MS Research Day is an “opportunity for people with MS and their family, friends and carers to get an update on current advice and guidance for self-management, details of what is happening in research and meet MS health care providers in an informal setting”.
Chryso Kyriacou, one of our members, went along to this year’s event at The Grange St. Paul’s Hotel in London on 14 June. She’s kindly written up her personal thoughts on the event.
It was a long day, starting at 9.30am and finishing around 4.30pm, but well organised with plenty of breaks, unlimited water and refreshments throughout the day, and a very nice two course lunch (after all it was a 5-star hotel!).
The day was structured like most conferences, with guest speakers presenting their research on different topics. These ranged from vitamin D, the bladder, and diet to information on the latest drug trials about to start and cutting edge research.
I did find that at times there was a little information overload, but as with most of these things, when it’s something that concerns you suddenly you’re more attentive. After each speaker they took questions from the floor, though they always seemed to be a little pressed for time.
I thoroughly enjoyed my day. Where else can you have eminent neurologists, MS nurses, researchers from Queens Square, UCLH, and Barts and the London, together with representatives from the MS Trust and MS Society, all in one hall where you can speak to them all? They were all quite willing to be approached.
I collected the odd free publication from the MS Trust and MS Society that was of interest to me.
Two websites mentioned which I have looked at and think will be of interest to all of us are:
- Digesting Science: this is an educational course and website for children aged 6-12 with a parent with MS.
Don’t think, “My children are older, this is not for me.” I found this website suitable for anyone of any age. It was simple, clear and very informative. It made the science really digestible I think anybody of any age who knows someone with MS would find the way things are explained on this site really helpful. It covers everything from “What is MS?” to “How is it treated?”.
Multiple Sclerosis Research: this blog’s aim is to update you on the latest research in MS.
Dr Gavin Giovannoni from Barts and the London told me that everything that happens in the field of MS research will be posted here on this site first. It gives information on all the current trials. Being a blog you can leave comments and surprisingly some important people comment back. This website is not for the faint hearted they tell it like it is!
I have been informed that links to the presentations given and a DVD will be available. We’ll post the links on the Harrow MS Therapy Centre website when they’re received.
I am wheelchair bound and need to use a hoist, so you may be thinking how I managed with going to the toilet. Well I did have to limit my fluid intake considerably, though I have to say they gave a great deal of consideration to the toilet needs of the MSers — having comfort breaks and frames in the toilets. When I attend next year I will arrange to go with my local MS minibus and take my Molift (which I am willing to share if this is the reason you didn’t go!).
Yes, I would have liked to hear a fairy tale ending — alas! I think we all know that is some years away. But there could be something around that could be helping you, so it’s important we attend these research days so we know exactly what’s out there, then we can set about getting hold of some.