Tommy’s 26 years with MND

Tommy, who was born and raised in Glasgow, bravely shared his story with MND Scotland in 2017, having received support from the charity, after he was diagnosed with motor neuron disease (MND) in 1997. 

Prior to his diagnosis, Tommy experienced slurred speech and difficulties walking, prompting a referral to a specialist and a lengthy series of tests before he finally received the devastating news that he was living with MND.  

Since originally sharing his story, Tommy has experienced significant changes in his health and now, ahead of Global MND Awareness Day (June 21st), he aims to raise further awareness of MND by opening up about how his life has continued to change over the past six years. 

Giving an update on his physical condition, Tommy said: “I’ve lost my speech and can’t swallow solids anymore. I rely on a Peg feed overnight and can only sip drinks. My left hand is no longer functional, and I experience pain in my left shoulder.  

“Using an electric wheelchair and scooter has become essential for getting around.” 

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, swallow or breathe unaided and the average life expectancy is just 18 months from diagnosis. 

He added: “When I was diagnosed in 1997, I was warned that I might have only 3 to 4 years before my health declined and I had a Peg fitted at that time.  

“I turned 80 in December and while my MND doesn’t worry me, I remain cautious of any new pains but at this point, I don’t require any new support.” 

Recently, Tommy faced new challenges when a rare accident occurred during a Botox treatment for his left shoulder when the needle made painful contact with the bone, causing damage to two discs in his spine. 

After receiving care from district nurses, Tommy found it difficult to sleep and required regular injections to help him rest. Ultimately, due to the need for assistance and support, Tommy made the decision to move to a care home, where he has now been for over two years. 

Tommy said: “Although my MND is stable, infections or colds take longer to clear up. I face difficulties with excess saliva build up, but Botox injections to my saliva glands provide some relief.  

“To be honest, my main concern currently is the leaking wound from the new Peg I had fitted in February 2021 but right now I’m just waiting to hear back from the Gastro department.” 

Despite the difficult circumstances, Tommy has formed a good rapport with the staff and manages to maintain connections with his family, visiting his daughters on Sundays and occasionally getting out to a local pub near the care home on Thursdays. 

Focusing on the present, Tommy said: “It’s an interesting experience being in a care home, having to adjust to other people’s illnesses and whatnot, but health-wise, I just do what I can to stay as fit and positive as possible.” 

Last year, MND Scotland announced that it would be making stays at its two accessible holiday facilities free for people living with MND across the UK. 

Expressing his gratitude for the support he currently receives, Tommy said: “I’ve been going to the MND lodge at St Andrews every year for a break funded by MND Scotland. I’ve used a folding electric scooter, partly funded by the Doddie Weir Foundation, during these trips and I also appreciate the visits from my MND nurse every three months. 

“Although I don’t know much about the new clinical trials, the increased financial input gives me hope for future MND diagnoses and I am incredibly thankful to all the fundraisers and sponsors who have and continue to support the cause.” 

MND Scotland’s CEO, Rachel Maitland said: “I’d like to thank Tommy for bravely sharing his story with us again. Thanks to the courage of people like Tommy, we can continue to raise awareness about motor neuron disease, which plays a crucial role in helping us to secure funding for vital research.

“It’s wonderful to hear about how MND Scotland has been able to provide Tommy with support over the past six years and we will continue to do all that we can to keep making time count for people affected by this devastating disease.”

You can help us continue to support people like Tommy by making a donation here. For more ways to get involved with our work, please visit us here.