11/18/2014 06:20 pm ET Updated Dec 06, 2017

Wheel Life Changes


There are so many scary life experiences and dramatic changes that lie ahead of anyone diagnosed with ALS. When you are at your earliest symptom, which may be as innocent as a twitching finger, the idea of not being able to walk simply seems too far down the road to be possible.

I remember my earliest ALS events, meeting other pALS who were further along in progression was a commonplace. There were those whose speech was severely affected and those who were wheelchair bound. I remember having so many thoughts that were very similar to "I just can't see that happening to me." I can't explain why I felt that way, it is certainly not a thought based in logic; after all, I too have ALS.

They say that bigger is better. But when it comes to wheelchairs, bigger is scarier. As my legs have weakened over the past few years I knew the likelihood of needing a wheelchair was becoming more of a reality than I ever imagined it would be. First, I bought a lightweight manual chair that my friends and family could fold up and toss in the trunk whenever we were going somewhere that required excess walking. This lightweight aluminum chair took a beating as it traveled with me everywhere from airports to subway stations, but it definitely served its purpose. My only two complaints about the chair were - 1, because of its size it always made me feel small and 2, it always required someone having to push me.

When it was time to upgrade to a larger more substantial chair, my anxiety graduated to a bigger size as well. I remember the wheelchair technician measuring me like I was buying a custom made suit. The uniqueness of the chair and the customization definitely provided the slightest bit of comfort in what was an overly uncomfortable and difficult situation. In my mind, I wanted a chair that was sleek and small like a sports car. Having said that, you can imagine my shock and fear when he showed me what the final chair would look like. My vision of a sleek sports car was crushed by a transformer-like machine! After nearly 6 weeks of waiting, delivery day was finally here. I remember sitting anxiously in my living room as he walked in behind this Big, Black Behemoth, controlling it with a joy stick straight out of a 1980s arcade.

As I sat in my new ride for the first time I had to admit, this thing was super comfy. The tech walked me through all of the bells and whistles and explained that this was truly one of a kind. Having no use of my hands, my new custom built machine would be completely controlled with my right foot. I was able to cruise around my hardwood floors with ease. To increase the speed I press my foot down just like that sports car I was hoping I would get. This wasn't just a wheelchair, it was a term I had dreaded, and it was a power chair.

It wasn't until weeks after having the chair I started to realize that it had given me a tremendous amount of independence I had previously lost. When I was using that lightweight chair I was only in it until I found somewhere I could sit more comfortably which meant, if I were to go to a friend's house it was the chair from the car to the couch and that was my spot for the remainder of the night. I was and am still able to walk short distances, but now when I sit down I am by no means stuck. My newfound movement has been welcomed and maybe even admired by my close friends and family.

I remember my girlfriend expressing her feelings about getting a power chair and what that meant for me. I know she was scared and full of anxiety just like I was until we were able to take our first walk together - a quick two mile jaunt for Mexican food and ice cold margaritas. Whether it was the tequila or relief of the chair being anything but scary, we both felt a sense of calm and relaxation as we walked and rolled home.

I must admit that one of my new found, fun filled activities is actually going to the grocery store! Despite the horrible florescent lights I love putting the pedal to the metal and cruising down the aisles and whipping around shopping carts and Screaming kids!