psp help

[Lillian44]

hello, my husband is a young 79 who has been diagnosed with psp last year, how ever he’s had this for at least three years prior but was misdiagnosed with Parkinsonism’s, we’re finding it very difficult to to get to know any one with a similar situation, and we feel as we’re very much on our own, we would like to see if there’s a local group or meet up with anyone with psp to talk and mix with them, we’re in the Cleveland area,

[MullerRice]

Hi Lillian44

You shouldn't feel difficulty and certainly never alone - the wonderful people on this forum will certainly never let you.

I too am a young 76 diagnosed only last with PSP (actually PSP-CBS). Unfortunately I am in East Anglia so I can't offer any advice on Cleveland groups. Good luck with your quest, and virtual hugs & kisses

[SunriseLegend]

I think it's likely to prove difficult to find anyone in your local area - and even if you do, they may not have the same symptoms or be at the same stage. I'm finding this forum invaluable to learn more about this horrible disease as it progresses in my husband. You can ask about absolutely anything and someone or other will have some experience to share. Wecome xx

[Harshacceptance]

This forum is incredible … it’s been a godsend. CBD/PSP are rare so this forum brings people together who understand.

The documents on the psp website are amazing - I suggest printing them out and giving them to the healthcare professionals as generally they have never heard of it let alone looked after a patient with it.

[David750]

Hi Lillian 44, I am sorry you have all this to face. Please contact the PSP Association (pspassociation.org.uk) Helpline and ask to speak to the Care Navigator for your area. She will be able to advise on all the support available in your area including any groups to meet. There is also an on line Zoom Group for your area for carers, hosted by a PSPA Volunteer with experience of caring, to facilitate exchange of experiences and support. I found the PSPA of great benefit to me when looking after my wife with PSP. All my very best wishes 🙏

[Sgt_Pepper]

I would echo the comments from David 750 - my wife was diagnosed with PSP some 18 months ago and is already showing signs of progression. The PSP Association have been so kind and helpful throughout - I cannot speak highly enough of them. Good luck and stay strong.

[MRSYafffle]

Sending much love you both, this forum is a godsend. Full of valuable information from wonderful people who will offer advice and support. Xx

[LARWLSN]

Hello, if no one in your area materializes, CurePSP has regular virtual meetings for people in the US. My dad, who is looking after my mom goes to them regularly, they are in NJ. I would encourage you, if you haven't already, to reach out to CurePSP to get invited to the meetings.

[MullerRice in reply to LARWLSN]

I'm afraid it's Cleveland, UK not Cleveland, Ohio US so PSPA will be able to help, and not CurePSP

[LARWLSN in reply to MullerRice]

AH! Sorry about that misunderstanding. The PSPA has several groups. I'm sure one of them would take you in.

[Delaraysbest]

Hello, I am 70 years old diagnosed with PSP about 1 1/2 years ago and Parkinson’s about 5 years ago. I have progressed slowly with difficulty walking, speech has slowly started to get worse.. Other than that I feel very healthy, still driving and taking care of myself. I do PT 2 x per week which I find very helpful. I live in the Pittsburgh area. Feel free to reach out if you need any other info,,