Saturday 20 July 2019

Join Sharon in her silence

John Manning

A woman from Donabate who was robbed of her voice by Motor Neurone Disease is appealing to the public to take on a sponsored silence this February in solidarity with people with MND across the country, and raise some cash for the Irish Motor Neuron Disease Association (IMNDA) in the process.

Sharon Friel is 40 years old and lives in Donabate. She was diagnosed with MND in 2012 and since her diagnosis, Sharon can no longer walk and uses a wheelchair.

She can no longer speak and communicates with the use of a computer communication aid. Sharon can no longer speak to her husband, Conall or little six-year-old boy, Senan and according to the IMNDA, Sharon, like many others with MND won't be able to utter the words 'I love you' this Valentine's Day.

Between 80-95% of people with Motor Neurone Disease (MND) will experience some form of speech loss before they die. Sharon is asking people to take on sponsored silences to help raise awareness of this fact.

In Sharon's own words: 'Communication is made up of words, tone and body language, I've lost all three. It takes all my energy to say each and every word and I end up repeating myself several times to be understood, it's exhausting and very frustrating.

'I'm missing out on parenting my son, it hard to correct a child when it takes a few minutes to type your message, he just bounces away oblivious, lucky he's such a good boy.

'I'm so proud of my six-year-old son, how much he accepts my disability and how he treats me normally. My husband is my rock, he does everything for us. As well as working full time he is effectively a single dad, a carer and an Irish mammy fussing over Senan and myself.'

This February, the IMNDA is asking you to take on a sponsored silence to experience what it would be like to not be able to communicate.

Stay silent for 30 minutes at work, school or even at home alone. During this time of reflection think 'if today were the last day you could use your voice, what would you say?'

Share your last words with the IMNDA on Facebook and twitter (@IMNDA) by using #Voice4MND.

All you have to do is pick a day, time and location where you will take on your sponsored silence. Sponsor cards are available from the IMNDA office, just email or you can text 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), then tell the charity what would be the last thing you would say if you knew you would lose your voice #Voice4MND.

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 86% of its income.

Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. T his 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.

Fingal Independent