Some people ask “can you not get an operation for that?”

Stuart Skinner (62), from Ardgay, in Sutherland, was diagnosed with Motor Neurone Disease (MND) in August 2017. He is now keen to raise awareness of the illness for MND Awareness Week 2018 (18th – 24th June).

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.

Stuart grew up in Glasgow but moved to Ardgay 27 years ago, with his wife Linda (61), to be closer to Stuart’s parents.

Their daughter, Shannon (27), is registered as his Carer, while she studies film production at university. Stuart also has another daughter, Morna, who lives in London and two grandchildren; Cassie (7) and Kitty (4).

A mechanic by trade, Stuart started to experience symptoms in 2015.

He said, “I first started to noticed something was wrong about two years before I was diagnosed. I have been on my feet all my working life and used to walk my two big rescue dogs for miles. While I was out I noticed my left foot wasn’t working properly; I was ‘stomping’ along. Initially I thought I just needed a new pair of boots.

“Eventually I went to the doctor, who referred me to a neurologist, and, after many tests, they hit me with the bombshell; that it was MND. It’s a day I will never forget. Let me tell you, it was a real punch in the gut.

“I had an inkling it was MND before I got the official diagnosis, then I did the worst thing you can do, I googled it. I had heard of MND so I knew it was degenerative and I knew it was terminal.

“I read that the prognosis was 2-5 years but I have heard of people who have had it for 10-15 years so I just have to hope that I have the slow progressing kind of MND.

“I thought MND always affected your speech. You can gather I like to talk; maybe it’s the weegie (Glaswegian) in me. My wife is very fond of saying ‘it’s just as well there isn’t a tax on words or you wouldn’t have any money left’. So, initially we thought it can’t be MND because my speech is fine. I didn’t realise at the time that it can affect people in different ways.

“For me it’s mainly in my left leg. My right leg has started to go but it’s not too bad. I can still drive but I have had to buy a car with an automatic gearbox.

“The worst part I am finding, to be honest, is the frustration. I have always been active and now I can’t stand up to change a lightbulb. I’m just trying to get on with it and I know it’s not easy on my family because I can get a bit grumpy at times. I’m not getting down about it. I’ve got it, there’s nothing that can be done about it and I just have to accept that, and get on with it.”

Stuart was working as an MOT tester when he was diagnosed and had to give up work in September 2017 because of the safety aspects of his job.

“I had fallen a couple of times in the workshop so ended up using a walking stick and then a single elbow crutch. It was getting to the stage where it just wasn’t safe for me or for the other boys. When I go back to visit the workshop, I’m welcomed and still feel part of the team. Don’t get me wrong, I don’t miss getting up at 6a.m. every morning, but obviously I wish I was fit enough to continue to work.

“I’m in my wheelchair most of the time, so even if I do fall now I don’t have as far to go anymore” Stuart jokes. He said “I’m not deliberately putting a positive spin on it, it’s just the way I am. I have always been a glass half full kind of bloke.

“My family have been fantastic. Shannon does a lot of studying at home so she provides a lot of my care. She also helps me retain my interest in cars. She’s helped me with the family cars since she was about 10 so she’s really hands on and does most of the work now because I just don’t have the mobility. If she wasn’t here I don’t really know what we would do – I don’t think Linda and I would be able to cope without her. We have a very large garden and she looks after that too. I don’t think it would be safe letting my wife loose on the ride-on-lawnmower,” he joked.

“One of the worst things for me is not being able to walk my dogs. I loved walking my dogs; I would think nothing of getting home from work and heading out for a couple of hours with them. I just can’t do it anymore. Sometimes I’ll head out with Shannon and Linda to the forest and I’ll wait in the car reading my book, while they take the dogs for their walk.”

Stuart went on to praise the work of charity, MND Scotland, and the support he has received.

“MND Scotland have been absolutely fantastic. I go to the local support group; it’s good to meet other people and share stories. I have used their welfare and benefits service and used their grants service to go away.

“Since I can remember I have had a passion for WW2 aircraft and I have always wanted to visit the Duxford Imperial War Museum. Shannon and I went down and spent a full three days just at the museum. It really exceeded my expectations. The grant from MND Scotland paid for the flights and hotel and I am so grateful. I cannot thank them enough. I felt a bit guilty asking for the grant as it just goes against the grain of what I am used to, but I am so glad we did. It was a trip of a lifetime.”

This MND Awareness Week we launched a new campaign to raise awareness of the stigmas and misconceptions faced by those affected by MND.

Stuart said, “Some people are very ignorant, in the proper sense of the word. They have no idea what MND is and how it affects those who have it, so I have to explain it a lot. Some people ask “can you not get an operation for that?” They don’t understand that there’s nothing that can be done.

“I think especially with Stephen Hawking passing away recently, most people will know he had MND and then automatically think you live for a long time with the disease, when in reality that’s not the case for most people. They don’t realise there are different types of MND, and it affects everyone differently.

“I don’t blame people for not knowing, if they don’t need to know, then why would they? That’s why I am sharing my story and trying to raise a bit of awareness among the public about what MND is.”

Click here to find out more about our Myth-Busting MND campaign.