There are currently 15 people living with Motor Neurone Disease (MND) in Donegal.
This February the Irish Motor Neurone Disease Association (IMNDA) is running its sponsored silence campaign #Voice4MND.
The organisation is asking people to stay silent for a minimum of 30 minutes so they can experience what it would be like to lose your voice and experience what it is like for someone living with MND.
The IMNDA said: "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.
"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.
"You can also donate to the campaign by texting MND to 50300 to donate €2 (100% of text goes to IMNDA across most network providers. Some providers apply VAT which means a minimum of €1.63 will go to IMNDA. Service Provider: LIKECHARITY. Helpline 076 6805278)."
Patricia Yarrow (70) from Cork was diagnosed with MND last September. This time last year, she had never heard of Motor Neurone Disease. The diagnosis devastated Patricia, she was forced to close her psychotherapy practise as her voice had deteriorated so much.
“Sometimes it is assumed I am drunk or have an intellectual disability, but whatever the assumption, the word I find that fits the experience for me is “diminishing”. I feel ‘less than’ compared to how I used to be and vulnerable, not being able to express or explain myself.
"“My biggest fear around this disease and losing my voice is that people will lose sight of me,” said Patricia.
Madeline O’Connor (65) from Kerry, has been living with MND since April 2020. In September she too had to retire from work, as her slurring voice made it impossible for her to continue her job in the Eir Call Centre.
“What I miss most about losing my voice is being able to have chats with my daughter, Marie and conversations with friends.
“It is difficult to go out into the community when people don’t understand that I require a little more patience” said Madeline.
Sometimes silence can speak volumes. Take on our challenge this February. Don’t let Patricia and Madeline suffer in silence; don’t let them live without a voice. Lose your voice so that others can be heard.
MND is a progressive neurological condition that attacks the motor neurons, 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.
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. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.
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 MND Nurse. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association who generate over 83% of its income.
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