Meeting of the Parliament 22 February 2017
I extend my condolences to Gordon’s husband, Joe, and to his friends and family. I was not Gordon’s friend. That was not by choice, and it is to my regret that I am also one of the people who did not know him when he was alive. However, I have heard the remarkable stories of this young man who was taken so tragically at the age of only 31.
As Gordon’s body failed him and his disease progressed, he never failed in his determination to leave a legacy that would improve the lives of other MND sufferers. His fightback was an incredible, selfless achievement.
Alex Cole-Hamilton and others have talked about the cruel, indiscriminate nature of the disease. Maree Todd mentioned Joost van der Westhuizen, who died so suddenly. Such deaths raise awareness of MND. I know that one of Gordon’s wishes was for people to understand the disease better, and it is important that we develop that understanding.
MND can strike anyone. In the United Kingdom, six people a day are diagnosed with motor neurone disease, but the rates of MND in the rest of the world are not readily understood. If we struggle here to cope with the rapidity of the disease’s progress and to care for people, we can only imagine how it must be for people in third world countries who are diagnosed. The lack of understanding, and the lack of palliative care, should concern us all.
Of course, there are remarkable people whose journey has not been representative of people with motor neurone disease, such as Stephen Hawking, who is a hero to many of us. The biopic film, “The Theory of Everything”, in which Eddie Redmayne documents Stephen Hawking’s early struggles and MND diagnosis, is particularly moving. I hope that the film has contributed to raising awareness of the disease.
As the rugby world was rocked by the death of Joost van der Westhuizen so, too, the football world was rocked by Fernando Ricksen’s diagnosis of MND. No one who saw the interview in which he revealed his diagnosis could fail to be moved. Like Gordon, he turned that diagnosis into something positive by founding a foundation to raise awareness and funding.
Euan MacDonald, another motor neurone disease sufferer, has turned his time to developing, with his sister, Kiki, Euan’s Guide, a website that addresses some of the issues related to living with disability that were important to Gordon. Euan’s Guide seeks to give advice to people about visiting attractions and areas in Scotland, removing some of people’s worries about not knowing what to expect, such as how accessible a venue will be and whether there will be accessible toilets. Euan’s Guide takes away some of the difficulties faced by people suffering illness and disability.
We all took part in the ice bucket challenge; although we lived to regret it, we raised lots of money, which is commendable. I draw attention to the work of my friend and colleague Christina McKelvie in this area. A few years ago, I sponsored her to do a fire walk to raise money for motor neurone disease; I am sure that there are many who would like to have held her feet to the fire more than I did—I suspect that Gordon might have been one of them.
No one who is close to me suffers from MND, but my sister Eileen suffers from multiple sclerosis. She is 10 years older than me and she still works as a GP. I thank Kezia Dugdale for making the point that the superheroes are not the people who climb Kilimanjaro, but those who every day cope with and accept the diseases that life has thrown at them. That is why I am particularly pleased that the Scottish Government is providing funding for additional PhDs on MND and MS—which are strongly linked—at Aberdeen, Dundee, Glasgow and St Andrews universities. I am very grateful to the Government for that. Dedicated funding is also being provided at the University of the West of Scotland. I am sure that that will show that Scotland is leading the way in finding a cure.
I was not Gordon’s friend, but Gordon is my friend. He is a friend to everyone who has been touched by MND, MS or other neurological conditions, because his work will work towards finding a cure. What a wonderful legacy to have left to Scotland.