Yesterday I helped out at our local MS Society’s flag day collection in town after receiving an email pleading for more volunteers.
The orange stand was hard to miss and I was kitted out in a yellow sash, an ID card and collecting tin. I’m still not back to full speed energy-wise, so I sat on a picnic chair and spent the time chatting to people who came over to donate money.
It was a fascinating but disheartening snapshot of the public perception of MS. The consensus seemed to be that MS is an ‘old person’s illness’, that we all end up in wheelchairs and there’s no treatment for it. Maybe having three pensioners and me at the stand just reinforced this myth.
Strangely, younger people were more willing than older people to come over and donate and a good few stopped to talk about people they knew with MS and the impact this had had on them and their families.
The other volunteers told me donations had dropped significantly in the last few years, perhaps not helped by the fact that so few society members were willing to help on collection days. Out of over 250 members in Cardiff, only five were out yesterday. Surely it’s not asking too much to give up a couple of hours once or twice a year?
And there’s the nub. We all want good, local groups and most of us need the support of other people with MS at some time or other. These groups need donations to exist. Yet a lot of us complain the groups are old fashioned, depressing and full of ‘old’ people, even though MS is mostly diagnosed between the ages of 20 and 40. So why aren’t we joining these groups, bringing in new life, fresh ideas and extending a helping hand to newly diagnosed people?
What’s the point of complaining about something yet refusing to be part of the solution? If we want local support groups to be more open to change, we need to begin at the grassroots level and get out there, be visible. If we expect the public to dig deep in their pockets, how about we give generously of our time too…
We seem to be matching each others blogs! Good to see that the tremendous effect of MS branches is being flagged up.
Definitely. Just wish more people would volunteer!!
Another good blog! My MS nurse told me to stay away from my local MS centre for the moment because it is mainly used by older people more severly affected. I wish they’d encourage more people then we could have a good mix of ages and abilities on hand to offer support and information to all walks of life! I’m still a bit of a scaredy cat and haven’t ventured there yet even though I drive past it several times a week. I must sort myself out…..
Thanks Jenny! I was warned not to go to them either, lol. I finally went to my first one and lasted about 15 minutes. It was pretty grim. But I hooked up with a younger woman and we go now and again. Much better! Let me know if you go to the one you drive past! You may be surprised….
I am newly diagnosed and still in the throes of deciding which drug to take. (it grieves me that the onus is on me to make the decision because my nurse can’t be seen to favour one company over another – once again the patient’s needs are low priority! Cognitive issues are high and I am struggling with it, the decisions website is informative but not necessarily helpful.)
So, what I have been wandering is whether or not to go to an ms meeting. On one hand there would be benefits, but on the other hand I am not sure that coming face to face with what my future could be like is a good idea right now.
Too many choices, not enough useful brain!
so sorry to hear you’re not getting much guidance about DMDs. Have you thought about posting a query on the MS Society or Shift MS forums?
What I would say about the meetings – give it a try! Or even start an informal group yourself by posting on the forums or twitter? For me, Twitter is probably the best MS support group around, lol. And this blog of course 🙂
Let me know how you get on with the DMDs!!
Oh thanks, I’ll have a look at those.