kelics 04/01/18
Last reply 3 months ago
Young persons MS community

Ive been looking for a community for young people who r suffering the same fate as myself for quite a while. I have looked on google but yet nothing comes up. Out of most of the people i met with MS all of them 40 50 60 70 all have jobs families, children, grand children , houses whaever, i have absolutely nothing in common with them apart from we have similar symptoms. I cant belive there isnt a single community where young people with similar diagnosis, can meet up, talk about how difficult life is , support each other, get few drinks, and DONT FEEL ISOLATED!! I met couple of guys similar age, but i think they have their own problems so never actually met any of them.

I use a crutch now, i hardly go out anywhere, i dont want people to look differently on me, anywhere i go im just the odd one. Am i the only one in this bloody world who wants to interact with similar age, similar con people to escape that lonelyness and isolation ??? Helloooooo, is anyone there ???

Fair enough here is a forum where people asks questions and get answers. would u not rather meet someone in person and ask these questions ? Where r the meets ?

Im actually thinking of setting up a young persons facebook ms page where people actually get to meet each other , talk, socialise, and dont feel isolated!

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jade770
3 months ago

I think the Facebook group is a really good idea , Iโ€™ve only seen a couple of people of our kind of age group on here , anything we can do to help people who feel isolated or maybe just need somewhere to talk about things with people who can relate and understand is a great thing. X


stephz
3 months ago

@kelics Look out for the next MS sessions event – the 1st one was held in Prague in Nov 17 and it was for people with MS under the age of 40. It was an amazing event and it looks like little sub-groups are forming and people are planning events to meet up again aimed at young(er) people with MS.

There is also the opportunity for you to arrange a meet up through your local society asking to help prmote the event or using Twitter & FB. The new shift.ms map tool might help you find people in your area. We are having a get together on the 20th January in Edinburgh and a friend is organisisng one for London in February. Not sure what other locations will have similar events this year as we are organising these ourselves


stumbler
3 months ago

@kelics , the absence of an adequate support network for the “younger demographic” was the driving force behind the formation of this forum.

The forum itself has an appeal to younger folk, but a lot of our younger membership is transient. Support is needed pre and post-diagnosis to come to terms with MS. When their acceptance is acquired, members can go off and live their lives, with no further need for the Forum – until the next MS crisis.

Now, that’s OK. Shift makes no demands of their members. The Forum is here when it’s needed. Members are free to come and go as they please.

Hence the ongoing problem that you’re experiencing.

You’re looking for a social environment for young MSers, whereas the attitude is “we have MS, MS does not have us”. Possibly, there is little demand for an exclusive MSers club. If there is, the transience of members would still be an issue.

Try the Facebook Group approach and see if there’s a local appetite for an exclusive MSers club. It sounds like a good approach. There are 14 Shift members around the Aberdeen area (from those members that have share their location).

You could also try and enlist the help of your MS Nurse to engender support.

Would another answer be to explore the general social scene, rather than restrict yourself to an “MSers only club”? You are more than your MS, which is just a small part of your character. It could be an interesting talking point to raise awareness of MS.


stephz
3 months ago

Having an MSer club as you call it @stumbler can be a way to start getting more social and finding the strength to interact with others more. I’m quite active in sports groups etc but having attended MS sessions I can see the benefit of meeting up regularly with youg MSers – we didn’t spend the weekend talking about MS – we all knew that’s why were there but it was nice not having to explain why you needed a seat, go to bed early or needed to ask the waiter about the food. Having this common ground and experience can make a huge difference. I’m looking forward to meeting up with the people I met in Prague and I’m not sure I would have met them otherwise – since I agree with @kelics that the younger people don’t tend to go to the MS society events as they are mostly attended by older people with MS.


stumbler
3 months ago

It’s an interesting subject.

The reason that MS Society events have their “older” attendance is due to the fact that this demographic has reached a stage in their life where this kind of social gathering appeals. They have the time, as their working lives may be over, and they have space in their lives.

I can truly see the appeal of getting a group of young MSers together. However, there is still the issue of transience. Young MSers can progress through a normal life too and amass responsibilities and demands on their time. Their social requirements are constantly changing.

Yes, MS Sessions was a huge success. I wish it had been available when I was younger. I’m sure it will move forward as the demand is there. But, even so, its attendees will be fluid.


kelics
3 months ago

@stephz i would have attended that event, but i dont have a job (not sure if i ever have), and these type of trip require some investment which in my case i cant afford at the minute. But thanks for mentioning Edinburgh event. I definitely look in to that!


stephz
3 months ago

@kelics No worries – I don’t remember if anyone from Aberdeen attended MS sessions but I will ask the group. The travel and accommodation costs + 2 lunches and 1 dinner were fully covered for this event – only required money for 2 dinners & drinks – so maybe you consider attending the next one. The MS society also has grants available – I think a trip like this would fall under the health & wellbeing grant as it is beneficcial to your mental health etc Have a look here: https://www.mssociety.org.uk/apply-health-and-wellbeing-grant You can always email them to find out more


kelics
3 months ago

@stumbler i agree with u about this forum, it does look like it has a lot of younger people, but as u said they come and go, there is no tight connection between members, talking to someone on the internet isnt the same as talking to someone in real life. And yea i agree, people get an answer to their question and bail until the next crisis, in my case crisis is everyday as my condition is constant progression without any chance to feel better.
I could easily contribute to this forum to try and get people to meet each other, just tell me what to do and ill do it.

Well, ms is small part of ur life ? It stole everything from me, well about 90%, the life i had before… joyful, precious, limitless, happy, adventurous, goal driven, active, social, full of dreams, and whats left of it now ? Acceptance is a key. Im struggling with it because i know how limitless life feels like… and i think meeting people who r similar to u can help with that.

But yea i think im going to start with facebook and see how that will work out, atleast i found myself a purpose ๐Ÿ™‚


cherish
3 months ago

@kelics

There’s still an on going meet up at Sue Ryder Kincorth Aberdeen.
It’s called 5r’s. Complimentary therapies, art, writing, Pilates, Tai chi, eating cake, acting daft etc etc ๐Ÿ˜‚

It’s every Tuesday for 10wks.

It’s a group of 10 ppl.
Now I can’t guarantee that everybody will be young. The twice I have done it there has been some younger than me and some older. I’m 46.

Even if there’s just 1 or 2 your age, they know other young ones with MS and then go on to arrange meetups when the group finished.

Maybe worth a go?


islandgal
3 months ago

Hey kelics.i understand your post .tbh i find where i am ..isle of wight ..theres nothing for younger ms ers either .iv asked ms nurse and there had been talk of it but never no more. The iow ms society does have a group to go do stuff and meals or events but sadly theyre all older and most on scooters , I’m not there yet! and for me not on my wave length.
Someone over here said even parkinson society has a younger group who can get together but iv not got the cognitive side to chase and look into try starting up an ms one.but it does help to meet up with similar folk and to have that social side of things but im isolated on an island. People are younger on here but do come n go or just dont keep up with messaging if its gone that way .i mean …why ask for a friendship request if your never gona contact that person? I dont see the point .im not a fb person myself although thats good to contact fellow ms ers i think.anyway stay well ..ish and keep ๐Ÿ˜Š


stumbler
3 months ago

@cherish is right. If we want something to happen, then we have to do it ourselves.

@islandgal , there are 5 Shift members, who are “Islanders”, from those that have divulged their location.

I share your comments about Facebook, which started the trend of amassing Friends. It’s like a Badge of Honour, to show how many Friends you have. Even though you don’t know who most of them are!

It’s almost as childish as Trump and Kim Jong Un, engaged in their own willy-waving competition! ๐Ÿ˜‰


islandgal
3 months ago

Very funny oracle lol.
I did look a while back on iow shifters when going on the map but some hadnt even used this site in a v long time. Need to look again
5 people on iow ,holy crap …im so spoilt arent i!!
Maybe shift should give out awards to the most number of accumulated friends
That never speak, on here ๐Ÿ˜‰


stumbler
3 months ago

@islandgal , we have the transient members, who haven’t needed Shift lately. But remember, we all still have MS.

These members may want some local face-to-face peer support……………


nutshell88
3 months ago

In Saudi Arabia most MS patients are 25 and less. I was daignosed age 17 and Iโ€™ll be 30 on April this year. And youโ€™re right ms changed most of my life character even looks kinda but never stubbornness hehe.

I Hope you find what youโ€™re looking for


rachaellouise
3 months ago

@nutshell88 – the big 30 ! ๐Ÿ˜Š and itโ€™s in April . My birthday is also in April! What date is yours ? Aries girl ?
Xx


bubbly85
3 months ago

Hello kelics, I can totally understand what you are saying cause I was having the same problems. I was diagnosed at 17 and never saw anyone with ms the same age as me but since I’ve come on shift ms I’ve met a lot of people similar age group.


nutshell88
3 months ago

Hehe 14 โ˜บ๏ธ๐Ÿ’” i aged @rachaellouise what about you? x


kelics
3 months ago

@cherish its a great place, i have attended it and really liked it, however everyone there is much older.


kelics
3 months ago

Im going to open a UK facebook group for young sufferers. Maybe make a generic group not just ms but other neuro problems as well. Not sure how its going to develop, will it have lots of members or just a failed project i dunno that, but its worth a try. Like @stumbler said: if ur not going to do it urself, no one else will. I just going to talk to some people about it and hopefully it will work out well. Wish me luck ๐Ÿ˜€


stumbler
3 months ago

@kelics , do let the local MS Nurse know about it, so they can spread its existence around.


rachaellouise
3 months ago

@nutshell88 – my bitthday is the 4th April. Iโ€™m older than you ! So your not that old! Unless you tell me I am ๐Ÿ˜‚
What have you planned for your 30th birthday party ?

XX


lm12463
3 months ago

@kelics I would be interested in getting involved with a Facebook group.
I have the same feelings that everyone at support groups locally are older and at a stage with their ms that I hope takes me a while to get to.
I think when you have been living with something for years it is different. And honestly a lot of the time I don’t want to look into my future and see what might happen to me.


nutshell88
3 months ago

Lol you reminded me of my uni and time when i was in uk years. @raechellouice
A worker in here in saudi gave me an IS with wrong birthdate it was 4/41988 some friends in saudi and uk used to tell me what a unique birthdate things like that i was almost sure its 14 not 4 so when i came back from the uk i looked for my birth certifucate and made sure its 14 ๐Ÿ˜‚
So Iโ€™ll tell you happy birthday first Reachellouise ๐Ÿ™‚


stumbler
3 months ago

@lm12463 , I can understand your point of view. But, do consider that “their future” and your future are two different prospects.

The older MSer has not had the benefit of all the advances in medical science that are now available. So, I would hope that your prognosis is a lot more encouraging.

But, don’t discount that these older MSers have experienced a raft of problems and you may be able to benefit from some of this experience.


kelics
3 months ago

@lm12463 thanks for supporting this :). I will make a private group and will share its existence, just need to think through couple of the things


kelics
3 months ago

@stumbler well, its 2017, im 28 years old, already need to use a crutch. Is there anything from progressive ms ? I dont think so. The stem cell treatment sounds promising, but its a lot of money to gamble with


lm12463
3 months ago

@stumbler I agree the medical advances are great. And yes prognosis will be completely different for each person. I suppose personally I’m not ready to see what might happen. Saying that the experience of people on here and understanding things better is also so valuable.

I’m 32 and only diagnosed nearly 2 years, I have been fortunate that my MS has been very mild. However I am now struggling and medication is being discussed which has completely floored me if I’m honest. I’m now falling and struggling at work.

Even the thought of medication which is to help is frightening now. Others experiences are very helpful but it would be nice to have people my own age at the same life stage to talk to.


doubleo7hud
3 months ago

@kelics set up that face ache page matey and let me know when itโ€™s ready and Iโ€™m in but at 32 am I classed as a old fart? Bloody feel like one walk like a little old lady, iv got a stick too that I should use but Iโ€™m a stubborn fecker and like to struggle on. Thatโ€™s one thing that makes me sh1t itch too the walking sticks look shite. Added thee as a pal


kelics
3 months ago

@doubleo7hub โ€œfeckerโ€ haha i like that. Ur Irish ? Yes im creating the group 100%. And i will make a post once its done. As long as ur young in ur mind, im not going to reject anyone regardless of their age but the main point of this page will be to unite those young individuals who feel isolated and lonely because of their condition. I really look forward to it i just hope it works out well

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