Paul’s story
Myotonic dystrophy is one of the most common types of muscular dystrophy, characterized by progressive muscle weakness. It can affect many parts of the body, including the heart and lungs. Like other rare diseases, it can take years of going to many different doctors to get the right diagnosis.
Paul’s diagnosis at age 32 explained many of the seemingly unconnected symptoms he had been dealing with for years. “I probably had some symptoms starting around 18, like hand cramping. Back then I used to just sort of stretch my hands out and go, and not think much about it. I was very active,” says Paul.
He started having heart trouble around age 26. Nothing showed on the tests until he ended up in the emergency room with an extremely high heart rate. “During one of the tests, my heart stopped, and they brought me back. The doctor didn’t know what was causing it, but they decided to put in a defibrillator.”
At age 45, Paul has a pacemaker, sometimes needs a ventilator, and has lost even more strength in his muscles. Everyday things are very difficult for him. “He can’t do the pots and pans, put casseroles in the oven, get things off the shelf, or pour milk. Those kinds of things are almost impossible.” says Angie, Paul’s wife and primary caregiver. Alex (Paul and Angie’s teenage son) is a big help.
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