Denny dad on living with MND

The 55-year-old from Denny was told he had Motor Neurone Disease (MND), a condition which affects the nerves in the brain and spinal cord that tell the muscles what to do. With MND, messages from these nerves gradually stop reaching the muscles, leading them to weaken, stiffen and waste.

As well as making the most of the time he has left, Alan is determined to highlight the disease during the current MND Awareness Week which runs from June 18 to 24.

Alan and his wife, Beverley (52), have three children Connor (22), Ross (20) and Emma (18). Connor is an electrician and Ross is an IT engineer, while Emma is in Witney, near Oxford, doing mission work for a year. Alan works for a large IT company as a quality manager, and Bev is a teaching assistant for children with learning disabilities.

Alan was diagnosed with MND in January 2017.

He said “I had my first symptoms in September 2016. I was at Portsmouth University doing some guest lecturing on a quality management course. As I was walking around the town my right foot kept clipping the pavement. It happened about four or five times in the space of a mile, and I thought ‘that’s a bit strange’.

“As the symptoms progressed I developed leg cramps and experienced some minor balance issues, so I went to see my GP in December. Three weeks later I was diagnosed with MND, which is very quick relative to what I hear from other patients.

“Since my original diagnosis, the progressive weakness has resulted in me using an ankle brace, and a walking stick for short distances. In April I bought a Segway wheelchair that I use for longer journeys.

“It’s a frustrating disease to understand, the cause is unknown, there is no cure, and the progression rate is different for everyone, so you have no idea how or when the disease will progress; but then again maybe it’s better not to know.

“In terms of research for a cure, I’m currently supporting one of the studies of the disease at the Anne Rowling Clinic, but as yet I have not participated in any clinical trials. That’s one aspect where I’d like to see more progress: we need more clinical trials driven by UK research establishments.

“Each stage of the disease brings new challenges. I’m at the stage where my legs are very weak. I try to just deal with one challenge at a time and not dwell too much on the future. You’ve just got to be positive about where you are now and enjoy life to the full.

“Telling the kids was hard. Connor had actually learned about MND at his church group so he knew about it already. Ross and Emma used MND Scotland’s website to learn more. My daughter had a tough decision to make around the time of the diagnosis. She already had plans in place to move to Witney, but wondered if it was still the right decision. In the end we concluded it was best for her to go – she needs to follow her own dreams.”

After his diagnosis Alan and his family decided to make the most of the time they have left together.

He said “Bizarrely after I was diagnosed I had a really great year. If you had spoken to me in January that would have been a ridiculous thought, but Beverley and I just decided we’d better start doing the things we’ve always wanted to do, and it was an amazing year.

“We took a trip to Paris which was magical, then we had trips to Prague, La Cala, Pietrasanta, London, and a family cruise around the Western Mediterranean. It was also my 55th birthday last July and even though it’s not a big one, we thought – well we better make it a big one. So, we had a barbecue with about 50 friends and family and it turned out to be a great day.

“You sometimes end up doing things you never would’ve before; in October 2017 I took the boys for a trip to Monaco. The highlight was seeing their faces when we hired a Ferrari and a Lamborghini for a few hours, so that they could drive around Monte Carlo.

“Now we can’t be quite as impulsive because I need to plan more. I need to think about how I’m going to get about, what the accommodation is like. However, this year we do have a few events coming up. It’s our 25th wedding anniversary in July so we will have a party at the house, and we have another family cruise booked around the Baltics. The idea is that if I get on a cruise ship it’ll do the travelling for me.

“I like being busy; it’s a bit of a distraction. I used to play golf at least once a week. That’s the first big thing that I had to give up. I now need to find myself a new hobby/sport.”