Life with MND
June was Global MND Awareness Month, and to mark the occasion Edinburgh alumnus Euan MacDonald has shared with us a blog about life with motor neurone disease.
Euan MacDonald (Law 1999) was diagnosed with motor neurone disease in 2003, shortly after losing the power of his thumb during a bike ride in London.
Just a few years later in 2007, Euan and his father Donald founded the Euan MacDonald Centre for Motor Neurone Disease Research at the University.
Since then, the Centre has grown to become a Scotland-wide hub for more than 200 laboratory scientists, social scientists, doctors, specialist nurses and other health professionals working together on research into MND and related disorders.
Despite the fundraising success of viral campaigns such as the Ice Bucket Challenge (also known as the ALS Ice Bucket Challenge, where ALS is amyotrophic lateral sclerosis, a type of MND), MND remains a relatively unknown disease. Awareness campaigns such as Global MND Awareness Month help people to gain a better understanding of what is actually a group of diseases, and here Euan explains what life with MND is like.
‘Life with MND’ by Euan MacDonald
MND Awareness Month is a cause very close to my heart. My diagnosis 14 years ago opened my eyes to a new world – one I was unaware of. I began to encounter barriers, challenges and hurdles (both physical and mental) that seemed insurmountable.
Life with MND can be complex. Getting out the door involves a routine Wallace and Gromit would be proud of. A small feeding tube gives me breakfast before I wake up. A ceiling hoist lifts me out of my bed. A ventilator helps me breathe at all times. Once I get out the door a stone ramp takes me down to my Motability car, parked outside on the road by virtue of a blue badge. None of it happens by accident. I often sit back and think of the work that has gone on behind the scenes to put all these things in place and I feel grateful for it.
Crucially, I have a communication device – the most important piece of equipment I have. It's as essential to me as my ventilator. I simply couldn't live without it. Technology is a friend to people with MND. Digital communication through social media, email and instant messaging can be accessed through assistive technology. I may not be able to speak but I can still make my voice heard. I use my eyes to operate my Tobii – a portable, tablet sized Windows 7 PC with a difference. It has a synthetic voice unique to me, created from a short recording of my speech. While technology may not provide a cure, it can improve quality of life while we wait for one.
There are positives to life with MND. I get the best parking spaces. I get to skip queues (sometimes). As much as I would like to do the housework, I’ve been relieved of my household chores. I don’t get hangovers (although I do allow myself an occasional dram). I always have a comfy seat. But most of all MND has opened my eyes to a different way of life and remarkable people who regularly overcome the odds in their daily lives. Although no two people with MND are the same, certain characteristics can be evident – like resilience, determination and, most notably, a sense of humour.
I’d like to think MND Awareness Day has a relevance beyond the disease itself. Please support crucial MND research if you can. Donate to the Euan MacDonald Centre this June.