For Charcot-Marie Tooth awareness month, Pete shares his story of having to give up his career as a chef without knowing what was happening to him. It took Pete nearly two decades from his first visit to the GP about foot problems to finally being diagnosed with CMT. Since his diagnosis, he’s founded the UK’s largest online support group for CMT, learnt how to adapt his hobbies to suit the progression of his condition, and become an avid fundraiser for the charity.
Two decades to diagnosis: why CMT awareness matters
At nearly 50, life looks a lot different today than it did a decade ago. My wife, Tracie, and I live in a fully adapted bungalow with our French Bulldog, Coco. Before this we were living in a three-bedroom house where I had to sleep in the living room for the last three years because I couldn’t get upstairs. If there’s one thing I’ve learnt from living with CMT, it’s that you either adapt or you get left behind.
The first signs
As a kid, I was always the clumsy one. I wasn’t picked for football teams and couldn’t run fast. At secondary school, though, I discovered cross-country running and, oddly enough, I was really good at it. I even broke the school record. But in year 10, I tore my hamstring and collapsed just before the finish line. My classmates picked me up and carried me across to break my own record, one that still stands 33 years on. That was also the end of my running days though.
When I was 18, I noticed my toes starting to curl under and went to the GP. I was told, “There’s nothing to be done until you can’t walk.” Back then, CMT wasn’t talked about let alone understood.
Building my career – and having it knocked down
I started my career as a chef at Cambridge, and by 17, I’d cooked for Queen Elizabeth. I went on to work for Trevor Oliver, Jamie Oliver’s dad, and in my mid-30s, I was running three of my own restaurants.
But then things started going wrong. I began dropping pans, tripping over my own feet, burning myself. To move into a profession where I’d injure myself less, I shifted to a sales job. That was fine until I started having problems with my hearing too. I finally spoke to my GP when I was 38 and got referred for hearing aids. A few years before this I’d had carpal tunnel surgery that didn’t help. I think the combination of my issues made my GP refer me to a neurologist. The consultant shook my hand and asked to see my feet. She suspected CMT and blood tests confirmed this.
Creating a support group and finding a community
Getting the diagnosis answered some lifelong questions but brought many more. I searched online for support groups, but they were mostly American based or ones you had to pay for. That’s when I started CMT Friends UK, which has since become the largest online support group in the country, with over 2,500 members.
When I was diagnosed, the consultant also told me to contact Muscular Dystrophy UK. They offered me a wealth of information, and when the time came that I needed my first mobility scooter, they gave me a grant through the Joseph Patrick Trust towards it. I knew then that I wanted to give something back.
Fundraising challenges
Tracie and I have since raised nearly £15,000 for the charity. From marshalling at the Cambridge Town and Gown to organising events, it’s become a massive part of our lives.
One standout moment was at Velocity in Snowdonia, the fastest zip line in the world. Tracie and I, along with six friends, took on the challenge. Right before we launched, I proposed to her, and it was one of the happiest days of my life.
This year, I’m organising a firewalk in Newmarket to raise money for Muscular Dystrophy UK and a local young man who needs life-changing equipment.
Adapting my hobbies to my condition
These days, I find happiness in simpler things than I used to. I’m passionate about woodturning and make bowls and cups on my lathe. Last Christmas, I sold wooden snowmen that I crafted to raise money.
Fishing is something I used to love doing, but as I became less steady on my feet and increasingly fatigued, I stopped this. I found a way to adapt my hobby though — my brother-in-law and I designed and built a koi pond in my garden. Over the last few years, I’ve nurtured them from two-inch babies to 12-inch majestic fish.
CMT awareness month
CMT isn’t just about weak muscles. Everyone’s different, but for me it’s 13 surgeries, cold weather making pain unbearable, and now facing two more operations — one to release the ulnar nerve in my elbow, and one to permanently close a tear duct affected by facial muscle damage. It’s mild scoliosis, rejected screws in my toes, and eyes that don’t always blink properly.
Awareness matters because too many people, like me, go years being labelled clumsy or unfit without knowing the real reason. It matters because early diagnosis can mean earlier support. And it matters because no one should have to navigate a rare disease alone.
