I’ve learned to embrace assistive equipment for my sons with DMD

I spent part of this week with three of my sons in Denver. On Wednesday, they had a clinical trial appointment, followed by an appointment at the assistive technology clinic to try out some robotic arms. In anticipation of the latter, I began to reflect on my sons’ journey with medical equipment.

I have three sons living with Duchenne muscular dystrophy (DMD): Max, 19; Rowen, 16; and Charlie, 14. Max and Rowen are nonambulatory and use a wheelchair full time. Charlie, however, has some ambulation. He takes his wheelchair whenever he leaves the house, including to school, but walks at home.

I share this with you as easily as I breathe, but accepting the fact that my children needed wheelchairs didn’t always come naturally to me. When Max was diagnosed with Duchenne in 2010, and I learned he would one day require a mobility aid, I couldn’t even look at pictures of older boys with DMD. Meeting a young man with the condition made me anxious because I struggled to imagine my son growing up to look like him.

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Life is full of irony, as I am now the proud parent of three young men with Duchenne who use wheelchairs. It doesn’t bother me that they are nonambulatory, and I am thankful that they have the necessary equipment to get around safely.

In fact, much to my surprise, I was ready for them to start using wheelchairs full time because it meant I didn’t need to worry about them falling and I no longer had to watch them struggle with each step.

Transforming fear into action

Duchenne initially struck hard. Max’s diagnosis came quickly: a blood test, then the news that he would grow progressively weaker until he died, followed by a prescription for steroids. Our experience felt harsh. I hope that over the past 15 years, providers have begun to deliver the diagnosis more gently, with greater hope.

Despite the profound impact of the news, life with Duchenne settled into a slower pace. I had time to come to terms with my sons’ condition before its progression affected their mobility. Once I absorbed what the diagnosis meant for them, my focus shifted to learning more and helping my boys as best I could.

Eventually, wheelchairs no longer scared me, and young men with Duchenne gave me hope, not anxiety. They advocated for themselves and others in the DMD community, attended college, and lived happy lives. At the beginning of our journey with Duchenne, my grief gave way to fear, but over time, I acquired knowledge that led to action.

I now often find myself searching for the next best therapy, clinical trial, and equipment to help them live their lives to the fullest. That’s why we had our assistive technology appointment. Max and Rowen have lost strength in their arms, making it harder for them to lift their arms and reach for things.

I know other families whose sons with DMD use arm support to help them maintain greater independence. During the appointment, Max and Rowen tested out a mechanical arm support device, a powered arm support device, and a robotic arm. The therapists at the institute took videos that they can use as documentation for insurance.

Max and Rowen are unsure if they’re ready for this level of support, but I encourage them to pursue it. I want them to be able to reach a light switch, grab their laptop charger, and raise their hand in class, and I believe an assistive device will help. Ultimately, though, it’s their decision, and I will support whichever path they choose.

I am smiling because I can’t believe my own transformation. At one point, I was afraid of what my children would look like in a wheelchair, and now I encourage them to utilize as many devices as possible to maintain independence. The mom I was 15 years ago wouldn’t be able to imagine the mom I am now.

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.