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| Dean Reinke Deans’ Stroke Musing |
There is a competition at http://www.webicina.com on uses of social media to empower patients and medical staff. This is my story.
As a 5 year stroke survivor, there is a lot to be thankful about; I’m alive and slowly rehabilitating. May 21, 2006 was the day it started. I had just returned from a 6 day strenuous whitewater canoeing trip on the Dog River in Ontario. This included a 1.5 mile portage so I was definitely in shape and excellent health. I drove home alone thru the UP of Michigan. I collapsed the next morning walking across my bedroom floor, called to my wife to help me get up but she was already calling 911. It was a massive stroke leaving me in critical condition. I received tPA within the hour but still ended up with huge dead spot in my brain and left side paralysis.
I was waiting for my medical staff to give me some concrete information on rehabilitation and then I could follow that and recover. That never occurred, I don't think my doctors in 30+ years of practice had ever figured out anything about stroke rehab. Since my cognitive abilities were spared, as soon as I got access to a computer I found a number of stroke forums and everyone on them was looking for information that no-one had gotten from their doctors. It became painfully obvious that all stroke survivors are on their own, they need to figure out their own therapy protocols.
By reading and participating in 16+ stroke forums around the world I found my voice, first as a lurker, then posting a few questions and finally becoming a prolific answerer. This blog is the final result because forums have rules that I tended to break.
Of the 5 stages of grief:
Denial, Anger, Bargaining, Depression and AcceptanceI am still in denial that I won't recover, I refuse to accept that compensation is the best I can do. Anger still exists against the medical establishment that has not set forward a strategy for stroke rehabilitation for all survivors. Bargaining I never did. Depression was from the total lack of communication about what recovery looks like. My vision was that in 6 months I would be canoeing again. With no discussion from any medical staff that this was impossible or even any information at all, depression was inevitable. I haven't accepted my physical limitations because I know I will eventually get them back. I have enough drive, persistence, pugnacity and smarts to move my brain functions around. In any event I set myself a goal to change stroke rehab worldwide, this is probably an insane belief. And the way to do that is to research and plan what needs to be done. This blog is my starting point and from some of the responses it's doing a good job. I now have 940 blog posts (SSTattler: in Nov/2011) on stroke and I believe it is the most widely read stroke blog in the world.
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