I’m Now Learning How to Schedule DMD Around Our Lives

Bend your mind.

When we discovered our middle son, who has Duchenne muscular dystrophy (DMD), was on the autism spectrum, we helped him adjust to unexpected changes by using the words “bend your mind” as a cue.

We haven’t used those words with him for years, but as I started thinking of writing about the stress of scheduling my sons’ medical appointments, I needed to bend my mind to remain positive and thankful.

Because three of our sons were diagnosed with DMD, we attended a neuromuscular clinic at a hospital that took care of all scheduling. Every specialist was at the clinic, and tests and procedures for all three boys were scheduled for us. We just had to show up at the right place at the right time. I loved that.

However, in the past two years, we’ve gone to a muscle clinic much closer to home, and I’m still adapting to how appointments are scheduled there. In our new clinic, endocrinology and cardiology act independently, and I schedule those appointments. This past week, it was stressing me out.

Recommended Reading

December 6, 2022 News by Patricia Inácio, PhD

GALGT2 Gene Therapy Helps Stabilize Muscle Function in DMD Boy

Life gets in the way

Last summer, I had to reschedule our clinic appointments because my oldest son and others in the cast of his spring musical were honored for their outstanding work, which threw everything off. We could quickly reschedule clinic time, but endocrinology, cardiology, and clinical trial appointments were nearly impossible to line up for all three boys in the same week. We live five hours from the clinic, so we prefer to attend as many appointments as possible in one trip. Unfortunately, multiple trips back and forth are getting nearly impossible.

When our sons were young and their diagnosis was still stinging, I was adamant that we’d see every specialist and have every procedure; I was very proactive and willing to do anything. I was on a mission to slow the progression of the disease. I scheduled life around the boys’ medical appointments.

Because of the problems last summer when I had to reschedule appointments, we’ve been trying to play catch-up. We went to a muscle clinic this past fall, my husband took them for a clinical trial appointment last month, and I was supposed to take them for an endocrinology appointment last week.

We review our schedule weekly or sometimes every other week to ensure we’re all aware of what’s going on and where everyone will be. When I told my three sons with DMD, Max, Rowen, and Charlie, that we would leave Thursday night and stay in a hotel for early endocrinology appointments Friday morning, the boys met me with grumbles and refusals.

My oldest son Max, a junior in high school, would miss reviews for semester finals. Rowen, an eighth grader, would miss his last rehearsal for his holiday band concert. And the youngest of the three, Charlie, a sixth grader, would miss his second to last day before his first band concert. Of course, they didn’t want to miss those important dates, and I couldn’t blame them.

I ended up rescheduling. I reached out to a team nurse and asked her to help me get our specialty appointments to line up again. She reached out to schedulers from other departments, but we had to push all appointments back to March. At least then we could see everyone during the same week.

And that’s when I had to bend my mind. I’d been so stressed out trying to get the boys to appointments. I had difficulty canceling and rescheduling them because I always wanted to be ahead of what DMD might be doing. I was afraid to let a couple of months pass.

And then I realized the boys are busy living life. We’re now scheduling our medical appointments around life, whereas it was once the other way around. And at the end of the day, that’s all I can ask. I want my sons to experience life and do the same things as other kids and the things they love. I never want their disease to get in the way; in this case, it meant not letting the appointments get in the way.

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, and are intended to spark discussion about issues pertaining to muscular dystrophy.