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.