“MND is not contagious”

Married to Anne (77), the couple lived in Galston, Ayrshire, for 18 many years but moved to Rutherglen in 2013 to be closer to their two daughters, Lee (49) and Lesley (47), as well as their grandchildren, Meg (19) and Matthew (14).

George left school aged 15 in 1954 and started an apprenticeship as a carpenter joiner. At 20 he was called up to do National Service in the Royal Air Force where he served for two years as a medic. After his time in the RAF he was mostly self-employed in 12 other different occupations until Anne and George both retired.

Thinking back to his initial symptoms of the disease George said, “It was my daughter Lee who first noticed that something was wrong with my legs. She called them ‘disco legs’. They were all over the place and I never bothered too much about it until I started falling while cutting the grass and doing other jobs around our home in Galston. We had a slightly sloping garden and I put it down to that and a combination of slightly damp grass. But one day I fell off the steps leading to our conservatory and landed about 15 feet away with a broken finger. My medic training kicked in and I managed to strap my fingers together and waited until my wife came home to take me to A&E in Kilmarnock.

“After that, while watching television one afternoon, I had this strange feeling of being cut in half with the left side of my body feeling quite numb which didn’t last too long. But it happened again that evening and the next morning Anne was on the phone to our local doctor. The doctor phoned Crosshouse Hospital right away and Anne ran me there to A&E. I was in there for four weeks with these mini strokes hitting me around ten/twelve times a day. I was transferred to the Neurosurgical unit in the old hospital, Glasgow, for further investigation for another two weeks before being discharged, clear…….Cause? Unknown!

“After that I was in the main new hospital in Ayr to have a large lump checked. Some doctors thought it could have been an Aneurism in my main artery in the joint at the top of my left leg, which could be dangerous. After 10 days, with numerous tests, the consultant decided to operate. Turns out it was a cyst, a bloody big one, much to my relief and the consultant’s. Unfortunately, the surgeon said ‘To remove it they had to cut the nerves to the inner side leg to get it out’. They did say that the nerves would regrow again; they never have and my inner leg is still numb from the crotch down to underneath my knee and foot.

“It wasn’t until we moved to Rutherglen in 2013 that I saw the consultant at the Queen Elizabeth Hospital whom, after a series of more tests, told me I had Motor Neurone Disease. Together with my wife Anne he told us what this consisted of and described in detail what was likely to happen; and how much this would change our lives and that of our family and friends. And that there was no cure or drug to combat it. I can’t say that I was particularly stunned by the news as I had already been researching what was happening to me and came to the conclusion it could be MND. I was particularly sorry for my wife and family as the caring for me could, or would, be quite an undertaking.

“In order to keep me mobile and independent, we bought a scooter. When the sun shines I’m out on it for shopping and head along the Clyde walkway right into Glasgow Green. Great fun!”

Since his diagnosis in 2013 George’s symptoms have progressed and he now has problems walking, swallowing and speaking.

He said, “My feet and legs from the knees down are like leaden weights. At times, almost impossible to lift off the floor. Consequently, I have fallen a lot at home, out in the paved area out back and when out with Anne and friends. So far I have managed to avoid breakages, except for my little finger the first time.

“I also find swallowing a bit tricky at times, as this disease causes my mouth to produce excess saliva almost all day, so I have to watch what I eat and how to swallow correctly. My voice is almost non-existent now, much to my great sorrow as I used to sing around the house all the time. Not that I have a great voice, but my mum and sister and I, when we were young, sang along with the radio then and we were happy. And we were in all the church operettas and plays in school. Happy days. So, I miss singing and talking and joining conversations.

“My facial and throat muscles don’t allow me to form words quickly hence, I just sit and listen now with the occasional word in. Also saliva seems to be most prevalent when I try to speak so I go through a lot of paper hankies while trying to hold a conversation. Sometimes the words come out right and sometimes not at all. I got a small iPad from the NHS with a word and voice app which allows me to type in what I want to say; such as, ‘I would like a cup of tea please’ or ‘I have to go to the bathroom’ or ‘I have Motor Neurone Disease and I can’t speak or walk very well’. You get the idea. The one thing wrong with it is, it’s not instant and I have to wait until it and the program fires up. So I don’t use it too often but I’m very grateful to have it. Very handy with people who don’t know me, because anyone looking at me wouldn’t know I have anything wrong with me. I look normal but it takes a great deal of energy and time to look and feel normal.

“MND is the most frustrating, annoying and mind numbing disease that I know of. After leading such a happy, lively life with golf, snooker, table tennis and squash and being in business, I find this life strange with not being able to do the things I used to do for my wife, family and friends. But, the one thing I haven’t done is, sit down and done nothing.

“This disease has opened up a new and exciting chapter in my life. Not for me to go moping and weeping about what has happened. New horizons have appeared and I’m enjoying every day. Okay, so I have some bad days too. My family and friends help me whenever they are needed.

“To keep my brain active, I’m writing a book and have done since 1999, when I got my first computer. So far I’ve only got 10 chapters written. It’s called…….I, My, Me and Mine.” Very boring stuff really as it is full of the things I have done, the people I have met, the jobs I have worked at and some fact and fiction thrown in. I doubt I’ll ever finish it as my memory is not what it should be nowadays.

“I also paint in watercolour now for my own enjoyment. Having painted in oils, gouache, acrylics, soft pastels, charcoal and pencil etc., for over forty years. Together with my exercises which I do to keep legs, feet and arms reasonably supple.”

This MND Awareness Week we launched a new campaign to raise awareness of the stigmas and misconceptions faced by those affected by MND.

George shared his thoughts on this issue, “MND is not contagious and cannot be passed from one person to another. I make this plain to people who do not know what MND is. Some people think because I cannot speak I don’t understand what is being said but at 79 there is nothing wrong with the old brain!”

Click here to find out more about our Myth-Busting MND campaign.