My MS Story Chapter 2 - This MS Thing is a Walk in The (National) Park

Portland Head Light (Photo credit: Wikipedia)

The story picks up with Kim and I still sitting at our favorite spot near the ocean, struggling with the idea that I had both a crippling disease and a disease that would probably kill me in about 20 years.

After I regained my composure, something I almost never lose, we drove back to my wife’s office and started surfing the web to see what we could learn about this strange disease that had something to do with a bunch of scleroses, whatever they were. Remember, in the year 2000 it was not necessarily a person’s first instinct to Google any question that popped into your head. It was more like “oh ya, probably we should see if we can learn something about MS from this www thingy.”

We quickly determined that either the PA was full of crap or I completely misunderstood his statements regarding life expectancy. MS only has a minor effect on average life expectancy, and this consequence is only secondary in nature. MS rarely kills you directly. The fact that MS makes you relatively immobile over time tends to shorten your life span by a few years. If you are not an active person, then you don’t live as long. Mankind has known this forever. Our computer research also revealed that there were lots of treatment options and that many patients lead long, fulfilling lives after diagnosis. We calmed down. It was not a hopeless situation after all.

When I went to see the neurologist for confirmation of the MS diagnosis, he was taken aback that the PA had jumped to what he considered to be a premature conclusion. He doubted that my minor symptom was anything as serious as MS. Based on his reading of the MRI film it was highly unlikely that I had MS. “You could find a tiny brain lesion like that in almost anyone’s MRI.” He conducted a battery of tests that were inconclusive. We decided to just wait and see if anything developed.

Shortly afterward my wife and I made the unrelated decision to move our family from rural Northern Maine to the more populous coastal region of Southern Maine. Once we were settled in Southern Maine I found a new primary care physician and told her my story, but this did not occur with any urgency. After all, so far I had a little hitch in my step, and had met with an overzealous PA and an unconcerned neurologist.  It seemed as likely as anything that my hitch would simply go away one day, like so many other aches and pains in our lives simply go away over time. My new PCP’s initial reaction to my MS Story was "I doubt that this is some terrible, chronic disease like MS." She referred me to a back specialist and then to another neurologist. The back specialist found nothing to explain my left foot problem. The Southern Maine neurologist was as unimpressed with my brain MRI as the Northern Maine neurologist was, and also suspected something less dire than MS.

Acadia National Park Jordan Pond Maine (Photo credit: Wikipedia)

During the summer of 2001 we took a vacation with about 20 other family members near Bar Harbor, Maine, the home to Acadia National Park. One day we decided to hike the three miles or so around Jordan Pond. I didn’t think twice about it. At first the hiking path was smooth and easy to walk. Eventually the path became a bit rocky and uneven. I began to have trouble lifting my left leg up over obstacles that it needed to be lifted over. Soon I could not hide this fact from the family members with me on this hike. I didn't want to cause a scene, and at that point I had never discussed my potential MS diagnosis with anyone other than my wife, so I made up a story, and Kim was good enough to play along. I feigned a sprained ankle and even fashioned a rudimentary walking stick. However, as I limped around Jordan Pond my wife and I both knew that this was a new and significant development.