Goodbye Aubagio, Hello CSIL

This week was quite the week for my MS. I thought I would catch up on some of the changes and my thoughts behind it.
For the last month, my MS has been getting worse. I don’t know whether it’s progressed, I don’t whether this is my “new normal”, I don’t know whether it’s a reaction to something, or whether it’s just have a temper tantrum!

For the last month, the trigger to set of my “motherboard overload” – where my speech and movement goes – has been getting less and less, to the point where there haven’t been any triggers. I’ve had periods, at 48 hours at a time, where Ian has had to do every transfer for me. It’s very annoying. It’s another loss of independence for me and it also means that Ian is tied to me constantly – not good for either of us.

Skip this paragraph if you don’t want the TMI (Too Much Information). One night Ian went into the hot tub for his usual soak. I felt fine and I wanted to go to the loo. So I transferred myself and off I went. And then the overload thing kicked in and I was stuck there…for 30 minutes until Ian got out of the hot tub!!!

Last Sunday I started get some symptoms that could be peripheral neuropathy (which is tingling, “buzzing”, pins and needles, numbness) in my hands and feet, and that could be a side effect of Aubagio. But do they sound familiar? Yup. They’re all MS “feelings” too.

After an email exchange with my neuro, we decided that I should stop taking Aubagio for awhile to see if the drug is causing these problems. The problem with that is I’m pretty much out of DMD (Disease Modifying Drug) options until the next wonder drug is on the market – and for the one that’s most promising for me, that could be a year.

A year in which my relapsing MS could start playing up, never mind the progressing bit. That’s a scary thought.

We will see what happens. A week in and the stomach ache that I’ve had for 10 weeks has gone, but that’s not enough to make me stop taking it. And neither is the huge hair loss I’ve had – it’s only hair!

Fast forward to Friday, and I found out that I had been successful in my CSIL application. CSIL stands for Choices in Support for Independent Living. Here’s a brief description from Spinal Cord Injury BC who have worked with Interior Health to put together a great workbook, to support people through their application and being an employer:

Choice in Supports for Independent Living (CSIL)—pronounced “SEE-sul”—is an alternative way for people with disabilities in BC to receive home support services. The goal of CSIL is to provide more choice and flexibility to people with disabilities who have high-intensity care needs. CSIL employers receive funds to purchase their own home support services; they are responsible for recruiting, hiring, training, scheduling and supervising their own home support workers. Under CSIL, the person with the disability assumes the role of an employer with all of the rights and responsibilities that involves.

It really couldn’t have come at a better time. Like all things that have happened to me with MS, it seems that when I apply for something it seems like it’s something I could use, but when I actually get it, I need it!

Now the process starts to open a bank account, register with the CRA, think about what I want someone to do, write an ad and find someone!

I’m looking forward to it, but it’s a massive adjustment for both Ian and I. Come on – who really wants to admit they have to employ someone to take them to the loo and to dress them?!? But hey, if this is what needs to happen, so be it. I just know the first line of the application already..

MUST LIKE DOGS!

Deefer's fluffy face 

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Use your words – and hopefully we will endMS!

I have a stomach ache. In August I started Aubagio and, a couple of weeks in, this stomach ache started. I went to my GP and of course I was asked to describe it.

Let’s put aside, for the moment, that one of my MS symptoms causes me to lose words. Let’s go with this doctor’s visit being on a “good” day.

“It’s this background noise most of the time, a grumbling, a tenderness, it’s something that’s enough to knock me off my stride. Then occasionally there’s these cramps. They’re sharp jabs. Knife stabs…. I’m still not sure I’ve described it correctly…”

“Okay… Perhaps we could start with you telling me where the pain is?!?”
And this is nothing compared to a trip to see my neurologist.

Let’s think of some of the descriptions that are commonly used during a neurological exam.

Tinglings. Pins and needles. Numbness. Ants walking on our skin. 

I often wonder if what I think is “pins and needles” is someone else’s “tingling”. And when I get that wooden feeling, (like my foot is a solid lump of wood…) is that numbness? How can we know that we are using the same descriptive language as the next person?

When asked to describe the pains in my legs I usually say “one type of pain feels like someone is wringing my muscles out like a damp dish cloth, and there’s another that feels like someone has poured boiling oil on my legs.”

Over dramatic? Moi?

But I suppose that’s better than when my neurologist touches one leg and then the other and asks me to compare how it feels.

“Different.” “Can you describe it anymore than that?” “Just… different… ”

Great feedback, Michelle. I’m sure that furthers the fight against MS immensely.

In order to accurately diagnose my symptoms, my neurologist has to take in these varied comments, perhaps even considering that my inability to describe the differences in the sensations in my legs is a symptom in itself, and distil it into something that makes sense in a medical context. Art meets science. An art in itself?
A former student of mine, and now a wonderful Facebook friend, Jaime Brenes Reyes, is a PhD student, studying Comparative Literature. Jaime also writes openly about his own experiences with seizures and his PhD research is looking at the links between Latin American short stories and seizures in the brain’s response to them both. Very cool, eh?

Through his research, Jaime introduced me to Narrative Medicine and the work of Dr Rita Charon, who is the Executive Director in the Program of Narrative Medicine at Columbia University.Jaime says that “Charon advocates a holistic relationship model between doctor and patient. For Charon, doctors need to listen carefully to patients’ stories in order to gain a better understanding of the conditions surrounding the disease.” 

In her book, Narrative Medicine: Honoring the Stories of Illness (2006), Charon says “It is sometimes as if the body speaks a foreign language, relying on bilingual others to translate, interpret, or in some way make transparent what it means to say”. For me, that absolutely hits the nail on the head! I have to be bilingual to translate my body to my medical team.

It seems to me that if we are to learn everything we can about MS, we must be able to “translate” everything that people with MS are telling their medical team. In turn, the medical team must be able to combine any evidence gleaned from MRIs and other quantitive tests with this very important qualitative information. MS is a disease where very little can be measure. No blood tests. MRIs only show part of the picture.

So the next time you see a doctor make sure that you “use your words” = and I hope that they have the skills to listen to them and realise their importance.