Could you say what does your local branch provide, in services, social and any MS guidence etc.
What you would like a branch to provide?
Are the needs different depending on age.
My local branch meets for 2 hours once a month and the theme is bingo or quiz with a cup of tea/coffee and sasauge roll.
Any new people seam to get scared off either on the first visit with the theme or that alot of people who show up are late 70’s.
There was one time when some old lady showed up and was singing 1930 war songs to everyone for an hour.
They never organize any day outings or social events for people.
I’m not anti age and understand a branch needs to cater for all ages, I’m trying to find a solution and offer something that all people will want to visit a branch.
Also it would seam to me with newly diagnosed they not exactly warm to the idea of being part of a MS branch.
It took me 2 years to even remotely get involved this was after I stopped working.
Is social coffee or networking and having social chat sessions with other MSers more important than doing bingo?
We help out and offer chats at my local hospital about MS and what happens with our group to the newly diagnosed and they never show up at branch or attend our pub, coffee or gym sessions. So I also wonder what we are doing wrong.
Would a local branch simplified website be beneficial showing basic key information for newly diagnosed or does national cover everything.
If you want to let rip and go anon feel free, it’s the views and what everyone of all ages and walks of life would like a branch to
provide.
my local branch has ''official" meetings once a month-involves lunch and chat-approx 3 hrs.
a more informal lunch once a month on a wed. again 3 ish hrs.
a get to gether for men only-again monthly (i have not been!)
an evening catch up-again monthly.(again 3 ish hrs)
they try to plan it so that one thing happens weekly.
they are all well attended. varies from 10-30 at each get-to-gether.
7 ish years ago i started lunches in edinburgh and glasgow-again just informal. they lasted 4-5 years. i have become very disabled over past 2 years so dunno whats happening in glas/edin nowadays…
my carers take me to the wed lunches.
i think the more disabled folk are left out (when i was able and had the car i picked a couple of them up) they are the very folk that need a chat and company are not getting it. i am still in touch with many folk i have met thru mss via text cos thats the easiest way for them to communicate-its benefits us all. the ‘old’ chair used to phone members which i thought was great but some complained-which is fair enough cos we all want different things!
when arranging these things u need to be realistic-nobody may turn up depending on how they are feeling on the day-but u prob know that.
I was told by my MS nurse that my local branch meets once a month in the morning and it is mostly attended by long term more disabled MSers. Firstly, if I ever get back to work, this will be no good for me, so an evening meeting would also be useful, and secondly I love the idea of something for the newly diagnosed to meet others. I have joined the weekly swim club run by the branch with is excellent! But again when (hopefully) I go back to work I will be unable to attend. Even the MS therapy centre does nearly everything in the mornings which excludes anyone working, even part time in the mornings.
Me in all honesty would like to just talk to someone who has ms face to face as my group when i did a search on here from what i can tell is a 40 min drive or ride and has no news or meetings posted up but i am as soon as weather changes gonna make the 40 mile trip to The Merlin Centre in Cornwall so iam guessing i will meet folks there
I have never been to my local MS branch, but do get their newsletters and events that are happening.
The reason I have never been to anything is that fear of walking into an established group and the not knowing of anyone or anything on my own. (MS has taken away my confidence a bit!)
I dont know if they do a group for newly diagnosed people, but I think that would help.
Maybe every 6mnts or a year, they could hold a newly diagnosed meeting (or a ‘never been’ meeting) and give other people a chance to meet and get to know each other and encourage people to meet up again.
I’ve never been to one, but I think that’s partly because I imagine most people there to be very much worse-affected than me, and feeling I was there under false pretences. I’ve also got mixed feelings about joining a group where the only common theme is all having MS. OK, I admit that is a pretty big thing, and probably affects our lives in ways most outsiders would find pretty hard to understand. But is it enough? I wonder if I mightn’t be better joining a book club, or anything that doesn’t encourage me to dwell on my illness.
If I went to one that was anything like you describe, Hobs, I’m sure I would have run - or at least ambled - for the hills, and never been seen again. It’s not that I want to go skydiving or bungee jumping (perish the thought!), but I’m certainly not looking for bingo and reminiscing about the war. Even my mum doesn’t do those things, and she’s 73.
I’m not sure what would tempt me to give it a try. Evening meet-ups are a bit of a no-no for me anyway, as I don’t drive, and public transport tapers off woefully past 5 or 6 p.m. I might be able to get there OK, but no good if I’d be worrying how to get home.
Hi Hoba I haven’t been to my local branch for about 20 years they were really help full when I was first diagnosed with support and someone to talk too. I stopped going when I became better able to deal with it all. Information and help with the benefits system is helpful . Maybe having lunch outings in the local pub would be good .
Hi Hobs I tend to dip in and out of my local branch meetings depending on what activity is planned for that month. I first went along a few months after dx when I needed to meet others with MS as I just felt that even my supportive friends and family didn’t understand how I felt and I didn’t want to burden them too much. I have made some good friends through the local branch but, as I suspect is the case with many branches, the majority of the members are older and no longer work. They do send out a quarterly newsletter and plan the activities for a whole year ahead. The ones which are aimed at the more elderly are the ones I skip. There are coffee mornings which, of course, I can’t attend as I still work. They also offer the ‘Getting to Grips’ course which I would have liked to join a few years ago but again it was in the daytime and I didn’t feel able to ask work for time off for that when I had already had a lengthy absence due to a relapse. I suppose I would like more activities which do appeal to the under 50s (we always enjoy the cheese and wine evening and the quiz night) and more choices of evening activities. Even our Christmas dinner has been moved to a lunchtime event as this is what the majority preferred but, for me, it just doesn’t feel right having a Christmas party so early in the day. Tracey x
I haven’t been to my local branch yet, although I have thought about it. Not sure I’m ready to be that open about my MS yet. From what I’ve seen on line…it looks interesting.
I’ve joined one in Oxford that meets in the evenings or a weekend once a month, usually in a pub although they do activities too like bowling. I went on my own and they were lovely, a whole mix of people at various stages of ms and disability. It was billed as young people so was worried 44 would not qualify but they also have members in their 50s. Highly recommend joining one for support, best not to struggle alone. The coordinator contacts us by email and quite a few are Facebook friends.
after reading the replies i realise how lucky i am-the youngest member in our branch is 9.
at christmas the local mss paid for all kids-if the parents or grandparents have ms. person with ms £5 and carer normal price £9 i think.
i can understand u all being reluctant to go-its scary! epec if u dread to think that u will be as disabled in future. however, as some of u know, i am now one of the very disabled ones and it hurts me to think that i would put off new people from attending. i am still the same person i was 2 yrs ago-sense of humour intact. i like to think i can still offer support for those newly diagnosed-i do! couple of new ones last month did say that they were scared of future and i had helped them view those worries differently.
i also have many older female friends-in fact i am the baby of the group-just been invited to an 80th birthday party. their life experience tales cant be bought…! i suppose what i am saying is dont dismiss folk cos of age. perhaps a wee bit tolerance and u would soon reap the benefits. it just takes 1/2 people to change the group-and possibly for the better.
life is peppered with risks-this is a kinda safe one to try-isnt it?!
Hi, When I was first diagnosed i was desparate for someone to talk to about what was happening, and sought out my local groups. I was made to feel very welcome, but really felt it wasn’t for me. They seemed to be mainly attended by people who had stopped working and were quite badly affected by the disease. Several were in wheelchairs, and I found it a bit depressing to be honest, as if this was what was in store for me, and as I think Tina said above, I felt a bit like I was there on false pretences. I actually found the support I needed through this forum, and made a couple of good friends here who I mainly communicate with through Facebook now, as I don’t come on here so often, (great to know it’s still going strong though!) I don’t know if I would ever go back to the local group again, perhaps if my situation worsened again and I had to stop work altogether. Gilly xxx
I personally think this website has been extremely useful to me in finding out what MS is all about.
I would like to see an advancement stage style chart of how treatment can help the quality of life. This would be important for people to uderstand how they can improve their situation. Be it different medication, exercises, diet, business support, personal pride & confidence boosting activities for all the different circumstances.
Having a very young outlook on this modern world, I would personally like to use my experience in music production, graphic design, video conferenes, figurative sculpture, street dance, spray can art, landscape gardening & things that would make people with MS have a more confident outlook on life. Promoting the positives to steer away from the negatives.
A system more focused on peoples personal ability & using the experience to help improve their all around well being.
Health being the number one priotity & being able to build financial sucurity which is what we all worry about. If we can do what we enjoy to support each other & inspire others. That’s all good.
Before my MS diagnosis I planned to start a business offering a mobile music workshop that would travel to where the greatest number of people wanted the access to learning a skill & how it could help their personal life by giving inspirinal examples & ideas.
Sadly losing my driving license has thrown a spanner in the works for me but I will do what I can whilst I can.
Worrying about the future is not productive. Peace, happiness, improving health, inspiration & what it will lead too is far better.
Hi From what I can tell my local ms branch is extremely active with a club or activity running on most days Monday to Friday. Activities seem to range from a social afternoon on Thursday to yoga another day. There is also a crafts club and I think they’ve just started up itc sessions. This all sounds wonderful but unfortunately I’ve never managed to get along to any of them because they are all held during the day when I am at work. I have also been trying to get on one of the self management courses that they run periodically but again these have always been held during the day. I would like to see my local branch having occasional sessions in the evening so that those of us mser’s who are still able to work can become involved too.
I’d love to get to a group but im stuck in my house, cant even get a counsellor to do home visits so I shall sit and wait and hope that I get well enough to access support ! krissy x
My local branch has a coffee morning every week on a Thursday morning - a day that I work - and an 18 - 40 group on a monthly basis one evening - I’m 58! So I’m scuppered!! My Tysabri infusion once a month is my only opportunity to meet anyone with MS.
