Ellon Man Speaks Out this MND Awareness Week

Originally from Fife, Bill married Susan Jane McLaren (64) 45 years ago and together the couple have two children, Kirsty (39) and Christopher (37), as well as four grandchildren.

Bill, a Senior Asset Integrity Manager for an Oil & Gas company based in Aberdeen, retired at 62, not primarily because of the illness, although its effects were becoming evident.

He said, “I noticed something was wrong with my left foot in 2000. I had developed Type 2 diabetes in my early 50’s, so assumed this was related to the onset of this disease. I found that my left foot would flop and I seemed unable to feel where it was spatially. The physical action became quite laboured. I went to my local Ellon Healthcare Occupational Therapist. He gave me exercises and later a leg brace; this definitely helped.

“When I started tripping my left foot seemed unable to gauge the height of floors and stairs, and flopped as I walked. I went to my company healthcare doctor, who was unable to determine the cause, which was probably as frustrating for him as me.

“I then started to develop a stammer and my daughter, who is a neurological nurse, had encouraged me to visit my GP to get checked out. So, she had suspected something amiss, but also thought it might be diabetes linked. I was actually so lucky to be diagnosed. I had to go into hospital in 2015 as I developed Trigeminal Neuralgia, a chronic pain disorder; even saying the words brings back emotional memories of the extreme pain. A consultant was able to bring it under control and in the process, said she felt that she would like to take some scans to investigate the symptoms affecting my walk and muscle weakness. She was able to diagnose I had slow progressive MND. How really lucky was I to have Dr. Gerrie on hand – and bless the NHS.

“Initially my response was thankful that I now knew the cause of my weakness – and an understanding of how difficult the diagnosis had been for the doctors. That feeling however, was pretty swiftly succeeded by the classic anger – ‘Why me’, which followed the further classic path to resignation and acceptance. I tend to be fairly pragmatic, but no doubt I was not so great to live with over the first few months. My wife, Sue, stuck with me throughout this period and tolerated my moods. These were hard times for her to manage. How do you deal with ‘miserdisability’? Mr. Personality I was not. I also became quite emotional and would burst into tears uncontrollably. Me – who had sat through Bambi countless times, without the slightest twitch for a handkerchief!

“It’s also difficult for my children. Kirsty, the neurological nurse, is concerned; she has researched the finer detail – like weakness now in my left arm. She has read up on MND variants and the consequences – she keeps a brave face. Her partner John is very supportive and helps out with some of the ‘’physical stuff’. My son, Christopher, however has been quite deep about events so far. I know he worries, but I keep our conversations light, but don’t hide anything from him. Angela his wife is also supportive and searches the web for information and tools to make life a little easier. My oldest grandson goes quiet; David (21), is aware of where we are at, but I try to keep it all light hearted – no point in adding to the pile of ‘angsts’ that already plague him as he makes his way in the world. He is a however, a real ‘cool dude’; he would hate to hear himself described as that – but he is today’s equivalent.

“My other younger grandchildren don’t really fully understand what’s happening – neither would I expect that. Bethany is 15 (going on 25) and is doing well at school. She’s growing up very quickly and becoming a really nice, considerate girl. James is 12 and so into Harry Potter, the films, books and ‘computery’ things, like – animation and all kinds of games and mind challenging systems; so there’s little doubt where his future lies. Adam is the youngest and at 8 is also into computer games, because his brother provides the spur to make it happen. I pretend I understand, but they are light years ahead of me – but great fun.

“I have three brothers – the two eldest I think can’t take it all on board, so they pretty much avoid discussing ‘it’ other than ‘ Hoo ur ye daen’ and move quickly on; it’s their coping mechanism. My twin ‘Onday’ and his wife ‘Mergret’ talk to me openly about MND and we meet up from time to time, which is always very good for us all. Let’s not forget that everyone else may have their aches and woes, so a bit of consideration for others goes a long way.’’

“My wife Sue has been the heroine of the piece and knows how to manage my foibles, always there to support me, not hovering around me – just there when it matters. I have told her she is lovely and I do love her for many other reasons. We have been married for 45 years and I’ve never regretted it; well, except for the time her mother gave me a steaming hot cup of tea that her father had recently glued the handle back on. The consequences were very painful! We survived that.’’

Bill’s progressive symptoms have meant he and his family have had to adjust to the changes in his life.

He said “I have had to take on changes to manage most manual activities that were previously quite unconscious actions. For example, playing football, painting, bowling, writing, digging, wallpapering, ‘domestic goddess stuff,’ and most other DIY ‘stuff’.

he family have had to adjust for me e.g. let me finish my sentences when I stammer – even the youngest grandchildren wait. I am less active, so again they have all had to adjust. So, there are lots of small changes that we all have to absorb, adapt and find common ground to re-establish the new.”

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

Bill said, “I have experienced people avoiding looking you in the eye, not engaging in conversation after asking about your illness, avoiding the ‘’subject’’ and simply cutting you out of conversations. Sometimes people are simply unaware of what MND means, expecting to see you in a wheelchair. I have difficulty walking and find I am often almost barged over by someone desperate to reach their destination and quite visibly annoyed I am in the way. This can describe people’s response to many diseases I am sure. Nevertheless, it is so personal and hurtful.

“I am sharing my story to raise more awareness of MND, those who suffer from it and those who make such major contributions to it – the research, the unsung contributors, supporters and importantly their families. There are so many great causes out there, all vying for attention and funding – so this is my way to help MND be more visible to the public.

“I have received a great deal of support from MND Scotland – in so many areas, both emotional, personal and practical. Simply talking to someone who understands the disease and what the stages represent, how delay tactics can be applied. It has been invaluable to meet up with other MND affected people and their families at my local support group, to take advantage of the massage facility, obtain advice on specialist equipment and other organisations providing supporting activities.

“I cannot express my gratitude sufficiently to everyone for everything done for me and my family, to make this period of my life easier to navigate.

“Whilst it seems perhaps unfair to select an individual/s for special mention, when there are so many unsung others, who are working so hard to support, fund, research and develop a cure for this disease – I would like to do so. Firstly Dr. Gerrie, consultant at Aberdeen Royal Infirmary, for persevering with my case and identifying my MND. Secondly Diane Fraser, my MND Clinical Specialist, who has an amazing amount of energy and presence to ‘make the pill’ a wee bit sweeter. For everyone not mentioned including those who endure the ravages of MND so stoically I offer my admiration and for those who support and help us in every way – my sincerest thanks.’’

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