Last reply 9 months ago
I need your ideas – building a community

My local MS community centre is only up during the day. Having spoken to people at the centre they’ve been said they would support me in opening it a couple of evenings a month for young people / those that work full time.

I’m really excited about this, however, I’m stuck for ideas of getting the word out there. And more – what do I say? What would make you want to (probably) step outside your comfort zone after a long day at work to come and hang out with other MSers?

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10 months ago

@gimmehopejoanna , I’ve always seen that as a problem, MS meeting places, be that community centres or MS Treatment Centres are more geared towards the non-working community. This makes them inconvenient and not particularly inviting (too many old codgers there, like me) to the younger demographic.

Lack of support for this demographic was the driving force behind Shift.MS

There’s also a Facebook Group, MS-UK, which may be more responsive. It’s UK-based, rather than Shift.MS, which is international…..

10 months ago

Having things to do rather than sitting around talking might help – a kind of try something new idea. It’s tricky to get a group going so set a series of meetings that are predictable.

You can also pay Facebook to target ads – it’s quite cheap. students I work with seem to be on Instagram a lot more. Get a social media management app which pushes out your content to all platforms.

Good luck our Sheffield group took a while

10 months ago

Hi- as @stumbler notes this group is global so I am responding from Wisconsin/USA and, sorry, won’t be able to attend πŸ˜‰

I only went to one “support” group type meeting only a couple of years after I was diagnosed maybe in 2007?) and was so depressed by what I walked into that I never went back. At that point MS hadn’t affected my mobility, I was working full time and very active. The room was full of people in wheel chairs and most of them were at least 20 years older than me…they looked at me like
“what are you doing here?” and I really wondered myself.

The discussion was one applicable to everyone- “current research and upcoming treatment options”. I now realize that at that point there were only two approved DMTs and that group had likely never had any treatment at the time of their Dx and didn’t find the medical community of any help at all through their progression.

But- as far as what to say- this is an problem I have with so many MS publications and discussions, everyone is a unique individual and may have totally different issues than the person next to them. One person may have vision issues while another balance and the next memory and cognition. Focusing on any of these specifically may only benefit one person in the room while the others are wondering why they are there πŸ˜‰

A topic like “current research or developments” could apply to all and something I could have benefited from was “what are all the symptoms of MS” as I didn’t realize that I was being impacted by spasticity when it started and that my leg jerks in the afternoon were related to my MS. I would have taken them more seriously if I had.

We all can benefit from stress reduction and more sleep so they may be good common issues. We could also benefit from adding humor to our life as a stress reducer so I’m not sure if there are “funny people” that would be appropriate but gearing people towards what fun things they can do- like what movies they really enjoyed or plays, etc. it could be more like a fun social outing type of setting as well. That is what I would like to attend after work…something a bit lighter and fun.

Keep in mind that fatigue can catch up to the MS group pretty early as well. I’ve seen comments from many that they “turn into a pumpkin” at like 8 or 9 so need to be home by then. I think my magic “witching hour” is at 10 but as it is getting darker earlier these days and I get older I think it is moving up all the time πŸ˜‰

10 months ago

I’m so sorry I haven’t replied to this thread I started but thanks for your thoughts and insight.

I agree with what you’ve said @itsmewithms – I don’t want it to be depressing for people. That’s why I’m feeling so passionate about starting a group for younger people of an evening who are still, for the post part, able bodied. Not everyone can deal with what the future might hold for us MSers. I want warm, inviting and friendly. Not necessarily constantly talking about MS. just people being able to find a support network that “get it” xx

10 months ago

When I think of young people I automatically think of coffee. So maybe you could promote a coffee/tea corner to your younger MSer ‘s, maybe have some kind of healthy cookie to munch on. When my son was growing up we had a coffee hangout just a few blocks down the street. Him and his friends hung out there drinking coffee and playing music, they never got into trouble or drugs. It was a life saver for us, my son kept a small set of drums there and his friends played guitar. Potter

9 months ago

@potter I’m so sorry I missed your reply to this!

Well that’s it – the premises I’ve got has a kettle so maybe I just need to invest in some good coffee! πŸ˜‰

9 months ago

I hope something like the coffee bar works, a guitar sitting in a corner that someone could pick up and play might help. A little music helps pull the group together, the owner of the coffee bar install a web cam of the group of young people drinking coffee, talking and playing music every night. It was quite the draw he had a huge increase in business. Potter

9 months ago

Hi @gimmehopejoan! It’s great you have so much enthusiasm and support around you to start this! I also think it’s super nice that you have a centre and that they are open to allowing you to stay later. I have a Centre near where I live, and feel very lucky…

I help organise monthly drinks, and the pub always seems to go down well!! It super informal and there is a start and end time, but people can come and go depending on people’s work etc.

Otherwise, don’t know if a pub quiz style thing or something like yoga might work? Or something like a pop up?


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