EndMS Conference: Day 1

 

After a rainy trip with Via and a somewhat confused wander of the streets of Toronto (dang sense of direction), I was comfortably ensconced in my hotel and headed down to the opening session, this one called H.E.A.R. MS, meant to gather people with MS and researchers together to chat about the lived experience of people with MS and the researchers working to improve it.

The opening panel discussion featured Dr. Dalia Rotstein who told us very exciting things about research into the Epstein-Barr virus and its role in causing MS. Vaccines are in development, and perhaps this will stop new cases of MS as infection with Epstein-Barr is a necessary but not sufficient condition to cause MS. 

She also spoke about research around disability progression, how it is determined (EDSS being seen as far too blunt and outdated at this point). The researchers at our table are working on identifying biomarkers to trace progression which is exciting except I wonder what use it will be in the short term when there are so few solutions to progressive disease. In the future and working backwards from the markers they find, they may come upon a way to act upon the source.

She was very excited about the various therapies that have been developed and are being developed - B cell therapies have been very good at stopping the disease if given early on. There are new things being evaluated that cross the blood brain barrier and they are being tested right now. She also talked about digital devices that could be used to monitor progression, and the need to understand better the 'slow accumulation in the absence of relapses.'

The other speaker was Alexander Bar, a youngish man and parent of two who was felled by progressive MS a couple of years ago and who now needs a wheelchair for transport. He spoke strongly about the need for removal of red tape so we can do more drug trials here in Canada - he's going to Jerusalem for one now (thought not right now) and another in Sydney.

He also spoke about the changes in MS, how you have to evaluate the situation and yourself every day, decide what to tell the neighbours, the family. He's had to change a lot of things, telling us how MS is like playing in a sandbox that keeps getting smaller, "and all the toys are taken away."

Still, he was very positive, reminding us that although we can't control what happens to us, we can control how we respond to the changes. 

And then we all got to chat together with our table and share experiences and discuss progress. We had at our table three people with MS, all of a certain age, all of whom had had very different stories about their disease. In addition, we had two researchers from Memorial University who were looking at biomarkers, and a physiatrist resident who helps run the excellent Neurosask program from Saskatchewan. He said that there are over 300 people who sign on to one of the twice weekly sessions - have you?

All in all an exciting and friendly start to the conference. I'm looking forward to the sessions tomorrow!

Music and MS, or feeling anhedonic, anyone?

Apparently there's a term for people who don't like music. They are called "musical anhedonic" - which seems a boring and over explanatory term. Anhedonia means lack of joy or pleasure from life's experiences, and I don't think that accurately represents my feelings about music now.

In this article, Michel Faber tells us that Nabokov didn't like music, writing: 

Vladimir Nabokov reflected: “Music, I regret to say, affects me merely as an arbitrary succes­sion of more or less irritating sounds.”

That's a bit like my experience listening to music. It's an unfunny part of my MS progression that music is often completely overwhelming to me. I find myself avoiding it, which makes me sad. For years I've played instruments, sung in choirs, attended concerts. Wallowed in music over the holiday season.

Now, though, I know to be cautious. Listening to music can completely exhaust me. It makes me cry, setting off my unreliable emotional response. It makes me have an increase in symptoms, spasms, pain. It does something in my irritated brain.

I don't see this much in the MS literature, but perhaps it goes with the general overwhelmingness of much sensory input - it's like my brain acts like a clogged drain, and if there's a whole sink of stuff trying to get in, the pipes back up and eventually the water overflows. I get a similar response in crowds and if too much is going on visually around me. Even touring Cape Breton during one of its spectacular autumn displays of colour can knock me out.

It's another thing that's hard to explain to friends of the non-MS variety. I used to love going to concerts. I can attend, but I pay for this with days of recovery. Nasty recovery.

So annoying.

But I still try. I do adore the sound of a bassoon, or the trill of a piccolo or even a good bass drum line to rock me forward into action. But it's a bit like burning my hand on a stove - I know it is going to hurt me. So I pick my exposures carefully, which makes me seem like a neurotic.

Ah well. I suppose, as with chocolate, I can try small doses and adjust as I respond. Maybe I should try those new earplugs that minimize sound...but then would I hear the heart-soaring crescendos of Beethoven, the arias of Freddy Mercury, the tiny sounds at the start of songs that draw you in? Only way to know is to try, I suppose.

And at least it gives me permission to shut off "All I want for Christmas is You!" with extreme prejudice...

Alexithymia in MS - or what am I feeling, anyway?

 Big word. Confusing to pronounce. SO what is it, exactly? 

Alexithymia (/əˌlɛksɪˈθaɪmiə/ ə-LEK-sih-THY-mee-ə), also called emotional blindness, is a neuropsychological phenomenon characterized by significant challenges in recognizing, expressing, and describing one's own emotions. It is associated with difficulties in attachment and interpersonal relations.

It's common in autism, depression, and brain damage. What does it look like?

- inability to identify or describe emotions; mixing up physical sensations and emotions

- difficulty understanding how others feel

- difficulty understanding social cues

- difficulty with self-assessment and introspection

- limited creativity, imagination, and fantasies

- focus on logical and matter-of-fact thinking

From my readings, it's one of those things that are common in MS, along with failing to accurately read facial emotions. (the "mind in the eyes" test).

This explains a lot of my interactions with life. I frequently feel out of step with social cues. Ask me how I feel and I'll struggle to describe it, which makes writing a bit of a challenge. It also explains my shift from creating stories to editing them.

But where it can wreak the most havoc is in relationships with friends, family, partners. How can you be understood if you don't understand yourself? How can you understand others if you are emotion-blind?

There has been a lot of research lately into this aspect of MS, but these are largely small studies and observational - and they say things like, yes, it's linked - but there's no indication of how to work through it, how to improve your emotional view, how to explain it to your near and dear.

There is some help through the already-overtaxed autism resources, as it and autism are buddies. How do you know if you are dealing with it, especially with lack of self-introspection and ability to describe how you feel? 

Well, as you'd suspect, there are helpful online tests! It's listed as an autism test, but this does not mean you have autism, just that the brain damage caused by MS is altering your responses. I found it revealing, if a bit disconcerting. Why not check it out: 

Toronto Alexithymia Scale

If nothing else, you can take it to your health care provider or show to your family to illustrate what you are dealing with. And in terms of working on things to make relationships better, it's a good place to start. 

We can all do with a bit more self-awareness, right?

Well, at least I can.