Cork man with Motor Nuerone Disease encouraging others to give up their voice to raise awareness

A Cork man has shared his experience of living with Motor Neurone Disease to highlight the impact it has on the lives of the 400 people living with the condition across Ireland.

Caleb Sheehan (51) from Cork, who is the Irish Motor Neurone Disease Association's (IMNDA) #Voice4MND sponsored silence ambassador, shared his story as part of the association’s national campaign to raise awareness of the disease.

Mr Sheehan was diagnosed with MND in 2022 and while he can still talk, his speech is significantly impaired.

“My speech is significantly impaired, and my swallowing has become more problematic, but I’m alive. I have hope,” he said.

“My MND journey began in late spring 2021 when I noticed a tremor in my right shoulder. The muscle seemed to be rippling under the skin.

“I attended my first MND clinic and drove back to Cork that evening where we broke the news to our families. 

"We did not tell our kids at that point and we decided to wait until the end of the school/college year.

“As the disease progressed, I began to miss the everyday routine things that I can no longer do. I missed kicking a ball around with my son or training my daughter's football team, simple everyday things we all take for granted.

“I grieved for my old life until one day it struck me that I wasn’t living, and that wasn’t fair to my family and friends," he added. 

"I knew that I had to get back to living so that is what I have been trying to do.” 

Mr Sheehan is encouraging people to get involved in the IMNDA's sponsored silence campaign, #Voice4MND, where people are asked to give up their voice so they can experience what it is like for someone with MND.

People are asked to stay silent for a minimum of 30 minutes so they can experience what it would be like to lose their voice, and are asked to then imagine one hour, one day, and one week without their voice.

To sign up for our sponsored silence, visit the IMNDA website at www.imnda.ie and fill out the online registration form.