Net Galley https://www.netgalley.com/catalog/book/161798
Debra on the Hand In Hand Show https://www.handinhandshow.com/2017/12/02/episode-47-debra-meryerson-rebuilding-identity-one-step-time/
Bill on the Hand in Hand Show https://www.handinhandshow.com/2018/06/03/episode-73-bill-monroe-stokecast/
Hickies alternative laces https://www.hickies.com/
Submit Your Project http://Strokecast.com/MyProject

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

No comments: