Freedom and independence – words many take for granted. Yet, when you live with a rare disease that can affect your mobility and energy, those words take on new meanings. I started losing my mobility before I got a diagnosis of myasthenia gravis (MG). It was 1 of my first symptoms and then progressed very quickly. I went from using a cane to needing a wheelchair in the same year, and I was in a wheelchair all the time for almost 5 years.
When I lived in my wheelchair, I was able to get myself around on my own inside my home, but once we left the house, I had no independence. I did not have the energy or strength to get myself far. I wanted a powerchair for many years, and finally, getting 1 was a game changer for me.
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Powerchairs are mind-bogglingly expensive. I researched the process of getting 1 through insurance; unfortunately, it was a complicated bureaucratic labyrinth I didn’t have the strength to navigate. I read it can be difficult to get the chair you want, and I did not want to have to go through another process of “proving” my disability to strangers and being invalidated, as I have many times throughout this medical journey. I wanted to buy 1 on our own, which meant it took years to get 1. I didn’t want any medical and insurance entities involved in my ownership of my powerchair.
During my research, I discovered that there are many used powerchairs available online from private sellers. The powerchair I found was actually never used; it was someone’s backup powerchair that sat in their garage. My husband drove hours to pick it up, and we got it for a small fraction of what it was worth originally.
There are things to consider when getting a powerchair. First is the cost, not just of the chair but adapting a vehicle to transport it and the cost of the maintenance. It took us a few years to make our van able to carry my chair. We’re in the process of having to get a new car, so we have to start that expensive process all over. We had to replace the batteries recently, and they were more expensive and complicated than I had expected. It also requires electricity to charge. These are all important things to consider. Like most medical devices, it requires special care and maintenance. But they can do so much for people who don’t have the energy or strength to manage a wheelchair.
My powerchair is not only a tool to help my mobility; it is more about quality of life and freedom for me. My husband and I can go on walks around our block, and I have the independence to be in complete control outside while I’m in it. We live near our town’s downtown, and if I feel up to it we can even go that far. We have transported it to a few places, but I’m really looking forward to taking it to more places in the future. My goal is always to find ways to participate more in life, and my powerchair is key to making that happen. We went to a small mountain cabin last year and took my chair. I could cruise around the wooded area in my chair since it’s powerful enough to do some off-road traveling. It was a dream. I would love to take it on a short, accessible hike someday and even to a concert someday. Those are all things I’m working toward and having my chair makes them more feasible. The joy I feel when I’m in my powerchair is indescribable. It is a sense of freedom I have not been able to experience for many years. I can be outside and participate in life without losing all my energy trying to stand or walk. This 1 medical device gives me freedom, independence, and a better quality of life.