Gordon shares his story with Motor Neurone Disease for MND Awareness Week

Gordon Reid (58), from Luncarty in Perthshire, is speaking out to help challenge some of the misconceptions around Motor Neurone Disease (MND) and to raise the profile of the condition during MND Awareness Week.

Gordon, a former manager at a Perth-based motor retailer, is married to Carol (57). The couple married in Stanley, Perthshire in 1979 and they are parents to Sara (34) and Clare (29) and grandparents to Hannah (10), Owen (8), Emma (7) and Leo (4).

The family’s lives were turned upside down in February 2017 when Gordon was diagnosed with MND.

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.

Prior to his diagnosis with MND, Gordon was well-known for his active lifestyle, including walking, hiking, shooting and motor biking. Today his condition means that he struggles with everyday tasks such as walking and buttoning-up his shirt.

Gordon said: “We noticed the first symptoms in September 2015 when we came back from a holiday in Crete. On the holiday I was totally fine, I could carry a big six-pack of 2l bottles no problem, but a week after we came back I was out for a walk down by the river and I realised my foot was dropping.

“I thought I had just strained it, so I started doing exercises. That went on for quite a bit before I went to my GP. They then put me in to Ninewells Hospital, where they X-rayed my back and the specialist there kept saying that it should be my left leg that has the problem because I have a disk damaged, but it was clearly my right one.”

During this time Gordon was finding that he was under increasing strain and scrutiny at work.

“I went to the doctors again in 2016 and at this stage my work was shocking. They were investigating me and they asked to see my records. When my doctor wrote a letter to explain what was going on with me, my director said ‘what this woman has written is rubbish”. He told me that, if I went to court, a good solicitor would tear apart what my doctor had written.

“Before any of this happened, Access to Work came in and did an assessment. When I gave it to my directors, one of them said to me ‘what do you want me to do with this? You sort it.’ So I put things in place and it was totally ignored.

“During this time, I was expected to cross a main road to be able to do my job effectively. This was expected even after having a couple of falls within the work place.

“I was so exhausted having to deal with work, that my weekends were totally written off, so we decided that enough was enough. I went to my doctor and I said that they needed to do something. I was at my wits end; I was really depressed. While I was there she wrote a letter to Ninewells and within a week I was back in the hospital for a full week of intensive tests.

“I took a week off, using my annual leave to avoid any further confrontation. But this time I was visiting a hospital ward with people in wheelchairs and with breathing tubes. It was on the second day that it clicked – I know why I’m here.”

“I was really depressed while I was in the hospital and so I phoned one of the directors on his mobile to say I needed help. The answer I got was ‘no – I don’t want involved in it’. There are 4 Directors and a Managing Director and they’re all yes men. They’re supposed to be there to protect staff, not just to make money. They have to make sure their staff are alright and I was breaking down on phone with him, I was really at my end at that point.”

Gordon was later signed off from work due to work-related stress. It was in February 2017, shortly after returning to work, that Gordon was told that there was a 90% chance that it was MND.

“I was on my own when I was told. When I was walking out of Ninewells I was hoping I had cancer – that way I might have a fighting chance. I thought by the time I got back to the car that I would be okay, but I wasn’t. I was broken at that point. I phoned Carol in the car and told her the three things it could be, leaving MND until last. I could hear by Carol’s reaction on the phone that she knew which of the three it was.”

Carol said: “Once we were told for sure that it was MND, there was no point in Gordon staying on at work – the treatment was horrible. He was meant to have a phased-in return and that lasted all of one week. They weren’t prepared to do that, they weren’t prepared to let him go to part-time, so time to hang up.”

Gordon said: “My managing director called me at 4 o’clock on the Friday after I was diagnosed and apologized – he claimed he didn’t know I was in the hospital even after receiving a copy of the letter confirming my date of admittance. They quickly changed their tune in case I took them to court.

“I still have people asking me why I didn’t take the matter further, but by that time I was too tired and had no fight left in me. The saddest part for me is that I was there for 34 years, 28 as a manager. I built the bodyshop up, from just two guys to over 12 today. I feel I had a successful working career and for it to end the way it did was really hurtful for me and my family”

In addition to the workplace stigma and discrimination, Gordon has also had to deal with more common misconceptions around MND.

Throughout MND Awareness Week, MND Scotland is running a campaign to help highlight and challenge some of the misconceptions that exist around the condition.

Carol said: “There are unfortunately a lot of misconceptions about MND. I was surprised by the number of people who thought it was curable. So few people have MND that people take a step back and they don’t want to ask.

Gordon said: “Other times you’ll say MND and people will look at you like they’re going to catch it from you. Quite a few of my friends are on the medical side, so I’ve had a bit of a laugh with them about it. I say: ‘I’m celiac, so I’ve got celiac disease – you can’t catch it from me. I’ve now got MND – you can’t catch that from me either. I’m now on the lookout for the third disease that can’t be passed on”

Despite his diagnosis, Gordon and Carol have made a conscious effort to remain as positive as possible.

“The hardest part was the initial shock. After that I started to think that I can’t do anything about it. All I can do is hope that Carol and the kids are great.

“A few weeks ago we had a doctor in the house to talk about ventilation and when he got up to leave he said ‘this is the happiest house he’s been in’. That one comment meant everything to Carol, because we all know what the end result is going to be, but we love a laugh and we like to put a smile on folk’s faces. I was especially chuffed because my youngest daughter was here with Leo at the time.”

Carol said: “We have our bad days, but we’re always setting each other up for a laugh and trying to stay positive – and we get that from everything we get from the whole team at MND Scotland. Their commitment is amazing and they have been a great support.”

Gordon said: “From day one I’ve said that I’m on a journey. I’m not on it alone, I’ve got Carol, my daughters, my son-in-laws, grandkids, my brothers, my friends. I’m going to go on living as happy a life as I can.”

Visit mndscotland.org.uk/MNDaware for more information about MND Scotland’s ‘Myth-Busting MND’ campaign.

If you have a story you’d like to share, please get in touch with Niamh Callan and Craig Watson in the Communications team at communications@mndscotland.org.uk.