Graeme, who is married to Wendy (47) and dad to twins, Grant and Ellie (13), was diagnosed with MND in May 2015.
Graeme was an active competitive sports participant all his life, even after his diagnosis, with a passion for athletics, football and running.
He said, “There’s so much I cannot do anymore. I used to play 5-aside football and go for 10k or half marathon runs. I miss simple things like eating and drinking, going out for meals, walking on my own and being self-sufficient. Mostly I miss being able to kick a ball around with my son.
“I had first noticed in August 2014 that I was gulping when drinking liquids. During January 2015, after only a few drinks, I noticed I was slurring my words and on Mother’s Day that year my wife and kids noticed it too, so I went to see my GP.
“It took three months of testing before I was diagnosed with MND. At first I felt very angry, frustrated and unbelievably sad for my family and myself. I felt incredibly guilty that my family would have to experience the agony of my deterioration and the fact they could do nothing to stop it.
“Throughout my life I have always found ways of overcoming what life throws at me and my family, by taking actions to improve the problem. This time there is nothing I can materially fix or do to sort it. Normally I can delay, soften or improve most of life’s issues that affect my family but, not this time. It seems silly but when I first told my mum, sister, brother and wife's mother, all I did was apologise for the distress it would bring to them all.
“What keeps me going is the dream to see my kids grow to be adults and support them as long as possible. This was a given once upon a time.”
Graeme worked as a Chartered Engineer in the oil and gas industry for 30 years, but had to stop working in December 2016 due to the progression of his illness.
“My boss and colleagues were very supportive and I really appreciated that. With my deteriorating verbal communication, hand and arm disabilities, poor balance and the time it took me to get up and ready for work, I felt all the effort from everyone else was too much. At work I felt that my efficiency had dropped due to my disabilities and it was taking me longer to complete tasks which frustrated me.
“Now I am using communication devices and the muscle wasting in my right hand and arm makes them useless, with the same happening to my left side. My neck muscles are weak, I can't walk unaided and I am now the same weight I was when I was 18. Swallowing was becoming more difficult so I had a PEG fitted in December which took the pressure off eating for hours to keep my weight up.”
Now, over two years after his diagnosis, Graeme reflects on the wonderful times he has had with his family.
“I have so many special memories with my family. I remember when the twins were less than a year old, I would spend Saturday mornings with them all to myself while my wife was at work. I loved our holidays where they learnt to crawl and swim, and simply enjoying being together as a family.
“Watching my daughter perform in her drama club and my son playing football are also highlights for me, but I miss being about to go out for meals, wrestling about with them, helping them with homework. These are all things that I can just no longer do.
“My fear is how my illness will impact my children's lifestyle, education and wellness with the difficulties that are ahead of us, but I try to stay positive.”
Graeme’s hope for the future is to find a cure for this devastating illness, “I live in hope that research discovers a drug that can delay the progression of MND to buy me more time, to find a cure, and so that I can be around for my family.
“Through my own research and enquiries I have been fortunate to become a participant in a clinical trial of a drug at Kings College Hospital London in order to find a cure for MND. Being involved in the trial has been uplifting, incredibly interesting and kept me positive.
“Without volunteers for trials we will never find a cure or a way of slowing the disease progression. I'm no hero, there are risks but in order to find something and feel of worth I got involved. I would encourage fellow able sufferers to consider getting involved in a clinical trial.”
Speaking about the support he has received from MND Scotland and the NHS he said, “Maggie, MND Scotland’s Welfare and Benefits Officer, has provided great help by making sure I get the benefits I am entitled to, in the minefield of entitlements.
“My MND Clinical Specialist has been fantastic. She has been great for my wife and I, and her knowledge and experience has been invaluable.”
Craig Stockton, CEO of MND Scotland, said “MND Scotland is here to support people in Scotland, like Graeme and his family, through this difficult journey. Our services are vital to improving the quality of life of people affected by MND and alleviating many of the burdens associated with the disease. I am pleased to hear that our team has been able to make this process a little bit easier for them.
“I’d also like to take this opportunity to thank Graeme for sharing his story with us and with you. Sharing personal experiences of MND is a great way to raise awareness of how this illness affects people’s lives, and shows the strength and courage people have in the face of a devastating diagnosis.”
Graeme Peddie, diagnosed with MND in 2015