The first thing you notice about Ian Flatt is his broad grin, the second his stubborn determination not to be defined by the disease that is taking his life.
Father of two Ian, 55, was diagnosed with Motor Neurone Disease in 2019 – just months before Leeds Rhino’s rugby league legend Rob Burrow revealed he was suffering from the same disease.
It took a year for Ian to get the diagnosis and by then he had narrowed down his symptoms to two possible conditions,
“I’d started with some spasm in my right hand back in April 2018 which at first we thought was golfer’s elbow and then I started to struggle with my breathing and became extremely tired – I started to need a rest even after just having a shower.”
For a fit man like Ian, who lived life at 100mph, it was frustrating.
The doctors thought his symptoms indicated he could have cancer. “But I knew I didn’t have cancer. I knew I either had Multiple Sclerosis or Motor Neurone Disease,” says Ian, from Green Hammerton, North Yorkshire. And so when he eventually got a diagnosis it didn’t come as a huge shock to him although it did for his wife Rachael and daughters Charlotte, 20, and Iseabail, 16.
“When the doctor told me I did say I was hoping you were going to say MS. I then asked him how long I had got to live and what was going to happen to me. He started giving me averages, as they just don’t know as MND progresses differently in everyone. I said he was no use to me and I needed to spend time with my family. This is our journey.”
It is this, some might say, stubborn attitude to the disease that has allowed Ian to take on a gruelling 100-mile trek across the Yorkshire Dales in the first a number of challenges he and his family have planned for this year, despite him spending 16 hours a day on a respirator.
“If I am unable to do something then I just take a minute and we find away round it. There is no point feeling sorry for yourself.”
His positivity is infectious despite being told someone with his type of MND could expect to survive on average 18 months.
“I have never for one minute said why me? What is the point in that. It is a waste of time. When my condition does change I go into my study, listen to music – it might take one song or 10 – to give me time to process it and then we move one. In many ways I feel lucky. I can still communicate with my family.”
A normally private family, the Flatts were so moved by the help and support they have been given by the Motor Neurone Disease Association and St Michael’s Hospice in Harrogate that they wanted to do something to help.
“Immediately after the diagnosis I just wanted to spend time and make memories with my family,” says Ian. “But then I wanted to do more to help other people. We have been so lucky with the help from the MNDA with accessing equipment – most if it even before we know we need it and the hospice has been amazing, especially their pre-bereavement support service Just Be with helping Issy that I wanted to do something more.”
He talked to a group of MND patients which made him realise that not everyone was as lucky as he was, he says. But then the pandemic hit and face-to-face support had to stop, although Ian is still more than happy to talk to other people living with MND.
They then came up with the idea of a trek to raise awareness of the two charities that have made a huge difference to their lives.“We have always loved walking and we have some real family favourites such as Fountain’s Abbey and Bolton Abbey,” says Ian.
The 100-Mile Trek is a succession of 20 walks that started on May 26 and concludes at Bolton Abbey on Saturday.
“I have taken a lot of time poring over maps trying to find routes that my wheelchair would manage, that didn’t have stiles or fords. We also had to break them down to around six miles each as we weren’t sure how long the battery would last.
“Our friends have checked out the routes for us and even added some others. It has been tough at times but I have thoroughly enjoyed being out in the beautiful Yorkshire countryside with friends and family.”
One of the problems with MND is that the muscles never repair so by pushing himself so hard he is in some ways accelerating his decline.
“It is hard,” says Rachael. “But I know Ian and there is no way he would be able to spend all day watching television. It is just the way he is. He will keep doing this for as long as he can.”
MND affects the nerves in the brain and spinal cord. As the disease progresses, messages from the nerves are disrupted and eventually stop reaching muscles, leading them to stiffen and waste. The disease can dramatically impair people’s ability to move their limbs, talk, eat and breathe. While about 10 per cent of cases are inherited, the remainder are caused by a complex interaction between genes and the environment. There is no cure or treatment.
Studies have suggested the risk of developing MND is six times greater in professional footballers compared with the general population. A number of sportsmen such as Rob Burrow, rugby union’s Doddie Weir and the footballer Stephen Darby have raised the profile of the condition. Ian fears his MND could have been triggered by impact sport such as boxing that he participated in when he was younger.
Saturday doesn’t signal the end of Ian Flatt’s challenges. He intends to take on another 100-mile trek, this time across the Yorkshire moors to Whitby raising money for Dr Jung and the work she is doing for people with MND at Leeds General Infirmary, ending in a Flatt Family skydive. If anyone can then Ian Flatt can.
To follow Ian Flatt’s journey visit www.100miletrek.com/
To donate visit https://uk.virginmoneygiving.com/100miletrek
Ian is hoping to smash his £10,000 target and he has already raised £9,700