Sunday, October 15, 2017

Stroke Specific Things I Wish I’d Known Sooner

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance   www.unitedstrokealliance.org
The following was written by our Retreat & Refresh Stroke Camp director Marylee Nunley. I first posted it on this blog in 2012. I think it is worth re-publishing. Her husband John suffered a stroke and these are her thoughts based on her and John's new normal journey.
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by Marylee Nunley

Hearing early on (in a kind, gentle, and positive way) that this is a permanent condition, but still not to lose sight of great possibilities. To be informed that recovery takes lots of time and patience by all.
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The brain is injured and it may take up to six months or longer for it to heal and recover. After that time, the patient will be working with the undamaged parts of the brain through a lengthy but rewarding relearning process.
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Understanding that each time there is a new environment, the survivor may need to re-learn things (shower at home different from the hospital, bed not as convenient, meals served differently, TV remote different, etc.)
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How to find the handbooks from www.strokenetwork.org (online support group) or www.stroke.org (NSA) at the onset. The internet and Facebook is full of things that help families understand the different parts of care and rehab that will be happening. Find Facebook support groups, attend a support group, there is lots to learn and you'll benefit from connecting with others.
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Being given a list of stroke specific terminology would help, too.
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Stroke survivors may seem to understand way more than they actually do. My impression was that if he heard it, he understood just like I did. That couldn’t have been farther from the truth. Receptive aphasia means that the person with the brain injury doesn’t hear and process the words the way they are spoken and may not understand what is said or completely misunderstand what is said. This gets better, but for us, has never gone away.
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Progress will be in terms of months and years and for the rest of your life, not in just days and weeks.
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More about the caregiver role and what will be expected once going home and about burnout. No matter how much energy and commitment we have, there will be a time we’ll just get tired of the responsibility.
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More about aphasia----look at the person, go very slowly, know that even though they hear what you say, they may not fully understand.
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Support groups—both survivors and caregivers need them.
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What to look for with regard to depression (often comes out as anger or crying) from isolation and loss of parts of their life.
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Understand how frightened the patient is and how lost they are in the world and may not understand what’s really going on.
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Routine should become your best friend for a very long time.
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ADL equipment, gadgets and gizmos. There isn’t time for the medical community to provide all this information and they don’t have the means (financially, insurance runs out) short of funding of some sort of program following discharge. Here is where support groups can help.
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Understanding Health Benefits can be a challenge and making friends with a good social worker, discharge planner, or the insurance billing clerk can’t hurt.
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Disability application is long and tedious. There are books that can help. Make the adjudicator your friend and follow through with their requests.
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Well, that's my list. Undoubtedly you will have other items that you've encountered. If you want, go ahead and share them by leaving a comment. That way we all learn just that much more.
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Sunday, October 8, 2017

A Journey to Self-Acceptance

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance   www.unitedstrokealliance.org
The following is an article from the American Heart Association Support Network blog: 
by Angela Hager




Angela currently resides in Hoover, Alabama with her husband and two daughters. Her passions include stroke advocacy, maintaining a healthy lifestyle, writing and the art of Calligraphy. Sneak peeks into her personal and family life can be found on Instagram at angeladcalligraphy (Angela Dawn).

Stroke rehabilitation. Whether your stroke was diagnosed as major, mild, or somewhere in-between, rehabilitation is often a frustrating journey filled with every emotion imaginable. While each post-stroke journey is unique, I believe true healing begins the moment a Survivor not only acknowledges, but accepts, the one realization that we all must face no matter which area of our brain was affected: We are not the same person we once were nor will we ever be that person again.

For me personally, facing this truth was undeniably soul-crushing. I adamantly rejected the notion at the beginning of my rehab journey, as do many fellow Survivors. The mere thought of being permanently altered was enough to blanket me in a cloak of anger and bitterness. Denial became a daily crutch that I desperately needed; without it, I found it almost impossible to function.

However, as the days turned into months, I slowly began to realize that despite my best efforts, I was a different person. I began to accept my new challenges and limitations instead of continuing to fight what I knew in my heart to be true. As I learned to redefine a new sense of normalcy for myself, my focus also changed. Rather than fulfilling the role of a stroke victim, I became the hero of my own story; after all, I was a Survivor. I survived an experience that sadly, many do not. I had graciously been given a second chance and my eyes were finally opened; each day truly is a gift and tomorrow is never, ever guaranteed…

This past June marked my fifth-year post-stroke. My rehabilitation journey has been filled with ups and downs, tears of frustration and tears of joy. I have learned to take each day as it comes and to celebrate even the smallest of victories. When self-pity or depression tries to rear its ugly head, I simply close my eyes, put my hand over my heart and soak in the precious feeling of a beating heart…

No matter where you are on your own journey, I just want to encourage you to live your life to the absolute fullest. The first step in doing so is learning to love the new you, no matter how broken or damaged you may feel. Once you shift your perspective, you’ll find that life is in fact still beautiful, just as you are and always will be.

Wishing you all the very best,
~Angela
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Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

Sunday, October 1, 2017

A Stroke Can Happen at Any Age

These videos were originally posted by the American Stroke Association in previous years. https://news.heart.org/
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May 2015

Four teen stroke survivors who share a special bond are graduating from high school this weekend. Over a 2-year span, four KC-area highschoolers suffered strokes. Finding each other helped with their recovery. And this weekend, they’re all graduating - right on time.
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August 2014
Alex's Story

https://www.youtube.com/watch?v=OXiCOKwGxo0


The International Alliance for Pediatric Stroke and the American Heart Association/American Stroke Association are teaming up to spread pediatric stroke awareness. Watch Alex’s inspiring pediatric stroke story to learn more. We encourage you to support this awareness campaign by sharing this video with your friends, family and colleagues. With your help we can reach our ultimate goal of increasing research to better understand how to recognize, diagnose and treat strokes in babies, children and the unborn. To learn more about pediatric stroke and other ways you can help, visit: http://www.iapediatricstroke.org
http://www.StrokeAssociation.org
Thank you to our videographer and film editor Peter Soby of SobyVision! Contact: 402-670-2490
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August 2014
Rhys’ Story
https://www.youtube.com/watch?v=2Dqtbo5_W6w

The International Alliance for Pediatric Stroke and the American Heart Association/American Stroke Association are teaming up to spread pediatric stroke awareness. Watch Rhys’ inspiring pediatric stroke story to learn more. We encourage you to support this awareness campaign by sharing this video with your friends, family and colleagues. With your help we can reach our ultimate goal of increasing research to better understand how to recognize, diagnose and treat strokes in babies, children and the unborn. To learn more about pediatric stroke and other ways you can help, visit: http://www.iapediatricstroke.org 

http://www.StrokeAssociation.org 
Thank you to videographer and film editor Peter Soby of SobyVision! Contact: 402-670-2490
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Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

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