South Wales - people with PSP/CBD

[Kelly55]

This is a message to anyone in South Wales who has PSP or CBD. I've moved back to Cardiff and noticed there are no support groups here for people with the condition or their carers. I've enquired with the PSPA about the feasibility of starting a group and they think there's around 30 people in the area. Anyone here feel they'd like to have this opportunity or attend? I'm happy to try and set up and organise the group bit just want to check people would be interested.

Thanks

[easterncedar]

What a great photo! So sunny, such lovely smiles. I wish we were closer. I'd love to meet you! Easterncedar

[Kelly55 in reply to easterncedar]

Thank you, that would be great if we could all meet! A party for us all

[Amilazy]

Good luck Kelly, the North Wales group though small has been a good resource.

Best of luck setting up your group. Tim

[Kelly55 in reply to Amilazy]

Thanks Tim. Hopefully it can help bring some families together and be a good resource and support. Glad you found the north wales one useful

[Pjgil]

Hi, I live in Cardiff, my dad has psp and lives in Bridgend, we currently go to the group in Whitland. they are an amazing group of people but it would be perfect to have a more local group

Pj

[Kelly55 in reply to Pjgil]

Hey PJ! Sorry to hear your dad has PSP, but glad you've had the group in west wales for support. There's definitely a lack of groups in Wales so I think it would be great to start one closer to Cardiff. I'm currently researching venues around Cardiff and Bridgend to see what's suitable. But would be great to get something sorted and hopefully get to meet you and your family soon

[abirke in reply to Kelly55]

Wow that's just beautiful! And a marathon runner, I'm lucky to walk the dog...so is she!

AVB

[abirke]

Good luck to you and bold and beautiful to start a support group.

Love the photo. Mother and daughter? both have same lovely smile.

AVB

[Kelly55 in reply to abirke]

Thanks AVB, the picture is me and my mum last spring shortly before I undertook the London marathon. Sadly I lost mum in June but I feel I'd like to start a group now as there is no local group for others that need support.

Love and best wishes to you X

[Sun16flower]

Hi Kelly55.

My Mum has PSP diagnosed in April. Deteriorating quickly, unfortunately she is unable to leave the house. She lives in Aberdare and relies on carers coming in 4 times a day. I myself live in Hampshire, I would welcome the opportunity to meet as this disease is very isolating but because of the distance this is not possible. I wish you well in your endeavours.

[Kelly55 in reply to Sun16flower]

Hi, I'm so sorry to hear of your mums diagnosis and her condition deteriorating. If you ever want to talk, or ask for any help or advice you can contact me any time. This website is a great resource too. Would your mum be able to leave the house in a wheelchair? How is her PSP affecting her, in what ways such as mobility, speech etc? If you are ever visiting and would like to meet let me know or if you'd like my number or anything. I know how frustrating this condition is and am happy to help if I can in anyway X