I got this idea from a fundraising appeal. If we don't set goals we will never get anywhere.
1. The hard truth is that the stroke medical world doesn't really care if we get better or not. They get paid regardless of how well we recover.
2. The existing stroke associations don't care either because the more disabled we are the more likely we will be pitied and thus can be used to pull in more donations.
3. Researchers don't care about us. They are just into finding the next interesting project that will pull in funding money for their lab.
4. We are completely on our own and the sooner we realize that the better off we we will be.
I am being an agent provocateur here but someone has to be the asshole that points out that no one is going to do a thing for you unless there is a payoff back to them.
I totally agree. Most decisions are made based on finances.
ReplyDeleteMy daughter has type 1 diabetes, and from the day of her diagnosis, organizations have been on the brink of a cure. Her early LPN in endocrinology told us not to believe (or get our hopes up) about any news because a cure had already been "very close" for as long as she could remember. And research is often done by organizations that have a vested interest in diabetes staying around. A cure (or even a preventative) would cut off a huge revenue stream (pumps, pump supplies and other related products are established cash cows).
Ditto stroke. Develop a technique for preventing the cascade of death and what about the money spent by/for those disabled by stroke?
So, it's left to us. We are unlikely (not funded) to develop anything to prevent disabilities, but we can figure out what actually works in rehab, then let someone else drum up money to support studies to prove what the stroke population already knows.
Let's get that done, okay?
Hard truths, but truths nonetheless.
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