Bernie shares his story with MND

Bernie opens up about his diagnosis with Motor Neurone Disease for MND Action Week.

Bernie shares his story with MND

Posted : 17/06/2019

Bernie Rogers (80), from Dumfries, was diagnosed with the terminal illness Motor Neurone Disease (MND) in 2017, and is now sharing his story to raise awareness during MND Action Week (17th – 23rd June).

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.

Born and bred in Manchester, Bernie set up a successful removals and storage company in 1969, specialising in the UK distribution of imported furniture from Scandinavia, with a weekly service to Scotland.

As a result, Bernie decided to buy a holiday home in Sandyford, near Lockerbie, in 1991. During this time, Bernie was considering opening a new yard in Scotland, but the ensuing financial crash of 1991 sank his plans for expansion. Bernie decided to hold on to the holiday home, which had previously been owned by famed country music stars Peggy Seeger and Ewan McColl.

After selling his company in 1999, Bernie was asked by the new owners to come on board as an advisor based in Glasgow, allowing him to relocate permanently to Sandyford. After retiring in 2002, Bernie decided to study history and philosophy at Glasgow University, where he met Christine “Chris” Ford (60) a fellow mature student, who was retraining to become an English teacher.

It was 14 years later, in 2016, that Bernie first noticed that there was something amiss with his health.

Bernie said: “I ended up selling the house in Sandyford because I was living there on my own and on three occasions I had bad falls. During my first fall, my ankle snapped and turned right around. I was waiting, splayed out in the back garden in the pouring rain, for two hours before the ambulance got to me. I had a business partner living near to me at the time, and she rang for an ambulance for me.

“I had two other bad falls when I was on my own and I had to call an ambulance, but after the first fall, I always kept a mobile phone on me. After the last fall in 2015, Chris and her kids insisted that I come live here with them.”

After moving in with Christine, it was her daughter, Olivia (27), who lives with them, who was the first to notice that Bernie’s voice was changing.

He said: “The tone of my voice has changed and today I can get tired very easily if I speak for a long time. I’ve also started to forget words – so there’s clearly a cognitive side as well. I can be thinking of a footballer that I’ve seen and known for a long time and I can forget the name completely, and I’ll remember it an hour or so later, and I think it’s connected.”

Shortly after, Bernie decided to go to the GP about his falls.

“When I went to the GP about it, they couldn’t understand how I had suffered these falls and they referred me on to the falls clinic at the hospital in Dumfries. I went for a check-up, and I was in shorts at the time as it was a nice October day. The doctor got me on the trolley and he said, ‘pull up your shorts so I can see the top of your leg’, and he sat there staring at it for 5 or 6 minutes, not saying anything. Then he suddenly said ‘I’ve seen it - there’s a tick in your leg’. He thought it could be one of two things, one of which was MND.

“Chris had been with me all morning – my appointment was supposed to be at 9am, but when it got to midday, Chris had to return to teach her class, so I stayed to hear the feedback.

“They said to me that they believed that what I was experiencing was the onset of MND. The doctor asked if I knew what MND was and I said Motor Neurone Disease, and he said, yes like Professor Stephen Hawking – you could end up like that.

“There were two nurses in the room and when I was getting up to leave one of the nurses grabbed a hold of me and asked how I was getting home. I said, ‘I’m walking, it’s only a mile and a half’. She said, ‘After that bad news?’, and I just said it makes no difference. If I’ve got something I’ve got it. She made me a cup of tea and was insisting that I call a taxi, but I ended up walking home.

“It was a surprise more than a shock – at least it explained why I was suffering falls and having problems with my speech. I realised that I might end up losing my voice completely, like Professor Stephen Hawking.”

Despite receiving such a severe diagnosis, Bernie held on to his humour to get him through this difficult time.

“I was 78 years old then. I had planned all my life, financially, to reach about 75 maximum – so I had spent all my money anyway! Ever since I turned 75 I’ve thought, so what, you’ve got to die of something!

“Chris didn’t arrive home until at least 10 o’clock that night because she had a parents evening. She asked how I got on and I told her that they had diagnosed MND. She was more upset than I was and she said I should’ve called her.”

Today, Bernie struggles with his balance and very occasionally experiences bouts of distorted vision, which he describes as similar to switching off an old-fashioned television.

“My health is deteriorating slowly, I’ve been very lucky. Within days, they started banking my voice at the hospital and I’d go down every week to do a little more. Eventually, they said they had enough to recreate my voice if I ever lose it.

“It’s still difficult because I was always very fit and active my whole life. I played football my whole life and I would always attend games when I was a schoolboy. I used to play, but I tore a ligament in the 1960s and so I became a goal keeper. After a couple of years doing that, and after winning every local competition, I packed that up and eventually became a first class referee. Even today, despite my diagnosis with MND, I still try my best to walk 2-3 miles a day if the weather is fair.”

He said: “The Council has helped by putting a ramp in down the step to my back garden and has helped install grips and an extra bannister in the house. I’ve also found the MND Scotland support groups in Dumfries useful, because I get to meet other people affected by MND.

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.

“When I first went to the MND Scotland support group in Dumfries I came away thinking that I’m very lucky. There’s a chap at the support group who, the first time I went, had some problems gripping things with his hands. Now he can’t hold anything.

“MND Scotland has also helped me out with two Time Out Grants which we’ve used for holidays in the south of Spain. It’s nice to get away for a bit of respite and to forget about everything. Thankfully, I’ve not needed to use any of the charity’s other services yet.”

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.