My husband, Paul suffers from a very serious form of muscular dystrophy called myotonic dystrophy type 1 (MD1). He started showing symptoms approximately five months after we were married.
Since then, his disease has progressed significantly and severely impacts our daily lives. Although MD1 is the most common form of adult-onset muscular dystrophy, it is still very rare, affecting only around 30, 000 people in the U.S. Here’s what people with myotonic dystrophy (and their families) wish you knew:
- MD1 is a genetic neuromuscular disease. An affected person experiences muscle-wasting.
- MD1 doesn’t just affect the muscles. It is multi-systemic. That means the heart, lungs, bowels-every single part of the body is affected to some degree.
- Myotonia means the muscles when contracted, won’t relax. Sometimes when Paul shakes someone’s hand or grips a door handle, he can’t let go.
- The disease is considered slow-progressing, but “slow-progressing” is a relative term. For example, Paul has extreme muscle weakness in his hands, arms, ankles, legs, face, and neck. A few months ago, he was washing his hair. Now, he cannot. He can’t shave his face, either. Every few months, we will experience a new loss.
- The little tasks add up quickly. Paul can’t put on his socks, button his shirt, comb his hair, or pour himself a glass of orange juice. These seem like small things that wouldn’t matter much, but imagine having to ask (or being asked) constantly for help with every little thing you need or want.
- Muscle wasting causes chronic, and sometimes severe, pain. Because his muscles cannot support his bones well, Paul suffers from severe and chronic pain, especially in his neck and back.