James Smith, 41, is halfway through his predicted prognosis of 10 years after being diagnosed with an incurable disease at age 36. He is determined to travel the world and make memories with his family.
James, a father of three from Bournemouth, was diagnosed with motor neurone disease (MND) after noticing an "innocent twitch" in his bicep and tricep following a run. The twitch progressed to weakness and loss of control in his limbs. According to the NHS, MND is a progressive, life-shortening, and incurable condition that damages parts of the nervous system and causes muscle weakness.
Since his diagnosis, James has lost all dexterity in his hands, his wrists have become "completely limp," and he is unable to feed or dress himself. He has also had "a number of falls" and is likely to become a full-time wheelchair user in the coming months.
Receiving the diagnosis
James, who lives with his wife of 17 years, Carly, and their three children aged 10, eight, and five, described receiving his diagnosis in June 2021 as "awful." He faced the prospect of having just 10 years left to live as the disease progressed.
He said: "I'm not going to beat around the bush: It was awful. My wife burst into tears. She was heavily pregnant with our little girl at the time. I'd just started the dream job that I've always wanted, and he's telling me that I've got motor neurone disease."
James was told his life expectancy was around 10 years, "which is over double the average lifespan," due to his age and the slow progression of his condition. He said: "I'm halfway through the journey now, of this 10 years, so I'm just going to make the most of it."
Symptoms and diagnosis journey
James's symptoms began in September 2019, when he noticed "an innocent twitch" in his left arm after coming home from a run. He showed his wife, and they thought nothing of it, attributing it to adrenaline. But over time, he noticed his left arm becoming weaker during runs.
He said: "I remember holding my arm up in front of me, and it would just drop. It prompted us to go: 'That's not right, let's book a doctor's appointment', and the journey started from there."
James had blood tests before being referred to a neurologist. He carried on with his regular life, "trying to not think of the worst case scenario." He said: "My nan unfortunately had motor neurone disease as well, so you're thinking in the back of your mind: 'Is it this?', and you're Googling everything."
In March 2020, James had an appointment with a neurologist, where he had an MRI scan and an EMG test, which measures electrical activity in muscles to find nerve and muscle damage. The first results came back inconclusive, and he was advised that "only time will tell" and asked to return in three months for follow-up tests. However, the UK entered a national lockdown the following day due to the Covid pandemic, and James ended up waiting six months to be seen again. He was furloughed from his job, then made redundant, and decided to retrain as a barber, a job he had always wanted to do.
He said: "One of the things I've noticed with MND is it makes you realise you need to do the things you want to do now, rather than wait for something like this to make you do it."
Adapting to a new way of life
After qualifying as a barber, James began working full-time in a barbershop. He loved the work, but the dexterity required made him notice other changes. His right arm began twitching, and he noticed deterioration in the dexterity of his hands. In September 2020, he had his follow-up appointment and a second EMG test. His diagnosis was confirmed in June 2021.
He described the appointment as "awful," particularly as his wife was heavily pregnant and he had just started his "dream job." However, due to the long delay before confirmation, he had begun to "come to terms with it."
In the five years since, James has adapted to a new way of life, with declining physical capabilities. He misses being able to work but is grateful to be at home with his children. He said: "The last year has probably been the toughest. I'm struggling to feed myself. I can't hold cutlery, and now my neck's got weaker, it's affecting my swallowing and my chewing… (My wife) has to dress me now, she has to undress me, I'm at the point where I might need help showering. I had to give up my driving licence, I can't drive anymore. My right leg is unfortunately going as well, which has prompted a number of falls that I've had in the last six months – some more scary than others – and I know that I'll probably be in a wheelchair in the next month or two to help me keep safe."
James has found "purpose" in sharing his experience on social media, using Meta glasses to raise awareness of living with MND from his point of view. The AI glasses allow him to film, take photos, make calls, and send messages hands-free. He said his videos "put people in my shoes," adding: "Knowing what it's like to not be able to pick up something you've dropped on the floor, or trying to do your shoelaces up, or even simply walking out my front door and trying to lock it."
