Imagine not being able to say ‘I Love You’. February is the month of love where couples from across the world openly celebrate their affection for each other. But imagine not being able to say ‘I Love You’ this Valentine’s Day. Most people with Motor Neurone Disease (MND) can’t. Between 80-95% of people living with MND will experience some loss of speech before they die.
Patrick (Padge) Kelly is 28 years old from Lucan in Dublin. Padge was diagnosed with MND in 2003 when he was 17. When he was in sixth year in school he noticed that his hand writing had become very messy and that he wasn’t as fast when he played football. One day when he was walking home from the shops with his Gran he found he couldn’t carry the bags for her.
“I went from a limp to needing a crutch to a wheelchair. I can’t move my arms or hands. The worst of all is that my tongue, mouth and diaphragm has also been affected which robbed me of my speech. I could deal with being disabled but not being able to communicate with family and friends was difficult to come to terms with”, said Padge.
Esther Tracey is 58 years old and was diagnosed with MND in 2013. Esther is an amazing cook, and runs her kitchen with the precision of a professional. She may have lost her swallow and speech to MND but that hasn’t dampened her appetite for life.
“The progressive symptoms which have left me without speech and swallow were daunting but with help from my family and friends I can communicate very well. Every challenging step along the way has consistently brought out the fighter in me and the support of the IMNDA has helped me to maintain a positive attitude to keep fighting this”, said Esther.
Thursday 11th February 2016 5B Link Modules class with their teacher Ms. Boland took part in a 30 minute sponsored silence to experience what life is like for Esther and Padge. They fundraised for this activity and raised €260 that they donated to the IMNDA. Marie Reavey, IMNDA visited the student on Thursday 25th February 2016 and spoke to the class about the role and avtivities of the IMNDA (powerpoint attached).
The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind providing care and support to people with Motor Neurone Disease, their families, friends and carers. The IMNDA was set up in 1985 and since then they strive to ensure that each individual receives the care and support that they require to enable them to live as active independent citizens in their community.
Their services include home visiting by an MND nurse, financial assistance to increase homecare packages once recommended by the MND Nurse and where a HSE home care package is already in place, the provision of specialist medical equipment on loan free of charge to their clients, publications on MND and home visits & supports from an Association Visitor. They also support research into the causes and treatment of the disease by providing grants towards scientific and medical research of the highest quality specific to MND
Sometimes silence can speak volumes.
Thank you from the IMNDA:
As you know this February we asked people to ‘Shut Up’ for MND. Our sponsored silence ran for the month of February to demonstrate the impact of losing your speech.
Thanks to Esther and Padge people took on the challenge at home, in work and in their communities. We had a great response from families, work colleagues and schools coming together to take on our silent challenge.
The length people stayed quiet for ranged from 30 minutes right up to a few hours to a few days! One woman did our silence for 2 full days proving that sometimes silence does speak when words can’t.
Sponsor cards flew out the door and the awareness created through the media was brilliant.
More people took on the challenge than last year. More people quit speaking and stayed quiet for MND.
So Thank You! Thank you to absolutely everyone for taking part – the word is now out, now our silence shouts!