I sent a couple of emails to NSA - National Stroke Association. None of them were answered.
This one to James Baranski - president, you can find his email address on the http://www.stroke.org/ website if you want to try and get a reply. This was after sending him an email about how directors were chosen
Mr. Baranski,
It was nice chatting with you yesterday. I was expecting a callback from a minion proposing that I go to a stroke group. Thanks for listening and while I have your attention a few words on survivors. I think there are two categories of survivors, those who have accepted their limitations and are just trying to get thru the rest of life, and those like myself who are very cognitive and want detailed information of what can be done to get back to real life. Your organization seems to focus on the first group who are satisfied with the social aspects of a stroke group.
My vision of what stroke rehab looks like this; During the acute stay at the hospital patients are given a description of what their infarct looks like, showing them a model of the brain and pointing out where the epicenter was and what the size of the penumbra is. Then being told which areas were affected (motor control of arm/leg, sensation in these areas, etc.).From there being told of the penumbra area that was affected and the fact that that area will normally recover in 6-12 months because it was just knocked unconscious. Then going on to explain what is being done to prevent a second stroke, anti-coagulants, clipping or glueing, etc. Next they are told about the therapies that are possible even if no movement is possible.
Music therapy - http://www.sciencedaily.com/releases/2008/02/080219203554.htm
Kenny Rogers Music Second to None at Healing Stroke Victims
More research on music listening for the early part of stroke recovery.
http://www.prefixmag.com/news/kenny-rogers-music-second-to-none-at-healing-strok/27242/
Personally I don't think I could have done this.
****Passive movement - This has recently been found to be useful in starting neuroplasticity
http://www.ncbi.nlm.nih.gov/pubmed/15003755
The effects of repetitive proprioceptive stimulation on corticomotor representation in intact and hemiplegic individuals.
****Muscle vibration may enhance controlled movement in people with central motor disorders, pg. 787
Journal of Rehabilitation Research and Development Released: Wed 10-May-2006, 00:00 ET
****Mental imagery - some studies are listed here, I don't have direct access
Using Motor Imagery in the Rehabilitation of Hemiparesis , .
Archives of Physical Medicine and Rehabilitation , Volume 84 , Issue 7 , Pages 1090 - 1092
J . Stevens
Mental imagery for promoting relearning for people after stroke: A randomized controlled trial1 , *1 .
Archives of Physical Medicine and Rehabilitation , Volume 85 , Issue 9 , Pages 1403 - 1408
K . Liu , C . Chan , T . Lee , C . Hui-Ch
Mental practice and imagery: a potential role in stroke rehabilitation. Author's reply
R VAN LEEUWEN, JT INGLIS, J RAVEY - Physical therapy reviews, 1998 - cat.inist.fr
****Mirror-box therapy
Rehabilitation of hemiparesis after stroke with a mirror
Altschuler EL, Wisdom SB, Stone L, Foster C, Galasko D, Llewellyn DME, Ramachandran V
The Lancet - Vol. 353, Issue 9169, 12 June 1999, Pages 2035-2036
I assume you have at least one employee who is keeping track of all the research out there and is providing this to all of your employees. I am very limited since I can only see the abstracts and have to assume what the protocols might be. This would be a major help for the clinicians and the survivors if there was a central place where research was commented on and follow-up interviews written up.
The next topic to be given to survivors is everything that is known about neuroplasticity. Basically that your recovery up to 6 months is spontaneous recovery from the unconscious brain cells waking up. Any recovery past that(and it can take years) will be due to retraining other parts of your brain to take over. This does mean that the survivor will need to become insane because neuroplasticity requires that hundreds of thousands to millions of repetitions are needed to accomplish it.
Albert Einstein has a quote 'Insanity: doing the same thing over and over again and expecting different results.' Does this imply that all stroke survivors that believe in using neuroplasticity are insane for that belief? Or should we just ignore Einstein because we are smarter than him?
One last item,
The NSA seems to be geared toward providing information to medical staff and then hope that they provide that information to survivors. This is proven by your Stroke Center Network (SCN) A program of National Stroke Association. SCN is a membership program for hospitals, specifically stroke teams, dedicated to advancing stroke care at their facilities. Survivors cannot join this, I tried and was specifically told no.
This focus is completely wrong. THe NSA should provide the information to the survivors and caregivers. Like the breakfast saying for bacon and eggs - the chicken is involved but the pig is committed. The medical staff is involved but the survivor is committed. By changing the focus to the survivor, the survivor will make sure that the medical teams know what the possibilities for rehabilitation are out there and force the medical staff to keep up. The current situation of the NSA working mainly with doctors has been proven to be ineffective. Just go to any one of the websites and see how many times the survivors ask, 'My doctor told me I wouldn't recover, what can I do?' And immediately another survivor will reply, 'Don't listen to your doctor. I recovered quite well. Get another doctor that actually believes in helping you recover.'
This closely follows what my doctor did, which was to tell me nothing about rehabilitation, I'm sure by now I know more than he does. I think my doctor still believed in the Hippocratic dictum that ‘It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’
I assume you have a vision or strategic person in your organization who should be thinking about these things. If not, a real cognitive recent stroke survivor would be glad to provide input on a 5 to 10 year plan. I have met numerous survivors that fit the bill.
I have numerous ideas of what stroke research should be done.
Curriculum input for doctors and therapists in college should be a focus and retraining of existing medical staff is necessary.
A stroke rehabilitation textbook would be a good first step.
I have numerous other opinions but this will do for now.
Thanks for your time,
Dean Reinke
This one to James Baranski again
Why can't the NSA provide something similar? From the British Stroke Association. I can't even find any research information on what the NSA funds/supports. Their way of contacting them is much more user friendly.
http://www.stroke.org.uk/contact_us.html. Sorry about the critique but there seems to be no other way to let you know that your organization is completely failing in your mission statement.
"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." bolded are my emphasis.
Your Clinical Trials Resource Center doesn't give any useful information.
This one to James Baranski and Taryn Fort, also at the same website.
I am really disappointed that the AARP magazine had an article on Brain Health that mentioned neuron growth before NSA had any information on it. While they didn't use the word neurogenesis, they did mention growing new brain cells. This is symptomatic of the lack of leading edge knowledge distributed by the NSA to survivors. I can't talk about what you distribute to medical staff. I also did not see anything your org has produced on NOGO growth receptors or C3a peptides for generation of new nerve cells.
In general I don't see any 5,10,15,20 or 25 year strategies. Do you not have anyone keeping track of the latest in research? Someone in your organization should have recommended all staff read the book by John J. Ratey, MD, author of Spark: The Revolutionary New Science of Exercise and the Brain.
This was also not replied to. I would at least expect a Thanks for writing brush off. This is completely pathetic. You could try sending an email to stroke@stroke.org but those are never answered. It feels like David and Goliath and you know who won that one. Brushing me off was completely the wrong thing to do.
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