My husband was told five years ago that he had PSP and he is now in a hospital grade home. He no longer talks except for a hard to hear whisper. He can still take steps from his chair to the bed but it is laborious and he can't do so without help. He seems to be going downhill much faster since Christmas.
He seems to be losing ground more rapidly. We changed his residential home in October and I'm not sure if that is part of the cause of the acceleration or if it is the nature of PSP.
I discovered this site today and it's wonderful. I have floundered for a long time trying to find information on living with the realities of PSP. And i'm so glad you're here.
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KatherineParr
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KatherinePart HI KATHERINE WELL I HAVE PSP MY VOICE IS SOFT AND MY LEGS DO NOT WHAT I WANT THEM TO DO AT TIMES \\ BUT I STICK WITH IT PSP IS A STRANGE THING BECAUSE NO PEOPLE HAVE THE SAME SYMPTOMS FROM THE START TO AN END WHAT I MEAN IS THAT IF TWO PEOPLE GOT PSP THE \SAME TIME ONE MIGHT HAVE STARTED FALLING BACKWARDS AND THE OTHER PERSON STARTED FALLING TO THE FRONT YET THEY BOTH HAD PSP BUT DIFFERENT SYMPTOMS \\\ ITS POSSIBLE THAT HE FELT MORE COMFORTABLE IN HES \OLD HOME AND MORE CONFIDENT BECAUSE HE KNEW WHERE EVERYTHING WAS THEN GOING T0 A NEW PLACE MIGHT HAVE FRIGHTENED HIM A BIT MAYBE THATS WHY HE SEEMED TO HAVE WENT DOWN HILL A BIT TO YOU AND IT WAS ONLY IN OCTOBER BUT YOU DONE WHAT YOU THOUGHT WAS RIGHT FOR HIM\\ WELL MATE I THINK I HAVE SAID ENOUGH FOR NOW PERHAPS SOMEONE ELSE CAN EXPLAIN IT BETTER IM SURE THEY CAN YOU HAVE A GOOD SITE HERE LOTS OF GOOD PEOPLE JUST TRYING TO HELP SO GOOD LUCK TAKE CARE BEST WISHES FOR YOUR HUSBAND\\\ PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
Thanks for replying. I think my husband thinks that by moving homes he might feel better, but the bad news is that he won't. The new home took a while for carers and nurses to get used to him and his needs. They have a handle on it now and some staff are wonderful.
Kia kaha Peter, stay strong, keep communicating, take care.
katherinne parr \\ thank you katherine parr for those two words KIA KAHA STAY STRONG and i will
im sorry your husband has taken a while to adjust to hes new home and carers and nurses to hes needs \\ but they will get there and once he has settled down he might change again once he knows where everything goes and it all becomes famillier to him anyway mate best wishes to your husband and yourself '' thanks again '' for words i believe the troops used them during the war or borrowed them i should say from your native language peter jones queensland australia psp sufferer
Frank is in his 5th year of diagnosis, in a care home now for 18 months, and did not see much change during the first 12 months, however the PSP is developing rapidly and such a difference to when he first entered the care home. He is unable to do anything for himself now and seems more prone to infections, especially UTI. He is well cared for, and with PSP, that is the best that can be wished for x
Thanks Kay, seems like you have the same progress as my husband and myself. It all seems to get worse a bit more quickly now, but still there. Good care helps a lot.
Hello Katherine, I thought I was reading about my husband when I read your blog, my husband was diagnosed 5 years ago and went into a care home in October because I had to have a knee replacement, he came home for Christmas with the family and had a lovely couple of days, but when he went back to the home, where he is getting very good care, he suddenly started going down hill, he went through a very aggressive stage for about two weeks, then he was loosing weight rapidly because he started having trouble swallowing, he does not want a feeding tube fitted, then two week ago he went off his feet, has trouble opening his eyes and can,t speak apart for making growling noises, he is semi conscious and on a drip for the last couple of days, the nurses can,t believe how quickly he has gone down hill, I am just waiting for their phone call to say his suffering is over, the family are all coming over to see him in Anglesey to day to say their good by,s, I just don,t want him to suffer any longer. I hope your husband does not suffer too long, it is such a cruel desese. Stubby x
Hi Stuuby, thanks for the reply. It's such a hard illness to cope with isn't it, for everyone. I found my husband plateaued the went on evenly, then plateaued again, but it seems to be happening more often now. I have looked at photos of the last three Christmases and the difference is massive in each once. It makes me hope that he will pass on this year as I hate to think what's in store if he doesn't. Its the being aware but trapped and unable to communicate that would drive me crazy. Sometimes I think dementia would be easier. It really is a hard path we're all on, but we all seem to keep our humour, patients and carers alike.
Even though my man can't speak, big grins and laughter light up the dark areas when we find something to laugh about.
Stay strong and take care Stubby, x
My 77 yr old mum has defnitely gone downhill faster in end stage. I think it's becasue that is when infections really start to dominate their day to day life. She was fully middle stage by March 2012 , started Madopar which helped stabilise her (although she was on full dose of 10 a day within 6 weeks of starting it. ) until August when a UTI set her back so much we thought we would lose her. Then she gradually got back to nearly where she had been by October. She was middle until 2 days after Christmas when she shot into end stage overnight with yet another UTI.She has never been able to weight bear since and her skin is breaking down. It's all hourly changes now and she hasn't spoken for 2 weeks since she recovered from an URTI and hadn't done for 2 weeks before that. Today it was like trying to feed someone dinner in a coma yet at breakfast she was better than usual! She wasn't even able to slightly turn and look at me today and her mouth was not in her control. I feel that the Parkinsonism takes her over completely sometimes. She was able to mouth OK when I asked how she was feeling today and that was it. When she had eaten enough she just closed her mouth really tight. I am going to try a counsellor as I am finding it tougher now, I try not to worry about what she is thinking as I will never know so it's a pointless thing to worry about. I feel like my life is wrapped around this and as you can see here, it all pours out to people at the drop of a hat.. As you say this site is an absolute godsend.
Yes Dianne, get a counselor! I just did the same for myself, I'm so obsessed with my husband's PSP, and I'm still having to work full time, and keep the household going. We just got a diagnosis a few months ago, and he already cannot speak, although he tries.He bounces off the walls and counters as he tries to navigate around the house with his cane. He falls heavily to the right when he sits, and has often fallen right out of the living room chair! He is skin and bones because he cannot eat much with the swallowing and digestion troubles. Watching this happen is more overwhelming than one should be expected to deal with, even with family and friends behind me, I think a professional is beneficial. I too have just found this website recently and am sooo grateful for it.
My wife isn't in the final stages yet and I'm not sure anyone can definately say when the final stages begin. Some have posted that their loved one lived years without being able to talk, walk, etc. Some who were put on a PEG feeding tube live quite long as a prisoner in their own body. It's kind of like the question about the stages of PSP. I've seen published stages but when you read on this site and other sites PSP caregivers seem to agree that there is no way to distinguish the stage a particular patient is in. I responded to another posting on this site my opinion/thoughts. It doesn't matter the stage your loved one with PSP is in. Make the most of every day. As some one once said about worrying about the future "Each day has enough trouble of it's own". My wife and I NEVER speak about what is ahead. We are living one day at a time, solving one issue at a time, loving eachother as much as we can, and NOT looking ahead. I'm not saying you shouldn't (as a caregiver) research how to handle symptoms, what new treatments MIGHT be coming, etc. but dwelling on the stage or what's ahead isn't productive in my mind. Just my thoughts.
Hi Jimbo. My thoughts exactly. My husband is 65 and was diagnosed in 2010. I retired early to look after him. All our plans for our retirement will come to nothing but we still manage to laugh a lot and try to go out every day. It's not easy pushing 16 stone in a wheelchair, even with a power pack on the chair but we are learning the easiest routes around the parks and town. This Friday he is starting at the local hospice day centre. When it was first suggested we freaked out thinking hospices were the end but he will get a 3 course meal to suit him, alternative therapy, including a massage if he wants it, and the opportunity to join in any activities he can manage. I will get 5 hours to do as I wish without worrying. Friends and family have been great sitting with him if I need to go out, but he doesn't want them helping him in the toilet so I could only go out for a hour at a time. He also finds it difficult as, like others, his voice has deteriorated to a growling whisper.
We are having a stair lift fitted this week so another difficulty will be overcome. Our grandsons can't wait to have a go on that.
We know what the future will be (although we do pray for a miracle) but I also know that if I were to be miserable or upset, it won't do him any good at all and won't change the eventual outcome one little bit. We have a friend who has a 38 year old daughter brain damaged at birth. She ubderstands everything but the only things she has control over are her eyes. She has been fed through a peg since birth and needed 24 hour care. As my husband said when he was diagnosed, at least he has had 65 good years and may get a few more in before the end.
NannaB, seems we are on a similar path. My wife Sharyn was also diagnosed in 2010. She is 66 years old and I, and old codger, am 77. Thank God my health is excellent. I'm the only caregiver at the moment. Sharyn has mobility issues but uses a walker around the house (wheelchair outside the home). Her speech is quite well but sometimes like a person with too many beers. Swallowing is quite good at the moment. Only a bit of coughing from time to time. Beverages (except for coffee) are thickened, food cut into small bites. Her eyesight is fine but her eyes water a lot and she can't read too much at this point. I'd say balance and fear of a fall are our major issues at this point. I think we are on a plateau at the moment (not much change in last four months). Oh, also has begun just occasional gait freeze. Keep in touch. Feel free to email me jim.pierce@gmail.com
I think the problem is that with PSP you seem to go on for a while doing quite well, and then something can happen - some cause of anxiety, or an infection, and suddenly you go downhill, and then plateau again. I saw this with Mom quite a lot. We'd be plodding along and she might even seem slightly better, and then we'd have a change of carers or something and bingo she'd just go downhill instantly. I dreaded when carers announced they were leaving or even going on holiday for a week because I knew Mom could easily deteriorate a bit ! Towards the end we did have a lot of problems one on top of another; Mom broke her arm at my house; her favourite carer left and the new ones were crap so I had to find another agency; she had a water infection ..... it all seemed to happen within a few weeks and Mom noticeably deteriorated, but surprisingly it was a pulmonary embolism which she died from, something we didn't expect.
I guess trying to hide any problems from the patient or keeping them as stress free as possible may help the patient quite a bit
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