Connecting my Dad with others with PSP or ... - PSP Association

PSP Association

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Connecting my Dad with others with PSP or similar in South East Wales, UK

Woodstock80 profile image
8 Replies

My Dad (72 years old) was diagnosed with PSP around 2 years ago. He has expressed a wish to connect with others who also have the condition but there are no official groups/ clinics in his area (he is based in South East Wales, UK). His speech has declined a lot but cognitively he is doing fine and can still email and send text messages (texting is a little tricky due to his eyesight but he can manage it a bit). He is a big rugby fan and used to be a family lawyer. I think he is looking for someone to exchange some emails with for a sense of camaraderie, ideally from the same geographical area as him. Let me know if there is anyone out there! Thank you (from his daughter, Kate)

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Woodstock80 profile image
Woodstock80
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8 Replies
David750 profile image
David750

Hi Woodstock80, I am so sorry to learn of your Dad's situation . Please contact the PSP Association Helpline to talk through your concerns. They can provide information for your local area plus other support. (pspassociation.org.uk).

Woodstock80 profile image
Woodstock80 in reply to David750

Thanks David

Pspuser profile image
Pspuser

Hi Kate,

My wife has PSP (diagnosed 9/23) , and we live near Cardiff airport. We are in the process of trying to arrange a coffee meeting with others in this area who attended the newly diagnosed zoom meeting in February. A person from Bristol has expressed interest, so we are arranging to meet somewhere half way towards the end of April. Would your Dad be interested in coming?

Regards,

Dave

Woodstock80 profile image
Woodstock80 in reply to Pspuser

Dear Dave,

Many thanks for replying and this would be great. I will try and send you a private message with my email address...

Best wishes

Kate

Barnsleygirl profile image
Barnsleygirl in reply to Pspuser

Hi Dave

We are in Cardiff and would love to meet others in the area. My husband was diagnosed last May.

Kind regards

Kaye

Woodstock80 profile image
Woodstock80 in reply to Barnsleygirl

Dear Kaye,

Thank you for your reply and sorry to hear about your husbands diagnosis. I will send you a private message with my contact details on it.

Kate

timbowPSP profile image
timbowPSP

I am 82, PSP diagnosis 6 yrs ago, in Malvern .... but DVLA took me off roads 2 months ago. Really empathise w/ ur Dad, as social life is my main support is social functioning etc.. I've written 7pages of my experiences, and suggestions for helping ppl deal with things, inc practical, diet, etc. Will send a copy if you give me ur email address. V. best wishes to u, Dad, and all! TimbowPSP

Woodstock80 profile image
Woodstock80 in reply to timbowPSP

Thanks for replying Tim. Sorry that you have had to stop driving -that must create a challenge. I will send you an email for your tips

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