‘News came as a complete shock’

Marguerite Kiely

For those living with Motor Neurone Disease (MND), the loss of speech becomes a harsh reality.

The frustration of being unable to communicate is the fate faced by most individuals affected by MND. Over 80% of MND patients will encounter speech difficulties during the course of their illness, with some ultimately losing their voice completely.

Caleb Sheehan is 51 and from Bishopstown. The married father of 2 is a retired teacher and was diagnosed with Motor Neurone Disease in 2022. Whilst Caleb can still talk, his speech has been greatly affected.

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. It wasn’t until the tremors also began in my left shoulder that I sought medical advice. After 6 months of tests, I was referred to Prof. Hardiman in Beaumont. My first visit proved inconclusive, and a second visit was scheduled for January 2022.”

On 19 January 2022 Caleb was informed that he was in the early stages of MND: “The news came as a complete shock to me and my wife who had accompanied me to the appointment. It is now 17 months since my diagnosis. I have lost most of the strength in my arms. I have difficulty walking. My speech is significantly impaired, and my swallowing has become more problematic, but I’m alive! I have hope.

“I have a wonderful wife and great kids. My extended family are unbelievably supportive. The Irish Motor Neuron Disease Association (IMNDA) has also been a constant support and a source of hope,” he added.

As part of their campaign to raise awareness for MND, the Irish Motor Neuron Disease Association are running a sponsored silence, encouraging participants to remain silent for at least 30 minutes. The goal is to provide a glimpse into the experience of losing one's voice, shedding light on the challenges faced by people living with MND.

To sign up for the sponsored silence visit imnda.ie.