Tommy Herd shares his story for Awareness Week

Tommy, who was born and raised in Glasgow, moved to Renfrew in the early 70s after he married his childhood sweetheart, Betty. Tommy worked as a draftsman and Betty, who sadly passed away nine years ago, was a weaver in a carpet factory. Together they had three children; Thomas (50), Lynnette (47) and Yvonne (46).

The family moved to South Africa in 1980 for Tommy’s job, where he was a design draughtsman for boilers and pressure vessels in the power industry for 14 years. Then, in 1994, they decided to return home to Scotland and this is when Tommy first became unwell. After numerous tests he was diagnosed with MND in 1995.

Tommy said “The first sign of symptoms was my slurred speech and I had issues walking. I was referred by my GP to the Southern General where it took a long time to receive a diagnosis – this is because there is no test for MND. The specialists did many tests to rule out other potential diseases.

“When I was first diagnosed I was shocked and sad. We all were.”

Tommy had to stop working when he 53 due to his symptoms, particularly his speech as he could no longer use the phone and his walking was unsteady. He is now retired, lives in East Kilbride and has five grandchildren; Dillon, Jonathan, Beth, Emma and Thomas.

He said “From the start it was advised that I had a feeding tube fitted and I’ve had one ever since. I need it now as I can only take soup or soft cheese. I have little use of my left arm and only my daughters can understand my speech – I think it’s more lip reading than understanding.

“My right arm is starting to show signs of going the same way as the left. My legs are painful at times but I still get out, although not far.

“I try my best to keep living my life as much as possible – I like to carry on as normal and people who know me respect this. My kids are great and I love spending time with my grandchildren. I go to Lynette’s house every Sunday to see everyone. I’m a big reader but have to use my iPad now that I can no longer hold a book and enjoy going down to the local pub to see friends.

“I am sharing my story so people know that there is hope of carrying on and it’s not all bad news.”

Tommy has lived with MND for a long time, which is unfortunately not the norm for most people, with the average life expectancy being just 14 months from diagnosis.

Lynnette Cruickshank, Tommy’s daughter, said “When Dad was first diagnosed it was a difficult time for all of us and took us a long time to come to terms with it. It is still hard to see to see him struggle, especially with his lack of ability to talk, as well as not being able to eat as he loved food, particularly seafood.

“We stay positive and this is helped by my dad’s positive attitude to life. He loves spending time with his family and thoroughly enjoys his holidays around the UK. He has a special fondness for Great Yarmouth as we often holidayed there before we left for South Africa, and we are off to Southport in July on a bus tour – he loves to explore new places. He’s also recently started going to the day services at the Kilbride Hospice which he is really enjoying.

“He has deteriorated over the last few years and the illness has taken its toll on all of us but, we all support my dad in whichever way we can, and ensure that he lives his life to the full. My dad is a remarkable man who doesn’t let his illness define him.”

This MND Awareness Week you can support our Thunderclap campaign which will post a message of support on your social media pages and you can update your social media profile picture with our ‘Twibbon’. You can also donate to MND Scotland below or donate £5 by texting CUREMND to 70660.