Staying active during the summer helps keep my daughter mobile

Oh, those lazy days of summer are here. Unless I’m your mom and you have Friedreich’s ataxia (FA). In that case, it’s game on.

Years ago, I noticed a yearly pattern with our daughter Amelia, who’s now 13. Long before she was diagnosed with FA at age 8, I observed that her mobility and coordination decreased as the months grew colder. She’d struggle more with walking and balancing. She’d lose skills that would slowly, and sometimes only partly, return when the weather warmed up and she became more active.

I’ve tried to combat that with winter activities, such as trips to the gym or indoor pools that are seemingly never warm enough. Despite my best efforts, however, the decline still happened. It often felt like walking upstream. I was putting in a lot of effort, but without gaining ground.

Now I view summer as an opportunity to stay active and reclaim what the winter took. Here’s how we’re keeping busy while being mindful of the potentially dangerous heat.

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We swim — a lot. In the pool, Amelia feels free. She doesn’t worry about falling, and she can build her leg muscles, which don’t get as much use since she began using a wheelchair more frequently. We have some exercises from her physical and occupational therapists that she sometimes does in the pool, but mostly, she enjoys goofing around with her cousins, forming memories while getting exercise. We have a pool pass and go as often as we can.

One thing that’s helped me is having a dedicated bag for the pool filled with snacks, clean beach towels, and all the other supplies we need. Getting ready and out the door has become more complicated now that Amelia uses a wheelchair more often, so anything I can do to simplify my life is worthwhile.

On rainy days, we shop until we drop — literally. Sometimes we take Amelia to the store, and with a caregiver on either side, she uses a store cart to balance as she travels around. For Amelia, walking is a big deal. It takes a lot of effort, so staying motivated is essential. When she walks around the grocery store with us, we allow her to pick out some treats that we’d usually decline. The same is true when we visit other markets or a favorite art supply shop. Amelia pushes herself until her legs definitely need a break. It’s amazing how far one can move when crafts are involved!

We also bike when we can. Years ago, we invested in a customized trike for Amelia, one that allowed her feet to reach the pedals. Now she can keep up with us when we bike around the neighborhood, and the sense of freedom she feels is priceless.

I do try to maintain a balance. I want to encourage Amelia to keep her body moving, but I also know there’s something wonderful about sleeping in during the summer. So sometimes, I let things slide. But on those other days? Amelia can slide right on out of bed and get ready to move.

Note: Friedreich’s Ataxia 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.