True Stories about Living with Charcot-Marie-Tooth (CMT) And Other Relevant, but Unrelated Tales
I was flagged by Sister Helena in 5th grade; she sent me down the hallway to a dark room, where I sat until a woman instructed me, “Read the eye chart.” I started at the top row and slowly made my way down to the third row, “E, F, P, no, Ummm B, F? no, […]
Read More
We’re back! Yohan yelled, sliding the door to the garage open. I noticed he was walking funny, not CMT funny, but like he had a stiff leg, a heavy foot, an injured limb? My perplexed look begged the question… What now? He brushed off my concern, acting if I were being overly paranoid and concerned […]
Read More
By Peter Neville How should I start? The beginning’s always a good place! Join me on my journey! Childhood Struggles As a child, all the tell-tale signs were there; you know, the not being able to run fast, tripping over your own feet or hanging onto the old rope swing across the river. Yes, […]
Read More
By Jeff Dols My name is Jeff Dols. I am 71 years old and I have Charcot-Marie-Tooth disease. I don’t mean for that to sound like an AA meeting, but it’s just a few basic facts. While it’s not my intent to preach at anyone, a little preaching may be involved. Some background: I was […]
Read More
My son Yohan was diagnosed with CMT at 7 years old. We have no prior history of CMT in our families. Yohan has CMT due to a new spontaneous genetic mutation. He’s the first in our family to have CMT. Though Yohan’s CMT has thrown roadblocks and presented challenges in his life, it’s also made […]
Read More
By Mike Driedger As someone living with CMT, I’ve found that living in a city — in my case, Toronto — has made living a healthy and active lifestyle easy. Of course, urban living might not work for you. But I’d like to share with you how I owe much of my health, mobility, and […]
Read More
The training wheels came off my own bike so long ago; I’d forgotten the emotions, challenges and vulnerable feelings of trying to balance on two wheels for a few pedal strokes without crashing to the ground. In fact, I had always taken riding a bike for granted until my 5 year-old son, Yohan, attempted to […]
Read More
Vicki Pollyea – October 27, 1956 – September 15, 2019 When I first met Vicki over 12 years ago, she was the leader for the Tampa CMTA/MDA branch, the largest CMT group in the country. We hit it off immediately, and I knew she’d be a forever friend, and I was right. Over the years, […]
Read More
James Lea It was in the winter of 2012 that we met the elderly man sitting in a bulky hospital-style wheelchair, covered from shoulder to toe with a plush blanket. Jeana Sweeney and I had flown to Seattle, WA to speak at a local CMTA branch meeting. We had just begun the presentation when a […]
Read More
“My high school years?” she shuddered. “After the doctors diagnosed me with polio at 13-years-old, they wanted to straighten my misshapen feet. So, for the next 5 summers in a row, my school vacations were spent either in the hospital or at home, immobilized, with heavy plaster casts weighing me down.” With raspy, uneven breath, […]
Read More
We are in the midst of an opioid overdose epidemic. As the laws on prescribing narcotics become stricter, the millions of people who suffer from chronic and debilitating pain are left to fend for themselves. Denied access to pain-relieving medication, those with excruciating conditions are suffering, searching for alternative forms of relief. It is in this […]
Read More
“His test came back positive for what? Sure, that explains a lot, but what’s it called again?” I asked stunned and a lot bewildered. “CHär/- Kät/ -Merēd -TOOTH, which sounded just wrong when he said it. I guess it sounds strange ANY way you say it, but he was completely butchering the French pronunciation of my […]
Read More
bestfoot4wardblog 