Friday, October 16, 2015

I’m Not Drunk, I Just Have …

Balance is my favorite word, but I have a bit of a balance problem.  I usually use the word balance when talking about contrasting work with non-work or left opinions with right opinions or the need to lose weight with the need to eat a gallon of Ben & Jerry’s ice cream in one sitting.  But the balance I have a problem with right now refers to walking up or down stairs without holding onto the railing or attempting to navigate a narrow sidewalk on a crowded street without bumping into somebody or trying to carry a box to my car without tripping and falling.

I’ve been very healthy most of my life.  Three years ago, however, I discovered numbness across a third of my body, all on one side.  My first thought was stroke, but that was not the case.  I also had a balance problem and weakness in one leg.  Doctor visits with four new docs plus tests, MRIs, CT scans, a lumbar puncture and a colonoscopy ruled out everything except my neurologist’s first thought: Multiple Sclerosis.  That diagnosis wasn’t really official, however, because the MRI only showed one lesion and nothing multiple.  She prescribed treatments for the symptoms and the numbness and some of the balance issue went away … for almost two years. 
Last year the balance and right leg weakness returned and early this year, after many more tests, the MS diagnosis was officially confirmed.  Geez.  Most people living with MS are diagnosed in their 20s and two thirds are women.  I’m a 60-something man with good health habits.  How can this happen?

Sadly, there is no definitive answer to that question. 
But here I sit, writing about and living with a mysterious disease that everyone’s heard of but not everyone understands.  Recent medical thought leads to the idea that some kind of bacterial incident early in one’s life can lead to this.  There is plenty of research going on and the meds and the treatments are significantly better than they were just ten years ago.  If you’ve got to get MS, this is the time to do it.  There is no cure but there is plenty of optimism.

My symptoms are devastating to me because of my track record for good health but are very mild compared to most people living with Multiple Sclerosis.  My balance sucks and my right leg is much weaker than my left.  I literally have to think about every step I take.  I have only fallen once, on a sidewalk during a vacation last year, but I’ve almost tripped several times a week.  Fatigue is another symptom and I do experience that more now than a few years ago.  Leg spasms are in the mix too and the little bit of running/jogging I used to love is now in my past.
There is more to the story and I’ll write about it soon.  My incredible good luck and positive attitude, mixed with fate and a few select, awesome friends, leaves me very optimistic.  You won’t believe the ‘small world, isn’t it’ stories about people I know and have met who live with or have experience with MS.

Walking is my main issue and there’s a chance that’s the only problem I’ll ever have.  Meanwhile, if you see me walking/stumbling down the street, even if it’s near my neighborhood wine bar, think about the message on a t-shirt I’m about to order:  I’m not drunk, I just have MS.

1 comment:

Linda V. said...

There are some lovely canes out there. I've been using one for quite a while now. Had to, because my knees were giving out, and now, post-knee replacement, it will be a bit longer before they are strong enough to compensate for uneven or icy/snowy surfaces. You might want to consider picking out a good one.

I am sad to hear you have MS. I'm glad it is mild. Getting it at this age may have allowed you to adapt better because of your good health in the past and gives you the wisdom to make changes to your life to make allowances for the changed circumstances.

While it is nowhere near what you are experiencing, knee replacements have come with a whole bunch of new things I was not aware of: no running (if I want them to last 25 years), no sports like basketball, volleyball, baseball, etc. No kneeling at Mass or elsewhere; and that makes my job (petsitting) a bit restricted (try fetching a cat out from under a bed without kneeling!)

Getting old is hell, and some of the solutions aren't much better. I hope you have the mildest of symptoms and that it remains just a small part of your life. We'll have to just keep plodding.... love you!