Uniting Britain’s CMT warriors

Muscular Dystrophy UK’s support inspired Peter Neville to cook up a plan which has united and helped over a thousand Charcot Marie Tooth (CMT) ‘warriors’.

Successful chef Peter, 42, had cooked for Jamie Oliver and even served HRH the Queen, as part of his fantastic catering career, but a diagnosis of Charcot Marie Tooth (CMT), aged 38, changed everything for him – and left him feeling completely isolated from the world.

He says the support he had from Muscular Dystrophy UK was a lifeline at the time of his diagnosis and helped him decide to do something really positive to turn things round.

“There was only an American CMT Facebook page so I created #cmtfriendsuk and shared it with the Americans. People from the UK joined in their hundreds – and it has provided desperately needed contact for so many people living with the condition.”

As the group grew he invited people to become administrators and to expand it further. With the positive tag of ‘CMT warriors’, Peter commented:

“We have found through talking with others that everyone’s issues are different. Some people go through life without the condition being noticed while others are full wheel chair users.”

Peter now lives in an accessible bungalow with partner of six years, Tracie Carter, her youngest son Danny 17 and their collie dog Rupert.

Although his diagnosis came late, there were signs all along the way.

“As a child I was the clumsy kid, never picked for a team and often tripping up. Aged around 15 my parents would complain about shoelaces being undone and fasten them up.

There were more signs throughout his catering career.

“I noticed the steel toe caps hurt my toes, on the top of the pip joints. I was a bit confused and concerned but adapted to trainers for work and accepted injury risks. Then I started getting really bad pins and needles. I was diagnosed with carol tunnel syndrome and was operated on – but six months later there was still no change.

“Generally though I went through life very positively up to about the age of about 33 when I noticed I’d struggle a little more moving a table or carry big pans. I’d trip, or stumble. “Hot pan chef” the assistant would shout.”

But it was only after a GP sent him for an inconclusive nerve test, followed by a visit to a neurologist, that he was finally diagnosed.

Peter said all the terrifying questions which began with ‘what, where how, who, now’ were answered in time with the wonderful understanding support he received through many calls with Muscular Dystrophy UK.

Peter has also volunteered at MDUK’s Town and Gown 10k event series. Watch a video of Peter talking about the experience and the value of volunteering.

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