Hi lovely people. This is my first post though I have been 'stalking' you all for months. It's good to read from others experiencing the trials and tribulations that come with psp. Mum has had psp for a good 4 years now, tho the initial diagnosis was Parkinson's which I know is often the case. I read about people going thru the different stages of psp but don't quite understand what they are. Can someone enlighten me please?
Mum is currently still eating solids, tho we do mash her food and she has thickener in her drinks. She cannot walk now, tho on a good day she can shuffle her feet when we transfer her from chair to commode. Xx
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Robmatlol
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Hi. I know some people talk about stages but how can you difine a stage when everyone with psp is different. Many will have the same symptoms plus one or two others. Some can walk but can't talk and swollow. Some can talk and have some difficulty with swollow but can't walk.
Then some people are incontinent from early on in the desease and others have quite good bladder control until late on.
Not much help I'm afraid and like many others will say why worry just take each day at it comes.
My advice would be put the thought of stages out of your mind and live love and laugh as much as you can.
Hi, welcome to the site. I'm glad you have stopped stalking us and joined us instead. I did quite a bit of stalking at first as well.
I agree with what Jane said, I often do. There are several websites which list stages but I've just read a couple and my husband obviously hasn't, as if I listed his symptoms, they didn't start in the order they were supposed to. He has had several of the symptoms of the final stage for a long time and we still get out and about. Final stage sounds to me as if death is imminent but we are not staying at home waiting for it as none of us know when our time will come. We are enjoying life as much as we can under the circumstances and as Jane said, live, love and laugh.......a lot.
Thank you Jane and NannaB. I think that advice is what we all should be doing whether we're healthy or not!!! Life is too short anyway. As for the 'stages', I didn't think there would be a straightforward answer but was curious I guess. Thank you both xxx
Hi welcome to the best site on the Internet. Glad you have joined us! Ask any question, as you see from your answers, everyone, will chip in their penny's worth!
As to this question? Like you, at the beginning I was very obsessed about stages, I suppose I was asking, how long will this go on for? how much time has my husband got left? One of our very dear friends, Jimbo, who's wife has sadly departed, managed to put me straight! None of us know the final day. We have to concentrate on today, that's what living is, being in the present. Yesterday has gone, tomorrow, as we all know will never come! We only have TODAY. How is your Mum today? Can she go out, yes? Then go out, enjoy living. Do ALL the things that your mother CAN do, that is what you should be concerned about. We just haven't got the time or strength to worry about what our loved ones have lost!
It really is "One day at a time!" I know some days, it's just not possible to be that focused, but the days you manage it, they will be your good days!!!
Sending you lots of love and am glad you have stopped stalking!!!
Welcome, Hi my husband has C.B.D. There are lots of friends on this site, with very good advice, I have not been posting long, the feedback is second to non, it has helped me, and given me lots of comfort and some laugh's keep posting
mum was diagnosed properly last year although has suffered for the last 5, was also suspected to be Parkinson's first.
I also have the question in my mind all the time, how long?, what next? etc like everyone says it's different for everyone, mum is now wheelchair bound, struggles to speak, soft food { she can only open her mouth about 5mm with her teeth in and doesn't like to take them out in front of anyone, so it's difficult even with a ta spoon}
thickener in drinks and spills more than she drinks, we've tried sports bottles, straws but she cant seem to suck well. she can only stand with us holding her & even moving her feet is difficult, she is now only 6 1/2 stone & has indicated that she if fed up of living & would rather just stay in bet but we try not to let her for more than a day.
she does have times when we think "this is it" but then she improves slightly, it's the not knowing that makes it so hard even thinking of a week away after not having a holiday for 3 years but am scared in case her time comes when we are away, would we know a week before? or are there any indicators to watch out for near the end?
sorry iv'e gone on a bit but just to say " I feel your anguish"
much love
Gaynor
p.s as your story is so similar..... if you turn out to be my sister i'm going to feel pretty stupid, lol
When my mother-in-law got to the point she couldn't suck through a straw anymore we started using a medicine dropper for her liquids, we recently had to start pureeing her foods a bit thinner so that they too could be fed through the dropper as she got to the point she either couldn't or wouldn't open her mouth wide enough for a spoon.
You should be able to find some 1-2 tsp (5-10 ml) droppers in your local pharmacy.
Bless you Gaynor and thank you for sharing. No I'm not your sister. My name is Michele. It does seem we are in a very similar situation as my mum too is wheelchair bound, struggles to speak, also on thickeners and cannot even shuffle her feet to transfer from chair to chair, hence we have been provided with a turning thingy which is fab. Some days she is reasonably bright and others/more often sleeps most of the day in her chair. It's horrid to watch her. At night she seems very confused, almost scared to go to sleep. Keep me posted as to your mums changes xxx
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