After hearing that President Obama reads 10 personal letters a day I sent a letter to him recounting my efforts at stroke rehabilitation. I think he actually read my letter, I recieved a form letter in return thanking me for writing.
The rest of the letter is just an explanation of what stroke recovery looks like to my eyes and it is not a good experience.
This was one of the points I made.
Start a 10-20 year longitudinal research project to get fact-based information on what works as survivors complete their recovery. What is really needed is a massive research program following the millions of survivors and documenting what works for recovery. Only by finding the facts can we actually have a decent discussion on what works and provide survivors with a palette of options to help them recover. This is what I think NINDS(National Institute of Neurological Disorders and Stroke) should focus on. There seems to be no way for survivors to find out what is occurring in NINDS probably because we are seen as old people with impaired intelligence.
If you want to write here is the address:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
Yes, no medical personel, no politician is going to listen to the "demented ravings" of a stroke survivor. Really why would they, we are reconsidered of no use to the country, put us away in a home and forget about us. Nobody, not even our family, like us, so who will stand up for us.
ReplyDeleteYes, no medical personel, no politician is going to listen to the "demented ravings" of a stroke survivor. Really why would they, we are reconsidered of no use to the country, put us away in a home and forget about us. Nobody, not even our family, like us, so who will stand up for us.
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