My PMC

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I don't really know when my condition began. I only know that I've "always" had it (as does my mother and my sister). As a youngster in the 60s & 70s, I'd run and play on the playground (I grew up in NYC) until I simply couldn't walk and my best friend's brother had to carry me home more than once. Doctors thought it was a joint issue for a long time. Mostly they were just clueless and curious.

In the 1990s I saw an MDA-certified neurologist who diagnosed it as MC, which says that "symptoms are alleviated with exercise." This of course is the opposite of what happens with PMC, and my then-husband was convinced I was merely "out of shape" and would improve if I just exercised more. He was actually pretty cruel; once after hiking up and down a mountain, I could barely walk any more. Instead of helping me to walk, he angrily walked 10 feet ahead of me, annoyed that I was so slow. I barely made it to the car, just swinging my legs from the hip. Another time we rented bicycles to ride the dune trail on Cape Cod. I could ride a bicycle fairly well on a level path, but the dunes were crazy up and down and my ability fizzled out pretty quickly and he was very disappointed. We were staying in a house with a lot of stairs, and I could barely move the next day from the intense soreness.

I have had three natural childbirths. I was so nervous about my body's ability to undergo childbirth, but I did incredibly well. I tried to relax, use visualization, and allow my body to do what it's designed to do, and all my labors were very short and unremarkable, the best kind. One out of my three children has this, too.

I got a job at a medical publisher in 1998, and one day I noticed one paragraph on PMC, and the lightbulb went off. I finally knew what I had. Years later, while working at Yale, I finally got a genetic test and a definitive diagnosis. Based on this I was then able to get a handicap parking tag just in case I need it, as well as a preferred parking lot.

This disease has depressed me a lot through the years. I had many "Why me" moments as a child/teenager. Because it's invisible it is hard for me because I am overly concerned with what people think of me. Now, at age 54, I am very overweight and it's just that much harder to lose the weight when you can't exercise much. I've had it with this cold climate of the northeast and plan to move to Arizona as soon as my youngest child has "launched." Hoping that there, where it's quite warm, I'll be more active to the extent that I can be.