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.

Given that we have now ushered in 2013, this seems an appropriate time to render an honest assessment of what I’ve gained and lost in the past year, and what changes may await me in the coming year.


2012 Negatives

• Started having mini panic attacks
• Two painful experiences with lumbar punctures

2012 Positives

• New, very accessible sidewalks were constructed in my neighborhood throughout the summer
• iPad mini (e-reader on steroids)
• No more restless leg syndrome because of pramipexole
• Panic attacks controlled by Cognitive Behavioral Therapy and Lexapro
• Wonderful vacations to the Bahamas and Cleveland (two tourist hotspots)
• Several new friends (like Darcy, for example)
• New Invacare power wheelchair (I still need to post about this)
• 6 intrathecal methotrexate treatments
• Negligible disease progression (presumably due to intrathecal methotrexate)
• New Dodge Grand Caravan wheelchair van (sold Kim’s car and my old van)

2013 Potential Losses (if my disease progression resumes these may be the things that I lose next)

• Ability to operate zippers (already very difficult)
• The rest of my personal grooming tasks
• Ability to sign my own name (that’s all I currently do for handwriting)
• Sitting up in bed, unassisted
• Transferring to and from my wheelchair, unassisted
• Feeding myself
• A few things that I can’t even imagine (the devil I don’t know)

2013 Potential Gains

• Another year of negligible disease progression (fingers crossed)
• Saving the iBot (Dec 31, 2013 is our “mobility cliff”)
• Trip to Jamaica (expect posts in March)
• Still more new friends (despite my lack of social skills, they keep coming)
• Entire summer in new, more walkable neighborhood
• A few things that I can’t even imagine (P. F. Chang’s opens a restaurant in my neighborhood?)
• Another year above ground

This 2012 assessment is much more upbeat than my 2011 assessment. That was a rough year for me, and so I was naturally pessimistic about 2012. But things have turned around, at least for the moment. 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 7th 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 10th grade.

Nobody can ever take these accomplishments away from me.

As you know, I try to strike a balance here. I don’t sugarcoat my condition, but neither do I wallow in self-pity. As such, it seems appropriate to render an honest assessment of what I’ve gained and lost in the past year, and what changes may await me in the next couple of years.

Note that with my type of MS, the losses are not transient or reversible, but rather constant and permanent. Frankly, I hadn’t realized how rough a year it had been until I compiled the list.

And the gains? They can be fleeting or, with luck, they may last forever.

2011 Losses

• Driving (click here)
• Getting into bed unassisted
• Dressing myself, including footwear
• Reaching above my head (click here)
• Almost anything with my left hand (click here)
• Reading hardcopy books, magazines, newspapers
• Preparing my own meals and cutting the food in my plate
• Some washing/grooming tasks
• Most handwriting tasks
• Any hope for CCSVI success for me (click here)

2012 – 2013 Potential Losses (I’ll make a progress report in 12 months)

• Operating zippers
• The rest of my washing/grooming tasks
• The rest of my handwriting skills (signing my own name)
• Sitting up in bed, unassisted
• Transferring to and from my wheelchair unassisted
• Feeding myself
• A few things that I can’t even imagine (the devil you don’t know)

2011 Gains

• About 10 pounds (5 since Thanksgiving)
• A much more accessible neighborhood (click here)
• A wonderful new home (click here)
• Kindle e-reader (click here)
• Great vacation to western U.S. (click here)
• Long term disability benefits secured until age 65 and Medicare for life (click here)
• More new friends

2012 Potential Gains

• New power wheelchair for primarily in-house use (delivery this month)
• Saving the iBot (click here)
• Trip to Bahamas (February)
• Still more new friends
• Entire summer in new, more walkable neighborhood
• Stabilization of disease progression (unlikely, but possible)
• A few things that I can’t even imagine (like a Powerball win or an appearance on Ellen?)
• Another year above ground

Ralph Waldo Emerson once wrote, “We do what we must, and call it by the best names.”

So what do we call this? Life, I guess.

It’s still way better than the alternative.

Image via WikipediaThis year I endured disabled surgery

And read disabled books
I contributed to a disabled charity
And thwarted disabled crooks

I sailed on a disabled cruise
And piloted my disabled iBot
I sat for disabled interviews
And the good disabled fight, I fought

I starved myself on a disabled diet
And took a disabled shot at a deer
I appreciated nature, and disabled quiet
And quaffed many a disabled beer

I hand-peddled my disabled bike
And hand-drove my disabled van
I spent disabled time with people I like
And I was a loyal, disabled, sports fan

I spent too much money on disabled wheelchair parts
And I made many a disabled friend
I touched a few disabled hearts
And a thousand disabled emails, I did send

It’s not that life is unfair
As you know, I’m not one to complain
You play the cards that are dealt you
If you live in the jungle, you better enjoy the rain

So during this holiday season
I urge you to seek out contentment
Don’t spend time searching for a reason
To feel self-pity, jealousy, or resentment

I’ll end my cryptic verse right here
And offer this sentiment to those most dear
I wish you a Merry Disabled Christmas
And a Happy Disabled New Year!