Imagine living your life without the ability to speak. Unfortunately, that is the fate met by most people living with motor neurone disease (MND ).
Valerie O’Carroll (57 ) from Dublin was diagnosed with motor neurone disease in October 2019. She says that since her diagnosis, she is living in denial but is trying to remain positive. It was Valerie’s husband Kieran who noticed a change in his wife of 37 years — her voice. Her voice became quite ‘shaky’ about 18 months before her diagnosis.
On learning her diagnosis, the mum of three said: “I was devastated, I thought I was going to die within months or a year. I kept thinking of my kids and would they cope without me. The fact that my grandchildren were so young, would they remember me? My eldest granddaughter Katie is nearly 14 and I really want to be here for her 21st."
This February, the Irish Motor Neurone Disease Association (IMNDA ) is organising a sponsored silence campaign, #Voice4MND, asking participants to stay silent for a minimum of 30 minutes, to experience what it would be like to lose your voice. A spokesperson explained: "Imagine one hour, one day, one week without your voice. We want you to give up your voice so you can experience what it is like for someone with MND. All you have to do is pick a day and duration for your silence. Then maybe think if you had no voice for a day how would you communicate?"
Valerie O'Carroll added: “I suppose everyone has the same feelings, not wanting to leave those you love, my job which I love, and the people I work with, all of this and so much more. I’m still working and driving and I’m surrounded by very positive people in my job. I’m a very positive person and I intend to stay that way. My advice to anyone who is diagnosed recently is to keep positive, keep doing what you’ve always done for as long as you can. I truly believe there is a cure out there for this disease and together we will find it."
To get involved in the sponsored silence you can email [email protected] to receive your Silence Pack. Participants are asked to spread awareness by sharing their sponsored silence on social media using #Voice4MND and to nominate friends and families, school or work colleagues to take part. You can also donate to the campaign by texting MND to 50300 to donate €2.
