I’ve felt very sad today. A friend of mine, Joe Pike, moved to Scotland not that long ago. I was sad to see him go, but it was the right move for him. I saw him a couple of months ago when he was in London on a flying visit. He’d met someone who he hoped to build a future with. Yesterday I heard via a mutual friend that his life had been turned upside down as his new partner had been diagnosed with motor neurone disease, and it’s terminal. I texted him to send a massive virtual hug. It was all I could offer. What on earth does one say in these circumstances?

Joe texted me back a link to an article his partner had written for a Scottish newspaper. I read it on the train to London this morning and couldn’t hold back the tears. Goodness knows what my fellow passengers on the 8.04 to Charing Cross were thinking. You can read Gordon Aikman’s article HERE but here’s an extract…

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.

…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.

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.

If Gordon’s story has affected you like it has me and thousands of others, please do make a donation on his JustGiving page HERE He’s raised an unbelievable £28,000 so far.

Life really can be a bitch.