Support groups

[JusNeville]

Hi everyone.

My grandfather is about 2 years (from diagnosis) into his PSP but seems to be worse each time I see him. I’m struggling to cope with the change and i’m worried for what’s to come.

Are there any support groups on facebook or group chats available with people that wouldn’t mind talking about stuff?

Thanks in advance and I hope you all have a wonderful day or night.

[LFG3]

Hello,

I'm so sorry you and your family are going through this. PSP is such a long and difficult journey. This support group is fantastic but it is based in the UK and their health care system is much different than ours in the USA. There is another good support group that is US based and is found at smartpatients.com. Then you need to join the PSP and CBD group to get the threads relating to those diseases. Read the other posts, ask any questions, vent if you need to. We have all been there or are still going through what you are. The biggest thing to know is that you are not alone and we all will help you in any way we can. My thoughts and prayers are with you during this challenging time. ❤️

[Ladyqueenbee in reply to LFG3]

Thank you so very much, I didn’t know there was a support group in the US, I’ve been diagnosed with PSP just last December 2023 after a diagnosis of Parkinsonism in May of 2023, but actually started having problems with imbalance a year earlier.

[TimGill12]

pspassociation.org.uk/

[TimGill12]

There are local groups in the UK that PSPA can put you in contact with. Whereabouts are you?

[Rose1sunflower]

As TimGill says there are local groups organised by PSPA. I also benefit from the monthly Zoom meetings that PSPA organise. There is usually a topic like ‘Sleep’, Travel and holidays’ for example at the start of the meeting. After this informative section there is time to a chat between the members of the group. Ours often has a ‘Show and Tell’ as we share gadgets and ideas that assist us! It is a useful group as they are people going through the same thing and have that understanding and you don’t have to explain PSP! You also find that those with PSP seem to have their own time line, there are similarities but each case is unique in a way.

Contact PSPA to get the contact details of your local groups.

[timbowPSP]

Hi Neville, I'm an 82 yr Grandad 5 yrs into PSP. Have made a 7page report on what I have experienced, with tips and ideas for UK use. Happy to send you copy if u tell me ur email address. May have some useful bits for you. Cheers. TimbowPSP

[Zerachiel]

Hi here is a link to local PSPA face to face meetings

pspassociation.org.uk/event...

And these are zoom meetings

pspassociation.org.uk/infor...

Do get in touch with PSPA as they can add you to mailing lists when meetings are coming up.

[Bergenser]

I would agree with all the answers above that the PSPA and Health Unlocked are particularly good. groups.

There are multiple groups on Facebook and I've joined some (it's not really my thing). You can try e.g. "Caregivers of Progressive Supranuclear Palsy (PSP)".

[ARutzen]

hey there, I haven’t been on this site in a long time but still get notifications and there are some on FB that I joined years ago. If you want you can message me on FB and I can send you the link. It definitely helped