The challenges of managing FA and using a wheelchair in the winter

Today is another brutally cold January day here in Massachusetts. Both my Friedreich’s ataxia (FA) and my wheelchair use mean I don’t spend as much time outside as I’d like.

Why? FA limits my outdoor time when it is either super hot or super cold. Right now, the latter is the problem. When temperatures drop, my extremities become so cold that I can’t feel them. Then, my hands and feet hurt as they warm up.

Ski gloves, a down parka, a scarf, and winter boots help, but today’s cold is still miserable. It’s not just me. Research published in the Journal of Neurology shows that FA can impair autonomic nervous system functioning. The authors explain that this impairment can be exemplified by the inability of people with FA to thermoregulate when exposed to extreme temperatures.

My body can’t adjust to the cold, and while bundling up helps, it isn’t enough. As a result, walks with my service dog, Wendy, are shorter. The glitter of sunshine hitting the snow on an evergreen branch and the bright red of a puffed-up cardinal still beckon me. However, I must avoid suffering too long in the cold.

While our walks are shorter, they’re still one of my simple pleasures. FA limits my enjoyment of winter but doesn’t diminish it.

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Wheelchairs don’t like snow and ice

I use a wheelchair because I can’t walk due to my FA symptoms. Unfortunately, my chair typically spins out on snow and ice, and I don’t want to get stuck outside in frigid temperatures — even if I have helpers who are only a phone call and a five-minute drive away.

We currently have about 3 inches of snow on the ground, and in this weather, I have two safe options for walking Wendy. One is to get us both in the car and drive to a local park, where the sidewalks are usually plowed. The other is to wait until my husband, Dave, is home and have him walk her.

I normally walk Wendy around our neighborhood, but in winter, the sidewalks aren’t reliably clear of snow and ice. Residents are legally responsible for clearing the sidewalks in front of their houses, but they don’t always do it. But driving my wheelchair down the road isn’t safe, either. The path between my house and van is clear, so driving to the park works.

I prefer this option for walking Wendy because it’s one less responsibility for Dave, my primary caregiver, and I like my outside time with my dog. (I’m always cognizant of how much Dave does.) The drawback is that driving anywhere adds 15 to 30 minutes at each end of the trip for getting into and out of the car. I don’t always have that hour.

I’m deeply grateful that I still have the freedom to drive myself in a wheelchair-accessible van. However, because of time constraints, driving doesn’t always make sense.

I try to stay present and and focus on today’s pleasures, but my mind will drift to the winters of my youth. During those seasons you could find me riding my pony, Ebony, and listening to the snow crunch under his hooves and the wind rustling the leaves that remained on the trees.

I read Katherine May’s beautiful memoir “Wintering: The Power of Rest and Retreat in Difficult Times” about two years ago. In it, she reminds us to enjoy the restrictions of winter and allow ourselves to rejuvenate during its cold and short days. Today, I will heed her reminder as I decoupage a tray I plan to give Dave on Valentine’s Day. Instead of focusing on how my wheelchair and FA limit me, I see it as a time to focus on my crafting and my love for Dave.

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.