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| http://www.unitedstrokealliance.org/ |
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The following was posted on this blog seven years ago. I happened to run across it last week and I thought it would be helpful to repost it. Marylee is the Director and founder of Retreat & Refresh Stroke Camp. Her husband had a stroke in early 2000. As a result, through her and and her husband's experiences with post stroke daily life, she thought how beneficial it would be, to both the stroke survivor and the caregiver, to be able to spend a weekend outside the now
new-normal daily routine. It all started in 2004, with friends and acquaintances, at a campground that had cabins and handicap-friendly facilities. From there it blossomed into 35 annual weekend camps organized throughout the United States, and is still growing. Over the past fifteen years these camps have given thousands of stroke survivors and their caregivers a much needed break, a much needed rest, and an uplift from their normal daily routine. Plus whole lot of fun!
Marylee probably could expand this list today after seven years of caregiving. Maybe, some day I'll ask her. If you think you can add more, let me know.
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Stroke Specific Things I Wish I’d Known Sooner
by Marylee Nunley
v 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.
v The brain is injured and it may take up to six months 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.
v 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, etc.)
v 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.
v Being given a list of stroke specific terminology
v 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.
v Progress will be in terms of months and years and for the rest of your life, not in just days and weeks.
v 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.
v More about aphasia----look at the person, go very slowly, that even though they hear what you say, they may not fully understand.
v Support groups—both survivors and caregivers need them.
v What to look for with regard to depression (often comes out as anger or crying) from isolation and loss of parts of their life
v Understand how frightened the patient is and how lost they are in the world and may not understand what’s really going on
v Routine should become your best friend for awhile
v 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
v 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
v Disability application is long and tedious. There are books that can help. Make the adjudicator your friend and follow through with their requests
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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