Does anyone recover?

[LyndaEllis]

Has anyone ever heard of anyone who has recovered from PSP?

[NannaB]

No, unfortunately but I still pray for a miracle x

[OzMaid]

I wish I could provide the answer you want to hear, but sadly that's not possible...

[MoragR]

Recovery isn't possible, sadly, it's a progressive condition. But my father's alertness improved and he had far fewer falls for about a year after he went to live in a good care home when my mum died. It was probably due to a combination of professional nursing, a less cluttered environment and more mental stimulation than my poor exhausted 87 year old mum could manage at home even with help from us and carers once a day - but she wouldn't allow any more help. After the first year he gradually become worse again and is a long way down the road now, four years after moving there.

[LynnO]

Hi LyndaEllis,

My husband sometimes seems like he's getting better, or at least not any worse. This will last for a month or two, then he'll go downhill. His cognitive issues are the worst for him. He can put up with the balance issues and the eyes not working all the time, but the cognitive part really upsets him. so when he can find words, and understand people, he feels great, and hopeful. When he feels this way I do too. Then the bottom will drop out again, and we start over. I find that the more we keep his brain busy, the better he does. Winter will be very difficult for him. He likes doing thing outside and keeping busy when he can, but with winter, outside is out of the question. I don't know if this is what you are experiencing, but this is a very cruel roller coaster ride.

Take care,

LynnO

[easterncedar]

My guy says he is going to beat this and won't hear anything otherwise, so our strategy is to keep him as functional as we can while we are waiting for that cure. Recent advances in understanding the nature of the tau protein tangles in alzheimer's should help us too, eventually, and there is a lot of research going on on that front. There is reason to hope, and so we do! Hang in there. All the best, Easterncedar

[zjillian]

The cognitive stuff goes down continually with my husband, but physically for some strange reason, he gets better.

He was diagnosed 7 years ago and the first years, physically, were bad with terrible falls and an inability to walk, and then he improved (?). He put on weight doesn't look so horrible and now he walks, no falls, looks physically much better but is 100% dependent. He has almost no short term memory, is confused and sometimes agitated, needs 24hr supervision. Again symptoms wax and wane for no apparent reason. We have found no medicine that is useful and he even seems better the less medication he takes.

His father died of PSP at 73, my husband is 72. His doctor thinks he may live another 10-12 years..good and bad. He lives with me, at our home in Costa RIca. I have a full time person who shares our home and helps me with Bob. Bob is not suffering and doesn't know he is ill. He "works" every day outside "pruning" (i.e. ripping up plants, weeds, flowers etc). It is not a clear downward progression; there are good days, months, weeks and then sudden drops.

I wish I could give you a better answer. But I also believe that each person is very different and it is best not to believe anything anyone else says. Keep moving, keep busy, get help as much as possible and prepare for the long haul.

Jill

Costa Rica

[easterncedar in reply to zjillian]

Wow. This is the first I have heard of anyone improving physically over such a long span. No falls? Can walk now? I don't know what to make of that, except that, everyone is, as you say, very different!

[zjillian in reply to easterncedar]

I actually thought that maybe our old housekeeper was poisoning him. He got so much better after she quit. Seemed very strange. She was a bit strange. ????? That was last December. He went from very bad to much better physically almost immediately.

Jill

[jillannf6]

i have just lost my comment again1l

loljil

[jillannf6 in reply to jillannf6]

i do not think there will eb a cure in our lifetime so we just have to make the best of it ...

i amGOOD as the PSP is the person i now am despite getting very upset frustrated and angry when i cannot do things for myself any more and fall ove r and CRY rather than laugh

but it could be a lot worse ..

lol JIll

[Billyboy12]

Jillannf6, Keep going jillann. From fellow sufferer of psp. Bill

[jillannf6]

THANKS FOR YR MESSAGE BILLL

I WILL CERTAINLY KEEP GOING]

WHEREIN TH EUK ARE YOU???

LOLJILL

[jillannf6]

THANKSFORYR MESSAGE BILLL IE WILLCERTAINLYKEEPGOIMG]WHEREIN TH EUK ARE YOU???

LOL JILL