I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
As my Friedreich’s ataxia (FA) symptoms progress, I become increasingly dependent on assistance to walk and to generally function productively.
When my symptoms first started, I was able to get by holding onto someone for support. I would loop arms with my husband, parents, or friends for extra balance. When I realized I was helpless in public unless I was pushing a stroller or a shopping cart or depending on someone’s arm for help, I decided it was time to start using a real walking aid instead of relying on substitutes.
That’s when I got my first rollator. It was a standard, 4-wheel folding rollator I bought secondhand on Facebook Marketplace. But it sat in my garage for a couple of months because my pride got in the way. I was convinced that its presence would scare my symptoms into submission. I had hoped I would see it and laugh, thinking, “Wow, buying that was premature. I don’t need it.”
But I did need it.
I quickly realized, though, that it wasn’t the right walker for my lifestyle. It was too heavy, bulky, and unpredictable to keep in my car for errands. So, I ordered my first three-wheel rollator about two and a half years ago.
The three-wheel rollator is smaller when folded, and it remains folded so I can safely lift it in and out of the car. I used it for about five months before I needed assistance around the house as well. I tried using the four-wheel rollator again, but it still wasn’t right — it was too bulky and inconvenient. The three-wheel rollator has a slimmer width and is nimbler, so I bought a second one to use around the house.
I am used to assistive devices now. I know that I need them to safely function — which doesn’t mean I like this fact, just that I must accept it.
My inventory of mobility aids has grown into a vast collection. I have a three-wheel rollator that lives in my car, one that lives in my house, another that stays at my parents’ house, and a four-wheel rollator that has taken up residence in our backyard.
I also have a 2-in-1 walker and a wheelchair. I use this device when traveling, for long-distance outings, and when I know I will need to give my legs a break and sit.
All of these devices keep me moving safely. They allow me to independently continue to be an active participant in my life. It truly takes a village to keep me going.
I have other mobility aids in my life, too. I still depend on a helpful hand when walkers aren’t an option. I still use shopping carts and strollers when available. I put a bench in my bathroom so I can sit to get dressed. I have handrails by my doors and in my shower.
And we also have a golf cart to keep me going around the neighborhood. I use it to get the mail down the street, and to drive the kids to a playground or a friend’s house. Our entire family rides in it when we go trick-or-treating or to look at Christmas lights.
Mobility aids can take many different forms and serve different purposes. If you find yourself needing one, I have some advice:
Be patient enough to find the right one for you. Think about the situations in which you’ll need help, and buy the right device for those situations. I’ve learned that with FA, there is no one-size-fits-all solution.
Remember that there is no shame in accepting help. I know it’s hard. I know it’s unfair. I know it’s not what you had planned for your life. But doing what you need to do to stay safe, independent, and active is brave. Don’t let your negative feelings tell you otherwise.
When possible, try before you buy. Take a device out for a test spin, even if it’s just a few passes around the store. If that isn’t an option, find someone who has the device you are considering and ask them questions to see if it fits your lifestyle and mobility needs. Talk to your doctors or physical therapists about their recommendations.
Whatever you feel about your device is OK. It’s how you choose to move forward with those feelings that matters.
My 3-year-old daughter cracked herself up the other day when she said, “Come on, Momma, let’s walk and roll!” That pun perfectly sums up my dependence on mobility aids. I roll to keep walking. And I’m going to “walk and roll” through life as long as I can.