Falling in the shower is a daily worry in my life with FA

Every time I shower, I wrestle with the competing emotions of being a little afraid of a fall and wanting to relax into that delicious feeling of hot water beating on my back. A couple days ago, I decided to embrace my fear instead of pushing it away.

Let me explain the fear a little. I have Friedreich’s ataxia (FA), and its symptoms have severely and adversely affected my balance and coordination. I use a wheelchair for mobility.

Because of my FA symptoms, the shower can be a slippery and scary place. Not only is it wet, but the soap, shampoo, and hair conditioner add a sheen of slipperiness.

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Doing what is necessary as my FA symptoms progress

It’s not just people with FA who fall in showers and bathtubs. According to a report from the U.S. Centers for Disease Control and Prevention, many falls that result in emergency room visits occur in the bathroom, and bathtubs and showers are the biggest culprits.

Additionally, I have severe osteoporosis, likely a result of FA. So, while falling is never good, falling with osteoporosis is particularly scary. Having broken seven bones, I feel I’ve reached my limit!

As you’d expect, my shower is set up for me. It’s a roll-in shower, meaning there is no lip or barrier, allowing me to roll my wheelchair right into it. I sit on a built-in bench to shower. Grab bars surround me, and I have a hand shower that I can easily reach. The temperature controls and soap, shampoo, etc., are also easy to access.

As an aside, we were able to renovate our bathroom through Massachusetts’ Home Modification Loan Program. Perhaps your state or government offers a similar program?

My modifications sound pretty good, you might be thinking. They are, except for one thing: It can be a little precarious to transfer from the shower bench to my wheelchair at the end of my shower. This is because the floor is wet, making it easy for my wheelchair to slide around. I counteract this by putting towels around the front wheels or occasionally waiting until my husband is home so he can stabilize my wheelchair.

When no one is home, I wear my smartwatch. It’s waterproof, so I can wear it confidently in the shower. I mainly use it to call for help. Importantly, it detects hard falls in which you may have lost consciousness or are otherwise unable to get up, and then it automatically calls 911.

Using fear to help me, not inhibit me

Since I’ve had this setup for about 15 years, I have not fallen. Yet, I’m still fearful of that end-of-shower transfer.

My fear of falling during that transfer is legitimate. I should be careful. But who wants to be afraid of bathing?

So, I decided to reframe that fear into something positive. Now, I’m trying to think of my shower fear as the emotion pushing me to be cautious. I can still enjoy hot water beating on my back or that feeling of being clean. Fear won’t stop me from showering, but rather help me to be safer while doing so.

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.