What’s Wrong With Me?

Lake Placid Olympic podium

Lake Placid Olympic podium

 I recently learned, after my Aunt let it slip, that my parents knew there was something “wrong” with me, when I was an infant. Even though my father was not a fan of doctors, they had me examined, hoping for an answer. Then I began falling, around age 3, tripping over my own feet, frequently spraining my ankles, and cutting my knees. Prompting my father to yell at me, “Stop being so clumsy.”

In kindergarten, the school nurse told my parents that I walked “funny,” because I was mimicking my mom’s polio limp. So, then my sister started yelling at me to, “Stop walking like mom.” Soon, other kids began picking on me, making fun of the way I walked, and no-one chose me for their team in gym class. Then as a teenager, I remember listening from my room, as my parents debated whether they should let the doctors perform back surgery, or force me to wear a cumbersome back brace. My father won of course, and nothing was done for my slight scoliosis.

In college, teachers and other students kept asking me, “What’s wrong with your ankle?” After numerous physician visits, still no real diagnosis. One doctor determined I had weak ankles, another said I had a bone chip in my ankle, and suggested I wear high top sneakers.

Although I had these symptoms all of my life, I didn’t find out what was “wrong” with me until I turned 46. At that point, I started my day by getting out of bed, taking a couple of steps and falling on my face. I kept looking to see what I had tripped on, until finally I realized, I had tripped over my own feet. Because of nerve damage, I didn’t feel my foot catching on the carpet. I didn’t know that I had foot drop. At the same time, stairs were becoming a real challenge. I couldn’t climb stairs that didn’t have a hand rail. My husband saw me on my hands and knees, trying to climb stairs, and insisted I see the doctor again.

After a neurologist ruled out MS, MD, Lyme disease, and spinal stenosis, I researched my symptoms online again and asked to be tested for CMT1A. The Athena diagnostics genetic test proved positive. I finally had a diagnosis. Charcot-Marie-Tooth (CMT), a degenerative neuromuscular disorder, robs people of normal function of their arms, legs, hands & feet. Rarely, like in my case, CMT can affect your voice and breathing as well. Although millions world-wide, 1 out of 2,500 have CMT, most have never heard of it.

Now, my friend, Amy, is participating in the Second Annual CYCLE 4 CMT, to raise funds for a treatment of CMT. Please support my friend Amy, who is always helping others, in her goal of raising funds to fight CMT.

Visit Amy’s page and donate here: https://www.firstgiving.com/fundraiser/amy-cherkosly-1/CYCLE4CMT

Donating through this website is simple, fast and totally secure.

I’m going to the event to support Amy and the other athletes. Here’s my fundraising page:

The CMTA is close to finding a medication to stop the progression of some types of CMT. For more information visit: www.cmtausa.org

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