The key point here is uniting the finest minds. In stroke nobody seems to want to attempt that. The WSO had their World Stroke Organization Synergium in 2010 and you can see why in my opinion it is totally worthless. You as a stroke survivor are totally screwed until the complete stroke leadership is deposed and removed from any part of this.
My list of finest minds:
Dr. Steven Wolf;
Peter Levine;
Dr. S. Thomas Carmichael;
Dr. Bruce H. Dobkin;
Dr. Dale Corbett;
Dr. Michael Tymianski, of the Toronto Western Hospital Research Institute
in Canada;
Dr. Michael A. Moskowitz ;
Dr. Watson, IBM computer;
Dr. Google;
myself;
Dr. Amy Shissler;
Barb Polan;
Jo Murphy;
Rebecca Dutton;
My list of those that should NOT be invited:
Dr. William M. Landau - his ideas on spasticity are appalling;
Matt Lopez, president of the NSA;
Dr. Mariel Jessup, president of the ASA;
WSO President - Steve Davis (Australia);
Immediate Past-president WSO - Bo Norrving (Sweden)
http://www.alphagalileo.org/ViewItem.aspx?ItemId=157007&CultureCode=en
Dean,
ReplyDeleteI just read the 2010 report. Has much changed in the last 5 years?
Has there been any more recent world or USA gatherings or updates on the overall state of stroke prevention & rehab?
What you propose really needs to happen!
There is no sense of urgency out there and there needs to be.
I am 2.5 years from stroke, with little or no spontaneous recovery. I think have had about as good of care as possible in today's medical environment, with baclofen 3x per day, Prozac, Botox every 3 months, frequent OT, & PT, wear an AFO, use hand & wrist splints, just resumed e-stim trying to get wrist to work better & grasp something, but my team really does not have much more to offer. I continue to work at it daily and making progress, but frustratingly slow. Still have left side hemiplegia, central nerve pain, spasticity in whole left side, barely use left hand, walk with a cane. At the same time I am actually very healthy (besides the brain damage in upper motor area) no speech, memory, or cognition problems. I am only 60 and do not want to live the rest of my life like this!
There seems to be a bewildering amount of research, devices, methods. and efforts in the medical community, but no coordination, except your blog! Plus insurance will not pay for anything new or un-proven.
As you know, there are millions living with this type of chronic disability. Seems like it should be a big enough market to attract investment, but not happening!
I hope I live long enough to see & use effective therapies!
Keep it up!
Geoff, I don't think anything is going on in the past five years. This post of mine from 2012 is what should be followed up by our failures of stroke associations. Guideline -Diagnosis and treatment of ischemic stroke. http://oc1dean.blogspot.com/2012/10/guideline-diagnosis-and-treatment-of.html You could try sending an email to Matt Lopez, president of the NSA, also a stroke survivor. But he blew off my question to him. MLopez@stroke.org
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