Positive yopd facebook idea


#1

Hi all,

I’m very new here and also newly diagnosed with Young onset Parkinson’s disease.

I’ve struggled to find a suitable facebook community I can join where ‘younger’ people can share their thoughts, life experiences etc. It goes without saying that age is irrelevant to some extent, but being 35 I feel a little bit peripheral.

So, would anyone be interested if I were to start a YOPD facebook page for people in the younger bracket? Anyone could join regardless of age of course, no discrimination, but I feel it would be nice to have a community mainly centred for those under 50 shall we say?

Just a thought!

Most facebook pages I see are quite negative (I don’t think that helps), I thought it’d be nice to start a positive YOPD page? Maybe called something like ‘YOPD, the positive life!’ we could share funny stories, holiday pictures, achievements etc etc.

I sincerely mean to be indiscriminative of course and I hope my thoughts are understood.

What are your thoughts?


#2

Try Start Living Today PD on FB. I find it very informative and positive. It has PWP of all ages but alot of yopds. Its founder is in her 40s.

Starting your own page is also a great idea. I say, go for it!


#3

Thanks @Divine1, I have requested to join SLTPD, I’ll still consider starting one.
Hope you’re well.


#4

Hello there Drew7
My husband was diagnosed with Young Onset PD in Feb and this is the first time I’ve commented on this forum.
He doesn’t do forums or Facebook so I try to gather info for him.
I love the idea of a FB group where we can learn more from people he can identify with (for example: people still working when diagnosed with PD, coming to terms with the diagnosis when you feel that you should be in your prime etc).
This is still all very new to us and so he has only spoken to a handful of others with the condition but for some reason he has definitely felt the benefit of speaking to people of his own age.
Of course, we can learn a lot from every age group and I really am grateful to anyone (of any age) willing to share their stories in order to inform others, but I do like your idea, and more importantly … my husband does too.
Hopefully I haven’t offended anyone by saying this.


#5

Hi @WORRIEDWIFE, great to hear from you. Ive set the page up and called it ‘YOPD The positive life’ , so far its just me and my wife so feel free to join and be the only members lol, it may help you both to have a more private group before others possibly join. We’re still coming to terms with it but find being positive helps a lot.
:slight_smile:


#6

Thanks very much Drew7
Is it possible for me to join without FB telling all our friends and family that I’ve joined ?
My husband doesn’t want everyone to know yet until he comes to terms with it himself.
He’s only told a handful of people.
He has another medical condition (which may or may not be related) which we knew nothing about until he was diagnosed 6 years ago. He wanted to keep this quiet until he had a chance to find out more about it, get started on the treatment and generally get to grips with it. So I found a suitable FB goup and posted an emotional plea for advice and support (not understanding how FB works). Within minutes we started to receive messages from friends and family all over the world asking what on earth was wrong with him. For some reason FB had sent notifications to EVERYONE that I had joined the group and also shared my post with them all. Needless to say he wasn’t happy with me but thankfully soon saw the funny side and said that I’d saved him the unpleasant job of telling them and that if he’d paid for a banner to be dragged by a light aircraft, he wouldn’t have reached as many people.
Although he now jokes about this he’d be devasted if it happened again with this PD condition.
I think your idea about positivity is great and he’s always been a positive sort of guy but lately is struggling to be positive. Maybe chatting to other positive folk is the answer.
Thank you.


#7

Id love to join Drew. Do I need an invite?


#8

Hi @WORRIEDWIFE,

I must be honest I can only say ‘i think’ it will stay private, but it is a private page. I’m not too technically savvy I’m afraid.

Drew


#9

Hi @Divine1
If you search for ‘YOPD The positive life’ on facebook you can add yourself there. Its only my wife and I so far, so its in its infancy. But everything starts somewhere. :slight_smile:
Regards


#10

Definitely, if anything it’s a good distraction.
:+1:


#11

Thank you. I’ll do some checking on the FB privacy over the weekend and then once I’m sure that my FB friends and family won’t be notified I’ll join.


#12

Hi Drew,
Age is hugely relevant; the ‘onset’ age in particular. If you get to be traditional age PD (70s or 80s) you will still be YOPD. It is recognised as a separate rare disease, likely to be genetic and has its own symptoms… dystonia, dyskinesia and depression. Look up Spotlight YOPD. G x