Army veteran shares his diagnosis with MND

Robert Elliot (66) from Stirling was diagnosed with the terminal illness Motor Neurone Disease (MND) in July 2013, and is now sharing his story to raise awareness during MND Action Week.

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.

A retired British Army veteran, Robert is married to May (65). The couple married in their original hometown of Paisley in 1972 and they are parents to John Paul (45), Chantell (38) and Charmaine (33) and are grandparents to Nicole (15) and Arran (6).

Robert said: “I left school at 15, as I never had a good relationship with teachers and authority, and I worked as a grocery boy, a garage hand, and an apprentice tender, before joining the army at 18 in 1971. I spent 33 years in uniform, starting with the Royal Highland Fusiliers in Singapore, returning to my enlistment regiment, the Argyll and Sutherland Highlanders in 1972.

“I carried out many roles in the regiment, including Platoon Sergeant, Colour Sergeant and Sergeant Major, before being commissioned at the rank of Lieutenant and making my way up to Major. I was also awarded the British Empire Medal for work carried out in Northern Ireland and the Falkland Islands – though the latter wasn’t during the war with Argentina.

“While serving, I would take my guitar everywhere and very much enjoyed playing to an audience. In my younger days I played in a band in the late 60s, in the days of flower power. I played whenever the opportunity came my way at parties, Saturday night or Sunday lunchtime in the Sergeants Mess and I have played one or two concerts in my day.”

During his tours of service, Robert had been stationed all around the world, from Germany and Canada, to Cyprus and Kenya. He worked his way up through the ranks eventually securing a commission as Adjutant with a Scottish Territorial Battalion, later becoming a Unit Welfare Officer, Mechanical Transport Officer, Company Second in Command, Technical Quartermaster, Company Commander, Quartermaster, and Recruiting Officer during the war in Afghanistan.

“When I was 53, the battalion was going to Afghanistan and I was asked to stay and recruit because I had a knack for getting new soldiers at a time when recruiting was a very demanding job. Soon after, I retired from uniform and began a contract with the Ministry of Defence looking after the interests of my own regiment in the role of Assistant Regimental Secretary, before getting promoted to Regimental Secretary.”

Leading up to his retirement, Robert managed the MOD headquarters which were located at Stirling Castle, where he was also Secretary and Bookkeeper for two regimental charities – the Regimental Trust and the Regimental Association which is specific to veterans. It was here, after a lifetime of keeping fit and active, that Robert first noticed that he was developing worrying health issues.

“I’ve always led a very fit and active lifestyle, so when I was surprised when I started to fall over on the job. I had terrible pains in my left knee and, through all my experience with lots of other soldiers, I thought I had a problem with the cartilage, so I said I’d get it seen to when I wasn’t so busy. One of my staff eventually insisted I see a doctor because she was very concerned that I was going to fall down the stairs and, incidentally, I did and came away with a few bad bruises. After that I decided to see the doctor and that’s when the process started.”

After meeting with his GP, Robert was referred to a Neurologist and several consultants. After eliminating lots of other conditions from consideration, Robert was told that he could be in the early stages of Motor Neurone Disease.

“I was diagnosed with MND in July 2013. The GP said ‘I’m very sorry there’s nothing I can do for you.’ I was then referred to a neurologist who concurred with the doctor’s assessment and he told me ‘I’m very sorry but you’ve got to go and plan your life.’ I went to Edinburgh 4 months after that and had various tests, electro-conductive tests and the lead Neurologist agreed with the neurologist at Forth Valley about the fact that it was MND and I was officially diagnosed.

“I had never heard of MND until I got home and went on the laptop to find out about it in more detail. At the time there was a documentary on television about a man who had MND, which was recorded by his son. He couldn’t do anything for himself and it put his family through quite a lot. The neurologist said I shouldn’t have watched it, that MND can be very different in different people.”

Nearly six years later, Robert’s neurologist would be proven right.

“Now that a few years have past since I was diagnosed, I’m a lot more positive about the whole thing – life just goes on, albeit with a level of difficulty. I was told I’d likely have no more than two, maybe three years to live, and I’ve overstated that by almost two years now. I can still walk and do a lot of things for myself, but there are certain issues I need my wife to help me out with – showering, initial walking in the morning, that sort of thing.

“My fingers lacking feeling, so buttoning up shirt can be difficult. As time goes on, my speech is starting to waver slightly. My legs don’t work when I wake up in the morning and I need help to get up and around, up and down the stairs a few times to get my legs going, and once I get them going they’re fine until about 9 o’clock at night and then they get tired again. So, the way I try to overcome that is that I walk every day and my target is 5 miles, which I do achieve every day. That’s what keeps me going, because there’s not a lot that people can do for me. I’ve had a lot of good advice and a lot of confidence builders, from the health staff who tell me they can help me when my breathing becomes an issue, or when the headaches start kicking in they can give me oxygen.

“When I can’t swallow anymore, and I have some problems eating at the moment, then they can give me things to help. Looking into the future, I see myself going down a not very pleasant road, but at the end of the day I know that I’ve got a team of professional care people who will do their utmost to make life as bearable as possible for me and that’s the impression I’ve got from the people I’ve seen.

“I’m certainly not afraid of dying. I’ve had a few near misses in my life and I’ve seen people lose their life in the most awful way, so it doesn’t scare me but I’m not in a hurry to go, I have three kids of my own and a great wife who has supported me for 47 years.

“May looks after me where I need looking after but I’m quite headstrong and independent and I don’t want my family too involved until I need them to be involved – after all they have their own lives to lead and their own mark to leave on the world. They worry and they tend to treat you like a little kid sometimes, even if I make a cup of tea they want to make it for me, it’s a bit of an appreciated nonsense. When I can’t make a cup of tea, I’ll be grateful for the help, but it’s just because I’m their father they tend to wrap you up in cotton wool.

“The thing is, I don’t need sympathy, what I need is somebody to say ‘Get on with it. Get it done’ and that’s what I like to hear, not ‘We’ll do this for you, we’ll do that for you.’ When I need help I’ll accept it, but at the moment I’m still my own man and I live and breathe like my own man and I make my own decisions. They seem to have accepted that for the moment, but I can see them hover to move in there, but it ain’t going to happen yet. I’m very proud of the three of them and I appreciate their concerns, but I’ve still got my life to lead. My wife sometimes finds it a bit difficult and it can cause friction between us, but I can’t give into this just yet.

“I’m not under any sort of illusion of what my future holds, but at the moment, one day at a time.”

During MND Action Week, the charity MND Scotland is calling on the public to imagine what it would be like to have MND and to help take action to end MND forever.

Robert said: “The support from MND Scotland has been fantastic. We had a visit from the charity’s Benefits Advice Service, who looked through our finances and helped us sort out what help we can get. It’s incredibly invaluable because, when you’ve been working your whole life, you don’t know where to start. They’ve also helped with a holiday grant, and I try not to miss any of the MND Scotland Support Groups.

“I think MND Scotland is one of these confidence builders in people. If you never had the charity there, where would you go? They can help with holidays, grants for adjustments to your home, equipment to make your life easier, and they also give advice on a wide range of topics. You couldn’t meet a nicer bunch of people – and I wish I’d never met them!”

During MND Action Week we’re calling on the nation to join us and help us to not just imagine a world without MND, but to make it a reality. To donate £3 to MND Scotland text IMAGINE to 70660 or visit www.mndscotland.org.uk/imagine.