Parkinson’s UK membership update


#1

Parkinson’s UK membership update

In early 2019, we’ll be launching a new Parkinson’s UK membership offer and inviting more people to join us. To help raise awareness of Parkinson’s, we’ll be asking all members to share some facts/info about Parkinson’s with the people around them. But we need your help to decide what this information about Parkinson’s should be.

Please share your ideas with us by commenting on this thread. Thank you! :slightly_smiling_face:


#2

#3

Publicity! Keep poking the press with a stick, even little things, I use Parkinsons Warrior as a game name, and others ask about PD or make supportive comments…

Make our true plight known, …

Sorry heading towards a rant!


#4

The recent Meds shortage, if that had been insulin the press would have been giving history of diabetes every 20 minutes …just an example of our low profile


#5

Reduced facial expression / mask-like face / apparent staring - people tend to misunderstand.


#7

progressive and incurable as yet. Every sufferer has different problems which are wide ranging


#8

Hi Reah, Note :- SpineSmart - is this the sort of response you are expecting from the public - advertising their wares on the forum - selling chairs costing up to 6 & 7 hundred pounds??

I think not - sheffy


#9

Hi Sheffy,

Thanks for your feedback. We will pass this on to the Parkinson’s moderation team for review when they return after the weekend.

Best wishes,
Edwina
Moderation Team


#10

I want people to understand that this disease will progress as it is going to and while some behaviours might help, I can’t fight it or stop it progressing. I suppose I would like people to understand that, like many chronic conditions, it is a life sentence that you learn to live with as best as you can. I want people to understand how desperately I would like a day off from it and how my heart sinks on the rare occasions that I sleep and when after a few moments of waking ignorance, I realise that it is still there - that there will never be another day when it is not there.
I don’t want to be represented as a fighter who is determined to beat this thing, it’s not realistic. I would like people to know that I reluctantly exist alongside it and manage it as best as I can and that I don’t deserve praise because, at the moment, things are progressing quite slowly - I don’t think I’m doing anything differently to so many people whose Parkinson’s is progressing more rapidly. I think it does what it does and I don’t want praise when things are going well because the flip side is criticism when things are tough and I’m not doing so well. I can’t prevent things getting tough because they will at some point irrespective of what I do to try and stop this happening and I want people to understand this without judging me because in spite of the rhetoric, I am not in control of Parkinson’s and I cannot be in control of it because I don’t know what it’s going to do or when; I cannot stop it and I cannot slow it down; I can only control how I live within the confines of its impact.
It’s not about pity or comparisons with other conditions that are deemed to be easier or harder to live with ( it’s not Top Trumps :-S ). I think it’s about raising awareness instead of raising expectations or unintentionally encouraging judgementalism.
Hmmmmm - I’m not sure this actually makes sense :-S
J x


#11

This is such a brilliant description: thank you so much. It describes exactly how uncomfortable I feel when I get the “managing so well” compliment, or someone kindly tries the “fighting it” analogy.
I have been trying to put this unease about conversations with kind but uninformed people into words for ages, so thank you again for expressing it for me, and for others I am sure.
How nice it would be if the general public were a bit more informed, but there is such a variety of effects of Pd, where do we begin? I hope the 50th anniversary campaign will help.


#12

Thank you all for your comments - they all very honest and heartfelt. My colleague will feedback these back to the membership team. :slightly_smiling_face:


#13

You speak for us all Well done


#14

Well said, it makes perfect sense.


#15

What you say is spot on, Jackson… So well put.


#16

Thank you for your really kind replies, I know that there is no unified view but knowing that there are other people who feel the same matters more than I’d realised.
J :slight_smile:


#17

#18

Well said, Jackson. Your post put me in mind of a Billy Connoly quote- “I’ve got Parkinson’s. I wish he had (expletive deleted) kept it!”


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