I Overcame My Hesitancy to Use Mobility Aids, and You Can, Too
One of the most emotional and heartbreaking obstacles to overcome with a progressively degenerative disease like Friedreich’s ataxia (FA) is the use of mobility aids. I know the struggles firsthand because I’ve been entirely dependent on a walker for nearly three years.
I’m very open about my journey with FA, particularly about being a young mother who uses a walker. Lately, I’ve received a lot of messages about mobility aids. A friend or family member will reach out to say, “My [relative or friend], who also has FA, refuses to use a walker. How do I help them?”
While realizing that you need assistance and accepting that reality is a deeply personal decision, I’d like to address some of the main thoughts I had before accepting my disability, in the hopes that I can help others on their journey.
Using a walker is equivalent to admitting defeat.
That is a valid thought. However, it is not admitting defeat, but rather refusing to accept it. Your walker will empower you to continue living actively and independently. In reality, it’s more like admitting that your life is still worth fighting for, and you will continue doing everything in your power to keep moving forward.
My disability is so unfair, I don’t want the constant reminder that my body is failing.
Yes, life with a disability is unfair and inconvenient, no matter who you are. But let me ask you this: Are you able to ignore your disability when you’re unable to walk from point A to point B without worrying about falling? Wouldn’t it be nice to take some of the worry off your plate? Your disability will progress whether or not you accept help, so if you accept help now, you quite likely might prevent an injury from a preventable fall.
I don’t want to look disabled.
Your disability will be more obvious with a walker, yes. People will look at you with curiosity and sometimes pity. But they also will see strength, determination, and grit. They will admire your attitude. Also, it will allow you to spread awareness about your disability, which could lead to research funding, treatment funding, and one day, a cure!
I don’t want to become more disabled.
My biggest worry about using a mobility aid was “becoming more disabled because I would become dependent on constant assistance.” I was worried that my body would completely forget how to function independently. Well, it was already doing that, with or without a walker. That was the nature of my progressive disease. Becoming dependent on a walker restored some of my independence because I was now able to walk without waiting for someone to help me.
I don’t see how this walker will fit into my life logistically.
Making physical room for your walker is a task. You will have to find places to park it when you are on the couch or in bed. You will have to find ways to make it work well for you when you are busy in the kitchen or putting away laundry. You will have to figure out how to safely get it in and out of the car. You might have to ramp some thresholds or widen doorways, but all of that can be done. All of these efforts are worth it if it extends your independence safely. Once you find the right device for you, it does just work out.
I refuse to be ‘that disabled.’ I can get by without it.
When I used this argument with my mom, she frequently rebutted it with the adage, “Just because you can, doesn’t mean you should.” I had a catastrophic fall that obliterated my ankle, requiring intensive reconstructive surgery. Ironically, I saw my walker, sitting in the corner collecting dust because I refused to use it, out of the corner of my eye as I was falling. If I had swallowed my pride sooner and started using the walker earlier, that fall could have been prevented.
I’ve tried using one, and it doesn’t seem helpful.
It took a while for me to find the right device. Before that, it just felt like I was pushing a shopping cart around my house. Once I found the right device, it fit into my life. Also, you don’t have to go from no assistance to 100% dependent on a walker overnight. Try using it around different areas of the house as you get used to it.
Long story short, it is hard. It is emotional. It is not what you had planned at this stage of your life. But listen to your friends, family, and doctors. They likely have your best interest at heart and want you to be safe. And most importantly, listen to your body. You are a wonderfully complex person, and your body is trying so hard. Help it out.
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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.
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Comments
Terence O'Hanlon
Excellent article. I would add to the response to not wanting to look disabled that when you do, strangers are more careful around you, are less pushy, more accepting if you need to go at your own pace.
Also, using a disability aid is better for those with you who don't need to be constantly on the lookout for things that might cause you to fall, and be prepared to help you up if you do.
Melinda Younes from Northwest Georgia
Thank you Kendall I agree with Terence “Excellent article” I got really bad with pancreatitis couldn’t eat and dehydrated, was able to walk when I got sick at 55 years of age. In the hospital for 3 weeks was walking when I went in and and came out not able to walk on my own. I left the hospital with a walker and wheelchair. I walk good enough with the walker but I can tell the wheelchair will be coming back. Falling at my age can be life threatening my councilor told me. Being able to walk for over 50 years is mind changing. Your words are what this woman has to remember and except for my life now. Friedreich’s Ataxia is part of my life now. It’s hard to change and think different at any age. I am 58 now I can say this is my life now and blessed to have you all to listen to and teach me all about you and how you feel plus manage. My doctors are just now finding out about Friedreich’s Ataxia they tell me that it’s even more rare to happen at my age. I did have the heart problems and the doctors then when I was young blamed it on the way I ate. Everyone was eating the way I ate, I wondered why it was effecting me and not everyone else. It’s a huge relief and a new challenge at the same time, I do believe it makes us stronger. You all are the strongest people next to our military men and women I know. God Bless you all and God Bless America 🇺🇸