Welcome to my annual post where I take a moment to consider what I’ve gained and lost in the past year, and what changes may await me in the coming one. As you know, I try to strike a balance. I don’t sugarcoat my condition, but neither do I focus only on the negative. And I reserve the right to inject humor no matter how serious the topic.
So, how did 2016 treat me? Could’ve been better. Could’ve been worse.
- Again this year, the negatives column is all about increased difficulty getting food and drink into my mouth, due to arm and hand weakness. If a year ago I needed assistance with 10% of my bites and sips, now it's 50%.
- After a sixteen-month personal trial with no benefits observed, I gave up on an experimental MS treatment—Biotin.
- Having some difficulty operating computer mouse and wheelchair controls.
- Physical therapy continued to help me maintain the strength and flexibility in my arms and shoulders.
- I made great progress on my book throughout the year. One of these days I'm going to have to call it finished.
- I voice-automated my home.
- Just a couple of days ago, I took delivery of a new, modern, power wheelchair. More on that in upcoming posts.
- DEKA, the iBot people, put my picture on the front page of their website.
- Down East Magazine printed an excerpt from my memoir.
- Bangor Metro Magazine published a nice interview.
- The Journal Nature mentioned me prominently in an article.
- My daughter got married, and the wedding was beautiful.
- Kim's home business took off.
- Another year above ground – still preferable to the alternative.
- More eating and personal grooming struggles.
- More difficulty operating computer mouse and wheelchair controls
- Eventually my bladder is going to stop working, and that will suck. This could be the year, but I’ve been saying that for a few years now.
- Something I can’t even imagine (the devil I don’t know).
- More writing success at the blog and elsewhere.
- Find a publisher for my book or decide to self-publish.
- Caribbean cruise in February, thanks to Kim's home business.
- New primary progressive MS drug called Ocrelizumab should be approved in 2017, and I will likely try it, although it's another longshot for me.
- A few positives I can’t even imagine.
Second, I only do this once a year because it can be a harrowing process. As I contemplate my losses and gains, I tend to extrapolate – envision what my life will be like down the road if the disease progression continues at this rate. I am concerned for my future health and fearful for my future happiness. But, at this moment, Enjoying the Ride is more than just a clever blog name. It’s the truth.