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

Thursday, September 2, 2010

stroke survivors sayings

During therapy of acute and chronic rehabilitation there are numerous sayings that are given to us. This is my opinion on the meaning of them.


1. Recovery takes place during the first 6-12 month period. This is probably from the blood being reabsorbed in a hemorrhagic stroke and for an ishemic stroke the penumbra area was knocked unconscious and recovers in that timeframe. This is what can be called the spontaneous recovery. The stroke recovery can continue for years and medical staff that repeat this have not been following research in the last 10-15 years. Neuroplasticity has proven that recovery can take place even years later.

2. You will not recover. With hard work there will be some recovery, this is only true if the survivor gives up trying to recover. In this case you should definitely not listen to your medical staff.

3. Use it or lose it. Basically what it is trying to say is that if you don't use your brain to control your body that part of the brain will lose the ability to be able to control the body part. So you get the comments that you need to keep working on even the slightest movements. This seems to be the reason that there is this great push to get movement in the early months of rehabilitation. I think in some cases this is incorrect. For example in my case I have a huge dead spot in my brain so I can't lose anything more by not using it, there may be pieces of the penumbra that this would fall under and be able to lose, unless the idea is that there is a backup location for brain control.

4. Do not exercise spastic muscles because it may make spasticity worse. I believe this is an incorrect assumption now. Here is an article on it about CP which I think also applies to stroke spasticity.
http***www.aaippt.org/STRENGTHTRAINING.html
This study refutes that notion.
http://www.strokeupdate.co.uk/2009/12/strength-training-in-stroke-p...
This book also reports on the controversy.
http***books.google.com/books?id=BJcL3enz3xMC&pg=PA107&lpg=PA107&dq=strength+training+spasticity&source=web&ots=lBsggzEKoY&sig=wPcjRkk-mJUZBGHgPYNzMZKP6xI&hl=en&sa=X&oi=book_result&resnum=6&ct=result

Anyway, now I try to exercise every muscle on my affected side even if the form doesn't look good. A lot of this is the difference between Bobath therapy vs. Brunnstrom therapy, Rather than trying to summarize it here I will point to a paper that discusses both. Diversity in Neurological Physiotherapy: A
Content Analysis of the Brunnstrom/ Bobath Controversy - http://www.informaworld.com/smpp/content~db=all~content=a713795658

5. All strokes are different and all recoveries are different. (This has to be the stupidist statement). While I do believe that all strokes are different based on what part of the brain has died, saying all recoveries are different is just an excuse to not do the research that would point to a fact-based model of stroke rehabilitation.
6. Recovery is proximal to distal. Proximal is closest to the body, distal is furthest away. This would be saying that the shoulder, arm, hand, fingers would recover in that order. Based on where control is located in the brain this makes no sense at all. I and lots of other survivors heard this quite a bit with no research specified to back this up. It is true that shoulder and arm muscles are needed to deliver the hand to the work area.
7. You won’t recover’ spiel. This was a very common question on the stroke forums, with other survivors always replying, ‘I was told I wouldn’t recover and I am doing just fine. Don’t listen to your doctors, they don’t know anything.’
8.It seems we are once again left hanging with '’We don't know, try something yourself'. As Sargeant Schultz used to say, 'I know nuthin'
9. You're looking good. I absolutely hate this term. I may look good but the invisible deficits are there for me to experience.
And two about rats:
Amy Farber was diagnosed with a very rare disease, LAM, lymph-angiolio-myomatosis. She co-invented a revoluntionary web service with MIT Media Lab that enables patients to participate in the search for their own cures. For the past five years Farber has been battling not only her own disease but also the wall of resistance erected by those who believe that a patient can make about as much of a meaningful contribution to the process of scientific discovery as a laboratory rat.
"and it seems we are again thrown back to [a] statement from the 80s, saying that 'The outlook for stroke therapy is excellent ... if you are a rat.'"And the complete failure from the National Stroke Association: A question on spasticity therapies.'this question falls under our organizational guidelines as a medical inquiry and we defer to the medical community to respond.

3 comments:

  1. I have four years of survival after stroke and brain hemorrhage. Nurses offered to send me home in a wheelchair and diaper after two extra months of unrehabbed hospitalization.

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  2. When I was in rehab i was actually tied into my wheelchair because I insisted on trying to stand up and walk by myself. Obviously for the nursing staff, if I fell over and injured myself, this would cause a great deal of paperwork, but if I did actually manage to get back to walking this would not be of benefit to anybody employed at the hospital. The number of times I was forced to use a wheelchair to get around the hospital and outside on outings was uncountable, and they were supposed to be helping me to recover there. I was sent home with a wheelchair which I ditched after about two weeks

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  3. My name is Earle W. Hanna Sr. I woke up one morning when I was sixty five years old and my entire left side was paralyzed. I called my daughter on the phone to say goodbye. She is an O.R. nurse and shouted call 911 and they will take you to the hospital. I called 911 and they came and took me to the hospital. They had a new cerium that I had to sign a paper for because they weren't sure how it would work. I was in the hospital for a week until my head cleared up. I have a very active job as an exterminator that requires a lot of walking and I was back to work a month later. I am eighty years old now and still working in my company with no problems. Since then I have written two books and had them published. I thank GOD for all that he has done for me.

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