Man with genetic disease defies odds - to become bodybuilder - video Dailymotion

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A man who suffers from a genetic disease which leads to muscle weakness and numbness has defied the odds to become a successful bodybuilder.  John Nixon, 44, suffers from Charcot-Marie-Tooth disease (CMT), a condition that causes nerve damage.  But despite the challenges the disease brings, John has become a bodybuilder and even came second in the PCA bodybuilding world finals in Malaga, Spain.  John, of Barnsley in South Yorkshire, said: "I joined the gym to feel stronger and to stop falling and tripping as much and I've never looked back.   "I've always been pretty good in myself but around this time I was getting quite thin and weak.  "Because my condition can be degenerative, I really think I would be in a wheelchair if I didn’t find bodybuilding 17 years ago."  John was officially diagnosed with the condition when he was 12.  At the time, doctors told him that he must never lift weights and be very cautious when doing exercise.  John has many of the key symptoms that are characteristic to CMT.  These include numbness and muscle weakness in his feet, ankles, legs and hands, an awkward way of walking (gait) and highly arched feet.  To combat the symptoms as best as possible, John has two pairs of custom made orthotic boots that are designed to fit his feet.  The boots are the only footwear available to him and are constantly going for upgrades and repairs to help John as best they can.  Even with the boots, John describes the daily pain of his condition as a "constant irritation" that won't go away.  He said: "The aches and pains almost feel like you’ve been electrocuted at times.  "In the morning I can't walk on the hard floor as the pain is too much so getting to the toilet is hard.   "I have to wear my boots to answer the door, which can take a while to put on, so sometimes I have to just crawl!  "I have to wear them in the garden as well as the grass is too uneven.  "Within the last two years too I have had to start taking my crutches everywhere too.  "Especially If I go out anywhere that I don’t know what the floor surface is like. I have to have crutches.   "I have mobility scooter to walk the dogs though, they love it just as much as me!"  Despite all of these challenges and the daily struggles, John has pushed through.   He discovered bodybuilding in 2007 and it changed the course of his life forever.  He said: "When I took bodybuilding up I didn’t do it to compete.  "Before the pandemic I thought about it but that hunger only grew even more as we couldn’t use gyms."  John started competing in bodybuilding events in 2022 and he now has three 1st place medals and two 2nd place medals to his name.  He said: "After winning several events, I won a pro card to get me to the PCA bodybuilding world finals l in Malaga where I came second.  "Just to get that experience of going abroad to do it, it’s the pride and sense of achievement."  Looking forward to the future, John is hungry for more competition and aims to compete again next year.

Transcript

00:00 orthotic boots are my lifesaver. A lot of people who've got CMT or muscle wastage conditions

00:07 wear something called aphos but I wear these boots. I was given these three years ago,

00:14 I think it was like late 2020 and what these boots do, the sole is moulded to the shape of my feet,

00:20 so my feet are very arched, my toes curl in and my foot pushes to the outside, so the sole inside

00:27 is moulded to that and then around the boot to stop my foot from rolling, it is reinforced with

00:34 like a metal sheet down there. The boot itself is roughly about a size five and a half because

00:40 my feet pull back where they would be around a size seven or eight, they pull back, they pull

00:45 into a size five. It's got this heel on, it's hard to see but this heel comes out, it's a wider wedge

00:53 which also stops the foot from rolling and it also makes me about an inch and a half taller

01:00 which is always a bonus. From being young we knew there was something very different about me

01:06 because I was falling over, couldn't fit into normal shoes, I was much weaker than the rest

01:11 of the boys at school, couldn't run, I loved to play football but I just couldn't play it,

01:17 you know, we knew that something wasn't right. It took quite a few years for me to get diagnosed

01:22 but at 12 years old I finally went to see a neurologist who diagnosed me with this thing

01:28 called CMT, Charcot-Marie-Tooth and back in 1992 when I was 12 years old there was no such thing

01:34 as Google and we were still dinosaurs walking around so we couldn't go and, you know, have a

01:39 look and investigate what Charcot-Marie-Tooth was, we just took the information from the doctor.

01:45 Struggled through school quite badly, got bullied by, you know, people that were able and they knew

01:50 that I was different, I was walking very different, I remember getting called slug feet in an assembly

01:56 because we used to have to take our shoes off and you'd walk on this hard floor on the gym floor

02:00 to collect awards. I was very academic at school so I was always winning awards and I hated having

02:06 to get up in front of the other children and walk. So then I left school and I got my first job and

02:12 the world around me has somewhat changed but I then quickly began to realise that the CMT

02:18 was deteriorating so I turned to drink and smoking which I guess a lot of people do when they're 17,

02:25 18 and in their early 20s but I think the drink and the smoking affecting me and my peripheral

02:31 nerves. Three years ago I was given orthotic boots which I will talk about on another video,

02:36 I wouldn't have wore them in my younger years but I wish I had, I wish I'd been told about them when

02:42 I was in my teens because the boots have helped me do so much more in life, get me walking as

02:49 near as normal as I possibly can. So here I am, I've always been embarrassed about having CMT,

02:55 always tried to hide it, it's always been a conversation that I've always struggled with

03:01 but for the last three or four years I've gone public with it and I'm raising awareness because

03:06 people need to know, you know, these could be your friends and your family but there are still people

03:10 out there who have got CMT who feel isolated and nobody should ever feel like that.

03:16 When I first started coming to the gym I used to try and squat using a three-way bar

03:23 and it never went well because I couldn't balance, I didn't have the orthotic boots at the time

03:29 and people would pass comment on to me saying you're not getting deep enough, you're not getting

03:32 low enough, you're damn right I wasn't getting deep and low enough because I've got like really

03:37 deformed feet and really weak ankles and if the smith machine still isn't right for you,

03:42 you can always use a leg press as an alternative and if you still feel unsafe using a smith machine

03:52 you could put a bench underneath so if anything was to happen that will break your fall.

04:01 So for me to use a smith machine I like to keep my feet fairly narrow, just a little bit more

04:08 narrow than shoulder width apart, slightly in front putting more dominance onto the quads,

04:15 keep your head facing forwards, lift the bar and when you go down nice and slow,

04:24 legs parallel with the floor and back up keeping a nice velocity of movement.

Man with genetic disease defies odds - to become bodybuilder

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