Myself and another forum member hope to launch a group for people newly diagnosed Young Onset Parkinson’s Disease. Some kind people have been in touch to offer an ear, and I’ve booked on the first steps programme, but something like an informal zoom group is something I believe I’ll benefit from and it would be great if other people were interested too.
Whilst the couple of people who have come forward so far are both newly diagnosed, I think it would be great if there was a range of people there. It would just be great to have some contact with people going through similar stuff to me right now, as if it wasn’t for this pandemic I’d be trying to fill my days doing something similar in-person.
Send me a DM if you’re interested and we can try to sort something out.
Whats the definition of young onset?! It seems to be much used but not defined!
Under 40, under 50, under 60? Working age? Young at heart?
Not being pernickety just curious what it actually means!
Anyone who wants to get involved is young enough! I know there are official definitions, and there are different concerns when diagnosed in an earlier stage in life, but whoever wants to get involved will be welcome.
You may want to check out the YOPD Council series of webinars, produced by the Davis Phinney Foundation in the States.
Also Spotlight YOPD in the UK has been going for five years - it’s a reg charity focusing on YOPD, which is a separate syndrome that is estimated to account for 10 pc of all those dx with PD.
The CEO is always happy to chat to newly dx.
G x
