Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Friday, November 5, 2010

getting blackballed from stroke forums

As soon as I got home from the hospital I started particpating in stroke forums. First as a lurker, sometimes asking questions and eventually becoming a prolific poster of answers. This behavior got me kicked off of several forums for not following their rules.
Health Boards, ejected, No website with a forum is allowed to be posted
WEMove, warned because posting a link to a .com website.
MedHelp, warned because posted complete article, inluding attribution, copyright rules.
Stroke Survivors Advocacy Network, ejected, I think this was because I was emailing James Baranski - president of the NSA - describing how badly the NSA is missing its mission. That somehow got to the creator of the network and I was blackballed. 3 months later I tried logging in again and it worked, but my pictures and blogs were deleted, leaving my messages and some discussions intact. Well I won't be gracing them again.
I haven't given up. These are just minor irritations, they seem to have no concept of how easy it is to get an email address.

If they truly wanted to help survivors they would figure out a way to handle these minor problems. So I created this blog where I can spout off to my hearts content. So far the feedback has been good. I had saved most of my best postings and have recreated them here.
Posted by at
Labels:

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)