Rebound / improvements : Checking my old... - PSP Association

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Rebound / improvements

15 Replies

Checking my old post and it was about 6 month that Neil had the same rebound,getting himself out of his recliner,walking around to find me. The last one only lasted few days.The decline after it was kinda scary.Anyone else gone through these.

Dee in BC

15 Replies
Caro2132 profile image
Caro2132

Funny you should mention that. A few days ago, Mike got out of his recliner and managed to make it to the bathroom, this means two steps up, down the hall and through the bedroom. I was in the garden and the windows were open, but he didn’t call me or ring his bell. So, having done this once successfully, he thought he could do it again! And fell getting out of the recliner, banged his forehead and it resulted in our first visit to the emergency for five stitches😊 he’s hopefully chastened? But I think this is part of the impulsiveness part of PSP. Just means we have to watch more carefully. Haven’t noticed a decline but he definitely has ‘wobbly’ days more.

Larry has better days and bad days but no rebounds.

ninalulu profile image
ninalulu in reply to

i HAVE THE SAME PROBLEM SOME daysare better others don't

in reply to ninalulu

I can tell how he feels by the way he walks. If his feet are straight when he is walking it’s a good day. When he has them turned outwards it’s a bad day.

doglington profile image
doglington

Yes. I found that with Chris. It gave him over confidence about what he could manage and the inevitable falls. I found it incredibly stressful.

xxx

raincitygirl profile image
raincitygirl

The only rebound we experienced was whenever there was a "downturn" it seemed like a huge step down (in speech, in mobility etc) and I was thinking "ok, here we go, now we're in to complete incontinence" or "now it's the wheelchair" ....but then after a day or so he would rebound a little, but never to the previous level of function. It's a "stair stepping" downward trend - not a smooth curve.

Let us know how this one turns out.....

Hugs XXX

Anne G.

ninalulu profile image
ninalulu in reply to raincitygirl

i never go outside only if my husband is around , I afraid of falling like him , he don't want to see me on the floor ,what i have for husband is an ANGEL, he is to good and he deal with my problem the best he can , the only thing we can do is fixed the bathroom to make bigger , he install the bar in one and the next one is a chair that goes to the wall and more bars . he is unique he help me a lot

raincitygirl profile image
raincitygirl in reply to ninalulu

Bless you for recognizing his wonderful care for you. I'm sure you tell him - it made a difference to me when hubby woyld tell me he appreciated it :-) Caregivers will love no matter what is thrown at them, but it is a gift to hear "thank you".

You sound like a very special lady, Ninalulu: I hope your transit through this disease brings lots of good moments amongst the difficult. XXX

Anne G.

ninalulu profile image
ninalulu in reply to raincitygirl

hi; it has been good days is 1 year i don't fell , my husband is always taking care of that . know finally we are talking about (a living will ) , I Am trying to give some things , i asked my kids to come here and said what they want , that is going to be after my husband passed , i don't want that they said we din't asks, we are telling my last wishes before this get worse . I want to be cremated and my ashes to be put together with my husband when is time and scattered in the beach , i know i sound crazy , but i think is better

raincitygirl profile image
raincitygirl in reply to ninalulu

Not crazy at all, Nina! You are being practical and wise. These are the things to do now while you can, and then you can put it aside and just enjoy every day as much as possible. You are doing very well. Keep up the good work! :-)

Hugs XXX Anne G.

ninalulu profile image
ninalulu in reply to raincitygirl

that is great enjoy every minute . that is what i am trying to do

ninalulu profile image
ninalulu in reply to raincitygirl

hi: that is what I am trying to do , I have problems with my eyes they burn .tomorrow is the eye DR. I need very dark glasses . i hope he can help me. nina

Aprilfool20 profile image
Aprilfool20 in reply to ninalulu

Not daft at all. We have just started on our wills and POA and it is making me feel a lot less stressed. My advance directive is next as I want there to be no ambiguities over my care(CBD). Best to get it all done while still mentally capable, though registration takes a good few weeks here in the UK.

Best to you

Jayne

Hi dw123456!

In our case we passed a similar time from the first recognizable symptoms (2012-03) until a few months after being diagnosed with PSP (2015-09).

Maybe it could be a reaction to fight against the limitations of the disease by putting challenges to itself and trying to overcome them

raincitygirl profile image
raincitygirl in reply to LuisRodicioRodicio

Personally, I think that's very perceptive, Luis.

Xx

Anne G.

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