Where do I go to get support?: Hi I am new... - PSP Association

PSP Association

9,658 members11,568 posts

Where do I go to get support?

5 Replies

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
doglington profile image
doglington

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

raincitygirl profile image
raincitygirl

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 :-)

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.

Richard33 profile image
Richard33

Hi,

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.

Richard

Dadshelper profile image
Dadshelper

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.

Ron

Not what you're looking for?

You may also like...

I'm new here. Where do I start...? Help!

Discovered this site 2 days ago, wow! its fantastic. I have been on it for hours! My head is...
khola profile image

I don't know where to start.

My Dad was diagnosed with PSP a few months ago, been ill for a couple of years, the trouble is, he...

Where to start?

Hi all, I have been delaying posting on here for a while as posting on her is admitting that PSP is...
Hayleyald profile image

New

Hello thought I would just introduce us. My other half Brian has just this week been diognosed with...
jzygirl profile image

SAM said “I want to go home”

I am posting this for my love, Sam. Sam “went home” March 28th at 11:15 am after a long courageous...
Krmaier6896 profile image

Moderation team

HelenPSPA profile image
HelenPSPAAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.