I’ve got MND or MfND as it’s known by me.
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. A bit of dark humour. How else do you deal with a railway suicide or a patient who has lost the ability to function without constant specialist care?
Already an emotional person I am told MND makes you more emotional, so I now have a great excuse to blubber like a big lassie.
In my younger days I loved football, volleyball and most other sports have been given a go. And do you know that the older I get the better I was!!
I was snapped up at 21 by my now wife, Marie, who clearly knows a good thing when she sees it. A few pounds crept on which my wife kindly described as cuddly.
We have 3 great kids who have grown to 3 great adults. Lynn is now 34, Susan 31 and Alan 29. How did that happen? We are all close and regularly share a laugh. Lynn has a laugh like no other and can find things funny that no other does. Susan describes herself as a comical genius. Alan’s also a funny guy whose catchphrase is, “I’m the baby, gotta luv me.”
Sometime 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 to become a skier in my 20’s. 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 that he was being a bit optimistic whilst inwardly thinking I should last that and more. I needed to in order to fulfil all the future plans.
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. Two MRI scans came next. Some weeks later the Neurologist called with good news and bad news. The good news was that nothing had been found in the scans of my spine and head. The bad news was that 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, thinking I wished 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 more the problem became obvious. I didn’t think I was compromising anyone at that time. My job included driving an emergency ambulance making any decisions to remove myself from this role difficult. Driving was not a problem at this time. 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. A chair was hastily placed behind me before they grabbed the back of my belt and ‘wedgied’ me on to the chair. 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.
Whatever this problem was it was getting worse.
A nerve conductivity test was arranged. There was now a question mark around one of my lower discs and the tests would confirm if this was the problem. I spent a full day waiting for this 20 minute test and all of the next waiting on the result which didn’t come. “Come back next week.”
On the 19th of December 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 the new Hawkins, unable to communicate readily or move. Added to this it occurred to me that I know nothing about the universe, wormholes and the like.
The thought of existing in a silent and unresponsive body is terrifying. In my mind it was something that would happen sooner than later.
Family, friends, and my wife, in particular, have been fantastic.
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. I know it is their job but it seemed more than that. 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 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.
I’ve read very little about MND. I know that things only go one way and at this point don’t need to know any more. I am a bit slower since diagnosis but that may be psychological so I’m conscious of trying a bit harder. Fatigue plays a big part so there’s a balance. Things are mainly still confined to the right leg.
I’ve been asked if staying positive is important. Currently I don’t see any positivity but I’m doing what I did before. I joke and put it to the back of my mind whenever I can. Yes, this time it has happened to me but 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 this is a great new asset 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 that I meant to do that on the Friday when the Occupational Therapist from Social Work Department 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!
For 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.