Changing the narrative

Before you read, I just want to be clear that all opinions and thoughts are my own and don't represent anyone else's views. I don't think there is anything that will offend you, but do I hope that my attitude towards living with MND will not upset others that live with the condition, those that care for them or friends and family that have been affected by someone's diagnosis. Maybe it will help you tell others or find out more. I can only take the best approach for me and I shall give no ground back to the toughest opponent I have faced in my 41 years....

Whilst the recent news about the MND-SMART clinical trial was not what the MND community may have wanted to hear, it's important to note that it's a step in the right direction. Robyn Munro and I were naturally down for a moment. However, we agreed that the quicker drugs have been reviewed and tested, the faster we come towards more effective treatments and ultimately better outcomes for those people, like me, that are living with MND. I haven't joined the trial yet, but plan to soon when the time is right and it's encouraging to know that more trial drugs come on stream in 2024.

MND is often described as a 'devastating' 'cruel' 'uncompromising' and words to this effect. I've tuned into this, especially in the media. You may have seen the harsh reality of the condition on tv or perhaps directly through a relative, friend or colleague living with it. As brutal and life-changing as the condition is - take it from someone living their life with this diagnosis - these words are a not always so helpful reminder. I understand that this can help others to understand the condition better and generate donations for charities supporting the cause, but I hope that we can now change that narrative.

I don't want you to think I'm trying to ignore the issues I have to overcome in the future, but this is what I'm thinking:

1. The cause of MND is hiding in plain sight. It may be overly simplistic; although we understand very little about the triggers for MND, there is expertise and brainpower devoted to solving the mystery near around the clock, particularly here in Scotland. What the experts need is funding, resource and support. Take COVID-19 as an example for the power of the medical community pulling together to find a solution to a problem in short order. There are so many worthwhile charitiable causes to donate to and for me, all diseases are horrible; however for MND, if we can help the experts with what they need - funding, resource and unwavering support - they will work this out. What is always against us / me is time. I hope that very soon we will be at the stage where the experts can change their narrative of 'we're trying to find new treatments', to 'we've found them and we think we've found the cure'.

2. In sport, you are (or should be taught) to give respect your opponent. However, you're also taught not to fear them and to understand your own skillset can be used to beat them. MND is a most formidable opponent, but by using words like 'devastating' 'cruel' 'uncompromising', we are giving it too much ground. It is a battle that can be won, maybe not in my lifetime or by me, but by many heads pulling together for future #MNDwarriors. For my own journey, I like to think of it as another golfer that I am playing 18 hole matchplay against and no quarter will be given until the final putt is holed.

3. I have experienced first hand since my diagnosis that MND community is incredible; supporters are growing daily with a heightened awareness and appreciation of the condition. This gives me strength, determination, and mental fortitude to simply crack on and live my best life.

Kenny Logan 's Rugby World Cup Challenge, raising money for My Name'5 Doddie Foundation has recently been in the news. Well done to all participating - Grant McManus , Martin Wilson , Mark Wright , Jamie Lindsay , Hugo Southwell to name a few owners of tired legs!

Other organisations such as MND Scotland , Euan MacDonald Centre, MND-SMART and NHS Scotland providing research, care and support. High profile athletes Rob Burrow, Ed Slater, Doddie Weir, Marcus Stewart , Stephen Darby (to name a few) have worked tirelessly through their own journeys. This team I have joined will win, we will beat it and we will have a huge celebration when that time comes. It's a team that you don't ever hope to represent, but one I am prepared to stand shoulder to shoulder with, fighting with my calmest ferocity.

4. Dugald Skene , thanks for the prompt...On #WorldMentalHealthDay2023 the importance of caring for my own mental wellbeing is something not lost on me. I've had a few knocks in recent years, but these experiences definitely helped me navigate the time around my MND diagnosis. I carry no shame in saying that talking to someone qualified in this field helped. I know it can be the hardest thing to do, but acknowledging the quality of our mental health is very important. It was probably something that I could have done in my 20s, but I don't think I knew enough about myself to recognise the impact it has had on me today. I have my moments, we all do and now I understand that's ok. Talking to friends, family and colleagues has helped me appreciate that life is not over yet and there is plenty of time left to achieve the goals that I set myself. I may have to approach them in different ways, but I don't intend to stop no matter how many years are left.

Please feel free to share this article with your network if you think it will help others if they are experiencing their own challenges in life or work. Please feel free to disagree with, debate or disregard my comments. Don't worry, I won't be writing articles every week, but I've found doing this helps clear my head of a great deal of noise that reverberates around from the moment I wake up.

If there is a cause that you believe in that is unrelated to MND, that's ok too and I hope this spurs you on to reflect on what you can do to help those affected by it, if you aren't doing so already. It goes without saying, all diseases and indeed, anything that shortens life are 'devastating' 'cruel' 'uncompromising'. I'm not letting that narrative be what defines my journey.

Love,

Scott