This MND Awareness Week (18th – 24th June) Linda is raising awareness of the disease by sharing her story. 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.
Linda, who now lives in Beith, Ayrshire, is married to David (62) and together they have two sons, Jordan (25) and Calum (22).
Linda, who worked for Tennent’s in Glasgow for 27 years has started to lose her voice to MND, a key asset during her time as a tour guide. Linda loved her job and was heartbroken when she had to leave.
“I found it really hard to stop working. I loved my job, particularly meeting new people every day as part of the brewery tours. I met my husband-to-be on my first day of work; I was to be brewery guide and David was a brewer at the time, so he put me through my paces of learning the brewing process.
“I became very passionate about the history of the company and did many other jobs, always returning to where my passion was - tour guiding. I'm very much a people's person, so being a gab came naturally to me; walking and talking was my forte.
“Tennent’s have been so supportive and they even sent David and I on an overnight to Gleneagles recently.”
Linda first realised something was happening to her speech in 2014 while on holiday. She said, “The first time I noticed something was wrong was after two sips of a cocktail when I was on holiday. My speech was slurring but I felt completely sober. Then after doing a Halloween tour at the brewery, my third tour of the day, I noticed speech was starting to slur again.
“I went to the doctor and it was treated as a stroke, but then my right leg started to drag too. I began physiotherapy but the doctor sent me to yet another consultant who thought it might be all in my mind, that was it. I pushed for someone else to have a look because now I was having to use a walking aid – I knew something was wrong – it wasn’t all in my head. So, I was referred to another consultant in May 2017.
“During this appointment the doctor mentioned Bulbar, a type of Motor Neurone Disease, which I had never heard of, although David had. On receiving this news, we decided to book a family holiday with the boys. After more tests, I was finally diagnosed with MND in August 2017. It just so happens that we left on the family holiday the following day but we never spoke about it once while we were away.
“In a weird way I was relieved, in that the uncertainty was gone. It takes time to come to terms with that sort of news and that's probably the biggest change; we are all dealing with it better now. I found myself and my family faced with a whole new horizon. In a relatively short period of time I found challenges in the most basic activities that we would all take for granted. On a daily basis, we are confronted with new obstacles and realities. I was a blether, so the deterioration in my speech has been hard to adjust to, especially around strangers.” Linda joked, “I look fine so I'm sure they think I have been at the sherry.
“It's really hard thinking about all the things I took for granted, which are now major tasks. My sons think nothing of it now, but sometimes they have to help with getting my trousers, shoes and socks on, or hanging out the washing, because I have lost all my independence to this illness. Your whole life changes. I would just love to get away for a week to somewhere hot, which we will do, but it’s like planning an expedition now, and it's so frustrating.
“It really does affect everyone in the family but that said, there is always a choice and I have decided mine will be to continue as I always have, and find purpose and joy in every experience including this one. It's devastating news but I think we all now try to be positive and not dwell on the future too much.
“I want to enjoy my family and friends and ensure we have the opportunity to enjoy activities together and keep up the fun and laughter along the way. Anyone who knows me, knows that I love life to the fullest and love to see it filled with joy, laughter, new adventures, good food, good company and good fun. I love to ‘lunch’ and party where possible; and then I pay my visit to the slimming club and the Curves club as penance for all of this.”
During this time, Linda reflects on the support she has received from the charity, MND Scotland, “MND Scotland has been a great help with plenty of support either financially or with advice. Anything that reduces the stress, be it a short holiday or help with a wet room, makes it that bit easier. I go to the support group in Irvine which is good because you get a lot of information from it and it’s an opportunity to meet others going through the same thing.”
Since her diagnosis friends and family have rallied together to help raise money and awareness for MND Scotland.
“Now I've come to terms with the diagnosis, my friends have been doing great fundraising and having fun along the way. This means a committee meeting with wine! We have lots going on; Jordan is doing the Edinburgh Marathon and we have a charity night in July which should be a good night. Some friends did the Kiltwalk in Glasgow and another friend is making shortbread - she can't keep up with orders. I also went to MND Scotland’s zip slide along the Clyde to support of a few of my friends; I did ask if I could do it but insurance wouldn't let me so I just enjoyed the after party instead.
“I will continue to focus on helping raise awareness and funds in the hope that the diagnosis for future generations will be brighter and less final than the one of today.”
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