Eighteen years is a long time to have had MS. Unimpressed by that number? How about the fact that I’ve lived with MS for upwards of five billion seconds, and I haven’t taken a single one of them off?

Welcome to my Annual Report post where I 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 fixate on the negative. And I reserve the right to inject humor no matter how serious the topic.

I conduct this thorough review only once each year for a couple of reasons. First, it takes that long for me to determine if specific changes are the result of permanent disease progression or are part of the usual ebb and flow of life.

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. That’s never a comforting exercise.

So, how did 2019 treat me? Could’ve been better, much better. Could’ve been worse, so much worse.

Looking Back at 2019:

Not so good news: My ability to eat and drink continued to deteriorate. If a year ago I needed assistance with 90% of my bites and sips, now it’s 100% of my bites and still 90% of my sips. Thank you plastic straws and OBI, my dining robot.

On the other hand: Physical therapy continued to help maintain some strength and flexibility in my arms and shoulders, and it got me out of the house a couple of times a week.

Not so good news: Although I can operate my computer, tablet, and phone with my voice, life is so much easier if I incorporate a pointing device such as a mouse. Throughout 2019, mouse control became more difficult for me. At times, my right hand relaxed and limbered up enough to operate the left mouse button. Other times it was too stiff and weak. I rarely could manage the right mouse button.

On the other hand: Apple came out with improved voice control of phones and tablets, so I switched from Android to Apple, and communications are so much easier for me.

Not so good news: Although I’m still able to control all the features of my wheelchair using buttons, knobs, and the joystick, in 2019, I had more difficulty.

On the other hand: I consulted with Mobius Mobility about the next generation of iBOT, and they featured  me on their website. The new iBOT will have knobs and buttons which are easier to operate. More to come about the iBOT in the next few months.

Not so good news: I’m gaining too much weight. As my activity level wanes with disease progression, my metabolism slows with age, and my willpower weakens, I’m losing the battle with my waistline.

On the other hand: I continued to employ home care assistants. Very expensive, but a big load off Kim’s shoulders. And, I’ve come to understand the African immigrant population so much better.

Not so good news: In 2019, I could no longer scratch itches on my face or head, and I couldn’t wipe a stray hair off my eyes. My hands don’t go up that high anymore.

On the other hand: I continued to promote my book, ENJOYING THE RIDE: Two Generations of Tragedy and Triumph, which was named a finalist for the Maine Literary Awards. I was invited to speak in front of groups small and large, and I must admit — I don’t hate it.

Not so good news: Although it appears that I’m accomplishing more this year than in previous years, I’m not. I’m fatigued throughout the day, and I only sit at the computer in short spurts. I spend much of each day fully reclined in my wheelchair and resting up for the next spurt of activity (which isn’t really much activity at all). My days are perhaps more interesting than in recent years, but not more productive.

On the other hand: I partnered with multiplesclerosis.net to gain more exposure for my blog posts, although I am producing far fewer blog posts these days.

And, I became an advisor for a local organization, 3i Supportive Housing, whose mission is to provide adaptive housing and associated services for adults with physical disabilities. I don’t do much work for this group, but anything I can contribute feels good. Too many people with diseases like MS end up in nursing homes well before their time.

And, I received my 4^th and 5^th semiannual treatments of Ocrevus, the only disease-modifying treatment ever approved for primary progressive MS. Unfortunately, it seems to work best for people earlier in the disease — people with less disability. To date, I have not noticed a benefit.

And, Kim’s home business remained profitable. Most hobbies cost money, but hers’ makes money. Because of these profits, we go on cruises — two in 2019 and at least two planned for 2020. I find that modern cruise ships are the most accessible vacation I can go on.

And,  I spent another year above ground – still preferable to the alternative.

2020 Potential Losses:

Assistance needed 100% of the time for food and drink intake.

I will encounter more difficulty operating the computer mouse, wheelchair controls, etc.

Eventually, my bladder is going to stop working, and that will suck. 2020 could be the year, but I’ve been saying that for a few years now.

Some things I can’t even imagine (the devil I don’t know).

2020 Potential Gains:

More writing success.

Seven-day cruises in February and April, thanks to Kim’s home business.

I will continue to dabble in public speaking.

A few positives I can’t even imagine.

The Bottom Line

I continue to weaken and grow fatigued. I can barely move a muscle below my neck. I am concerned for my future health and fearful for my future happiness. But, at this moment, due in no small part to Kim’s love and care, Enjoying the Ride is more than a clever name for a blog or a book. It’s my mantra, my truth.