Alan Shares Story with MND

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 Bicester 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 additional support needs.

Alan was diagnosed with the muscle wasting condition, MND, in January 2017. He said “I had my first symptoms in September 2016. I was down in Portsmouth doing some guest lecturing on a quality management course. As I was walking about 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, 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 (Apr 2017), and a walking stick (Jan 2018) for short distances. In March 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. Each stage of the disease brings new challenges. I’m at the stage where my legs are very weak. I try to just deal on 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 the MND Scotland’s website to learn more. My daughter had a tough decision to make. She had plans in place to move to Bicester, 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; it’s a romantic city anyway and when we got there our friends had arranged for champagne and chocolates at our hotel. That got me quite emotional.

“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 BBQ with about 50 friends and family and it turned out to be a great day.

“You end up doing things you never would’ve before; 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. We made a lot of great memories on that trip.

“Now we can’t be quite as impulsive because I need to plan more. I need think more about how I’m going to get around, what the accommodation is like. So it’s harder but this year we have a few great activities coming up too. 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. Before my daughter moved away we used to do a ‘family night’ every Thursday. We’ve been 10-pin bowling (I won that even with my dodgy leg), crazy golf and go-karting. The go-karting definitely wasn’t for me, I finished last; we don’t talk about that one anymore” he joked.

“I used to play golf at least once a week. That’s the first big activity that I had to give up. I now need to find a new hobby/sport.”

Alan reflected on the support he and his family have received from friends, family, his employer and the charity, MND Scotland.

He said “Everyone is really supportive. MND Scotland has lots of free services available; we’ve used their complementary therapy services for massages and physiotherapy, we’ve had help with our welfare and benefits forms, and we attend the local support group events.

“My employer has been great too. I’ve reducing to working two and half days a week because it’s just too much to do full-time. “I’ve been okay about reducing my working week, it enables me to minimize fatigue. I just have to think; where do I really want to spend and focus my time?

“Friends and family have been doing lots of fundraising for MND Scotland. At the moment the total is around £6,000; through hikes up Ben Nevis, night cycles, choir events, Marathons and the MND Scotland’s Fun Run, to name a few. They have been amazing and everyone is so generous with money and time.”

Find out what else is happening this MND Awareness Week.