Tuesday, 27 October 2015

living with MS (event)

from WIRMS (worms in relapsing MS) presentation mentioned below
Rather than just stating the obvious, this blog's title was the name of a really interesting information day which we went to the other week. It was organised by the MS Society in conjunction with the Neurology team at Queen's Medical Centre.

"Breaking Boundaries in MS Research" was a really fascinating talk all about the work which the MS Society is carrying out at the moment.

I know I've been a bit snarky about them in the past, but this was not only an overview of how far MS treatments have come in a relatively short period of time but also a reminder that the MS Society is (predominately) a force for good in the universe. The only issue I (and others) had was ending this section with slides about bladder issues - after an early start and drinks on arrival.

I wasn't the only person having to make his excuses before this fascinating presentation finished.

Next up was a clinical overview of the work of the Neurology team at Nottingham University - it was lovely to see all our favourite Neurologists up on stage together! It was like some kind-of wonky-nerve-themed supergroup.

The best presentation from this was about the legendary "WIRMS (worms in relapsing MS)" trial - please follow that link as this was a brilliant example of how to do a PowerPoint presentation. Aside from it being really entertaining and engaging, its main hypothesis was "Could living cleaner actually make us sicker?" - fascinating stuff.

After a brief talk about Carer Strain and the benefits of mindfulness we went off for our (very nice) lunch. Which was only marred when a lady at our table started sorting out her (CLEAN) incontinence pants - on the table, as we ate.

I know I'm a bugger for oversharing, but can we please maintain some standards, people?

The afternoon was unfortunately fairly disappointing - a presentation by two of our favourite MS nurses turned into a grumpy Q&A, which some participants treated as though they were having a "private one-to-one with their Neurologist" (attrib. a friend who was also in attendance).

I'm not denying that their issues weren't real but this completely threw the presentation off course and it overran massively.

Our next session was with the brilliant Dr Gran - he was delightfully off-message in his discussion about lifestyle. I particularly liked the way he talked about how good the MS Trust's website and resources were at an MS Society event - I know they aren't mortal enemies fighting for ultimate power but still.

We also really appreciated the way he was incredibly open about making real suggestions, in particular on the amount of Vitamin D people with MS should be taking. After saying that everyone should get tested, he explained what the different levels actually meant (it turns out that my score of 38 - which my GP said was fine - was actually borderline deficient) - his recommendation for supplements was 4,000iu.

After that, we were knackered and as all that was left was a(nother bloody) Q&A so we made our excuses. It was also really great to catch-up with a couple of people who had started on Tecfidera at the same time as me - we're all doing fine, thanks.

I've been meaning to post this for ages (the event took place nearly two weeks ago) but I would recommend visiting this page and viewing the presentations if you get a chance.

And keep an eye out for any similar events near you - there's one coming up in Northampton this weekend (on Halloween!).

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