PSP Association
5,186 members7,187 posts

We are not alone - thank goodness!

When Mum was diagnosed with PSP we were told that it was very rare and nothing was known about it.

I read as much as i could find - then had to stop as i was so scared.

Now I read the blogs with sadness and relief - it is so comforting to know i am not the only one in the country with a family member who suffers from this awful disease.

When Mum moved into a care home i was devastated, but knew we could not look after her without moving house and she didn't want me as an only child to have all the responsibility. The carers are wonderful but i so worry about how this is all going to pan out!

Moving counties meant a new consultant, he was very blunt - "nothing we can do for you!" and was very dismissive. There is one Parkinson's Nurse to cover a very large area (she is great but so over stretched).

Mum has been promised OT support to get special cushioning to support her in the chair -(she is always falling to her left in a chair and her head hangs the same way - she is so uncomfortable but no amount of cushions seem to help) this has not happened we have been waiting for 5 months now!!!!

Botox has been mentioned for the stiffness in her neck and shoulders -again we have been waiting for 5 months! I suspect it is too late to help her now.

Luckily Mum still has good understanding and will do as she is told by the carers, but keeps challenging them as to when she will be allowed to move around on her own! Sadly she tells me (with extreme difficulty and a litewriter) she feels she can do anything when lying in bed but hates it when she tries to move and can't.

Just really wanted to say i feel less lonely knowing you are all out there and to send love to all carers and sufferers. Together we will get through this!


3 Replies

Oh I know excatly what you mean! There's only so much we can read about PSP early on- it's scary and then it's depressing. Eventually we get support from reading about it, and from each other. It's great to share moans and thoughts and virtual hugs and rants :)

Your mum sounds much like mine- when she was in bed she thought she could move mountains ...

Fiona x



I really understand the frustrations you must be feeling. We had a similar situation where dad was initially placed just outside his Health Authority Region and the Parkinsons nurse wouldn't 'cross the border' so to speak. We too had problems with getting dad a chair, just sounds like your mum leaning to the left and sometimes he was almost falling out, cushions not helping at all. I was even told when I asked for an assessment for the chair that ' there was a very high criteria for chairs'. I think you can imagine my response to that :) I think the waiting lists for OT's are very long, so many people are trying to get their help and as they don't understand the speed the condition is moving they won't realise the urgency. keep giving them a prod!!

Dad was a little tinker too and he would challenge the staff and when he could still get up and the staff weren't around, he'd go to get up out of the chair and usually fall. Then he'd get a good telling off by everyone :)

Its so hard when others around don't quite understand the condition but as you say you aren't alone and everyone on here understands what you are going through and will do anything to help everyone else.

Take care of yourself and give your mum a hug from me

Lesley x


My support group is very small. We all live in Denver or about an hours drive away. Frankly I do not know what I would do without them. They have helped me anticipate problems. Their " been there done that" wisdom has kept us one step ahead of most problems.

I have a medical supply catalog that I regularly consult. When I think something might be helpful I bring the subject and a picture with me to the appropriate person.

Sorry your mother is so uncomfortable. I think this leaning to one side is not unusual. The old theory about the squeaky wheel helps in nursing facilities.


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