Discovering New Ways to Live with Charcot-Marie Tooth Disease

Charcot-Marie Tooth (CMT) is a neuro-muscular disease that can impact everyone differently. There are a few variations of a CMT diagnosis, but I have never been given a specific diagnosis. The diagnosis test generally involves a form of electrical nerve stimulation which is very painful, so I just avoid it. I never needed testing because it was clear during stages of childhood development, as I learned to walk a little later than most babies. In my childhood, the signs of CMT were loud and clear because of how I walked or ran.

Accepting My Need for Mobility Aids

As I have progressed throughout childhood and my young adult years, I have needed many different mobility accommodations. Some were easier to acknowledge than others. I have regularly needed to check in with myself and recognize my own internalized ableism. For a long time, I felt like I did not need a power wheelchair because I could walk. It took me years to really understand how to manage my energy with mobility aids (braces, crutches, etc.)

Whether you just acquired a disability or have had one for many years, give yourself time to understand how your disability is evolving. As you notice changes, making accommodations for yourself becomes easier. One of my favorite mobility aids is my Stretto Power Chair. It is my first power wheelchair ever and it serves many purposes for my mobility.

How I Use My Stretto Power Wheelchair

I choose to use my power wheelchair when I plan to walk long distances. Because of CMT, I have a weird mixture of footdrop and plantar fasciitis which can make walking difficult. I also like to use my wheelchair when I am going somewhere at night. Visually, walking in dark spaces can throw my balance off. I also like to have the support of my power chair when I know I will be standing for long periods of time. For example, when I groom my dogs, I am standing for over three hours. Using my wheelchair is a simple way for me to conserve energy and keep myself safe while using scissors or clippers. For the same reasons, I use my power wheelchair when cooking and baking in the kitchen.

As I discovered what worked for me, I had a great support system. Those individuals encouraged me to try new things and develop a sense of pride. I hope your transition to using mobility aids allows you to experience support from new friends as well.

About Riley Hurt: Riley lives in Salem, Oregon, and uses a Stretto Power Wheelchair for mobility. Riley is enrolled in college, pursuing electrical and computer engineering. She hopes to make her future field more inclusive for people with disabilities. Click here to learn more about Riley.


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