thanks for the replies: its great to feel... - PSP Association

PSP Association

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thanks for the replies

wheelrace profile image

its great to feel all of a sudden we are not alone its very hard to put into words how I feel about this awful illness Geoff my husband is a real hero to me but there is such a change to his life hes a fighter but the psp andcbd is beginning to take its toll its nice that you can reach out to others in the same situation I will ask questions as I can talk for England and Geoff can no longer speak so thanks for your help we have a great family who care it makes a difference its not all doom and gloom is it . my daughter in law directed me to this site shes a star.

8 Replies

Its a life saver having this group for support.

Jean xx

Hi wheelrace

It's good to have you here.

Welcome to the forum where we can all post the worst and expect to get responses full of care and understanding.



Glad you have good family support, and isn't it great when the son or daughter in law is a good 'un?

Your daughter in law gets a hug for her good advice❣️🙆🌟

Anne G.

Welcome wheel race

These are things that may help you if have not already done so.

Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.

Do your research,do ask here,so many knowledge people here with first hand experience.

Try to stay ahead of this disease, meaning that if your low income look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.

Dee in B6

wheelrace profile image
wheelrace in reply to

thank you we have adapted the bungalow the specialist said Geoff is not well enough to warrant a peg he thinks its for the carers benefit and not the patient we have been married nearly 56 years so a dnr is difficult thanks for your advice we worked all our life but you don't realise how much costs come with illness do you but his wellbeing will always come first hes staying in his home

Hi wheelrace..Kim here from Australia. My husband Baz has PSP also. We are also newbies so I look forward to sharing the happy and the not so happy times ahead for both of us and our newfound friends..cheers

I am pretty much a newbie too. I am in the US. So grateful for this site.

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