Two Galloway men are to take part in fundraising activities, including a skydive, to raise money and awareness of motor neurone disease (MND).
During MND Awareness Week (20-26 June), John McGaw from Castle Douglas and Iain Donachie from Stranraer, are calling on the public to help MND Scotland ‘Cure MND’.
John, an electrician who lives in Castle Douglas, but grew up in Stranraer, was diagnosed with MND - a terminal disease which stops signals from the brain reaching the muscles - in November 2015, and is now doing what he can to raise as much awareness as possible about the illness.
MND can cause someone to lose the ability to walk, eat, speak and breathe unaided. John, who is father to Liam (11), Aillie (8) and Blaine (5), said, “My symptoms go all the way back to 2012 when I started losing the strength in my left hand. I found it hard to lift pillows off the bed at night, so decided I needed to have it looked at. The doctors told me it was CTS (Carpal Tunnel Syndrome), so I had an operation to fix it, but it made no difference.
“I was told in June 2015 that they thought it could be MND and that I wouldn’t get any better. My doctor said I would certainly not be fit to do the job I was doing, how right he was. So I gave up work as an electrician that month. In hindsight I probably should’ve stopped sooner. I wanted to keep on working and really miss it, but my body just wouldn’t keep up with me.
“I wasn’t officially diagnosed until November 2015 and by this time I was having issues with my balance, coordination and walking. I now have to use crutches to walk and because my balance isn’t great I can’t leave the house when it’s really windy – which in Scotland isn’t ideal!
“Explaining what is happening to the kids is difficult. Their mother has been great and has helped them try to understand what is happening to Dad. My emotions aren’t as in control as they used to be, so it’s hard for me to talk to them about it. Sometimes I cry for no reason, other times I laugh at really inappropriate times and can’t stop – it’s a strange feeling.”
John is planning on marrying his partner, Erryne Carruthers, who also has two children, in April 2017. John and Erryne met in September 2014 when John’s symptoms were already showing. He said, “The diagnosis has made no difference to my proposal, that was done purely out of love. Erryne met me when symptoms were starting to show and knows not of the old me. She has been my rock throughout this journey and I cannot wait to spend the rest of my life with her.”
For MND Awareness Week 2016, John is joining forces with MND Scotland to ‘Cure MND’. This week he is hosting a Dinner Dance at Hetland Hall on 24th June to help raise money towards his sponsored skydive with 14 other people. John will be soaring high on 20th August at Paragon Skydiving Club, Errol Airfield, Perthshire.
He said, “I don’t feel like my condition has gotten any worse since last June or July, so I am confident I’ll be fit enough to do my skydive in August. I am hopeful I have age on my side and the stubborn ability not to let this get to me. However, I am actually terrified of heights! But since I got my diagnosis I am determined to conquer my fear. I’ve never had the backbone to do it before and when I was told I would lose my ability walk, I thought – why not now?
“And of course raising awesome amounts of money at the same time will hopefully go a long way to help finding a cure. Without funding we would remain at a standstill. MND is not as well-known as other diseases, but at the end of the day, it’s not a rare condition anymore. More and more people are being diagnosed, and we all have to do our part to get awareness out there. I will continue to be an MND Scotland fundraiser for as long as my body allows me to be.
“So now I am asking everyone who is reading this to do something to help us ‘Cure MND’. You can donate £5 to MND Scotland by texting CUREMND to 70660 or donate online at www.mndscotland.org.uk.”
Iain, who lives in Stranraer, was in the Royal Navy from the ages of 15 to 40. When he finished his service he moved back to Stirling and worked in a loft installation factory for about eleven years, before relocating to Stranraer in 2012, where his wife, Joyce (58), grew up. He worked for a ferry company in Stranraer for about eight months but then decided to take early retirement, buy a mobile home and happily set off on exploring adventures with Joyce.
Not long after retiring Iain began to experience symptoms.
Iain said, “It all started with a problem in my left hand. It seemed to be weaker than normal but didn’t really interfere with everyday life. I assumed it linked back to an issue I had with my neck years ago but the MRI scan showed no problems. I was then transferred to a neurologist and was diagnosed with a disease called, multifocal motor neuropathy, which also affects the motor neurons. There is a treatment for this disease which I took for over a year before it was decided it wasn’t working.
“I went back for more tests and received my MND diagnosis in March 2014, although I think I have probably been living with MND for about four years now. I have the slow progressing type of MND, which is why it took so long for symptoms to develop and a diagnosis to be given.
“I had always been very active in my career and also in my personal life. I loved playing golf, gardening and DIY.
My golf probably suffered first and I was forced to give it up in the 2013 season. Not being able to participate in activities that previously filled your day is not easy and it leaves a big void to fill. This is just one of the ways MND has changed my life.”
Iain has lost most of the movement in his upper body and uses a wheelchair to help him get around. He said, “Although I’m not yet permanently in a wheelchair, Joyce has to do everything for me. From feeding me, to bathing me and helping me go to the toilet. I don’t know what I would do without her. I can’t write anymore but luckily I still have my voice. It’s not 100% but is still pretty good.
“Joyce and I are quite practical about everything. There is nothing we can do about the situation so we just get on with it and do what we can. My glass is always half full. I’ll be as positive as I can be for as long as I can be.”
For MND Awareness Week 2016, Iain is urging you to join MND Scotland to help ‘Cure MND’. He said, “I want to do what I can to raise the profile of MND and at the moment I spend a lot of my time contacting my local MPs and MSPs to ensure they are focusing on making life better for people with MND.
“Research is also crucial. Other illnesses, such as cancer, seem to be so far ahead in terms of research. And rightly so as it is more common, but it would be great if we could find out more about what’s causing this devastating illness. MND researchers seem to be really positive about the way things are moving - so if there’s a chance we can find something that will extend peoples’ lives and improve quality of life for people with MND – then we need to do it!
“So now I am asking everyone who is reading this to do something to help us ‘Cure MND’ and donate £5 to MND Scotland by texting ‘CUREMND’ to 70660 or donate online at www.mndscotland.org.uk.
MND Scotland is the only charity in Scotland providing support to, and campaigning on behalf of, people affected by MND, as well as funding vital research.
Craig Stockton, CEO of MND Scotland, said, “MND is a rapidly progressing terminal illness, with no effective treatment and no cure. That’s why during MND Awareness Week 2016 we want to increase awareness and understanding of MND, the importance of research and raise funds to help take us a step closer to finding a cure.
“Funding MND research is a key priority for MND Scotland. We currently fund three research projects in Scotland and have just announced a £450,000 investment into a further three projects. But with additional support we can do more! Join the MND fight today and help us create a world without MND tomorrow.”
For more information about the research MND Scotland funds, and how you can help, please visit www.mndscotland.org.uk