Taking control when living with limb-girdle muscular dystrophy

The power to influence or even direct people’s behavior or the course of events is part of a typical definition of “control.” When living with a chronic illness, as I am with limb-girdle muscular dystrophy, our desire to control the course of events can be a creative balancing act. We hope it’s like riding a wave slowly and smoothly, ending on warm sand.

Sadly, given genetic and other biological factors, the progression of all types of muscular dystrophy is difficult to control.

What I find easier is the personal behavior part of the above definition. Notice I didn’t say “easy”; I said “easier.” In my sixth decade (I’m 52 as I write this), I continue to battle the disease that’s been part of my life since my diagnosis in August 1985 and that lurked in the shadows before.

Quite simply, I’ve learned to control what I can — and let go of the things I can’t. It’s easier said than done, of course, but below are a few things that have helped me on this journey.

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Practicing the control I have

As everyone ages, we’re bombarded with all kinds of advice about exercise, diet, the sun, and more, noting what may or not be good for us. What happens after I try this advice is a perfect illustration of something I can’t control. But it doesn’t stop me from trying.

For example, I limit portions when I eat, I don’t snack between meals, and I’ve become a dessert taster. Adopting that last one was tough, but having a bite of someone’s dessert is likely better than my eating a pint of ice cream, so I do my best to control my desire.

Long ago I gave up sugary soda for water, water, and water. I don’t use alcohol regularly, nor do I smoke anything. I liked to tell my middle school students that my body isn’t in great shape as it is, so I need to be careful about how I fill my gas tank. If the deck is already stacked against me, why would I invite trouble by poisoning myself with alcohol, drugs, or cigarettes?

I’m careful to wear sunblock and get enough sleep each night. I faithfully use my noninvasive BiPAP breathing therapy each night, as well. That makes me compliant, my doctors tell me.

That gives me a little mental boost, like winning an award for doing something right with so many factors beyond my control. Is it easy to sleep with a breathing mask on every night? No. Is it easier than waking up multiple times an hour because of sleep apnea from weakened respiratory muscles, which can happen as my limb-girdle muscular dystrophy progresses? Absolutely.

I stretch my arms and legs, with help, multiple times a day. I’m careful about my posture when I use my power wheelchair. I wear my seat belt 100% of the time when I’m in a car. Why? Because these are things I can control.

I maintain a maintenance schedule for all of my durable medical equipment. My power chair, ceiling-mounted lift, chair lift, and anything related to my mobility aids are inspected on a regular basis. My disease is hard; making sure my power chair tires are good to go is easier. Control.

I’m bordering on fanatical about my dental care. My wife finds it funny that I have a manual toothbrush, a power toothbrush, and flossing gear for people with limited hand control. And besides that, I actually enjoy going to the dentist for cleanings. Why? Because it’s in my control. While we’re at it, I change the oil in my car when I’m supposed to, and I have a mechanic friend who regularly checks my tires, hoses, fluid levels, wipers, and the rest of the enchilada.

Does all of that make me what some would call a control freak? Do I cheat on a few of the things above? (As an answer, see the best cheeseburgers in Boston — because I have.) Nonetheless, I believe in taking advantage of the control that’s possible and that’ll continue to help me mentally, emotionally, and perhaps physically as I navigate continued life with limb-girdle.

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.