Other Support Groups?

[SimoOT]

Hi are there any other support groups/information groups for people with Progressive supranuclear palsy (PSP)?

Something for family members ?

I looked at the admin but there is no new posts for years? I was wondering if I can pass something up to date to the person I am supporting and their family.

Thanks in advance

[Sun-flowerwearer]

Hi SimoOT

This is a current and active support group with lots of current posts by family members asking questions and getting advice regarding PSP and CBD. I am possibly not understanding your post about it being dormant. This is the PSPAs chosen forum so lots of Uk people posting. Family members can ask any questions on here and people will respond. .

On Facebook there is caregivers of Progessive Supranuclear Palsy and a couple of others like PSP Warwickshire that attract worldwide contributions ..all very supportive and informative.

Hope that helps.

[Millidog in reply to Sun-flowerwearer]

I think the comment re admin maybe comes from seeing that the admin names on the base of this forum page joined quite a long time ago and don't post often or haven't recently, rather they post news and updates on the pspa website. I think their role on here is to moderate the page like admin of a group on Facebook.

[messier]

If you are after in person groups then PSPA can advise on the regional and other groups and where and when they meet. Some of them also meet online as well as in person.

[Millidog]

Hi, To add to Sunflowerwearers advice about this group. Aswell as posting questions and asking for advice you can set the forum to send you daily updates so you can read recent posts and responses and you can use the search bar to search for specific subjects eg recently diagnosed as a topic. You then filter to get only psp group responses and that way you'll find relevant info. As Messier has said do contact the PSPA for info on regional groups and newly diagnosed or carer zoom meetings and if uou look at their website in the information and resources section you'll find lots of info about PSP and CBD especially for carers, hope this helps a little x

[LFG3]

Hello,

There is an excellent PSP support group that is USA based at smartpatients.com.

Then join the PSP and CBD group. This healthunlocked support group is very helpful too but it is UK based and they have a completely different healthcare system than the US.

[Sun-flowerwearer in reply to LFG3]

Yes smart patients is great to too and I’m a member.

SimoOT is Uk based I think.