National Stroke Association - A Resource


The National Stroke Association is a US-based organization who's "mission is to reduce the incidence and impact of stroke by developing compelling education and programs focused on prevention, treatment, rehabilitation and support for all impacted by stroke."

This is a fancy way of saying "we help stroke survivors, and help minimize the chances that you'll have one".
I am a stroke survivor, and although I live in Canada, the infrastructure offered by such associations is appreciated - it is a fountain of knowledge. When I had my stroke, I knew nothing about stroke, and didn't know anyone close (in family, friendship, or proximity) that had suffered one. So I kind of had to go it alone.

Fortunately for me, after a couple of weeks in the Neurology ward of our major-trauma hospital, I was transferred to the rehab wing of a much smaller, closer hospital - handier to home and easier for family and friends to visit.
There are, I think, two really important therapies in getting better (different, but better) after a stroke:
  1. Family and friends that come to visit. You're going to be in rehab for weeks or months (for me, it was 93 days total - I'd say about 70 of those in rehab), and the more visitors you have, the better. It caused some minor embarrassment to me as I had a visitor(s) every single day of my stay. Some were not so lucky ... there was a young man on my ward who had one visitor during the 70 days I was there. Can you say "depression"?
  2. Knowledge is king. Knowing what's happening to you, what has happened to you, and what will likely happen in the future are powerful things. It gives you a sense of control when you most need it. Websites like the National Stroke Association are really helpful in helping you gain that knowledge. When the neurologist comes to your bedside and you have intelligent questions to ask - they engage, and I found they would spend the extra time with you. A smart, engaged patient gets the attention of good doctors and nurses.
Of course there's the standard rehab thing - learning how to walk, to speak, to think, to write all over again. But these two struck me as understated but really empowering.

1 comment:

  1. Ah Doug, I happen to think that both the NSA and ASA are worthless to survivors. This quote after asking the NSA a general question on treatments for spasticity tells it all.
    'this question falls under our organizational guidelines as a medical inquiry and we defer to the medical community to respond.' I was appalled, I wasn't asking for a specific therapy just what were the therapies available. The UK association and the Australian ones at least try to support survivors. The StrokEngine is actually the best place for knowledge.
    Dean

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