Muscular Dystrophy

The first time I met my husband was at a restaurant, on a blind date of sorts. He was walking (or should I say stumbling) across the parking lot to meet me, our mutual friends in tow. I thought to myself, "Oh no! I am so not gonna date a drunk!"

I sat through the dinner, making every attempt to be pleasant, but I knew, without a doubt, that this man, charming and witty as he was, was not going to get a second date. Fact is, he didn't appear drunk. He didn't slur his words, he didn't make stupid jokes or laugh too loudly at mine. Then, I noticed a Medical Alert necklace hanging around his neck. While trying (vainly) to catch a glimpse at the 'disease' printed on the pendant, I tried just about everything to get a look. I failed. So, when he asked for a second date, without our friends, I said, "I don't think so. I am not really in a dating mode right now." And I thought that those words were clear that I wasn't interested in him.

Wrong! He smiled at me, took my hand gently, and told me, "I have Muscular Dystrophy, it isn't catching." I, like most of America, knew ALL about muscular Dystrophy and he didn't have it! He couldn't. Now, this man was lying to me! After all, The Jerry Lewis Telethon showed sick disabled children in wheelchairs every Labor Day weekend! We all decided that maybe we would go to a movie sometime, but, really, I think we all just wanted to leave and end the evening.

We left the restaurant, and I hightailed it home to research Muscular Dystrophy! I wanted to know everything about the disease. I found so much information online! Too much, maybe. I was scaring myself! Until I realized something: that the disease was not the man. Sounds pretty basic, doesn't it? And, maybe you would think a 43 year old woman would already know that. I didn't, or maybe I had forgotten it. I studied the Muscular Dystrophy Association fact sheets, and made my own diagnosis - he had Charcot-Marie-Tooth Syndrome, a non-fatal form of Muscular Dystrophy, and actually, if you were going to have it at all, Charcot-Marie-Tooth (CMT) was the 'variety' to have. A few things I learned were:

• Charcot-Marie-Tooth, or CMT, is the most commonly inherited neurological disorder, affecting approximately 150,000 Americans.

• CMT almost never affects brain function.

• CMT is slowly progressive, causing deterioration of peripheral nerves, which control sensory information and muscle function of the foot/lower leg and hand/forearm.

• CMT does not affect life expectancy, but can, in rare instances, cause severe disability.

Once I had learned a little bit more about it from the medical point of view, I got curious about the man, himself. I steeled my nerves, called him and invited him over to dinner. Steve arrived right on schedule, all dressed up and carrying wildflowers from the local florist. I thought to myself, "Wow! He remembered I like wildflowers best of all!" And, then he produced a package of Red Licorice Twizzlers! I was in love! We spent hours talking and eating dinner, and talking more, and chomping Twizzlers. We never did get around to talking about the CMT that first night, but it didn't matter, we were talking and we were enjoying each other.

I went to his house for our second date. I even brought the Twizzlers. And this time, we did talk about the Muscular Dystrophy and the things that could be tough on a relationship. I learned that he had lost a lover because of her fear of the disease's likely progression, and his refusal to parent children and pass the disease on to the next generation. He told me that he would never be able to join me rock climbing or skiing, that the CMT just wouldn't make that possible. But, the best things I learned were that he had learned to adapt from a very early age, that he was a truly compassionate and caring man, that he had a mind as sharp as a scalpel and a wit to match! We sat and talked until I heard this weird noise - it was his alarm letting him know it was time to get ready for work. We set a date for that night and both rushed off to get ready for work.

That night, and for the next few months, we spent a lot of time talking and getting to know each other, and once in awhile, his disability would come into play, but we would just work around it and go on having a great time together. I told him that initially, I was afraid to let myself care for him, because I didn't know what it would do to me to lose him. He understood.

Even now, almost seven years later, there are times when his Muscular Dystrophy challenges us to invent a new 'work around'. I've learned not to leave anything laying on the floor, not even a paperclip, because the foot drop and gait problems would mean he would surely find the tiniest thing and trip and fall on his face. We had him fitted for AFOs (a brace to help with the foot drop and the weakened leg muscles below his knees). The Muscular Dystrophy affects his muscle strength, as well as his balance. He can't walk and carry things at the same time (well, not very safely, anyway) so we have a folding luggage rack in the car. His fingers don't always (and now, less often than when we met) work right, so I button his shirts for him and we always look for pants with the little hooks rather than buttons. We watch our weight to feel healthier and help his balance issues.The Muscular Dystrophy causes loss of sensation in his extremities, so we are very watchful with his foot care, to prevent tissue damage from calluses, ingrown toenails and other injuries. When we go to the mall, we make sure to take it easy, so he doesn't have pain in his legs. Little changes, that are very necessary when you love someone with Muscular Dystrophy.

And now, when someone says something out loud about 'that drunk man', we just smile at each other, and go about our life together, knowing that the Muscular Dystrophy is NOT going to beat us down!