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Allan Barr

Glasgow man, Allan Barr, recalls his diagnosis of Motor Neurone Disease 13 years ago and shares his experience with us.

Allan Barr

Posted : 19/12/2016

Glasgow man, Allan Barr (56), was diagnosed with the terminal illness, Motor Neurone Disease (MND), 13 years ago.

Unfortunately this slow progression of the illness is not the reality for most people with MND, with the average life expectancy from diagnosis just 14 months. 

The regular gym goer from Toryglen has been married to Carol-Anne (56), a part-time sales assistant, for 34 years and together they have two children, Deborah (33) and Allan (30).

In early 2000 Allan Senior started to have problems with his left leg. He said, “I first noticed something was wrong when I was at the gym. My left leg was dragging against the treadmill without my control. I used to play junior football so I initially blamed it on an injury and brushed it off.

“Eventually, because it kept happening, I decided to go to the doctors to get it checked, but after some preliminary tests I was transferred to specialists at the hospital. From 2001, I started having MRIs, blood tests, a lumber puncture and other scans to try to find out what was wrong. It was frustrating for Carol-Anne and I not knowing what the problem was or what was happening. They thought it was MS to begin with but it wasn’t until December 2003 that I finally got my diagnosis of Motor Neurone Disease. ‘Merry Christmas’, I thought!

At the time of his diagnosis Allan worked for a company called, Vascutek, which produces medical products for vascular and cardiovascular clinicians. There he managed over 100 production staff for 13 years.

He said, “I really loved my job and management and co-workers were very supportive after my diagnosis. I had to reduce my hours to 29 hours a week because my condition started catching up with me. As time went by my symptoms deteriorated; with regards to voice it became weaker and I couldn’t control my emotions, so I had to stop working in 2010.

“When I was first diagnosed I found it really difficult to come to terms with. I received counselling for six months to help me work through all the emotions I was feeling. It was really helpful and although I still have some bad days, on the whole I am pretty positive about life now.”

Carol-Anne said, “Thank goodness it is the slow progressing kind of MND. Allan is a positive man, he doesn’t let it get him down and that helps me to stay upbeat too.”

Allan continued, “The diagnosis took so long because I have a slow progressing form of MND – which I am grateful for because it means I’ve been able to keep my independence for a lot longer than some others with the illness. Although my symptoms have progressed - I now have difficulties with my voice, swallowing, stiffness and cramps - I am still able to drive and go to the gym on my own. Without my automatic car I would be house bound!

“I was always a fit guy and loved going to the gym and playing junior football. So it’s really important to me that I still exercise while I can – I have even recently started lifting small weights again and I walk in the swimming pool. I know my limits, so I might not do as much as I used to, but I go to the gym and do what I can. It makes me feel great too – it gets my muscles working and I feel mentally refreshed and de-stressed.

“I can use a walking stick to get around the house and for days when I will be out and about I will use my wheelchair. Sometimes I will lose my balance and fall, and still wonder ‘How did that happen?’”

“The thing I fear the most is losing my independence and I worry about the day I might need a ventilator to help me breathe. I go for regular check-ups though and so far my lungs are in good shape!

“My family has been an enormous help and support system. They are my main carers. My kids have both just moved round the corner so I see them all the time, which I love!

“Since I stopped working I’ve enjoyed spending my time going on holiday. My family and I bought an apartment in Spain together last year so Carol-Anne and I try to take a few trips during the year. I feel better in warm weather – the cold makes me really stiff.

“The whole family went to Las Vegas together May 2016 for my son’s 30th birthday, which was great fun – I love having the kids there too. We are a close-knit family.”

Allan went on to praise the charity, MND Scotland for their support over the years, “Carol Ferguson was my MND nurse until recently (she’s just retired) and she has been fantastic. She put us in touch with MND Scotland and the charity has helped us with lots of different things.

“I have borrowed a scooter from their equipment store, which helped me get out and about much more. I go to their support group in Glasgow and it’s good to meet other people in the same situation and share experiences, and stories. I’ve been going for a long time now so if I can help new-comers that’s great and I like seeing people open up to the group over time.

“Carol-Anne and I have both had sessions of complementary therapy through the charity. We’ve had massages, reflexology and aromatherapy. They definitely help me relax and I get a great night’s sleep afterwards.”

Carol-Anne added, “I really enjoy the complementary therapy too. It’s a bit of me time and helps me forget about everything that’s happening. I would definitely recommend it to patients and carers."

Allan finished, “I will keep praying that one day a cure will be found for MND.”

Craig Stockton, CEO of MND Scotland, said “MND Scotland is here to support people in Scotland, like Allan and Carol-Anne, through this difficult journey. Our services are vital to improving the quality of life of people affected by MND and alleviating many of the burdens associated with the disease. I am pleased to hear that our team has been able to make this process a little bit easier for them.

“I’d also like to take this opportunity to thank Allan and Carol-Anne for sharing their story with us and with you. Sharing personal experiences of MND is a great way to raise awareness of how this illness affects people’s lives. and shows the strength and courage people have in the face of a devastating diagnosis.”