Life can get hectic sometimes, especially when you are dealing with a rare disease such as Duchenne muscular dystrophy. However, you shouldn’t let your busy schedule prevent you from making regular visits to your primary care physician or neurologist. At routine appointments, your doctors can track your disease’s progression and act pre-emptively to avoid worsening of your symptoms.
Even if you don’t think that you need to be seen, it’s still important to have regular checkups. When I go to the Duchenne clinic next week in Worcester, Massachusetts, doctors will check my heart, pulmonary function, range of motion, strength — and order a lot of bloodwork.
Then they can compare the results with the previous tests to identify any changes and recommend treatments. For example, a few years ago, my cardiologist detected minor fibrosis in my heart and prescribed me a medication to ease that symptom.
Having Duchenne has forced me to think ahead in many areas of my life — whether it’s finding an aide, deciding where to live, or getting a wheelchair-accessible vehicle. It should be the same with your medical care.
The better you plan, the longer you can delay the loss of your ability to walk or breathe on your own.