‘Motor Neurone Disease is a death sentence’

MOTOR Neurone Disease is a death sentence for Gordon Aikman. But he is determined that it will make his life all the more precious

Gordon Aikman led an active life but was diagnosed with Motor Neurone Disease. Picture: Neil Hanna

I am lying on a cold hospital bed, stripped down with electrodes stuck all over my skin. A doctor quietly takes notes as pulses race through my body. After almost an hour I get back into my suit, ready for a packed day of calls and meetings. The doctor steps out to speak to my consultant.

I flick through the morning’s headlines on Twitter and quickly check my email as I wait. In my job as director of research at Better Together, I have got to be up to date. The doctor is gone some time. My appointment has already overrun. I’m irritated.

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He returns and says: “Your neurologist would like to see you at 1.15 tomorrow.”

“Tomorrow won’t work. I have meetings. Meetings I can’t miss.”

He tilts his head to one side, holding my stare for what seems like an eternity, before stressing: “Your neurologist will see you tomorrow. 1.15.”

The penny starts to drop. Suddenly that conference on the economics of independence seems far less important.

Fast-forward 24 hours and I am back at Edinburgh’s Western General. This time I sit opposite my consultant neurologist; a young, caring face looks back. He speaks softly, but this time the atmosphere is different. He talks slowly. He pauses. I know it isn’t good news, but nothing could prepare me for what he is about to say.

Tears form in his eyes as he explains that all the diagnostic tests point to something called Motor Neurone Disease or MND. I’m confused.

“That doesn’t sound good,” I respond awkwardly, thinking to myself: “I don’t have time for this.”

He asks what I know about MND.

“Very little,” is my honest answer.

“It is a rare, progressive and debilitating disease,” he explains, “that attacks the brain and spinal cord.”

I don’t believe what he is telling me. I shake my head in disbelief.

“In time,” he says, “it will lead to weakness, and muscle wasting,” affecting how I walk, talk, eat, drink and breathe.

How could this be? My symptoms seemed so innocuous. I had noticed my hands feeling numb; I was beginning to struggle with tying shoelaces and buttoning shirts. I thought it was my circulation: something a few blood tests and a pack of pills could sort. How wrong I was.

“Why me? Why now?” I ask. He bites his lip, before replying candidly: “We just don’t know unfortunately.”

Researchers have yet to discover how or why people develop the disease. In my case – and in around 95 per cent of diagnoses – there is no family history of the condition. When I press further, he concedes: “There is no cure.”

I cut to the chase: “What is the prognosis? How long will I live?”

Hesitant, he prefixes his answer with “everybody is different” and “it is difficult to predict”. He then wells up before admitting that we are talking “just a few years”.

My head is a mess. I stand up, walk across to the window, run my hands through my hair and stare out into the middle distance. My mind goes blank. I don’t know what do. I’m 29 years old and I have just been given a death sentence.

Scientists may be far from a cure, but they know people with MND do not live long: half die within 14 months of diagnosis. How do I even begin to process what has just happened? In short, you can’t. With time it sinks in. And only once you have accepted it can you then move on and get your life on track, albeit a very different path to the one I had planned.

Many people have said I’m unlucky to have developed the disease so young. People in the hospital have mistaken me for a visitor: “Who are you here to see, son?” Yes, most patients are much older than me, but I’m far from the youngest to be diagnosed.

There is no definitive test, meaning it can take a while before receiving a definitive diagnosis. A few weeks ago I got the final confirmation I was dreading, but expecting. I am dying. And fast.

Before all of this, I lived to work. In a previous role with the Labour Party I was dubbed “Mr 14 per cent” after Alex Salmond publicly bemoaned the fact that I was responsible for 14 per cent of all Freedom of Information requests to the Scottish Government.

For the past two years, campaigning for a No vote was my focus, I gave it my all. It is not the sort of job you can do by half. It is about as far from a 9 to 5 as you can find. The stakes are high, and so too is the pressure. It is hard to switch off. You sacrifice a lot. I saw less of my friends and family. Is that healthy? Of course not, but you justify it, telling yourself: “It’s just X many months to go until the referendum now, soon it’ll be over.”

That was then. When you are told you are dying you face a choice: you can wallow in self-pity, get angry, seek answers where there are none – or you can make the most of what you’ve got.

Now I have a new outlook on life. I’ve reassessed my priorities. While I am powerless to the disease that is taking over my body, I am now more in control of how I spend my days than ever before. I don’t do anything that I do not value or enjoy. That is exciting, liberating, empowering.

When a clock is ticking down above your head, every moment becomes precious. I now live from day to day, week to week. I don’t get too far ahead of myself: who knows how long I will be able to walk, feed myself and breathe unaided?

In many ways I am lucky. I at least have time to spend with those I love; to do some of the things that I’d always planned. Trying to pack a lifetime of dreams and aspirations into a few months is far from easy, but it’s a chance most people don’t get. I’m catching up with old friends, travelling, and spending time with my family in Fife, especially my baby nephew Murray.

Of course, there’s much I won’t be able to do. I would have loved to have got married and start a family of my own. But to dwell on the impossible brings no joy, best focus on the possible.

The hardest thing of all is knowing that not only will this journey be tough for me, but also for those I love and care about the most. Seeing their tears and hearing their voices crack is painful, and it’s all because of me.

I have been told I am likely to be in a wheelchair by Christmas. A little different from my back-flipping, teenage days as a member of the Scottish gymnastics team. Physically, as you accept you adapt. The progressive nature of the disease means my body is constantly evolving to a new normal. I struggle with everyday things you take for granted: writing, typing, holding cutlery. It feels like wearing boxing gloves, unable to fully control my hands as I did with ease just a few months ago. But I have developed workarounds. To open packets I’ll use the strength of my teeth where I’d previously use my hands. I don’t think twice about asking for help.

More recently my legs have become affected. Walking feels like wading through sand, every step an effort. People stare and you know what they are thinking: “Young lad walking strange, must be drunk.” If only. I trip and fall a lot. People walk by. I am permanently covered in cuts and bruises. Climbing even a short flight of stairs feels like a workout and yet just a few months ago I could run around Arthur’s Seat.

I constantly twitch: painless but incessant. I catch myself staring at my arms, my legs, and my stomach as my muscles flicker. It is as if my body is tormenting me. I feel trapped inside as it shuts down around me.

One decision I have had to make was whether to continue working or not. For me, quitting was never an option. I’m lucky to have a job I love and am desperately passionate about. It is by far and away the most important – and in all likelihood the last – job I will ever do. But it is more than that: it is a cause.

Can I do as much as I would like to? No, but I want to finish the job I started. Gone however are the 6am starts and late night finishes. As is the daily Edinburgh to Glasgow commute to campaign HQ. Instead, armed with my laptop and mobile, I work remotely as much as I can. I’ve been fortunate to be part of such a supportive team: colleagues who I’d also call friends.

And as the debate gets ever more heated it is important to remember that on both sides – Yes and No – there are good people fighting for what they believe to be best for our country.

Campaigning for change is what makes me tick and when it comes to MND there’s clearly much still to do. Soon after I was diagnosed I received a visit from a specialist MND nurse who, after answering a barrage of questions, gave me an information pack. Inside was something that really frustrated me. It said that MND patients in parts of Scotland are being asked to pay for some of the most basic care they need: help with feeding, dressing or washing. That is despite clear guidance that anybody who is terminally ill is entitled to free personal care. Without thinking, I had fired an email off to a bunch of MSPs demanding an end to this deeply unfair practice.

I was also shocked to find out that while the NHS directly funds the great work of more than 347 Macmillan ­cancer nurses in Scotland, the country’s seven specialist MND nurses are dependent for more than 80 per cent of their funds on charitable donations to MND Scotland.

But most importantly, we must invest far more to find a cure. We are a nation of innovators and lead the world with stem cell research. It is too late for me, but we have the chance to help the next generation.

I’m brutally honest about what’s happened to me not because I want pity or to be treated differently. I just want to do my bit while I still can. Yes, MND has changed my life, but I refuse to let it become my life. Even in adversity, you can find positivity. After all, MND is neither cruel nor unfair, but a question to which there is as yet no answer. A disease for which there is as yet no cure. We can and we must find it. «

Gordon Aikman is director of research for the pro-UK Better Together campaign, and a former policy and communications adviser to the Labour Party. You can visit Gordon’s JustGiving page at: www.justgiving.com/GordonAikman

MND Scotland provides support and information for people affected by Motor Neurone Disease. This week is Motor Neurone Awareness Week. For more information visit: www.mndscotland.org.uk call: 0141 945 1077 or email: [email protected]