Losses and Gains 2013

It’s that time of the year again. Each January I take a moment to assess what I’ve gained and lost in the past year, and what changes may await me in the coming year. As you know, I try to strike a balance. I don’t sugarcoat my condition, but neither do I wallow in self-pity.

This is the third consecutive year I’ve conducted this self-appraisal and blogged about it here. Mine should by no means be considered a typical disease progression. With MS, there is no such thing as typical. Each person’s experience is unique, but at least now you’re intimately familiar with one person’s narrative. If you’re so inclined, feel free to review my 2011 and 2012 assessments.

Remember, with Primary Progressive MS the losses are not transient, but are permanent, barring any unforeseen advances in medical technology.

So, how did 2013 treat me? Unfortunately, the temporary reprieve I enjoyed in 2012, which I credited to intrathecal methotrexate treatments, didn’t last. In 2013 my disease progression resumed. Here are the highlights:

2013 Negatives

• More difficulty eating – not the swallowing part (although this is a problem for some people with MS) but the holding onto the utensils part and the getting the food from my plate to my mouth part.
• More difficulty transferring – wheelchair to bed and back, wheelchair to toilet and back, wheelchair to iBot and back
• More restless leg syndrome and spasticity, requiring increased pharmacological involvement. Note that these could be secondary effects – not so much direct symptoms of MS but rather of the result of sitting in a wheelchair all day. Either way, I wouldn’t have this problem without MS, so it makes the list.
• More difficulty with grooming tasks such as brushing my teeth, shaving, showering, etc.
• More difficulty with the keyboard and mouse

2013 Positives (I took the liberty of including nonmedical issues in this list)

• Insurance is paying for two physical therapy sessions per week, indefinitely.
• We purchased a new central air-conditioning system (heat sensitivity is a major issue for people with MS).
• Kim installed a new patio and outdoor fireplace in our backyard (grass is no friend of the wheelchair user).
• Enjoyed a vacation in Jamaica.
• Kim threw me an incredible 50th birthday party.
• Our teams won all of the Red Sox and Patriots games that we attended. Kim and I were present at Fenway Park when they won the World Series at home for the first time since 1918.
• I made several new friends (like Susan and Joe, for example).
• I had an article published in a magazine for the first time.
• My readership continued to grow at enjoyingtheride.com.
• Enjoyed a tour of DEKA Research and Development.
• Our daughter finished her Master’s degree (and moved back home until she finds that first “big girl” job).

2014 Potential Losses (if my disease progression continues these may be the things that I lose next)

• More of my personal grooming and self-feeding tasks
• The ability to transfer to and from my wheelchair, unassisted (the next step here is an overhead lift system – very expensive and cumbersome)
• A few things that I can’t even imagine (the devil I don’t know)

2014 Potential Gains

• Saving the iBot (March 31, 2014 is our “mobility cliff”)
• Still more new friends (despite my lack of social skills, they keep coming)
• More writing success at blog and elsewhere
• Stabilization of disease progression (unlikely, but possible)
• A few positives that I can’t even imagine
• Another year above ground- still preferable to the alternative, by far

I'll need to discuss with my neurologist whether or not to continue with intrathecal methotrexate treatments. I’ll let you know how that goes.

I appreciate that many of you are emotionally invested in my journey, and so I wish I had better medical news to report. Primary Progressive MS is a tough disease – not easily tamed. But life remains good, and I still have so much to be grateful for. I’m not happy about my disease progression, but I had no illusions that the plateau I enjoyed in 2012 would last. In fact, at this time last year I wrote:

“By no means am I assuming that my disease stabilization will continue, but it’s a bit like winning a sports championship – nobody can take it away from me. My 2012 MS Success trophy now sits prominently on my mantle, to the left of the trophy for Stuffed an Entire Peanut Butter Sandwich in My Mouth that I won in seventh grade, and to the right of the trophy for Made a Move on the Freshman Girl with the Nice Ass and Playful Personality that I won in tenth grade.

Nobody can ever take these accomplishments away from me.”

There is no 2013 MS Success trophy. But I meant what I wrote last year. I’m doing okay. Really.