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.
If physical therapists who work with your primary care doctor notice a reduction in your range of motion, they can aggressively target the area, using techniques to improve your movement. If pulmonary tests indicate that your diaphragm is weakening, your doctor can start you on a BiPAP.
Duchenne is a serious condition, and a physical examination by a non-medical person is of limited benefit to you. You need a medical professional to monitor changes in your body and determine the best treatments to maintain your overall health.
It’s essential to develop strong relationships with one or two doctors so that they know you sufficiently well to point you toward clinical trials and suggest additional treatments.
People often ask me why I’m doing so well. I tell them a big reason is that I have two excellent doctors who know my body better than I do.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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