What have other people's experiences been ... - PSP Association
What have other people's experiences been near the end stage of PSP - how infirm are you, what can you still do, do you spend all day in bed
Hi LyndaEllis
There is no substitute for experience, so others may respond with some practical answers to your query. With respect to my own understanding, PSP affects the brain in different areas and degrees with each sufferer. Therefore, a person can have their balance and posture mechanisms severely impaired and end up in bed most of the time (having to use a hoist to move them to the toilet etc). These same people may still have a reasonable use of voice and swallowing. Others may lose their swallowing ability and voice (and have vertical gaze palsy) and still be able to walk with a frame quite comfortably. Thus, the "activities" one can do depends of the severity of the particular symptom. Also, just because one becomes bed bound, it doesn't necessarily represent "end stage" of the disease, since some sufferers may be bed bound for a couple of years. Unlike Parkinson's, PSP sufferers have problems with their neck and back muscles rather than arms and legs (in general), and so one can still exercise in bed (a physiotherapist would direct this activity). While virtually all PSP sufferers have vertical gaze palsy, they can still see reasonably well, and watch TV etc.
I think that those who sufferer from PSP have to determine what is still "working" and keep using it as part of their daily routine. If the voice is still working, have as many friends and relatives visit to have conversations (even if it fatigues you). If the walking has not gone completely, have short aided trips around the house, or in a wheelchair to push oneself around inside and perhaps outside (in the garden etc). If you can still sit in a recliner, or even in bed, have someone read to you, or, as my wife does, try and play a board game. We have to be innovative, and keep use of the bits that still work.
I am aware that eventually when most of the systems affected by PSP become severe in some sufferers (towards the end) then very little activity can take place, but remember that PSP sufferers will always be aware of their surroundings (unless they have other neurological co-morbidities). Carers and family and friends are invariably welcomed and needed in the end stage (despite personality changes that may have occurred).
Take care.
Thanks!
Dear Strelley
Thank you for all your contributions to this blog. I have learnt more from you than any of the professionals, which has been absolutely zero.
Dorothy-Thompson
ps on an entirely different subject, does any one else think that this new site is not as good as the previous one?!
Hi Dorothy,
I think it is better than last week but I still have trouble finding things. I hope I'll get used to it soon but at the moment I'm finding it very frustrating.
Nanna B
yes i do think it is not as good as the old one but understand why it had to be updated
i agree with you abut strelly - he is brilliant and so inciteful
Thanks,Strelley!
Thanks,Strelley !
How "end stage" do you mean? My husband was admitted to the local hospice program this afternoon. That means at least two physicians have said they believe he fits the "six mos. or less prognosis." To me, that's pretty end stage. My husband spends all day in his recliner - at least half that time he has his eyes shut and either sleeps or pretends to. His only activities are to listen to other people's conversations or to watch TV though I have done all the paperwork for him to be approved for Virginia's talking books program. I hope he'll get some enjoyment as he used to read all the time. 3 mos. ago he quit asking for the morning paper and he would have a bookmark in the same place in a book - always up near the beginning. He can barely get to the bathroom with a walker so we do not get out, even for a ride, any more. He doesn't talk unless he needs or wants something and then he is hard to understand. BUT, as so many have confirmed, his mind is fully there. It must be awful to have a great mind so confined in such an infirmed body. Did I say all of his nutrition is through a feeding tube? But that's been true since the beginning.
Hi Caroline, sorry about your husband, his stage seems to be similar to my sister who is 79 and has parkinsons plus possible psp she is in a nursing home can't walk and she now for the past two weeks not speaking and when she does it does not always make sense.She was an avid reader and crossword solver and can now not do any of these things. Visiting her yesterday was tough she just stared at me for a long time with no expression on her face.Could she be in a final stage? I feel quite alone although the nursing home is great I don't think they fully understand her illness.
This disease is STRANGE. Yesterday my husband, who was taken into the hospice home care program maybe 6 weeks ago, seemed like his old self. He was talking, getting up every time I turned my back, working the TV remote - things he hasn't done in months by himself. I know that 24 hours from now he may be right back where he was when hospice signed him on. I don't understand - just try to take him wherever he is on any given day. He will go into a private home for care on Thursday. I am so fortunate to find this couple AND that we can afford them! Best of luck to you.
Hi, Caroline sorry about your husband, PSP is an awful illness
My uncle got diagnosed with PSP 3 years ago, at first he was falling all the time and getting abit forget full, then as time passed he got to the stage where he slurred his words and couldn't feed him self. After various infections he's since got worse again where he couldn't walk, talk at all and we found it reall hard to communicate with him and was incontinent. Three weeks ago he had a nasty fall and a bang to the head, now he cannot swallow foods or fluids. We called the doctor end of last week as we noticed a big lump in his tummy this turned put to be cause his bladder was full. He went to hospital and sadly has took a turn for the worse and the doctor told my aunt there is nothing they can do for him and to let nature take its course. Really confusing as we thought was just going in to have a catheter fitted so its come as abit of a shock. Hope this has information what you can relate to. X
Dear Shan89, I'm generally trying to learn all I can through the forum and just saw your message. I am sorry about your uncle. Sometimes the disease seems to go incredibly fast. It's horrific. May I ask what happened to your uncle that made the doctors give up on him, and what happened? easterncedar
