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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