Anyone attended a Getting to Grips with MS Course?

Everyday living
1

I have received an invitation to a “Getting to Grips with MS” Course for the newly diagnosed. Just wondered if anyone had attended one of these before? When I first read the letter, I broke down in tears and thought there’s no way I would attend, but now having second thoughts.

Did you find it helpful and what did it involve?

It is run over 5 weeks and have to say how many sessions I’m attending, but it’s difficult to say when I don’t know anything about it. Also says to bring your partner, family and friends, but if I go, I think I’d feel better going alone.

Thanks

Fizzy xx

2

Hi fizzy I attended a course for newly diagnosed but it was an all day course. I wasnt keen on going as at that point i didnt want to know too much about m.s however i took a friend of mine and it was a really good way to get an insight into m.s without being bombarded. It also concentrated on the positives of research rather than the negatives of living with m.s. It also made me feel that im not alone with m.s and people of all ages male and female were there with a wide variety of symptoms. Also it was useful for knowing your employment rights, meeting your m.s nurses if you havent, im glad i went as i now have a bit of knowledge about m.s but its all based on creditable evidence

3

Hi Fizzy, I attended a course with the same title last year only it was run over a full day. I had only been diagnosed for one month. I went with my husband and we both felt that it was a very helpful course. There was a talk by a Consultant Neurologist which covered the different treatments, an MS nurse who gave us info on managing relapses, a neurophysiotherapist, an MS patient, the MS society…it was all very positive and informative. It didn’t upset us and I felt more in control after being on this course. Also there was plenty of useful free publications to take away. I’m sure you will benefit from attending. It seemed to me there was something for everyone. Best wishes, RedShoes

4

Hi,

Thanks for your replies. I have decided that I will go to the first one, to see if it is my kind of thing or not and I can also find out what will be happening at the next sessions.

I’m quite looking forward to it, now I’ve made my decision!

Thanks

Fizzy xx

5

Hi Fizzy,

I remember being offered that and turning it down, as it was one day a week for five or six weeks, like yours, so it was totally impractical for anyone who works - I was still working full-time at that time. I didn’t ask work, but get turned down - I just didn’t even bother asking. I think they would have looked on it more favourably if it had been a solid week, because at least that’s only one week, and not dissimilar to the person being on holiday. But to be missing a day a week for five or six weeks in a row is more disruptive. And I felt I would still have the same amount of work to get through, so would find myself trying to do five days’ work in four, for each week of the course. Not very well thought out, for anyone who might still be working.

I do sometimes wonder if I missed out by not going, though. Luckily, I am well able to research on my own, so I probably didn’t miss out in terms of information. But nobody ever explained DMDs to me face-to-face - I was just given a pamphlet to take away and read. Neither was I ever assigned an MS nurse. I’m not sure if it was because I didn’t go on the course that these things never happened - whether it was all assumed to be dealt with then. But I also transferred from BUPA to the NHS. That should have been pretty seamless, as I kept the same neuro (he works in both), but somehow, everybody presumed somebody else had done things, when in fact, none of them had.

Yes, I was lucky that I had the internet, had been taught how to research in the past, and could tell the difference between reputable and dubious sources of information. But if I’d been someone who didn’t have any education, or internet access at home, or any of that, I think it would have been absolutely appalling to just hand me a leaflet, and that was DMDs covered!

I’d like to think they judge it on the individual patient, and were satisfied I’d be fine with just a leaflet, and able to raise questions if I needed to. BUT, it’s a very big assumption, when they don’t know the patient well. Is everybody given just a leaflet, or was I supposed to get more, but didn’t? And was it my own fault for not going one the course? As not everyone will either want or be able to go on it, shouldn’t there be an alternative mechanism, to ensure they’re not left unclear what the procedure is if they think they’re having a relapse, for example?

Tina

6

Hi Fizzy

Now you’ve made your decision I really hope you get a lot out of the course. I went to one which, like yours, was over 5 weeks and was held in early evenings so it didn’t impact on work. There were about 20 of us with around 10 being newly diagnosed and the rest being partners or friends. The first session everyone was a little nervous so you won’t be alone, in fact getting together with people in the same boat as me was one of the best things about the sessions. Most people had partners or friends with them, probably for moral support initially. It was also good to have someone to talk to during the week following each evening. For our course we began by separating out into newly diagnosed and partners/friends and we all thought about what our worries were. It was great to find these worries were shared and my partner also found it helpful: sometimes MS is something that happens to them too, just not as physically.

Our neuro and local MS Nurse came to one of our sessions which was really interesting whilst a lot of emphasis was placed on general support options for people with MS in the area.

I do know that some people don’t want to attend courses such as this: it makes the MS diagnosis seem all a bit too “real” to them. For me it was one of the best things I did after getting the initial news of my diagnosis. I hope you find it beneficial too. Do report back for us!

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I went to one, whilst the classes were very informative, the best ting i found was interacting with others on the couse. It nice to know the things you experience don’t just happen to you, nice way to meet others