New Year, A New Hope

In December I created a photoblog of my trip to my neurologist. I haven’t followed that with a post explaining what happened in my appointment because it’s taken me some time to process it – and I think I’m ready to share.
The end of the year signalled the end of taking Aubagio for me, and also the end of DMDs for me. Aubagio is a Disease Modifying Drug – a DMD – and these are the drugs that try to stop relapses from happening. Unfortunately, I had a whole host of side effects from it and my MS got a whole lot worse. The only thing to be done was to stop Aubagio- and that was the last DMD left for me to try. Thankfully stopping the drug has made me feel somewhat better as most of the side effects have gone now, but for a time it was a scary precursor of things possibly to come.

Here’s the deal. I have both types of MS – the relapsing type and the progressing type – something that happens to around 5% of people with MS. The DMDs I have taken over the last 7 years seem to have done their job at keeping the relapses at bay, but now there’s no more DMDs for me. I have tried them all, and, for one reason or another, had to stop them all. Now I have no protection for that part of my MS, which brings the concern that the relapses could return unchecked. And for the other part? Currently there is no treatment for progressive MS. So as it stands today, I’m not taking any medication or treatment for either type of my MS. You can probably see why it’s taken me some time to process it. It’s all a bit depressing, it’s all a bit scary.

I also got approved for CSIL in December, which is the program that provides funds for independent living – in simple terms, gives me the money to employ some home support. But that means I have to face up to the fact that I need help – and Ian deserves a break from looking after me while knowing that I’m safe. Nothing makes you face up to it all like having to write in a job description that you need help dressing, and transferring off the loo, and having a shower. It’s all a bit depressing, it’s all a bit scary.

Which brings me to the New Year, New Hope thing! Here’s my spin on it all.

My neurologist is very hopeful about a drug called Ocrelizumab, which has shown promise for treating both relapsing and progressive MS. It completed clinical trials in 2015. It will be available generally in about a year by the time it passes all of the Health Canada steps. However, my neurologist thinks that I am a candidate to receive it this year on compassionate grounds, depending on the drug company’s criteria for compassionate grounds. That was tough to hear – perhaps the toughest thing so far – that my need for this treatment is so great that I need to get it in advance of it being generally available. I choose to focus on the hope for this new treatment, whenever I receive it.

I’ve set myself up as an employer – there are a lot of pieces to it, but it’s exciting! I’ve done the tax set up, business registration, payroll, bought stationary (yippee!!!) and a filing cabinet – and yes, I’ve put an ad out and I’m about to interview, and I’m excited about that! I have a list of jobs I want to get done around the house, and I need someone to help me with it! And the personal stuff? I’ll suck it up, buttercup!

2016 has such promise on a number of fronts. Sure, doors have closed over the last 7 years, but unexpected doors keep opening. I’m excited by the advocacy and the volunteer things I’m involved in, and the change that they are able to make in people’s lives. And I’m hugely excited by the year ahead in our Winnebago – hitting the road with the dogs! We (okay I) have so many plans for places to go – or in my case, places to sleep…

And the MS challenges? I will face those as they come. The force is strong with this one 😉