Hi my uncle was diagnosed with cbd around ... - PSP Association

PSP Association

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Hi my uncle was diagnosed with cbd around two years ago and has recently been admitted to hospital after a fall and with a uti. My Aunty

Hilary1971 profile image
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Thinks he had deteriorated a lot since being in hospital. ie mobility a lot worse, speech and swallowing etc. Could this be him nearing the end.

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Hilary1971 profile image
Hilary1971
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6 Replies
Kathy profile image
Kathy

Dear Hilary,

Sorry to hear that your uncle is in hospital. I hope his infection is getting better. Infection and trauma (e.g a bad fall) and the stress of being in hospital and away from his familiar surroundings are all likely to worsen the symptoms of CBD. UTI can make you feel quite poorly and confused and the change of his normal routine can't be helping. Hopefully, once the infection has cleared and he is home again he may pick up a bit. Does your aunt have any help in caring for him? If not, she might need a care package at least initially when he first comes home. All the best, Kathy

Hilary1971 profile image
Hilary1971 in reply to Kathy

Hi kathy, he doesn't have a care package yet but think he's having a home assessment soon. To see how he manages and what his needs are. Some are saying he needs 24hr care ! Not sure we will just have to wait and see.

littlesupermum profile image
littlesupermum

Hi I agree with Kathy's take on the situation. My mum has cbd and getting out of routine always sets her back. Also her brain seems to have major problems understanding lots of new information snd stimulation. Tiredness and dehydration also effect everyone. Both are vommon in hospitals. Hope ur uncle gets home soon. To a home with support for him and ur aunt. We get hrs from local hospice. ladies sit with mum to give us a break.

jimandsharynp profile image
jimandsharynp

Hilary, Sad to say that there is no set pattern in dealing with PSP. It is not a one-size-fits-all disease, every patient is a bit different than another is some way. Some patients get a severe UTI in the early years of PSP and die. Others aspirate in the early years get pneumonia and die. I wish there were a way to know the answer to your question but there just isn't. Some have early UTI and pneumonia bouts but recover and live many more years. I've read that the expectancy is "generally" six or seven years but there are patients who have lived 11 or 12 years or longer. So not every patient has every symptom each individual is unique. Don't worry about what point your Uncle is at because he could rebound as is know to happen in PSP. Concentrate and dealing in the "here and now", loving him and giving him the best care possible. Looking ahead can be frustrating and IMHO it doesn't solve anything or help in any way. Jimbo

Hilary1971 profile image
Hilary1971

Hi all thank you for all the information and kind words. You are all right in saying just take one day at a time and deal with what happens from day to day instead of worrying what might in the future. Thanks again.

jillannf6 profile image
jillannf6

hi hilary

i have psp LIKE CBD but not quitethe same and as everyone says the pace of it s development is unique to each person

since ii was dxd 3 and half years ago i have had a few utis but none in the last 2 years + and am still upright most of the item apart from when i fall )far too many times a day _ and am GOOD - i have to eb as the dxs explains a lot of my problems

lol Jill

:-)

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