PSP

six weeks ago Psp seemed a minor annoyance for my hubby and me. He had been diagnosed about three years ago age 85, bit unsteady, bit of stuttering, but got on with out lives. One fall, broken right humerous five weeks ago, now in hospital and been told his deterioration is rapid and he must have nursing care, how can this happen in such a short time, i am still in state of unbelief and expect to see his sitting up when i visit and have a conversation. Such a cruel illness.

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  • hi kay,

    sorry your haveing to go through this but your not

    on your own, This is such a cruel illness it can affect

    people in different ways if you have any questions just

    ask we are all here to help each other,

  • Have you joined the PSP Association? If not you should do as it can provide you with lots of help & advice via the Care & Support team and the PSP Nurse Specialists.

  • Thank you for your messages, yes, have joined and i do feel better because of the association. Just returned from hospital and he is fine again, perhaps I am imagining all the bad times. Life feels like a roller coaster, I am learning to adapt and make the most of the good times. x

  • Hi Kay,

    Sorry to hear about your husband. Not long after Mum was diagnosed with PSP she had a minor stroke which wasn't very serious from a stroke point of view but had a catastrophic effect on her PSP symptoms! I spoke to the PSP specialist nurse (contact details available from the PSP association website) and she said any trauma/stress or infection will increase the PSP symptoms.

    Hope your husband recovers quickly from this set back and is home again soon xx

  • we have a sad common cause, but a little strength is gained by other comments from other carers/sufferers. I was able to take notes from PSP assoc into the hospital that could be read and shared by the different nursing shifts looking after my husband. a relief not to have to cover the same ground with each new person coming into contact with him.

  • hi kay

    my problem with ;PSP is keeping my eyes open!

    but it is unique for each person

    i started having balance problemes 4 /5 years ago(diagnossi end 2010) and am sitil able to get out on my own at present]

    so i am lucky and am making something of each day

    GP's this a.m and hair- do later today

    jill x

  • I am full of admiration for you, husband diagnosed 2009, no major problems until mid may when it seems all symptoms came at the same time. With all that is going on he looks incredibly healthy and completely out of place in hospital bed.

  • hi kay1

    my balance is def better - which i can only put down to the amantadine (200mg)

    i was falling 3 times daily and now it is 3 times a week - worse if i am stressed or worried about falling!

    i think the 200 mg dose is ideal as no hallucinattons at present and i do not want any if possible!

    I too look well and it is difficult for people to believe i have a terminal illness

    jill

  • Jill,

    Do you really think that the amantadine is working? My husband David was on it before he was enrolled into the davenutide trial but he had to be taken off 6 weeks prior to the trial. I think he must be on the placebo in the trial as he has had a steady decline since he was enrolled into the trial, I am wondering if we should get him out of the trial and restart the amantadine.

    /

  • hi judy

    i think you should stay on the trial for the davunetide as they will monitor him so well

    jill x

  • He is being monitored, but they are not his physicians so they can not prescribe meds or help us when things go wrong as they are 5 hours away. I can make an appointment with the doctors but that would require additional trips as they can not schedule his appt with his trial appt. We need to rely on his local neurologist who is not as versed in the disease. The 5 hour trips are getting more and more difficult and I am not sure how much longer he will be able to make the trips and he can not be in the trial without being seen. I often feel totally alone trying to make the best decisions for him. He is failing so quickly so I am pretty sure he is on the placebo and it is difficult to make him into a human sacrifice to help the others in the trial. We have been together for 31 years. He is only 58 and I would like to try to make the rest of his life as happy as possible. The trial almost seems like a burden to him now when it seemed so promising back in 2010 when he first went on it. It is a difficult decision. Any advice would be welcomed.

  • Dear Judy, If the trip is so burdensome and you see no improvement in your husband you have to consider the stress and cost to you of a five hour trip. Both of you are in this...and without you ,your husband would be in more trouble. Sometimes uyou have to put yourself first.Good luck. Edmee

  • I really feel for you Judy, I am afraid I would take the easy option and spend time together without the stress of decision making ,the travelling etc must take its toll and you feel the results are not what you are hoping for. I have found out that the "progressive" in PSP means exactly that, my husband has gone into nursing care today, something i would never have believed ten weeks ago. What ever you decide you are doing it for the right reasons. x

  • Hi Kay My Husband is 83 and was diagnosed in January , before that it was thought to be a Parkinsonism!! with mild dementia , he has been very "unwell" for about 18 months and had a lot of falls , his legs are very weak as are his arms,hands and shoulders where he has a lot of pain , he often gets confused as to where he is . in Spain or England , we had hoped to live in Spain and had bought a Villa then this all struck and we now have a retirement flat in England with emergency pull cords in each room - what a change in such a short time - our world has gone upside down.

    His concentration comes and goes and he sleeps a lot and not very interested in going out anywhere ,he is incontinent and has problems with constipation , some of it due to his medication , he quite often does not want to eat - he then has an Ensure drink, he does go to the local Hospice one day a week and that gives me a few hours to myself which I am so thankfull for.

    At least at age 83 he has enjoyed a life in which he was strong, nothing was impossible for him (the world's supreme optimist) and he fulfilled his lifelong dream of navigating the Bahamas in his own 45ft boat , we have our wonderfull memories so we are luckier than a lot of others .

    This disease is at its cruelest when it strikes at younger people, my heart goes out to them ,Like a lot of others I had not even heard of this disease before which has made it harder to understand but this support group has helped a lot , the worst part of it all is the "not knowing what comes next" ?? I sometimes lie next to him in bed and think it has all been a bad dream - then the day begins and reality kicks in again with the heartbreak of seeing the man I love just not that man any more - it is so sad when he tries to put his arm around me but he is too weak and the pain stops him, he is so frustrated when he sees me doing things that as the man of the house he wants to do but cannot do them , I just show him as much love as I can but it never seems enough.

    To all of you - God Bless and thank you for all your helpfull comments.

  • I feel the same as you, for younger people it is the saddest thing. We have had a wonderful life and i am so happy to say Frank seems to have improved since in nursing care. Once thought he would never get out of bed, now happy in wheel chair, from being fed, he now feeds himself. The home is two miles from me and i can visit when ever I want. Speech therapist has told us he can now eat normal food and does not need thickener in drinks. I am trying to enjoy the "relapse" whilst it is lasting and not thinking about what is around the corner. Sincerely hope there will be more good days for you both in the future.

    x

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