A great philosophical question that hundreds of thousands of Americans each year need answers to. According to the national Stroke Association there are over 6 million US survivors.
I can't talk about other country stroke associations but in my limited view they seem to be for medical staff only with a bone thrown to survivors with stroke support groups.
The ASA has no place to find out what research it supports and no survivor office.
The NSA has no place to find out what research it supports and no survivor office. It does have an Advovacy office http://www.stroke.org/site/PageServer?pagename=advocacy
This seems to be more tuned to what the NSA wants rather than what survivors may want. I contacted Jill Thiare because her name was listed in one of the emails.
advocacy@stroke.org was also listed as a contact email address but that one doesn't work. My question to them was: How do I advocate what the NSA does?
Your mission statement is as follows:
"We provide education, services and community-based activities in prevention, treatment, rehabilitation and recovery. National Stroke Association serves the public and professional communities —people at risk, patients and their health care providers, stroke survivors, and their families and caregivers."
You are failing in the part about rehabilitation and survivors. All you want survivors for is to advocate for your goals. Your goals are not the same as a survivors goals.
No answer on how survivors get involved in the NSA except as volunteer gofers.
The World Stroke Organization has no survivor office.
The APTA seems to have no way for users of PT services to interact with the organization.
The AOTA seems to have no way for users of OT services to interact with the organization.
What we really need is a truly survivor based and run organization. Numerous individuals have set up their own forums and web pages but there is no cohesive understanding of where stroke rehab should go. If we don't do something now the baby boomers coming down the line will have nowhere to go to to get decent information. Similar to what we have now where everyone assumes that your spontaneous recovery is good enough for you.
No one is taking responsibility.
Who will step up to the plate? ANYONE?
It makes me crazy that there are 6 MILLION stroke survivors in this country, but they are invisible and no one has the mission of finding a reliable recovery therapy. Where are they all, Dean, and why aren't they and their families up in arms about being ignored? Where are the crusaders?
ReplyDeleteIt's the belief that the medical staff is infallible when they tell survivors that where they are at is the best they can expect. So there are two routes, teach medical staff about rehab or tell survivors that they are on their own, start researching.
ReplyDeleteWell don't expect anything from the National Stroke Association. This comment from them to practically any question from a survivor tells volumes about their focus; 'this question falls under our organizational guidelines as a medical inquiry and we defer to the medical community to respond.' The medical community has already responded; 'I know nothing'. You are on your own, good luck and good-bye.
ReplyDeleteI'm wondering if we're looking in the wrong places. A stroke is a traumatic brain injury. People with other types of physical challenges have also had a traumatic brain injury. Maybe there's a quadriplegic somewhere who has the job.
ReplyDeleteIn a NSA year-end email request for money this line stood out.
ReplyDeletewe aim to ensure that every healthcare professional receives up-to-date information on stroke care, that every individual has access to potentially lifesaving stroke prevention information.
You will notice that there is no mention of providing rehabilitation information to survivors. I can't see any reason to donate to the NSA since they are not for survivors.