Be quiet to make noise about MND

By Ellen O'Regan

Imagine what it is like to not have a voice. Imagine not being able to say ‘I miss you’ to those you haven’t seen in a while - not being able to say ‘I love you’ this Valentine’s Day. For most people living with Motor Neurone Disease (MND), they don’t have to imagine.

Cork woman Patricia Yarrow, who is 70 years old was diagnosed with MND last September, and has been devastated by the disease, which caused her voice to deteriorate so much that she was forced to close her psychotherapy practice.

MND is sometimes referred to as the 1,000 day disease. Most people die within 1,000 days of being diagnosed. In that time, the nerves in the brain and spinal cord are attacked, stopping messages from reaching muscles, which gradually affects the ability to eat, drink, breathe, walk – and even talk. More than 80 per cent of people living with MND will experience some form of speech difficulty during their illness. Some will lose their voice completely.

Patricia is now the face of a sponsored silence campaign with the Irish Motor Neurone Disease Association (IMNDA) this February, asking people to give up their voices for those who have lost theirs to MND.

“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,” said Patricia.

“I am still ‘me’ and will be, as this disease progresses, so please don’t assume, just ask me! I’m still here though silenced!” she said.

Patricia and IMNDA are asking people to take part in a sponsored silence campaign, #Voice4MND, for a minimum of 30 minutes, to really understand what it is like for someone with MND to lose their voice.

The IMNDA depend on people’s generosity for over 83 per cent of its income. Money raised for the IMNDA is used to provide specialised services for people with MND such as equipment, financial assistance for home help, advice, and home visits by MND nurses.

To take part, all you have to do is pick a day and duration for your silence, and sign up at imnda.ie. You can donate by texting MND to 50300 to donate €2. 100 per cent of text goes to IMNDA across most network providers. Some providers apply VAT which means a minimum of €1.63 will go to IMNDA.

The helpline is 076-6805278.