An annual physical brings a sigh of relief to this Duchenne MD caregiver

I had my annual physical last week and when the doctor told me I was in good health, it was a relief. I let out a breath I hadn’t realized I was holding.

I am a mother to seven: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD), and as their caregiver, my own health and physical well-being have recently begun to weigh on me.

When my three sons were diagnosed with Duchenne in 2010, I was told they would need help with all of their activities of daily living and would die in their early 20s. I often grieved early on that I would outlive my children, but I had barely entered my third decade of life and my own health wasn’t among my worries.

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But now my fifth decade of life is within reach, and the oldest of my sons with DMD is already 20.

I am pleased that my sons are doing well, even though Duchenne has still done what it is meant to do. We’ve tried several new therapies and have been involved in a number of clinical trials, which I believe have helped. My sons all have strong hearts, with heart function in the normal range, and they remain off any breathing support, but the oldest two are no longer ambulatory, and the youngest is in his final stage of ambulation. I have watched them lose function and strength so consistently that it has become normal to me. I know a health crisis could come about at any time, but right now, it appears that my sons have many years ahead of them.

Still, being a caregiver for three young men is not easy. It’s stressful and difficult to manage at times. My stress level fluctuates above normal, and I’m tired and exhausted most nights. In the last two years, I’ve gained 15 pounds that I can’t get rid of no matter what I eat or how much I exercise.

I’ve been working out consistently for the past six months on a Peloton bike that my brother-in-law gave us, and knowing my physical was in June, I started on some new supplements to help curb my appetite and sugar cravings. I was sure I could lose the weight by then, but it’s still clinging to me, and I was prepared for my doctor to talk to me about it.

I was also worried my lab work would be off, and I wasn’t sure I was in good health. The weight gain, fatigue, and stress made me doubt, and this made me fear that my health might not outlast that of my sons. The thought of failing them scares me. They need me to help them use the restroom, to take a shower, to cook and clean for them, and to help them manage their health. The older they get and the more the disease progresses, the more they will need me. I don’t want them to face this disease alone. I want to be with them every step of the way, especially during those excruciatingly difficult ones.

My lab work turned out to be in the normal range, and my doctor didn’t bring up my weight, so I did. Yes, it increased and my BMI was slightly elevated, but with my life circumstances, he was not worried at all. He told me to keep exercising, that the muscle I’m building will start to burn more calories, and I’ll be back to normal.

As I left his office that day, I let out a long exhale. I am a mother to many children who are entering adulthood. Three of them will always be close to me, perhaps in the same home, and I want to care for them as long as I can. Staying healthy is the only way that that’s going to happen, so knowing I am on the right road was like a breath of fresh air.

Note: Muscular Dystrophy News Today 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.