Uddingston man talks about life before and after a diagnosis of Motor Neurone Disease
MND describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do.
As the messages gradually stop reaching the muscles they weaken, stiffen and waste which can affect the ability to walk, talk, eat, drink and breathe.
MND affects everyone differently, but inevitably it is life-shortening and there is no cure.
In the space of a year father-of-three Ian went from believing he maybe needed a knee replacement to finding himself fearing he would become like Stephen Hawkins.
Seven months after his diagnosis for MND he still finds just saying the name of the disease fairly traumatic.
Ian said: “I am 61-years-old. To a 10-year-old, an old man. To a 50-year-old, a young thing.
“Working as a policeman and now with Scottish Ambulance Service I had seen many people worse off than me. While sympathetic, like so many I was able to adopt an ‘as long as it’s not me or my family’ approach. It’s an approach you have to use or you could be consumed by it all.
“I was snapped up at 21 by my wife, Marie, who clearly knows a good thing when she sees it, and we have three great kids who have grown into three great adults – Lynn is now 34, Susan 31 and Alan 29.
“Around November 2017 I went to see my doctor complaining of weakened lower legs and a painful right knee. The sore knee had followed me since a bad fall attempting skiing in my 20s. The doctor focused on the knee problem resulting in a visit during February 2018 to the Golden Jubilee Hospital in Clydebank.
“By this time I had developed a bit of a limp and a bit of foot drop on the right leg. Although a knee replacement was on the cards, the advice was to put it off as long as possible. Make your first replacement your last, I was told. ‘You’re still a young man and a replacement will only last 15 years’, I remember joking he was being a bit optimistic whilst inwardly thinking I should last that and more.
“Various doctor appointments still seemed to focus on my knee with my leg problem seen as something that would resolve itself with some help from physiotherapy.
“In the middle of 2018 I went back to my doctor and insisted some examination of my legs should take place. Neurology hospital visits followed and nerve damage was still suspected, after two MRI scans some weeks later the neurologist called with good news and bad news – nothing had been found in the scans of my spine and head, but he could not find an obvious reason for my problem.
“By this time I had graduated from a limp to a stick to crutches and a metal frame zimmer, wishing they would hurry up and find this nerve problem so I could get back to normal.
“I tried to disguise the problem as much as possible while at work, although as time went on I became more and more concerned, and it became more obvious. I didn’t think I was compromising anyone at that time. My job included driving an emergency ambulance and making any decisions to remove myself from this role difficult – driving was not a problem, but manoeuvring a heavy trolley was.
“Before I could make any decision about my continuing capability I had a fall at work. I couldn’t get up initially and before I could make further attempts I was ‘saved’ by two paramedic colleagues who came upon me. I had mixed emotions. A combo of embarrassment, bewilderment and a slight groin pain. I went home shortly after.
“I think I felt that if I kept going at work everything would be okay as I could keep normality going. Having to go off caused me to become depressed and even more eager to get answers, but none were readily forthcoming.
“After being off for a short time I agreed with my bosses to return on office duties. My bosses and colleagues at Scottish Ambulance Service ScotSTAR base have been amazing – but, whatever this problem was it was getting worse.
“On the December 19, 2018, I went into hospital to get results on a recent test to find out how they were going to fix a limpy right leg. Maybe a quick operation and all would be well – I left with a diagnosis of MND ... Merry Christmas!
“Images of Stephen Hawkins sprang to mind and I was consumed with the idea that before too long I would be unable to communicate readily or move, and unlike him I know nothing about the universe, wormholes and the like. The thought of existing in a silent and unresponsive body is terrifying, and in my mind it was something that would happen sooner than later.
“Family, friends, and my wife, in particular, have been fantastic. The NHS, local authority and MND Scotland have also provided amazing support and help. It seems strange and inappropriate to think if you’re going to have a ‘life limiting’ illness then you want to have MND Scotland on your side, but the truth is that once they become aware of your diagnosis they are relentless in providing all sort of help.
“Some people might find the constant flow of people sorting out their life as an intrusion, but I was delighted to see that so many people I had never met could show so much interest in my newly discovered situation. It was like being unconditionally invited into an elite group or club. Only it did come with a condition.
“Some months later and I am still at work, although my role has changed. The next time I will see the inside of an ambulance will be my next visit to hospital as a patient.
“I still get very emotional, but I can now say ‘MOTOR NEURONE DISEASE’ without bursting into tears. I’m getting better emotionally and still have a good laugh at work and home.
“Things are mainly still confined to the right leg, and I’ve read very little about MND. I know things only go one way so at this point I don’t need to know any more. I am a bit slower since diagnosis, that may be psychological so I’m conscious of trying a bit harder, but there is a balance with fatigue.
“I’ve been asked if staying positive is important. Currently I don’t see any positivity, but I put it to the back of my mind whenever I can, my years of watching bad stuff happening to others has set me up to deal with it in my own way ... for now. I know my family have their ups and downs and that’s hard. My wife is still processing it but like the rest of us it’s early days.
“MND Scotland recently found a mobility scooter for me which I can use at work and which allows me to get around a large building – they never stop thinking of how they can help.
“A couple of falls later and I’m still in one piece. I fell down my stairs on a Wednesday when the speech therapist was at my home and joked I meant to do that on the Friday when the occupational therapist from social work was due to visit and make a decision on a stair lift.
“It’s not easy to keep the bad thoughts out but the reality is I could hobble along for a few years with minimal change or it could all go badly wrong sooner than later and there’s very little I can do – wish me luck!”
To donate £3 to MND Scotland text IMAGINE to 70660 or visit www.mndscotland.org.uk/imagine.