Deans' stroke musings

Changing stroke rehab and research worldwide now.Time is Brain!Just think of all the trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 493 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:

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's quite disgusting that this information is not available from every stroke association and doctors group.
My back ground story is here:http://oc1dean.blogspot.com/2010/11/my-background-story_8.html

Tuesday, January 1, 2013

What would a great stroke association look like?

1.  It first would have a great outreach to survivors. This can be copied from the British Stroke Association.
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Here at the Stroke Association we are looking for a representative sample of people affected by stroke to take part in a reader panel to provide feedback and advice on our written information publications and help us to be really sure that they are meeting the needs of stroke survivors and their carers.
Reader panel members will be sent a range of publications by post or email to read at regular intervals throughout the year and will be asked to provide a range of feedback, via a method appropriate to your needs.
Whether you are a stroke survivor; a family member, a carer or friend of someone who's had a stroke; or you have an interest in stroke, if you think this role sounds interesting we want to hear from you!
To express your interest and request a role description and application form please send your name, address, email address and telephone number to us by emailing: info@stroke.org.uk
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2.  It would have a strategy and vision for each 5 year period to 25 years in the future. This would be updated on a yearly basis.
3.  It would contain a complete database of all stroke research for the last 200 years. Available to doctors, therapists, researchers, survivors and caregivers.
4. Textbooks would be updated every two years. The goal of transferring research knowledge to clinical use within 3 years, instead of 30 years.
5.  It would be the acknowledged leader in everything to do with stroke. No layperson or doctor/therapist  would upstage the organizations knowledge.
6.  Research would be sponsored. Like the Michael J. Fox Foundation decisions on research would be decided quickly.  Myelin Repair and the Alzheimers Association also sponsor research and should be emulated.
7.  The latest news on stroke would be reviewed weekly  to determine what the response should be, news release, update strategy, update database.
8.  In the US a similar law  to the  National Alzheimer’s Plan would be created for stroke.
9. These statements would never be used;
     a.  'this question falls under our organizational guidelines as a medical inquiry and we defer to the medical community to respond.' - direct quote from the NSA
     b.  'All strokes are different, all stroke recoveries are different'
     c.   'You won't recover'
     d.  'You have hit a plateau'
10.   All stroke protocols are fully documented and available to all survivors. Therapists, doctors and hospitals  found not using them will be shamed.
11. A passion for stroke rehab and research would exist in all employees.
12. The leader and board of directors would be survivors.
13. Every survivor would be contacted in the first week.
14. The tipping point for stroke will be achieved with breathless anticipation for each research result. 
15.  The president would have an open door/email policy for all survivors.
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With 7 million survivors in the US the donor pool is huge, and they would be more likely to donate to actual work rather than the nebulous prevention laziness.
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Now we just need a large donor to instigate such an organization and a management person to pull it off.


You have to dream big, nothing occurs without taking chances. And a few survivors have told me I must love risk-taking - maybe too much.

1 comment:

  1. I absolutely love your phrase Nebulous prevention of laziness and have borrowed it. Absolute GOLD star.
    Just another left alone Stroke Survivor making it on my own, with help from the internet.

    ReplyDelete