Mężczyzna z chorobą neuronu ruchowego

WORDS BYLINE: Vanessa Papas A married dad of three from Dorset has shared how a twitch in his left arm turned into a harrowing journey with a rare, progressive, and terminal disorder. In June 2021, James Smith of Bournemouth, then a healthy and active 36-year-old, was diagnosed with Motor Neurone Disease (MND), which affects the nerves that control your muscles. Before his diagnosis, James ran half marathons to raise money for the MNDA. Now, despite the challenges posed by his condition, he continues to support the charity by concentrating on advocating and raising much needed awareness by sharing his journey on his social media. "I was training for a half marathon, which I used to do pretty often. I came back home from a run one night and noticed this weird twitch in my left arm," recalled James. "I figured it was probably just adrenaline or maybe a trapped nerve." It wasn't until a few weeks later, when James's arm began to feel heavier and slightly weaker that he decided to see a doctor. "The doctor did a blood test and the results indicated something unusual about the protein in the blood, so I was referred to a general neurologist," explained James. "After an MRI came back fine, I had an EMG test. It was a painful procedure. The neurologist stuck needles into my muscles to see how well the nerves were working." The results of the EMG were inconclusive. James was told to go home and wait another three to six months before having his symptoms re-assed. But when the Covid-19 pandemic hit and the UK went into lockdown, his condition worsened. By the time restrictions lifted - and James returned to work as a barber - his right arm - and right hand - had started twitching too. It took several more months and more testing before James finally received the diagnosis he had feared. "When I was told it was Motor Neurone Disease it felt like the world was caving in on me," he admitted. "I was at the hospital alone, so I had to process it by myself. It was brutal. I remember walking out of the hospital and calling my wife, Carly. I broke down crying on the phone. It was the first time I'd cried in years. I didn't know how to tell her, and I didn't know how we were going to manage." The neurologist recommended a second opinion, but deep-down James already knew the reality of his condition. "There's always that sliver of hope that the doctors might have got it wrong, that maybe it's something else. But after seeing multiple specialists, I was finally diagnosed with limb-onset ALS, a form of MND that starts in the limbs and progresses throughout the body," he noted. "I asked the doctor how long I had, and he said, 'In my experience, I think you've got at least 10 years, if not decades.' It's not a lot, but compared to the average life expectancy of two to five years for people with MND, I consider myself lucky." He has had to make significant adjustments to his daily life and these days is primarily a stay-at-home dad, caring for his three children - Harry, eight, George, five, and Rosie, two. He continued: "I used love working as a barber but about two years after my diagnosis, I had to give it up. My arms couldn't handle it anymore. My wife has to help me with basic tasks like putting on my coat. Even holding a pen or typing on a keyboard is exhausting." Before his diagnosis, James ran half marathons to raise money for the MNDA. Now, despite the challenges posed by his condition, he continues to support the charity by walking every day. He was also recently invited to speak in the Houses of Parliament by the All Party Parliamentary Group and is even involved in this year’s BBC Lifeline Appeal for the MNDA. "I'm not going to lie - there are days when it's really hard, and I feel like giving up. But I've learned to focus on what I can do, not what I can't. I know MND is a terminal disease, but I'm going to keep fighting for as long as I can. I've got three beautiful kids and a wonderful wife to live for, and I'm going to make every moment count." James has recently adapted the family's two-up, two-down terrace house to accommodate his declining mobility and couldn’t of achieved this without the generosity of people’s donations to his family’s Go Fund Me page, as well as the support from charities such as the Motor Neuronee Disease Association. For more on James’s journey, you can follow him on Instagram, TikTok, YouTube, and Facebook. Featuring: James Smith Where: Dorset, United Kingdom When: 02 Oct 2024 Credit: James Smith/Cover Images **EDITORIAL USE ONLY. MATERIALS ONLY TO BE USED IN CONJUNCTION WITH EDITORIAL STORY. THE USE OF THESE MATERIALS FOR ADVERTISING, MARKETING OR ANY OTHER COMMERCIAL PURPOSE IS STRICTLY PROHIBITED. MATERIAL COPYRIGHT REMAINS WITH STATED PHOTOGRAPHER AND/OR SUPPLIER.**