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She also spoke about research around disability progression, how it is determined (EDSS being seen as far too blunt and outdated at this point).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.

The uncaring health care system, or why neurologists seem so unsympathetic

I know, I know. We've all heard the stories about neurologists who treat their patients like objects of no interest, who never seem to take your pains and troubles seriously, who are in and out of the clinic room in 2.2 milliseconds.

They seem to be everywhere.

I used to get all hurt by their reaction, too - I'd leave muttering and cross at the world and hating the neuro in particular. Of course, I was going to one of the top neurologists in the country (and he knows it), and was profoundly uninteresting to him as I was still walking and talking.

In my mind I was degrading by the minute. But then, he wasn't evaluating my cognitive abilities or my depression. He was only interested in my walking. Which was something I didn't understand until I looked into MS studies and found that, at that time, that was the only assessment routinely done. (this is changing, thanks to Bart's MS save the hand focus).

But I've been ten years with this disease and I've gained some perspective. And some sympathy for the neurologists. (Not for my one from before - he truly IS an ass, and some are) I've worked with neurologists on projects, I've participated in research, I've made my own panicked calls to the clinic begging for help. What I've discovered is that they are an interesting and interested group of individuals who really do have a dismal job. Most of their patients do not get better.

Brain injuries don't tend to get better. They progress (in MS, Parkinson's, Alzheimer's, Huntington's, etc etc). Doctors (and MS Nurses) are supporting a crumbling wall, catching the biggest falling stones, having to let the smaller ones tumble.

When I was first diagnosed, I must have called my MS nurse a zillion times. I would have a symptom, it would bother me, so I'd call. "My foot is in a spasm and it hurts". "Yes, that happens," she'd say. "I'm completely numb on my right side". "Yes, that happens," she said. "My vision is all blurry!" "Yes..." And on and on.

God bless her, she never said, "Would you please stop bothering me? I have real sick people to talk to!" Because she did. The people who were paralyzed, who couldn't swallow food, who had horrible kidney infections after storing urine for weeks, people who had gone blind with optic neuritis. People who were truly suffering, as vs me, who was being BOTHERED.

Symptoms are awful, painful, exhausting, depressing. I hate it when I can't see properly. I grieve when I can't pee or pee when I shouldn't. I live in total fear of fecal incontinence. I miss being able to feel things.

https://www.mstrust.org.uk/research/research-updates/update130313-longer-lasting-sight-problems-ms-how-common-are-they

But hey, I'm also getting older. Maybe my blurring vision is due to cataracts. Maybe those aches and pains are because I've lazily sitting about instead of exercising.

Or maybe they are signs of my MS progressing. Truth is, there isn't a whole lot that can be done about that bit. Yes, medications - the disease modifying ones - and we should all be taking something like that. Vitamin D - yep. Antispasm drugs. Medical Cannabis. etc. But truth be told, other than the disease modifiers and Vitamin D, nothing will stop this train we're on. Yet.

We can adjust the pillows or ask for a warm blanket, but it's really up to us to try to make ourselves better. Rest, exercise, stretch (whatever parts you can). Eat as well as you can. Avoid salt. Enjoy life as much as possible. Rest. Laugh. Like most chronic diseases, MS is up to us to manage. We have to take responsibility for a lot of it.

And leave the neurologists time to see those who are being consumed by galloping MS, who are dealing with people dangling on the knife blade of serious progression. Leave them time to do research, to find a cure for this dratted thing.

It's terrifying to take responsibility for your "itching swelling brain," and I don't mean to discourage anyone from checking to be sure a flare-up isn't something more serious. Lately I've called when I couldn't pee, and when I lost myself for an hour and felt panicked. (also a pee issue - a urinary tract infection). Both times I got an immediate caring response that dealt with the issue. I don't call when I'm in pain, or tired, or can't read well anymore. With perspective, I know that if I stretch, drink more water, rest, move, this will likely pass, and if not, there probably isn't a solution. (yet) And I whine to my MS support group and they whine to me and we understand each other.

Life sucks. MS sucks more. So does diabetes, arthritis, cancer, etc. We aren't the only ones who deal with stuff on a daily basis. Sometimes we just have to bite the bullet and suffer in silence.

What do you think? Let me know in the comments!

Sex and disability - yes yes yes!

A lovely series about sex and disability - check it out!

http://www.scarleteen.com/article/sexuality/disabled_sex_yes

An excerpt:

There is nothing wrong with disabled sexuality

Disabled sexuality is very stigmatized in many cultures, and there are a lot of reasons why, some of which start with the belief that disabled people are "innocent" and need to be protected from the big bad world. You may have encountered attitudes suggesting that disabled people who have sex are freaky or weird, and that disabled people only have sex when there's a fetish involved. That's not true — lots of disabled people actually have super mundane sex lives, while others are total kinksters, some of whom are even part of the fetish community, but often their fetishes have nothing to do with disability!

Consensual, joyful sexuality isn't wrong or weird or gross or freaky, even if your body doesn't always do what you want it to do or your brain likes to fight you and even if other people want to desexualize you because of your impairment. The only people who should be ashamed of themselves are the ones who think they can dictate what your sexuality looks like because they make assumptions about you on the basis of how your body and brain function.

In fact, there's also something very right about it. Sometimes adaptations that make sex more accessible, fun, and empowering work to your advantage — like being more conscious about communication and taking advantage of props to get comfortable before you get down for sexytimes.

The site talks about many aspects of sexuality, including masturbation and toys, safety and consent, and especially, cognitive issues and sexual relationships.

http://www.scarleteen.com/sex_on_the_brain_sex_and_autism_mental_illness_and_other_cognitive_diversity

It's not specifically about MS, but a lot of the issues could apply. Check it out. It's an easy read, and as far as I can tell, full of good info!

Sexual dysfunction, anorgasmia, and missing the boat entirely

You have got to love a disease that gradually takes away all your fun. It's a darn good thing we MSers have a sense of humour, or we'd give up in despair.

So you've lost the pleasure of a long hike in the mountains, or the joy of marshmallowing in hot tubs. You can't even sit long without cramping and you love a good drink but hate the subsequent smell of pee as your bladder misbehaves.

Coffee may be your best friend when at home, and your enemy when out, unless you locate yourself next to a bathroom. Your vision - well, we won't go there as I am terminally depressed about mine.

I used to joke about my fatigue and dating - that I'd go out on a date and be overwhelmed with making conversation, so I'd bring the fellow home, and then I'd be so tired I had to lie down. Somehow the guys ALWAYS got the wrong impression...

But now even that sinful pleasure has left the building. Sex can be exhausting, and overwhelming to sensations. One of my more perceptive dates (god love his furry little hide) noticed that I was in pain after sex if I didn't orgasm. (Note: no one else has ever seemed to notice or care - and of course I am battling exhaustion so don't demand as I should)

But that isn't often easy for we MSers, either. Not only are our sensations all over the place, missing, or twisted, but we don't get to the end point as often as we'd like. I liken it to lighting a firecracker and then having it just burn down, with no explosion. The firecracker is burned out, but still full of unexpended gunpowder, and sparks that fire in places they shouldn't.

Tuppy Owens, founder of the Outsiders Club in the UK, is a proponent of sexual workers being able to help those of us with handicaps in this area. These sex workers are not prostitutes but essentially perform a similar service, spending time in a sexual way with disabled people. Unfortunately, this service is not available in Canada - it's still illegal to purchase these kinds of services, no matter the medical need. I suspect this is because we are still under the conservative thinking that sex is not necessary for survival or health. And/or that disabled people wanting sex is just creepy. I think that is wrong-headed, discriminatory, and hurtful.

I know people who have lost "normal" sensations for whom touching an ear can be thrilling. Other more intimate touches may 'work' after the body is turned on with focus elsewhere.

But what about those who are immobilized, who can't share physical sensations with their partners, who don't know how to please each other in a changed situation?

So that's why I'm working on my book. It's not that I live for sex or are terribly focused on it - it's that I know what it's like to lose a bit of it, and I know how it affects me. So few people with disabilities get touched in any other than a helper way. It's wrong. Touch is important to everyone, disabled or not...and sexual or not.

So I toil away, with my  unhelpful MS brain dragging behind my wishes to get it complete.

In the meantime, I've found a site for people with spinal cord injuries (which we often are - I find it helpful to think of MS as acquired brain damage and spinal cord injury) that provides information about many aspects of intimacy with this condition. Please visit and tell me what you think. Is it enough to be told these things, or do you wish for access to sexual surrogates (not me, I hasten to add) here in Canada? And why is it that all of these sites focus almost exclusively on male erection and ejaculation and so little on women, other than mentioning lubrication? Sheesh. Apparently we are again simple receptacles.

Here it is, from Vancouver, of course, from their spinal cord program: http://scisexualhealth.ca/sexuality-201-sci/

They also have a lovely booklet that talks about devices that can be used for different abilities. Once again, there is a greater focus on aids to men, but the information is adaptable:
Pleasurable: Sexual Device Manual for People with Disabilities
What I like about this one is that it breaks down toys by where you need help (hand strength, positioning, etc) and includes a section on devices that can be applied by caregivers and left in place while you have some privacy...

 'There's nothing you can't do if you set your mind to it. Nothing is impossible." Rick Hansen


Have a look, have fun, and let me know what you think!

Being bipolar with MS

I'm not really bipolar, at least I don't think so, but there's this thing that happens to me sometimes, where I am busy and suddenly my fingers type very fast and I kind of go into a fugue state where I flow through my day without actually being part of it. 

The next day, I am overwhelmed with the blues and a feeling of insignificance and the urge to abandon hope and flee to somewhere, anywhere, where I can be alone with my thoughts.

It's not a good time to read books talking about suicide at those times.

Now that I know that this happens, fairly regularly, I try to ignore it and carry on, knowing that I will be better soon, after a bit of rest and accomplishing some things and yadda yadda.

Yesterday was one of my spin days. I wrote in the morning, volunteered in the afternoon, went to a talk in the evening. I don't believe I was truly present for much of the day, covered over with wax paper mentally, feeling separate from my environment. And then the evening session I went to I couldn't shut up at, despite my telling myself to.

Sounds pretty manic to me. Home and tossing and turning all night (to be fair, my sick cat was to blame for much of that), and now today I am on the edge of tears and just wah wahing to myself.

It happens fairly often, this rapid change. When you feel physically good with MS, you feel as if you are on speed. You can DO things, the fatigue is eased for a moment, you don't feel as if you are going to collapse into a narcoleptic pile at any moment. You can physically sit for a bit and NOT fall asleep. It's a rush.

So off you spring like a bunny rabbit and you do many more things than you are used to in a day and then huzzah, you pay for it with tired neurons and a post accomplishment hangover.
People tell me to pace myself, etc etc, but if I lived my whole life according to my bad days I truly would give up. I have to have hope that something will turn out right, sometime, that the me that is inside can still struggle through the wax paper and interact.

The more I find myself being inappropriate during my up days, though, the more I think I should stay away from people. Which isn't a good thing.

Time, I foresee, to get some help...again...or maybe I am overmedicated....