By Peter Neville
How should I start? The beginning’s always a good place! Join me on my journey!
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, I got wet EVERYTIME!
I was also diagnosed with Perthes disease (a condition where the top of the thigh bone in the hip joint loses its blood supply, damaging the bone.) and treated accordingly, with 2 weeks in traction. My leg was set in a cast and weights were added daily in the hospital to pull the joint apart.
At about 17/18 years of age, I spoke with a GP (general practitioner) with regards to my hammered toes. The response was, “We wouldn’t do anything about them unless you couldn’t walk.” It occurred neither to him, nor to me anything more was wrong.
I left the field of education at 19 after 3 years working as an apprentice chef in Jesus College, Cambridge University. I evolved within my time here from boy into man and was worked hard by my mentor (sous-chef), but he saw the potential I had. In my 3rd year, the college turned 500 years old and on my shift, we celebrated the new £1billion library; HRH Queen Elizabeth & Prince Philip visited for lunch….. The very lunch I had to cook!! Apparently, I was the youngest ever apprentice in 500 years and was being presented to the Royals in the afternoon.
From here, I progressed in different establishments, one that Jamie Oliver’s dad, Trevor, owns. At 29, I was running my own catering business and had 3 different kitchens to run. Several years later, I was diagnosed with carpal tunnel syndrome I had surgery, which made little difference. The odd pot of soup or sauce would hit the floor or occasionally I’d trip. only to dump yet another plate in the bin.
I went back to work for another company and closed mine down. It was an easy little job in a busy garden center. It didn’t change me though and physically, nothing changed either. But gradually, it became apparent I had lost partial hearing. We worked around it for a few months. I got hearing aids….Great! At least I could hear the birds again. Then came the wrist pain again, so back to the GP I went. “I’m sending you to see a neurologist,” he said, somewhat puzzled.
I walk into the neurologist’s office and offered to shake hands. The next line from her totally threw me: “Can you remove your socks and shoes for me please?” A rather strange request for someone with wrist issues! Looking at my high arches, she pointed out my pes cavus feet. With this, she announced, “Mr. Neville, I’m sending you for a genetic blood test and I’ll see you in 3 months time. I believe you may have Charcot Marie Tooth disease (CMT).” At this point in time, I was 38 years old.
In the UK, we’re fortunate to have our NHS or National Health Service for which we pay in a national insurance scheme on all earnings. If we have treatments, certain medicines or appointments, it’s all covered.
De Novo or New Mutation
Anyway, the results were in and verified. I’m a CMT 1A mutant, meaning I have the first known case of CMT in my family. I knew nothing about it, knew no one with CMT and was directed to speak with someone at Muscular Dystrophy, UK. Muscular Dystrophy UK has a fantastic advocacy service which is free and many CMTers who have trouble with grants, equipment, etc. MDAUK helps these people in a number of ways. They even helped me with a grant for my mobility scooter!
Surgery wise, I’ve been quite lucky in that I’ve had toes 2,3 & 4 fused on the right foot. Both big toes have had Jones procedures ( fixing and screwing the big toe so it no longer bends and the tendon is removed to keep it from moving.) I’ve had both Achilles tendons lengthened and one ruptured Achilles tendon I still need to deal with. I’m awaiting surgery where a tendon from my shin will be moved to support my left Achilles.
The Charcot-Marie-Tooth Association (CMTA) was the first Facebook group I joined and decided the UK would benefit from a similar group, so I created the Facebook group – CMT Friends UK – England. We are now 5 years old, with over 1600+ members. I’ve had specialist training in peer support and I’m also about to take a course in adult safe guarding (a framework which safeguards employees from exploitation).
Today, I’m dedicated to helping others as they get diagnosed with Charcot-Marie-Tooth disease. I am able to empathize with their struggles in daily life with simple tasks. I believe we have to push ourselves daily because if we just sit back, CMT wins. Over the last five years, cmtfriendsuk has made a difference in people’s lives.
I’ve had several people telling me that they no longer feel lost or lonely and have a safe place to rant, ask silly questions (they turn out to be vital) and most importantly of all, be understood. The first thing we say is, “Welcome aboard the CMT crazy train!” We have 1500+ members who have walked in your shoes and sung from the same song sheet.
I have a very close friend who I came across in CMTA Faebook pages around 5 years ago. Sophie was diagnosed with CMT 1A at a similar time as me and now we’re like brother & sister. We both reached out and found each other. Adam Miller is a good friend and admin on cmtfriendsuk. Adam often tells me that I saved him from the pit of destruction. We’re like brothers.
In fact, I keep myself positive by engaging with many people across the UK with CMT and strengthen bonds with those who are in the shoes I wore 5 years ago. Peer support work is a fantastic opportunity to work with people who are in need of help, a shoulder or a virtual hug. I’ve found that by helping others, it then in turn helps me as I stay focused.
For newcomers to the group, the most vital information is: “You are not alone anymore!” There are others out there. The best thing to come from CMT? The CMT Warriors!
On occasion, I’ll be contacted by the local hospitals to be a live model for training purposes of new neurological doctors in training. Each appointment I attend, I’m armed with CMT literature for both patients and medical staff.
I’ll be 44 in August. I’ve had 7 operations and more to come. I try to live as normal a life as I can with CMT. I go fishing in my spare time and love the great outdoors and fishing (I caught the biggest known fish from the nearby lake, (27lb 4oz) . Last year, my stepson Danny jumped out of an airplane from 10,000ft and raised £520 doing so.
I also love birds and taking different pictures or videos.
I live with my partner Tracie and we share our anniversary on April 26, 2021 ( 8 years together). Tracie is my rock, soul mate and love of my life. I have 3 children: a 21-year-old son with mild CMT1A, my princess daughter, 17, who also has CMT 1A and my youngest is 9 with no signs yet. Although they live on the opposite side of England, we often facetime with them.
My moto in life is a simple one. If I can make one person smile each day or feel better about themselves, then I’m winning in life.
If anyone wishes to follow me on Instagram please feel free to do so:
I chose the name the_cmt_warrior as felt it fitting for myself as I battle in many ways against CMT and often refer to it as a realm within which we live. We all battle for the long run and a cure for the future to come but until then, we must fight.
One thing that stands out that I did achieve was turning the town purple for purple Tuesday. Attached is a video of me on UK TV about this. Enjoy!
CMT – What are your thoughts? Got a story, suggestions, wisdom to share? I’d love to get to know you and possibly share your story. Write to me at:
Beautiful story…what an inspiring man! I am also a CMT1A mutant, though I was diagnosed at 14. Thank you for sharing and all you do for CMT in the UK.
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Thankyou for all you do. I enjoyed reading your story. CMT is difficult to get your head around. I also have type 1A. I’m still working as a hairdresser which I do find hard.