Gordon Aikman on living with motor neurone disease and leaving a legacy for fellow sufferers

Aikman was diagnosed in June 2014 with motor neurone disease (MND) aged 29, and is acutely aware of one of the grimmest statistics associated with the condition: half of those diagnosed with the muscle-wasting disease die within 14 months. He didn't expect to be here this Christmas and admits life is lived “in fast forward”; he is constantly aware of what he describes as the ticking clock hanging over him.

With this in mind, he and Pike try to focus on the present. And a big part of that for Aikman is the hugely successful campaign he started soon after diagnosis to raise money for MND research and improve the lives of others with the disease.

So far, Gordon’s Fightback has raised more than £410,000 and had a direct impact on improving care for MND patients in Scotland. Aikman’s call for a doubling of the number of specialist nurses was answered. That’s impressive by anyone’s standards. But he isn’t content with that. This is a man in a hurry, and his next target is a living wage for all carers.

You can understand why Aikman is so impatient for change: he is up against a disease that is relentless. There is no cure for MND, which gradually weakens every muscle by attacking the brain and spinal cord, and few treatments slow its progress or ease the symptoms. The prognosis is bleak – patients usually become totally incapacitated by the end stages, unable to speak, move or breath unaided – and Aikman refers openly, more than once, to “the disease that is killing me”.

Aged 30, he is no longer able to walk or use his hands, which means he can’t feed or dress himself, brush his teeth or make a cup of tea. The former director of research for the pro-Union Better Together campaign is visited by carers three times a day to help with these basic tasks. There is no bitterness when Aikman speaks, but you detect touches of the frustration and bewilderment that could so easily overwhelm anyone.

“One of the hardest times was back in January when I first starting getting care at home,” Aikman explains, his voice strong. “Accepting that you need someone to come into your home and help you is pretty tough. At that point Joe was doing a lot for me, but it takes its toll.

“Every week I’ve had to adapt to not being able to do something else. I’m constantly adapting to a new normal. But you have to accept that you need help. You could struggle and struggle and just waste your life away.”

Not being able to feed himself was also a tough one to face up to, adds Aikman, a former competitive gymnast and head boy at Kirkcaldy High School, though he laughs that his love of good food helped him overcome worries about eating out in public.

Pike, a political reporter for ITV, regularly feeds his husband in restaurants and is cheerfully accepting of the “challenges” of home life with a disabled partner, even pointing to positives.

“Nowadays if I come out of the shower in my towel and there are six people in the house I don’t bat an eyelid,” he smiles. “It becomes normal. Because there are lots of people around, the house is quite a fun, busy place. And each of the carers has their own story to tell. I’ve enjoyed getting to know them all.”

Aikman agrees, describing his carers as friends who make life “not just liveable, but worth living”. One was even a guest of the couple at their wedding in March at Edinburgh’s Assembly Rooms.

More than anything else, says Aikman, he wanted to be able to walk down the aisle, a feat he succeeded in with the help of leg splints, a crutch and “Joe clamped to my arm”. The whole day was “just perfect”.

The pair met 10 years ago while students at Edinburgh University, and were friends for years before getting together romantically. They had been living in their flat – a modern new-build property near Hibs’ stadium – for around a year and were both working at full pelt on the referendum when Aikman received the devastating diagnosis. He had known something was seriously wrong for months, he says, as the strength started to sap from his body. It took five months of tests and deteriorating health to confirm MND, and Aikman admits he and Pike were prepared for the worst.

Immediately afterwards the couple went travelling, visiting South Africa, California, Germany and Ireland among other places. It was on a trip to Washington DC that Pike, who grew up in Oxford, popped the question.
“We were at the foot of the Lincoln Memorial at sunset and it was freezing cold,” he smiles. “I was pushing Gordon in a wheelchair and he was holding loads of shopping bags. I kept trying to stop and he kept telling me not to.

“The next minute I was down on one knee with a ring and I was asking him to marry me. He said he would marry me, but only if we moved on because it was so bloody cold. We went for dinner at Barack and Michelle Obama’s favourite restaurant that night. It was such a wonderful trip.”

Aikman says the drastic changes in his life since being diagnosed have helped him refocus on “what is really important”. He and Pike spend much more quality time together than they may have otherwise. He also spends more time with his family in Fife, and plays an active role in the lives of his nephew Murray, aged two, and three-month-old niece Ailidh.

“All these things are much more important to me now,” he says. “Before I’d go for weeks without speaking to my family. Now I see my mum every week and my sister and the kids every couple of weeks. I want to see my nephew and niece grow up and be part of their lives for as long as possible.

“Being ill can become a full-time job if you let it. You have so many medical appointments and nurses and carers and doctors needing your time. People constantly ask you how you are feeling – that could become too much. You have to be disciplined and make sure you see your friends and do the things you want to do. You have to keep control of your life.”

Pike is determined to help Aikman do that, and says coping with the situation means trying as much as possible to live in the present rather than focusing too much on the future. He is amazingly upbeat.

“People always say to me, ‘Oh, it must be so difficult,'" he explains. “I suppose it is, but on the other hand I’ve fallen in love, and I have the chance to spend a lot of time with the person I love and care about. 

“The difficulty of the situation isn’t the whole story. We are still in a honeymoon period – we’re still newlyweds. People think it must all be grim, but it’s not. Things change but we work around them. We still have busy lives and Gordon is a very motivated person – he makes sure we get out there and do things.” 

Over the last year, the couple have done exactly that. As well as helping care for Aikman, assisting with Gordon’s Fightback and holding down a full-time job in journalism, Pike wrote a book, Project Fear, about the Better Together campaign and the impact the independence referendum has had on Scottish politics. Writing was therapeutic, says Pike, in that it gave him a focus away from the physical and emotional stresses of being a carer. First Minister Nicola Sturgeon has described the book as “a great read”, and Aikman beams with pride whenever it is mentioned.

It’s hard not be humbled and inspired by how much this young couple has achieved in the face of such adversity, especially when Aikman outlines how determined he is to commit time and energy to his campaign for as long as his health will allow. One of its great successes has been in bridging the political gap. Despite being a staunch supporter of the No side in the independence debate, Aikman has forged links with the Sturgeon over the last 18 months.

The First Minister personally made the call to double the number of specialist MND nurses and pay them from the public purse after meeting Aikman. He describes her as “responsive and a good listener” and says the new nurses could play a vital role in finding a cure for the condition as well as making a huge difference to the lives of patients.

“The funding for the MND nurses was huge,” he explains. “But it’s not just the funding, it’s what the nurses will be able to do because there are so many more of them. They’ll be able to gather rich information about the MND population in Scotland, which makes Scotland an ideal home for clinical trials. 

“We’ve already got some of world’s leading MND researchers. That is the future, treatments like stem cell research. The people in white coats in labs will make massive progress towards finding a cure. 

“One day we will find a cure. There will be a pill, an injection, another type of treatment. I’ll be gone by then, but others will benefit.”

Aikman’s passion for life is infectious, and his skills as a campaigner and efforts to help others have, unsurprisingly, been recognised and celebrated by the wider world. Earlier this year he received the British Empire Medal and an honorary degree from Edinburgh University, while a BBC documentary about the young campaigner will be screened early in the new year.

He believes public awareness of the condition is higher now than it has ever been thanks to initiatives such as last year’s MND Scotland Ice Bucket Challenge, which went viral before the referendum and saw opposing campaign leaders Alex Salmond and Alistair Darling being bucketed with freezing cold water, and The Theory of Everything, the Oscar-winning film about scientist Stephen Hawking, starring Eddie Redmayne.

Aikman was hit with a terrible reminder of how brutal MND can be last month when he fell out of his wheelchair at home alone. With no phone within reach he lay contorted on the floor calling out for help for five hours before a carer found him and called an ambulance.

“That was my lowest point,” he admits. “It was almost worse than the diagnosis itself. What was overwhelming was how out of control I felt. 

“I also felt genuinely close to death – whether that’s rational or not I don’t know. But I felt like I was going to stop breathing. Having to confront that was so unexpected and awful. Five hours with just your thoughts is pretty terrible. That sort of forced reflection alongside the physical pain and terror, and screaming to no avail, was horrendous.”

The fall cut off the blood supply to Aikman’s legs and dangerously compressed his breathing. His already weakened muscles struggled to cope with the trauma and he spent a week in hospital not knowing whether he’d regain any strength. Thankfully, with rest and recuperation he did, though the bad memories have been slower to fade.

Aikman admits the experience forced him to contemplate death even more acutely – but also to appreciate the things in life that mean the most.
“Death is coming closer but I’m more relaxed about it and I’m not as scared,” he says. “Life is fragile and unpredictable for all of us – I’m living proof of that. But I’m lucky too – my life wasn’t cut short in a sudden way. I have at least been given the knowledge that this is happening. I know what’s coming down the line and how much more difficult it’s going to get. 

“I’m realistic about the limits my condition have put on my life. I love travelling but that is very difficult. But you can be happy in so many other ways. It’s about who you are with and how you spend that time.”

For now, Gordon Aikman is happy to spend that remaining, precious time campaigning to help all those diagnosed with the disease that will kill him. And he’s rejoicing in married life. That’s surely time well spent in anybody’s book. 

The Fight of Gordon’s Life will be broadcast on BBC One on January 4 at 8.30pm. To donate to Gordon Aikman’s campaign, visit www.gordonsfightback.com