PSP: Hi I am new to this so bear with me. My... - PSP Association

PSP Association

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Hi I am new to this so bear with me. My husband is 75 is suffering with psp, he was diagnosed in November 15 but I think he has had it a couple of years before that but nobody new the problem, it was a gradual thing. What an awful disease it is, I am trying to cope but feel so helpless for him.His walking is very poor we have just recieved a wheelchair which is a big help, he,s not dependent on it yet. He is still eating well and not incontinent. I know that things will progress and am scared for him.I am 73 this year and have good family round me, I hope I can keep well for him. I am getting tired I haven't had a break since before he was diagnosed,although they are organising a sitter so I can get a break. We have been married 52 years in July never thought we would finish up this way.His speech is poor and I am hard of hearing which doesn't help if he falls in the night. Any tips anyone can give me would be most welcome.

11 Replies

Sorry to hear your predicament as so often is the case PSP is hard on both the patient and the Carer. First things first you need to get more help if in the UK ask your GP to refer you to Marie Curie Nurses they can provide some relief for you over night. Have you claimed Carer Allowance if not contact your local CAB or Social Services to help you. It may be worth discussing with your GP getting on to Continuing Health Care (CHC) to assist with care funding.

If you can contact PSPA the will help you sort out what you need to know and what you need to get! I do not know where you live but there may be a local PSP support group near by who can provide social contact.

Good luck Tim

You can also claim for attendance allowance , do you live in the UK , accept all the help or AIDS you are offered.

A bed grab rail this helps Turning and getting into and out of bed . Don't try and lift yourself .

whe he is trying to raise himself after a fall . Get him to turn and go onto his Kees , if that's possible but leave a chair while you hold it for him to hold onto while getting himself up ..

You can in here and ask anything that is troubling you , personal o not ,. We have been ther and done that !!!!

Hidden in reply to cabbagecottage

Thanks for that, l am in uk Leeds Yorkshire. We get attendance allowance, am taking all the help I can get. He does fall a lot so the advice will help thanks. You feel so helpless and I do think people understand even the professionals. xx

Sorry I assumed your husband had attendance allowance if not that needs to be claimed so then you can claim Carers allowance

Hidden in reply to Amilazy

That's ok cant get carers due to his pension from work. So glad for the advice.

I found the local Hospice a life saver. Chris goes there for 5 hours once a week. They also offer support, counselling etc. Its good to be known there.

I got a " camel " to help him get up, although I agree with cabbagecabbage' advice.We always need to protect our own health.

This site is a god send.

love, Jean x

Hidden in reply to Doglinton

Thanks I wondered about that do you have to go to your doctor to be referred.

Doglinton in reply to Hidden

We have a local neurological team and the community matron referred us. Hospices are charities so vary in the way they are run.

You could call them and ask. They are so kind and, in my area, know about PSP. My G.P. hadn't heard of it ! To his credit he has now read it up and takes an interest.

jillannf6 in reply to Doglinton

like mine jean1

;lol jill


Doglinton in reply to jillannf6

It makes such a difference. He also listens to me and respects my input. We 're lucky, I think.

love, Jean x


i'm new to this website, so don't really know how it works. i've used a conveen {made by Coloplast} now for more than two years, so i don't need to get out of bed overnight - this solves the problem for me . they are provided free by my gp. hope this helps.

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