Recognizing the importance of exercise for Angelman caregivers

After my son, Jude, was diagnosed with Angelman syndrome in April 2024 at 16 months, taking time to focus on my fitness felt like a luxury. Intense emotional processing took over as I cycled through fear, hope, guilt, and exhaustion. Every week was filled with new information, new appointments, and new emotions to manage.

Finding even 30 minutes for myself felt impossible when every moment seemed claimed by Jude’s needs. And even if I did, there was always something else waiting — laundry, insurance claims, dishes, cooking. My own fitness simply slipped down the list.

Then, last March, a reminder arrived: I was due for a cardiology checkup and exercise stress test. Before Jude, my body had fought its own battles: cancer, surgery, radiation therapy, recovery, and eight years of follow-up scans.

It was a sobering reminder that I’m not invincible, a realization that carries extra weight knowing that Jude will always depend on me for his care. It forced me to see that my own health and fitness aren’t separate from Jude’s care, but an essential part of it.

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Jude weighs about 29 pounds, but lately it’s felt like more. He can’t yet stand or step independently, so he needs full assistance with every transfer. On a typical day, I lift him more than 40 times: from cot to high chair, toilet to change table, floor to walking frame, stroller to car, in and out of the bathtub, and up and down the stairs to our front door, multiple times a day.

Each lift takes effort, and Jude doesn’t stay still. He laughs as he rocks his body, tugs my hair or clothes, pulls off my glasses, or reaches for leaves to chew on. These small moments of chaos and joy are constant reminders of his determination and my own body’s limits.

As Jude grows older, exercise has taken on a new purpose. It’s no longer about appearance or performance, but about endurance and protection. It’s a way to sustain the strength this lifelong caregiving journey demands, both physically and mentally.

These days, exercise is carefully planned in our family routine. My husband and I coordinate schedules so we can support each other and find time for ourselves. I run while Jude is in early intervention therapy or during my commute to work. Small pockets of exercise add up, such as taking the stairs, getting off the bus one stop early, or walking with Jude in his stroller after work.

There are months where movement is abundant and others where motivation is hard to come by. In these periods, I think of how Jude shows up every day, struggling with tasks most of us take for granted, such as getting himself out of bed, and does it all with a smile.

Exercise isn’t a luxury; it prevents injuries, sustains energy, and maintains our mental health. Taking time out for exercise isn’t selfish. It’s one of the most loving things we can do for the people who depend on us.

Note: Angelman Syndrome 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 other 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 Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.