A former whisky distillery worker and freelance safety advisor, John isn’t your average older person. With hobbies including weight lifting, motor biking, hiking, swimming, kayaking and yoga, John is one of life’s thrill-seekers.
Nobody would have imagined that his life could change so radically, but on January 26th 2017, the day which Patricia now refers to as ‘Black Thursday’, John was diagnosed with Motor Neurone Disease (MND).
MND is a rapidly progressing terminal illness which stops signals from the brain reaching the muscles. This can cause someone to lose the ability to walk, talk, eat, drink and breathe unaided.
A year on from receiving his devastating diagnosis, John has now decided to share his story to help raise awareness of MND, as he promotes his new book of childhood stories, which he hopes will help raise funds for the charity MND Scotland.
Originally from Moseley in Birmingham, John first moved to Scotland in 1967 to work for The Distillers Company Limited (DCL), now Diageo, in Menstrie doing research on casks.
John and Patricia have three daughters, Sarah, Annabel and Melanie; and three grandchildren, Ella (20), Joe (17) and Robin (12).
“I met Patricia through a common interest in car rallying. We met at the Royal Scottish Automobile Club in Glasgow at the start of The Scottish Rally in 1972. She was a navigator and I was a member of the service crew. We married the following year and lived near Alloa where I worked at that time.
“During our years in Clackmannanshire I enjoyed hill walking and mountaineering all over Scotland and in Europe, Nepal and New Zealand. We also had many family holidays abroad until the girls grew up and left home.
“We moved to Elgin in 1992 when I got a job supervising the construction of a dark grains plant at Glenlossie distillery. After leaving Diageo in 1996 I worked as a freelance safety advisor until I retired in 2013.”
It was just three years after retiring that John decided to seek advice from his GP after unexplained symptoms began interfering with his highly active lifestyle.
“I went to my GP in April 2016 because I was losing strength in my arms. I could tell by the amount of weights I could lift in my Body-Pump class. I couldn’t pull so hard on the paddles when I was kayaking and I couldn’t do hand stands and head stands in yoga classes. I noticed that I got out of breath walking up hills and my biceps had started twitching.
“My GP didn’t know what was wrong, but sent me for chest X-rays in case it was a heart or lung problem.”
These and other tests were inconclusive and John realised that his condition wasn’t improving. He had further appointments in August 2016.
“I went to Dr Gray’s hospital in Elgin and then on to Aberdeen Royal Infirmary in January 2017 where I had two days of examinations to eliminate ailments like Lyme disease and anaemia: I had an MRI scan, lumbar puncture, voice checks and more blood tests. Patricia was with me and on the last day the neurologist broke the news to both of us. I had an inkling what was coming; it was a bit of a blow, but I decided to face up to it.”
John has been forced to give up many of his favorite hobbies since being diagnosed with MND, but now his condition has progressed further, limiting his ability to carry-out everyday tasks.
“I can walk, but not far. My neck aches and I get breathless going up slopes. I had to give up my motor bike because I couldn’t control it at low speeds – going into the garage for example. And I have given up cycling because I can’t hold my head up after a few minutes. I find it hard to swim now and to play the piano - I used to play in a swing band.
“I had heard of MND before I was diagnosed, but thought it was a rare and unusual disease. Now that I have it I see something in the paper about it every week. Celebrities have it, my friends tell me they know someone else with it and I hear of folk with MND wanting help with dying rather than fading away.”
John is enormously grateful to his friends and family, the NHS and MND Scotland, who have continued to offer their support, however he remains frustrated by the restrictions and limitations that his condition places on him.
“The most challenging thing for me is not being able to do things. I’m frustrated that my condition stops me from hill walking, gardening, swimming, lifting weights, kayaking, playing the piano - all the things I loved. It is even more infuriating to struggle with every-day mundane tasks like unscrewing a jar, reaching a shelf or fastening a zipper on my coat. For my family, the most challenging thing has been for them to see me so incapacitated and slumped in a chair.”
Not to be discouraged however, John has been using his time putting pen to paper and has recently completed a book filled with stories from his lively childhood.
“I told the stories to the children and grandchildren when they were young. In 2016 it was Annabel who said I should write them down so that she could illustrate them.”
When John had written the stories, the project quickly became a family effort. His daughters Annabel, a professional illustrator, and Melanie, a graphic designer, decided to lend their skills to help make the idea come to life. His eldest daughter, Sarah, helped with proofreading the finished text.
“Having written the stories I decided that I would arrange to sell books to raise funds for MND Scotland. They have been very good to me, so the least I can do is give something back. All the family thought this was a good idea.”
“The book is called ‘The Robert Stories’ and tells of my childhood, where I would occasionally get into mischief with my brother Alan and our friend Robert - the book’s namesake. We were friends up until the age of eleven but we kind of lost touch after we went to separate secondary schools.”
Despite losing touch with Robert, John never forgot their adventures together. The stories have become legendary in the family and John has enjoyed sharing them.
After over 60 years and with hundreds of miles between them, these boyhood friends finally reconnected in late 2017.
“I was delighted that we got in touch with Robert through my brother, Alan. This was something I hadn’t imagined happening. Robert was thrilled to read the stories and he couldn’t stop laughing! His daughter said that Robert told similar tales to his family when they were young.”
“I think other youngsters will like them as they are simple and amusing. Likewise, adults will remember having similar escapades when they were young.
“Ever since we started selling the books, people keep asking me for more copies for friends and family.”
John now hopes that the tales will entertain many more adults and children while supporting the work of MND Scotland.
The Robert Stories by John Smith is available from Patricia Smith at: firstname.lastname@example.org Price £10 (+ £2 p&p if necessary) £5 from the sale of each book will be donated to MND Scotland.