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

[Woodstock80]

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)

[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 in reply to David750]

Thanks David

[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 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 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 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]

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 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

[OB10]

Hi I’m in Pontypridd

[Woodstock80 in reply to OB10]

Hi,

There was a lovely guy called Dave who set up a Whatsap group connecting a few people in the area at various stages on the PSP journey. Shall I try and connect you? Kate

[OB10]

I’m in the middle of trying to find people in south wales I’ve left messages on Pspa answer phone but not had a reply. I’m trying to see if there was any interest in forming a S Wales group.

[Woodstock80 in reply to OB10]

Hi OB10- I will send you a private message now with my contact number on it. There is a meeting in Chepstow on Saturday which may be of interest to you. Best wishes, Kate