PSP

[Chrisabo]

Just been told that Hubby Laz does not have Parkinsons but PSP, he also has Dementia which was diagnosed 5 years ago. This year he has deteriorated badly. But at least I knw why now. Onwards & upwards xx

[abirke]

Dear Chrisabo, welcome to our little family. Most of us are carers, some of us are not from the UK (Arkansas, USA) and still some of us are the ones with PSP and some with CBD. It sounds like you probably have your own routine going for the last 5 years. Is husband still independent enough for walking, eating and bathrooming? My husband is 56, diagnosed in '13 and has no other symptoms than cruel PSP. He is able to walk if he has railings and only for a short distance; mostly wheelchair bound. He is able to do his morning bathrooming (he's in shower right now...sitting down ...love those shower chairs!) He no longer can swallow, so he is PEG tubed and just recently became catheterized.....energy level is low but he is happy listening to books or watching tv.

Again welcome.

AVB

[Chrisabo in reply to abirke]

Dear AVB, wow your husband is so young, how sad that you've had years stolen from you because of PSP. My Husband is 78, 15 years older then me , he suffered 2 mild stokes 13 years ago & his health has deteriorated in the last 6 years. Fortunately our social worker has arranged for morning carers to come in to wash & dress him, mornings are bad for me as I have Fibromyalgia. Laz also goes to a Day Center 2 days a week as he was being very difficult & not very nice to me. But the last couple of weeks he has calmed down but I think that's because he's getting worse. He is now in incontinence pads, as he struggles to get to the loo in time, he suffers with constipation but so far always managed to get to the loo then. He walks very slowly with a walking aid but do expect him to be in a wheelchair in the near future. We have our first appointment to see the Specialist in PSP in January 26th. I wish you both a Merry Christmas & if possible a healthier New Year. Chrisabo x

[abirke in reply to Chrisabo]

Thank You Chrisabo. Young or old PSP us and our loved ones from happily ever after.

But let us both have a merry Christmas and a healthier New Year. I am glad you have a PSP specialist to give you all of the answers....Maybe you should write a list of questions to this team. We could help you with some Q's.

EXample{

He had 2 mild strokes 3 years ago. He has been rediagnosed with PSP from Parkinsons....Do you (team) feel that he has had PSP for 6 years?

OR

I realize that PSP does not have strict stages but How long would you say he has had PSP

Do you feel there are better meds for patients with PsP ? esp in light of his history with strokes.

I don't know if there are any questions that the team will miss an answer for, but it's good to write qs down....I know this cuz I never do and remember when we get in car! Of course it doesnt sound like you are new to doctors!

Again Merry Happy

AVB

[Chrisabo in reply to abirke]

Thank you so much for your help & advice, I have made a list, Wishing you both a Merry Christmas & a happier New Year.

Chrisabo x

[Pentland]

Hi Chrisabo. So sorry you've been given this diagnosis. I find it incredible that Consultants are still finding it difficult to diagnose PSP and CBD. At least with Parkinson's there was always the possibility of medication. I am hoping that since you have found this site that this means you have been in touch with the PSP Association. They have wonderful literature you can have giving lots of helpful information about PSP. Ths is a great community to be part of as someone else has usually been in your situation before and can give advice. Take care of yourself as well as your husband.

[pzagy]

Welcome Chrisabo you found the right place to get all the information and support here.

The initial visit we were told MSP, then CBD. Don't know which one is worse they are all evil. I think with CBD you are not given a confimred diagnosis until after an autopsy, which makes me think that they really dont know either.

You are not alone, we are all travelling on this journey

[easterncedar]

Hi, Chrisabo. My guy was also diagnosed with dementia five years ago, but that seems to be reflective of his inability to access his short term memory and to speak. In many ways he is still very sharp. He is quite sensitive and thoughtful and very apt in his usual responses. How has your husbands dementia appeared, if I may ask?

Love and peace, Easterncedar

[Chrisabo in reply to easterncedar]

A friend of ours was visiting & notice a change in him since her last visit & suggested I get it checked out. Our GP did the memory test & referred him to the Memory Advisory Team. After a couple more tests & an MRI scan we saw the Consultant who prescribed Memantine which did help. Laz had had 2 mild strokes back in 2003 & although recovered, the strokes had caused some damage. He stopped driving 3 years ago as he reactions were just to slow. This year I've noticed a big change in him, on one occasion I had to call Paramedics as he fell in the garden & the Paramedic said 'Laz was showing signs of Parkinsons' he was diagnosed with PSP last week after another MRI scan.

Love & Healing, Chrisabo