I put off seeing GP for knee and ankle pain as I married & started a family – it was first sign that I have 5 years left

A MAN who was suffering from ‘standard’ knee and ankle pain was shocked to discover it was a symptom of a degenerative disease. Thomas Hynes, 33, initially put off seeing the GP like a “typical man”, despite his wife’s pleas. Thomas Hynes, pictured with his wife Jade, was diagnosed with motor neurone disease when he was just 31 Credit: PA Real Life He had been suffering from knee and ankle pain, but put off seeing the GP until symptoms got much worse Credit: PA Real Life But when he started struggling to walk, he had “every test imaginable” and was diagnosed with motor neurone disease (MND) in November 2023, aged 31. The newlywed was heartbreakingly told that he has just three to five years to live. Sign up for the Health newsletter Thank you! Thomas is now almost completely paralysed and unable to speak due to the disease. He said: “I remember my wife breaking down in that tiny doctor’s office and I wrapped her in my arms as she cried. “I don’t think the news really hit me at that moment.” MND is an incurable, life-shortening condition that causes progressive muscle weakness which gets worse over months or years. According to the NHS, the disease rarely affects anyone under the age of 50. Initial symptoms include twitches, spasms or muscle cramps, stiff or weak hands which can cause problems holding things, and weak legs and feet, making you trip over a lot and finding things like climbing stairs difficult. Most read in Health As MND gets worse, people may have problems breathing, swallowing and speaking, have changes in their mood and personality and be unable to walk or move. The MND Register estimate that the disease affects about 5,000 people in the UK at any one time. Thomas met his wife Jade, 31, through a mutual friend in 2013 and the couple got engaged in 2019. Nine months before their wedding, in September 2023, the former IT technician began struggling to walk and tripping over things due to his foot starting to “drop”, Jade said. Thomas, now 33, can barely move his neck or toes and needs a device to him him breathe Credit: PA Real Life His wife has been his primary caregiver since the summer of 2025 Credit: PA Real Life She encouraged him to go to the GP but Thomas says: “I was a very typical man about my symptoms – 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.” At the GP appointment in May 2023, his doctor believed it might be a muscular issue, so Thomas underwent physiotherapy, but he said things “kept getting worse”. By the time it got to the couple’s wedding in June, Thomas was not “able to walk around the grounds” of the venue and Jade said it was “quite difficult to watch him struggle”. Over the course of the next six months, he was sent for around 20 different tests, including MRI scans, blood tests and a lumbar puncture. Speaking about this ordeal, he said: “Every single appointment became more anxiety-inducing as it grew clearer that this wasn’t a simple fix,” he explained. “Not having answers was excruciating and I felt completely helpless as the tests kept piling up.” It wasn’t until November 2023 – when Thomas and Jade were “actively trying to have a family” – that doctors confirmed he had MND. Thomas said: “I know it sounds cliche, but time truly slowed down, and his voice faded into a muffle. “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.” Jade, a veterinary nurse, said she reduced her hours at work “straight away” because Thomas had “severe anxiety attacks” immediately following his diagnosis. Now, Thomas can barely move his neck and toes, he needs a device to help him breathe and his voice is “barely intelligible”. Doctors have been focusing on managing Thomas’s symptoms since his diagnosis. Describing the process, he said: “Every stage of this illness is a new mountain to climb. “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: a machine to help me breathe, one to assist with coughing, a ceiling hoist, and an eye-gaze computer. When Thomas was first diagnosed with MND, he was told he had three to five years left to live Credit: PA Real Life How is motor neuron disease treated? Medical research is yet to find a cure for the rare illness, and there are no therapies to reverse or halt the progression of the disease. Despite this, there is some treatment that can help those with motor neurone disease have a better quality of life, as well as helping with their mobility and bodily functions. For those who struggle with respiration, a breathing mask may be prescribed. Riluzole is a medication that is used to help people with motor neurone disease, although it doesn’t prevent the condition progressing. As it stands, this treatment has only shown a very small improvement in patients’ survival. For more information, visit the MND Association’s official website. “The list goes on, and every single item is essential for basic survival and communication.” Thomas’s wife now works just one day a week as a veterinary nurse to be able to support him as his primary caregiver, but has started a baking business since reducing her hours. Jade, however, has her own medical issues and struggles with a rare, chronic autoimmune disorder called Evans syndrome. She has been admitted to hospital three times in the last two years due to “extreme fatigue” from the condition. Thomas requires an accessible mobility van to get to appointments, but had to cash out his pension early to afford it. The couple have set up a GoFundMe page to help with their bills, specialist medical equipment and creating as many memories as possible together. “It offers us a chance to focus on living rather than just surviving,” Thomas said. Speaking about the future, he added: “I hope an effective treatment is found soon – if not in time for me, then for the people who will be diagnosed after me. “In a perfect world, my dream would simply be to grow old alongside my wife. That is all I want. “I wish to make as many beautiful memories with her as I can without the constant, overwhelming shadow of what comes next.” Comment now