Sometimes Silence Speaks Volumes

Sometimes Silence Speaks Volumes

“My voice is very important to me. I still have lots of stories to tell….”

Imagine an hour…a day….a week without speech. Imagine not being able to say ‘I love you’ this Valentine’s Day. Unfortunately that is the fate met by most people living with Motor Neurone Disease (MND). More than 80% of people living with MND will experience some form of speech difficulty during their illness – some will lose their voice completely.

Michael (Mike) Harte is 64 and from Westmeath and was diagnosed with Motor Neurone Disease in January 2021. This year Mike is taking part in the Sponsored Silence to raise awareness of MND… which will be difficult as he loves to talk.

 “Talking tires me out, but this is because of my breathing. I get short of breath and need the Nippy Machine to help me.  When people visit me I keep my speaking time short. I then use Nippy and if they are still there when I finish, I continue on talking! Anyone that knows me knows I always have loads to say!” says Mike

Barry Jennings is 35 from Balla in Mayo and was diagnosed with bulbar palsy, (a type of MND) at just 31 years of age.  He had only started a new job surveying water meters and within a day or two the doctor called and told him he had an appointment the following day to see a Neurologist.

“Christmas 2017, I was singing and noticing I couldn’t sing as good as I used to. And then at a wedding, my friend was joking thinking I was drunk because I was slurring my speech, I had only had a couple of pints so I knew this wasn’t the case.” says Barry

This February we are once again running our sponsored silence campaign #Voice4MND. All we ask is that you stay silent for a minimum of 30 minutes so you can experience what it would be like to lose your voice. Imagine one hour, imagine one day, imagine 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 to pick a day and duration for your silence. Then maybe think if you had no voice for a day how would you communicate – by app, by pen and paper?

To sign up for our Sponsored Silence just visit our website www.imnda.ie and fill out the online registration form. It’s that simple! Spread awareness by sharing your sponsored silence on social media by using #Voice4MND. Nominate friends and families to join you.

 “My voice is very important to me. I still have lots of stories to tell…” says Michael.

Sometimes silence can speak volumes. Take on our challenge this February. Don’t let Michael & Barry suffer in silence; don’t let them live without a voice. Lose your voice so that others can be heard.

“Thankfully I’m very lucky in my progression rate, bulbar palsy starts with your speech and nearly 4 years on I still have a relatively understandable speech.” Says Barry

For more on Michael’s story visit here

For more on Barry’s story visit here

ENDS

For more information please contact:

Derbhla Wynne (086) 014 7549 or email pr@imnda.ie

Images by Garrett White

Caption 1: Pictured is Michael Harte showing his support for the IMNDA February Sponsored Silence #Voice4MND. Imagine one hour, imagine one day, imagine one week without your voice. Lose your voice so that others can be heard. Register at www.imnda.ie

Caption 2: Pictured is Barry Jennings showing his support for the IMNDA February Sponsored Silence #Voice4MND. Imagine one hour, imagine one day, imagine one week without your voice. Lose your voice so that others can be heard. Register at www.imnda.ie

Notes to Editor:

Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.  MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.

The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their carers, families and friends. There are currently over 400 people living with MND in Ireland.

The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by one of our 4 MND Nurses. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association who generated 65% of its income. In 2020, the association availed of extra government grants due to the pandemic. 30% of our funding came from statutory funding, 65% from fundraising & donations and 5% other sources.