PSP Association
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Where do I go to get support?

Hi I am new to this forum and I have been reading this afternoon bits and pieces and found it quite useful.

I am the carer for my partner who has had parkinson/psp for 14 years. Initially he was diagnosed as PSP then after 5 years it went to Advanced Parkinsons (though was told recently there is no such thing) then late last year it went back to PSP/Parkinsons. So feel really confused as I never know which umbrella I come under. Can I go to a Parkinsons nurse even with the PSP diagnosis.

Also I hate to admit I do not know what a keyworker is never heard of the term before, could someone kindly explain.

What do you do re a Lasting Power of Attorney if as I fear it is already too late as he struggles to sign his name in a box on a form any comments or advice much appreciated.

Thanks in advance

5 Replies

Welcome to this site. There is more expertise here than any where else.

Are you in the UK ?

We have seen a Parkinsons nurse regularly since being diagnosed. I didn't find it very useful though. But it is another advocate if needed.

You can fill in P/O/A if he can just make a mark. We did.

love, Jean


Welcome Catemac!

This site is wonderful - there is so much understanding of everything you're going through (and about to go through). However, I don't know the phrase "key worker" sorry. Maybe it's a UK term? (I'm in Canada).

Like Jean above, I've found our lawyers, bankers et al have been good with an unrecognizable signature, provided the patient's mind is clear enough to indicate understanding of what is going on and being communicated.

Good luck with things and keep in touch :-)

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Hello there, we also had a visit or two from the Parkinsons nurse but found salt team, district nurses, neurologist & GP much more helpful.Get them all on board. I took every bit of help i could when i cared for my dad. My daughter had a "keyworker' at nursery which was her main carer/teacher so I imagine it's the main person of contact for you, through your healthcare network??

With the power of attorney we did it online at a fraction of the cost. So easy & you literally save hundreds of pounds, (that solicitors charge) for what took me 15 minutes to fill out.

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Our Parkinsons nurse in Eastbourne definitely covers PSP and CBD patients. I have found her really helpful - advising on medication for sleep and anxiety, getting appointment at the local hospice, getting appointment with neuro-physiotherapist. So I would definitely recommend being put in touch with your local one.



I don't have any answers for the bouncing around diagnosis but with the PoA it should be fine as long as the name is somewhat readable and signed in presence of a Notary/Attorney. Hopefully communication isn't too bad.

I'd work on the PoA since once consent can't be determined it will have to go before a judge, that will take time you may not have.



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