A father-of-two diagnosed with Motor Neurone Disease (MND), who says his “body is dying day by day”, is urgently calling for more funding and research into a cure for “this horrific disease”.
David Scott, 60, from Leicestershire, received his diagnosis of MND – a terminal, progressive neurological condition causing muscle weakness – in February 2024.
His symptoms began with struggling speech.
A former construction manager and avid footballer and golfer, Mr Scott, known as Davy, admitted his knowledge of MND was limited at the time. However, he “knew it was a terminal illness.
At the time of diagnosis, he was given two to four years to live.
Mr Scott said it has taken away the job he loved, his ability to eat, meaning he has lost five stone, and his ability to have a conversation – and in the next month or so, he believes he will no longer be able to walk.
He uses a feeding tube for food and medication, along with an iPad as a communication aid, and he said he is “80 per cent dependent on his wife Claire and (his) carers”.
However, Mr Scott, who has two children – Nathan, 34, and Megan, 24 – is determined to “help as many MND sufferers and their families as possible” and, using the power of photography, has created a portfolio to showcase the realities of his diagnosis, such as pictures of him using his feeding tube.
He told PA Real Life: “It’s an emotional rollercoaster as you have good days and bad days.
“However, the hardest thing to deal with is the frustration.
“You know what you want to do, you know what you want to say, but you can’t. Your body is dying day by day, bit by bit, and you have no control over what direction it takes.
“There are days and nights where I cry and ask, ‘Why me, but why not me?’, but there are no answers.
“There are times when you wish you were not here and not causing the pain and suffering that your family and friends are going through because of my illness.”
Born in Edinburgh, Mr Scott was a keen footballer and said he had trials with the Hearts and Hibs clubs in the Scottish capital, with now-retired football manager Alex Ferguson even knocking at his door when he was “a young lad”.
However, he went on to become a joiner, working for various companies and as a construction manager, and in his spare time he enjoyed seeing friends and was “always up for a laugh”.
Before his MND diagnosis, he said he had experienced “no health problems and was relatively fit”, until he started having chest pains in 2021.
Although he was “given the all-clear” at hospital at the time, he said follow-up appointments led doctors to believe he had a “slight narrowing” of one of the main valves in his heart.
In June 2023, however, a friend thought Mr Scott had experienced a minor stroke as his speech was slightly slurred, but when he called for medical advice, he claims a receptionist accused him of “drinking”.
“I ended up going private, but I did have my appointment with my heart consultant in November 2023,” he explained.
“After some tests she did with me at the time of my appointment, she confirmed that there was something wrong and that I needed to see a neurologist ASAP.
“I said that I had tried to explain this without success and was accused of drinking.”
After being referred to see a specialist by his GP, Mr Scott underwent further tests and scans and was told on February 20 2024 that he had MND.
Apart from seeing the occasional clip on TV about former rugby league player Rob Burrow, who died of MND in June 2024, he said he knew “nothing” about the condition.
“I had undergone a couple of tests and I just knew that it wasn’t going to be good news,” he explained.
“Luckily, my wife Claire was with me at the time when I was told. You could have blown me down with a feather.
“I knew it was a terminal illness and there was no cure or treatment, so I asked the question, ‘How long do I have to live?’, and I was told between two to four years.
“I called family and broke the news, and Claire and I met my mate Justin and his wife Karen in the pub and discussed my future.”
Mr Scott has described the toll of his diagnosis as “a living nightmare”.
Previously 15 stone, Mr Scott now weighs around 10 stone, and said he can no longer talk, eat or drink by mouth.
He stopped working in October 2024 as he was finding it harder to speak, and now relies heavily on Claire and his carers.
He said he is taking the standard medication, receives support from Loros Hospice and The Matt Hampson Foundation and sometimes has an appointment with a speech therapist and dietitian.
However, he feels there needs to be more “specialist support” for MND patients.
“The mental and emotional battles that I have on a daily basis (are the greatest challenges),” he explained.
“You keep things to yourself as you don’t want to worry others, and with my disability and mobility, you know that it’s only going to become worse.
“The lack of knowledge within the healthcare system and lack of support from the Government (is another challenge).
“I don’t want others and their families and friends to go through what my family, friends and I are going through.”
Mr Scott said he and others have raised around £60,000 to help support MND research and the MND Association charity with events including walks, golf days, cycling and a music festival.
With the support of a professional photographer, he has captured honest pictures about what every day looks like with MND to help raise awareness.
His portfolio includes images of him being fed through a percutaneous endoscopic gastrostomy tube, which carries liquid food straight into a person’s stomach, and using equipment to help him breathe.
Mr Scott explained: “They say a photo can say a thousand words.
“The pain and the suffering come through the photos.
“MND has been devastating for me and my family, it has been aggressive, and the only way to show the impact it has had on me is through these pictures.”
He said he has “always been the first to help others when required” and is now urging others to “enjoy life” and make happy memories, as life is short.
He is calling on the Government for greater support, funding and research into MND, as he does not “want anyone else to go through what (he’s) going through now”.
He said: “I may not have long left to live, but I’m not just going to sit and wait.
“The Government needs to contribute more into helping find a cure for this horrific disease.
“It’s not down to one person, it’s down to all of us working together as a team.
“Together we can and we will make a difference.”
A Department of Health and Social Care spokesperson said: “David’s sad experience, as his condition has progressively worsened, shows how cruel motor neurone disease can be.
“It has a devastating impact on people’s lives and we are determined to find a cure.
“This Government will continue to fund high-quality research into motor neurone disease through the National Institute for Health and Care Research.”
To find out more, visit Davy’s website at mymnd.co.uk or the MND Association website at mndassociation.org.
For mental health support, call the Samaritans for free on 116 123, email them at [email protected], or visit samaritans.org.
