Hi, I have now got S going to see an osteopath. He is very good and had experience of Stroke and Parkingson victims. But is fascinated with PSP and how it is affecting S. Says all his muscles and joints are in good working order. No sign of any stiffness. Yet, S is really struggling to walk, get in and out of a chair, you know the picture! Zac is saying that S is losing body awareness. When I make him use his left hand, which is trying to close up, he can, yet can't use it otherwise. Zac is getting all S's limbs in ways that I haven't seen in years! It's brilliant and heartbreaking, at the same time.
It is having an effect, but only that it makes moving him easier. S is not feeling any benefit. But it's got to be good for him, to move like this.
We all know that our loved ones can do exercises, but still can't get out of a chair. I wonder if this is where the researchers should be looking at. They are spending time and effort on drugs, as if this IS the only answer. The brain is not talking to the body, drugs AREN'T going to change that, but re-training the brain in some way, might be!!! How? Way above my pay grade, but surely some bright spark could find a way. We all know the brain can be re-trained, when there has been damage. So why not with PSP??????????
When S broke his right wrist, just before he was diagnosed. His left hand, which even then, was trying to claw, suddenly came back on line and is only in the last few months, started to go again. So things can be reversed. I realise, this would be extremely hard work on our part, but personally, I would rather be doing re-hab with S, than mopping up the latest accident! If only someone, could give me some exercises that reach the brain!!!
Lots of love
Heady
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Heady
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start exercising and get some message therapy too.
Like Heady said maybe you should bind/hinder the strong limb from working which will 'force' the weak limb to do the job!!!
But you are an anomaly, you are able to still type which really askes the brain to tell the muscles what to do.....keep on keeping on but maybe you could type with your other hand to see how that works......
Muscular dementia! I was walking the dog today thinking about your last post and about coughing etc......It is not intellectual dementia; they can still remember....it is not muscular atrophy Bruce is as strong as an ox; It's not that they don't want to; I asked B, " do you know how to cough?" and as if I had asked him "do you know how to fly a plane or dig for gold" he just gave me a "no I don't..."as if he's never done it before and it wasn't really a necessity anyway. (that may be intellectual dementia) but the thing is is that we need to keep muscular stimulation so as to not allow the brain to forget!
Massage therapy....is making it easier to move S, yay A milestone.....! As soon as PSP is diagnosed there should prescribed by the nuerologist, intense (not painful) muscular stimulation! Insurance should see this as a preventative to other sure and more expensive alternatives.....machines to do the work or aides to help the carers......
HEADY , WE DID IT! WE SOLVED THE PROBLEM! IMMEDIATE AND CONTINUED MUSCULAR STIMULATION WILL BE SEEN AS ESSENTIAL FOR KEEPING PSP AT BAY!
I don't know if it will heal it but if the patient can get on the pot by himself one more year/day...(Year, set goals high) then lets do it! and let's get funded for it!
YES! YES! YES! If only !!!! Others may mock, neurologists will laugh, say we too have caught the dementia bug. But I honestly can't believe, that regular intensive exercise from DAY ONE would not help our loved ones! I'm sure S would be in a far worse state, if I hadn't had him, doing some form of exercise most days, with two sessions of fairly intense movement twice a week, now just gone up to three! With more, I'm sure he would still have some sort of independence. It's finding the right sort, that doesn't wipe him out. That's the problem, for us novices, not knowing what would have some serious benefit! I know all neurologists say keep active, but how can that keep this Muscular Dementia at bay? Love the new diagnoses, by the way. It really sums it up!
Heady, you are on the right track, I think, but it is so hard to get a regular program and get it right. And keep at it! The LSVT Big program helped so much. I wish we could have kept going. Both the neurologist and the GP said from the start that exercise is key, but it has been up to me to provide it, and I haven't been as diligent as I should. my tai chi teacher recently gave me a sitting routine for me to do with my guy, and that has been fun. He calls it "brain gym", with a view to reprogramming around the damage, just as you suggest.
Love to hear move about this "brain gym!" That sounds EXACTLY. what we all need. Could do with some myself! Had a row with a door this week, because I couldn't read the push and pull signs! Nearly ended in tears, but managed to get out just in time!!!!
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differences between Lewy Body Dementia and PSP
