“People stare when you’re out in public”

Jimmy, who is married to Caroline (51), worked in construction for most of his life, before changing career to work with Sky TV for nearly 10 years. However, he decided he wanted to get back into the construction world and got a job welding at a local recycling centre in October 2015. Six months later he was off on long-term sick because of his progressive symptoms, not yet knowing the cause.

Jimmy met Caroline, a chef at West Lothian College, in 1991 and together they have two children Carol Anne (31) and Cameron (24), and two grandchildren, Logan (11) and Olivia (4).

Although the initial shock of Jimmy’s diagnosis devastated the close-knit family, they have pulled together and taken the changes to Jimmy’s abilities in their stride.

Now wheelchair bound and losing his ability to speak, Jimmy first noticed something was wrong in January 2016. He said, “I had not long started my new welding job so I assumed it was something to do with that. It started with my left hand; I noticed it was getting weaker.

“When I went to the doctor they thought it was the tendon’s in my hand. I had an operation years before that; I think it happens because of the construction and machinery work. But when I went to see the plastic surgeon he realised it was something different and sent me to a neurologist.

“By this time I was starting to trip a lot and noticed my legs getting weaker. I went off work sick in May 2016 and did exactly what you aren’t supposed to do. I googled my symptoms and self-diagnosed myself with MND. So, when I was told, it wasn’t a massive shock. It doesn’t make it any easier to hear though.”

After six months of tests to eliminate other conditions, Jimmy was diagnosed with MND in December 2016 and since then his symptoms have rapidly progressed. Despite this, Jimmy and Caroline remain positive and Jimmy hasn’t lost his sense of humour and love of life.

Caroline said, “I am not saying it’s not hard and that we don’t have our bad days, but we don’t want MND to define us as a family. When I found out I was hysterical. But we just take it one day at a time and take each new challenge as they come. It’s a different way of living but we do our best. We are all a fun and positive bunch of people and we keep it this way as much as we possibly can. It’s not all rainbows but we manage and we are happy. That’s what’s most important.”

Jimmy said, “I think I have accepted my diagnosis fairly well. I don’t dwell too much on what’s to come. You just have to deal with the hand you’re dealt and do the best you can.

“I live in the now and am enjoying spending time with my family, and watching the football of course. I love people and talking, and definitely haven’t lost my will to wind people up.

“Our kids are amazing. They live close by and are a great help. The grandkids light up my day. Olivia just comes and perches herself on my armchair. She’ll even lift my hand to make me wave – she’s hilarious. She helps feed me biscuits and is very gentle. Logan is a bit older so he has more of an idea of what’s going on. He has the responsibility of making my tea/coffee when he’s here, which is very important.

“The thing about MND is, it’s frustrating. I was a big guy; a strong guy. You keep trying to do everything for as long as possible, because once it goes that’s it. It’s not painful, it’s just frustrating not being able to do the simplest things I used to. We have an amazing bunch of family and friends around us though and they are always willing to lend a hand.

“I have had to stop fishing and playing snooker. I can’t play football but I can still watch it. I’m a huge Airdrie supporter but don’t get out to matches as much as I would like because transport isn’t easy. Instead the family come to our house to watch it and we have a great time anyway.”

Caroline and Jimmy have received support, not just from friends and family, but from the charity MND Scotland, the NHS and West Lothian Council.

They said “In relative terms we have been extremely lucky. Our GP is great, our MND Clinical Specialist, the carers, the council. Everyone has been brilliant.

“MND Scotland has been fantastic too. We go to the local support group and have made friends with people we now meet up with outside of the group. We’ve used the complementary therapy service for massages, and had help with our benefits forms.

You just know they are always there on the other end of a phone wanting to help.”

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

Jimmy said, “I think people stare when you’re out in public. They see the wheelchair and the neck brace and are obviously looking and wondering what’s wrong. Or at the beginning people thought I was drunk. I was stumbling and my speech was slurred, so that’s the conclusion people would jump to.”

Caroline added, “We’d be out for dinner, before he was in a wheelchair, and I’d still have to feed him because his arms were too weak. People would look, but Jimmy’s attitude is ‘it’s their problem, not mine’.”

Jimmy finished, “If there’s anything I can do to raise awareness or help find a cure I will. I’m up for anything and have already done a few bits of research. I know it won’t help me but it might help those who are coming behind me. If we don’t then there will never be a cure.”

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