Thomas Hynes, a 33-year-old former IT technician from Grimsby, has warned men not to ignore early signs of illness after his delay in seeking medical help cost him an early diagnosis of motor neurone disease.
Hynes initially dismissed the pain in his knees and ankle in September 2022 as a running injury. He began tripping over more frequently as his foot dropped, but admitted he avoided the general practitioner's surgery because he was acting like a "typical man".
"I was a very typical man about my symptoms," he recalled. "I ignored them for as long as possible until my wife eventually forced me to go."
"The turning point came when we were walking our dog on the beach and I realised I couldn't run, no matter how hard I tried," he said.
His general practitioner originally suspected a muscular problem and prescribed physiotherapy, but his condition continued to deteriorate.
Nine months later, in June 2023, he was unable to walk the grounds at his wedding and struggled to use the stairs.
Diagnosis and anxiety
Doctors conducted a barrage of tests that included blood tests, MRI scans and lumbar punctures. On November 22, at the age of 31, he was diagnosed with motor neurone disease and given three to five years to live.
His 31-year-old wife, Jade, broke down when they were first told he might have the condition.
"I remember her breaking down in that tiny doctor's office and I wrapped her in my arms as she cried," he said. "I don't think the news really hit me at that moment."
"But every single appointment became more anxiety-inducing as it grew clearer that this wasn't a simple fix," he added. "Not having answers was excruciating and I felt completely helpless as the tests kept piling up."
The couple had been actively trying to start a family and maintain a normal life between his medical appointments.
"I know it sounds cliché, but time truly slowed down," he recalled of the diagnosis. "I just broke. It is an indescribable feeling to be told that you are going to die and that you will suffer every step of the way."
"We just broke down when we got home... lots of cuddles, lots of crying," his wife added.
Following the diagnosis, he began experiencing severe anxiety attacks. Jade, who was working as a veterinary nurse at the time, reduced her hours to support him.
"There was one time he actually came to work with me for half a day... because every time I left the house, there were quite a lot of panic attacks," she said.
Doctors are now focused on managing Hynes's symptoms, but his mobility is restricted to turning his head and wiggling his toes. He can no longer speak and relies on a device to help him breathe.
Living with motor neurone disease
Motor neurone disease gradually destroys the brain cells that control movement, resulting in muscle weakness, paralysis and eventually death. The incurable condition famously affected the scientist Stephen Hawking.
About 5,000 people are believed to be living with the disease in the UK, the majority of whom are men. It typically develops between the ages of 50 and 70, although it can strike earlier.
"Every stage of this illness is a new mountain to climb," he said. "It is painful, terrifying, and humiliating all at once. You think things surely can't get worse, but somehow they do."
"My home is filled with medical equipment now. There's a machine to help me breathe, one to assist with coughing, a ceiling hoist, and an eye-gaze computer," he added. "The list goes on, and every single item is essential for basic survival and communication."
The disease has gained attention following high-profile diagnoses among actors and elite athletes, prompting questions about why healthy young men in peak physical fitness appear increasingly to be struck down. Recent cases include rugby stars Rob Burrow and Lewis Moody, former England cricketer David Lawrence, and Grey's Anatomy star Eric Dane, who died from the disease in February aged 53.
Financial strain and future hopes
The couple's challenges are compounded by Jade's own health issues. Now running a bakery business, she has been diagnosed with Evans syndrome, a rare autoimmune disease where antibodies mistakenly attack the red blood cells that carry oxygen around the body.
Although she has experienced periods of remission, she has been in and out of hospital for extreme fatigue over the past two years.
Financial worries continue to consume the couple, and Hynes was forced to draw his pension early to make ends meet. They have launched a GoFundMe campaign to raise money for bills, specialist medical equipment, and to create "as many meaningful memories together as possible."
"It offers us a chance to focus on living rather than just surviving," he said. "We try to make the most of our lives. We do it, and we do it together."
He hopes a treatment will be found, if not for himself, then for future patients.
"In a perfect world, my dream would simply be to grow old alongside my wife," he wrote. "That is all I want. I want to make as many beautiful memories with her as I can without the constant, overwhelming shadow of what comes next."
