New equipment marks a loss of ability, but gain in independence

I was struggling to transfer unassisted from the couch into my wheelchair when I slowly fell on the floor. I worried that my osteoporosis-weakened bones had broken, even though I wasn’t in pain. Recent experience had taught me that broken bones can be very painful: I’d broken both my shoulders and my left leg in three separate instances between 2013 and 2019.

My osteoporosis is because of Friedreich’s ataxia (FA). It causes me to have poor coordination and lower body strength, which is why I need a wheelchair.

I worried about waking my husband, Dave, to help me get off the floor. What was my choice? I had to yell for his help or sleep on the floor, which seemed like an avoidable misery. So I hollered for him, and he came stumbling out of the bedroom with some serious bedhead. He quickly lifted me into my wheelchair and reassured me that I would’ve been in pain if I’d broken a bone.

Another ability is gone. I’ll no longer transfer from the couch to the wheelchair.

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I’ve had countless losses like this one during my journey with FA. Some are big — walking, for example — and others, like this one, are relatively small. When trying to manage my mental health, though, I try to remember that the small losses hurt and add up to big grief.

I already have two poles for standing and security in my house. These poles are tension-mounted from floor to ceiling, with a handle that can be pivoted and secured. The ones I use are by Stander and are called the Security Pole and Curve Grab Bar.

I have one by my bed, and I use it to get into my bed from my wheelchair; the bed is too high otherwise. The pole is a huge boon for me, allowing me to safely get into and out of bed as I like, regardless of whether someone is home or awake.

I have a second pole near my recumbent trike, which I can use inside because it’s on a trainer. The pole enables me to get into and out of my trike independently.

Acknowledging the loss while celebrating independence

Beyond my independence, there’s another huge benefit to these poles; because of them, people around me are less worried about my safety. In other words, I should think of the poles as helping the people I love, as well as me.

It’s been my experience that with every piece of new durable medical equipment (DME) I get, I sense a loss because I can no longer do something I once could. Yet I also feel an improved sense of independence. I’ve found it’s been helpful to acknowledge the loss while celebrating the independence and benefits for me and those I love.

Losing abilities, large or small, is hard. Sometimes my unwillingness to deal with those losses prevents me from getting the DME that I need to be safe.

After my fall, we got that much-needed third standing pole for in front of my couch. Now I can safely watch my guilty pleasure show from the couch. No one else has to be home or awake. I can cozy up with my dog and blanket as I watch “The Real Housewives of Beverly Hills.”

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.