What I’ve Learned About Anxiety and Duchenne Muscular Dystrophy
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Our family has encountered many challenges in our journey with Duchenne muscular dystrophy, and there will be more to come. If I were to ask the question, “What is the hardest part of Duchenne?” in a room full of parents whose children have the condition, there likely would be as many answers as parents.
The hardest thing for me has been anxiety. My oldest son with Duchenne, Max, who is now a sophomore in high school, has been experiencing anxiety since seventh grade.
Anxiety was a surprise for me. After my sons were diagnosed, I read everything I could about Duchenne. I knew about the disease’s typical progression, so in some ways, I could prepare myself for what we might experience. But I had never read about the anxiety caused by Duchenne, so when it reared its ugly head in our family, I had no idea what to do.
It wasn’t until I started talking with other parents that I realized it’s not uncommon. Of course, I wouldn’t share this without Max’s permission, but he is open to sharing his story in the hopes that it will help someone else. I worried that sharing would embarrass Max, or that I’d be judged as a parent, as if I did something wrong. But the more Max and I share, the more we realize the importance of doing so.
Sleep is at the root of Max’s anxiety. His fears and worries may seem illogical to others, but I have learned that they are very real for the person experiencing them.
For example, Max was afraid to be away from my husband and me at night. These worries would cause him to tailspin. He would stay up crying, screaming, and on the worst nights, throwing things until the wee hours of the morning. There was little we could do to help him. I now know these were all signs of distress, but initially, it caused extreme tension and exhaustion in the house. Then, he started having anxiety attacks at school. During all of this, we started seeing a local psychologist.
For over a year, Max wouldn’t sleep in his bed. Instead, he wanted to sleep next to us. Finally, out of desperation and a need for sleep, we allowed him to sleep in our bed. Then, we’d move him to the couch or another location in the house, trying to get him to sleep. We have since learned that doing these things reinforced his fears.
The issues progressed, and he continued to have trouble with anxiety at school. Finally, it became necessary for him to transfer to a school that could better support his needs. However, the transition caused his anxiety to skyrocket. During Max’s first months at the new school, he slept horribly and had anxiety attacks before and during classes.
We made changes to his medication. I’m not sure we could manage his anxiety without it. He also started seeing a school psychologist, which helped until that person left the school district. By the second semester of his freshman year, though, he had a place at school to go in anxious moments, and enough support and structure that things started going very well. He even tried out for and participated in the school musical and got a summer job. We thought we had made it!
But when summer started, and he no longer had the structure and daily supports that were built in at school, the anxiety returned. Falling asleep became an issue again. The same tensions, stress, and exhaustion plagued the entire house. Finally, out of desperation, we begged for help at our biannual neuromuscular clinic visit.
After some detailed discussions with several providers, we were able to identify what Max needed and find an experienced, out-of-state psychologist that could practice in Nebraska, where we live. After three months and a few changes, Max has made tremendous progress, and it feels like it could last. He started his sophomore year with limited supports but hasn’t had anxiety attacks. His goal is to live independently with the help of personal care assistants in college. We have found the balance and resources he needs to make that a reality with continued work.
I encourage anyone facing a similar issue to talk with your providers. It’s a slow process, but with dedicated, hard work, relief is possible. We can prepare our children with the tools they need to manage the anxiety so that they can experience the fullness of school, work, or whatever it is they want to do in life.
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