Annual Report 2016

Fifteen years is a long time to have MS, especially one day at a time.

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.

2016 Negatives:

• 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.

2016 Positives:

• 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.

2017 Potential Losses (if my disease progression continues, this is what could happen next): 

• 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).

2017 Potential Gains: 

• 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.

I conduct this thorough review only once each year for a couple of reasons. First, it takes that long for me to determine if certain changes are the result of permanent disease progression or are merely the normal ups and downs from aging, seasonal affective disorder, or my body’s sympathetic response to the menstrual cycles of the various women in my life (apologies to my dedicated readers for recycling that joke from last year, but I couldn't resist).

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.

An Excerpt from My Upcoming Memoir

In the picture to the right, I'm the little one, Tom is to the left, Andy is in the middle, and of course my mother…

I am still exploring options, so I don't have a publication date yet, but here's a snippet to tide you over. In this excerpt, I'm five years old and I've been told my mother slipped, fell, and will be in a wheelchair for the rest of her life. 

From Chapter 3 of Enjoying the Ride: Following in My Mother's Tracks 

We scurried through the maze of hallways at Eastern Maine Medical Center, an hour’s drive from our house. A few weeks had passed since Mom’s accident, and my brothers and I were visiting her for the first time. Dad coached us as we walked.

“Don’t cry or look scared. It will upset your mother.”

I kept falling behind the three longer-legged Sturgeons.

“She’s going to look different, but don’t stare.”

I slipped farther back until Dad took pity, stopped my brothers, and waited for me.

“Does everyone understand what I’ve just said?” he asked, looking from boy to boy.

I peeked at my brothers. Yes. The answer was yes. Three heads bobbed up and down.

Dad took us into the room, one at a time. I went last. Everything shone bright white or shiny steel. The room smelled like our kitchen after Mom had mopped the floor, but with the faint odor of pee. The collection of high-tech equipment reminded me of TV shows about space ships. A person lay in the middle of it all, hands folded on belly.

Something wasn't right. Dad had said we would be visiting Mom, but I didn’t see her anywhere.  She had long, beautiful black hair. This person’s head had been shaved, and two shiny steel rods were bolted to the top of the skull. Besides, Mom would be in a wheelchair. Andy had said so.

As if sneaking up on a frog in our backyard, I inched closer.

   The eyes… the nose… her mouth. These are familiar. It’s a woman.

   She wore bright red lipstick—a flowering rosebush in a snowstorm. When those lips broke into the smile I had enjoyed nearly every day of my life, I recognized my mother. 

   She couldn’t turn to look at me. The rods kept her head aimed straight up at the ceiling. “Come here, Mitchy. I won’t bite. How do you like kindergarten?” Mom spoke in her usual, cheerful way. Her eyes soothed; her voice comforted.

Dad must have told her not to cry, too.

Standing Up to MS

The rule of thumb is that full-time users get a new wheelchair every five years. Let me do some quick math…holy shit, it's time!

Think about your level of excitement when you buy a new car, then multiply that by a factor of 100. Now you have some idea how I feel about getting a new, top-of-the-line, power wheelchair.

Here's the chair my insurance company just approved:

It's the Permobil F5 VS, and yes, it is a standing wheelchair. Standing provides not only a functional benefit, but a therapeutic one. The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) lists these advantages of a standing chair:

• Improve functional reach and access to enable participation in Activities of Daily Living (ADLs) (e.g. grooming/hygiene, cooking, toileting, reaching medication)
• Improve mobility and lower limb function in those with preserved muscle strength in lower limbs
• Improve range of motion and reduce the risk of contractures
• Promote vital organ capacity including pulmonary, bowel and bladder function
• Promote bone health
• Improve circulation
• Reduce abnormal muscle tone and spasticity
• Reduce the occurrence of pressure ulcers
• Reduce the occurrence of skeletal deformities
• Provide numerous psychosocial and quality of life benefits

These are not insignificant benefits. In addition to the standing function, I'll get full recline to a sleeping position, and a 14 inch rise so that I can sit at high-top tables and reach the top shelves at home. In this case, size matters (I only have 8 inches rise now). There are too many other features for me to list here. In the wheelchair world, technology leaps forward over any five-year period.

This doesn't mean I've given up on the next generation of iBot wheelchair. I'm still very interested in where that product goes, but I don't have enough information to wait at this point. Speaking of the iBot, though, if you go to the front page of the new DEKA website, you might see a guy you know modeling his iBot.

I have so many people to thank for helping me secure this new wheelchair. I'll do that in a future blog post. If all goes well, I should get my Permobil by Christmas or soon afterward. What a present!