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What does stroke rehab look like in the future?


dreinke

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This is only my vision, please add your comments. I'm sure a medical person doing

this would come up with something different.

A scan(CT or MRI or something even newer) is done showing the damaged areas of the

brain, the dead area and the penumbra. This is then mapped to a 3d representation

with the medical staff enumerating the damaged area functions. The penumbra

representation is probabbly the most important since this is the area that normally

spomtaneously recovers in 6-12 months. Penumbra recovery is what most therapies like

CIMT depend on. This is where the 'Use it or lose it' statement comes from. Dead area

recovery is much more difficult and requires neuroplastically moving control to

another location in the brain. For extreme recovery there is this girl with an early

stroke with only half a brain.

http://www.pbs.org/saf/1101/segments/1101-6.htm

 

I know that currently the penumbra is not scanable but until it is any therapy

protocol is just a shot in the dark.

So the therapies for penumbra recovery should be completely different than the

therapies for dead brain recovery.

Preventing another stroke is not an area I have any expertise in, so I won't comment.

 

Penumbra recovery would have a list of therapies mapped to recovery of impaired

functions, including the efficacy of those therapies.

Dead brain recovery would also list therapies mapped to recovery of dead areas.

Most of the research I have seen makes the assumption that their protocol is what

causes recovery and there is never any discussion of spontaneous recovery being the

cause.

Based on this we should be able to ask our therapists for proven therapy protocols

that map to the damage specifically seen.

With this information we will be able to tell what is relatively easy to recover and

what may never recover, so rather than our doctors not telling us anything about our

recovery they may be able to say with a lot of hard work you can recover these

functions.

With two lists we could see what researchers have proven and add our personal

experiences to them.

 

The 3d scanning ability is available now. Penumbra scanning is something to ask research colleagues on. The lists of therapies for penumbra recovery vs. dead brain recovery is something that survivors could do. Somehow we have to get this in front of all the stroke asssociations across the world, and ones like Society for neuroscience. Maybe an article in World Stroke Organization magazine, International Journal of Stroke.

 

 

Ok, It is submitted as a viewpoint article to International Journal of Stroke. I doubt it will get printed but at least the editors can discuss. I would highly recommend others to submit viewpoint/opinion articles to them. I know it mainly is expecting submissions from doctors/researchers but sometimes we have to shout to be heard.

 

Dean

 

5 Comments


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Dean:

 

quite intresting point you are raising. I am just wondering how do you know all this things. I have never knew any of this.

 

Asha

 

 

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Quite simply from reading a multitude of books and research articles. It became quite obvious that when an OT describes a new AFO I need and the doctor involved can only see snipping tendons as a solution for curled toes, it was at that point I started reading stroke forums and found out that curled toes were quite common and survivors were all asking what to do about them. It finally dawned on me that stroke rehabilitation had no common understanding and until there are written guidelines each survivor manages to get good medical practice based upon the luck of the draw. My OT was great but even she said that I knew more about rehab than she did. You can go to any other medical condition and there are standard protocols for dealing with them. We just need to bring stroke rehabilitation into the current century or survivors will be asking these same questions for the next 90 years. I will know when we have succeeded when stroke forums like this are mainly used as social connections rather than finding solutions to standard stroke impairments. This is because I do not believe the second part of this statement: 'All strokes are different, all stroke recoveries are different.' This book - Hippocrates' shadow : secrets from the house of medicine / David H. Newman. Good for realizing that doctors do not know everything. Even the stroke associations are worthless, they are not meant for survivors.

Dean:

 

quite intresting point you are raising. I am just wondering how do you know all this things. I have never knew any of this.

 

Asha

 

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Dean, while I certainly do not have your knowledge or have done half the research you have, I pose perhaps the problems lie with the myelinated vs non-myelinated sheaths and the rewiring of the neurons at that level. I personally feel this must be individual. Also and perhaps I read this wrong, but the spontaneous recovery of the Penumbra depends on return of blood flow to that area. In Bruce's case that was never re-established. Sometimes I get the feeling that our Neuro basically washed his hands of the whole deal once he gave us the diagnosis. I can only depend now on those therapists and specialized Clinicians to guide us along our recovery route based on what has worked for them in the number of cases they have dealt with, which is why Bruce is a part of the Stroke recovery unit he is with now. Just a thought, Debbie

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Dean, in a lot of cases it is the caregiver rather than the survivor who does the research, enforces the change of lifestyle, encourages the exercising etc, Exercising is paramount as it is that repititious routine that enables the brain to make new pathways for old processes. A lot of caregivers are wives and as most Aussie husbands suffer from wife deafness it is that obstructive behaviour that can negate recovery. Or that is my expereince anyway.

 

I agree we have an animal body so obviously renewing structures is what is required but we have emotional, social and psychological needs too so support groups, the health professionals and mental health specialists are needed to help in the process. If we go back to where we were we will end up back at the stroke event again further down the track.

 

I know a lot of what the future is about will be due to brain cell replacement therapy too. A needle full of nice compatible brain cells that will "fill in" the dead brain area is part of my vision and maybe in the future we will keep brain cell banks so we will actually be using our own cells after strokes, heart attacks etc.

 

Sue.

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Dean,

this is quite interesting. i do agree that many symptoms of stroke will require therapy that is consistent with stroke. I am sure that the type and severity and site of the stroke all relate to the therapy.

 

Unfortunately, the rehab of stroke survivors is not at the top of anybody's research list. the money is not in stroke recovery. I hate to think that it is the luck of the draw. But, yes , for now i would have to say that it is the luck of the draw in therapists.

 

My experience has proven that. I would rather a more straight forward approach were followed. but, I have seen different therapists do their work in entirely different ways. Some get results others just waste time.

 

I have found that water therapy has been the most important and consistent for us. But , it is not covered on our insurance. Research hasn't been done.

 

thanks for the research.

Ruth

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