Life with MND
June 21st is Motor Neurone Disease (MND) Awareness Day and it's 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 & 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.
Euan´s Guide owes itself, in part, to experiences gained by a group of people living with the effects of MND. But access requirements for someone with MND can be similar to those with other impairments. 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 for Motor Neurone Disease Research this June.