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Donations Available Until 25th June 2017
Alisha Cas
6y
Melissa O'
6y
€50
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Do you know what the hardest part of coping with MND has been for me?
You’d think it would be not being able to use my hands as well. Or having to learn to speak differently so I can be understood. But it wasn’t. The hardest part of having this debilitating disease was learning to ask for he...
Do you know what the hardest part of coping with MND has been for me?
You’d think it would be not being able to use my hands as well. Or having to learn to speak differently so I can be understood. But it wasn’t. The hardest part of having this debilitating disease was learning to ask for help.
At 59, I’ve just become a grandfather for the first time. While I’m more used to holding rugby balls, I know I’m lucky to be able to hold my precious little grandson. There will come a time soon when I won’t be able to. The grip in my fingers is going so I need a helping hand now with things like buttoning my shirt or lifting.
That’s why I am asking for your support today.
Asking for help doesn’t come easily to me. I prefer to be the one giving a helping hand. I always have. Volunteering has played a huge part of my life, with 40 odd years in the army reserves and rugby clubs and 20 years as a rugby referee. But sadly my ball handling days are over.
Asking for help is hard.
Maybe that’s why it took so long for me to admit something was wrong. I did the Irish male thing and hid it. I had a busy life raising a family, working and helping out with rugby clubs. My Mum always said I had a fantastic grip and that if I caught you, you’d never get away! But my grip began to fade and I was barely able to coordinate a hammer and nail. I was so scared and frustrated. I became clever at adapting to my symptoms, pretending nothing was wrong. I found different ways to pick things up, and pausing techniques to make my voice sound stronger. It was my talking that gave me away though. My sisters were worried I was drinking as I had started to slur my words! They ganged up and made me go to my GP.
It took months of tests but eventually I was told I have MND. Of course I did the worst possible thing I could , I googled it. I spent the next four days just driving around with tears down my face. I had no idea how me and my family were going to cope.
I’m asking for your support today, because I had no idea how to ask then. Although I can no longer hold a rugby ball, I’m secretary of my rugby club. And I volunteer with the IMNDA—as well as being a member. I want to give as long as I can, because I know soon, I’ll have to ask for more and more help.
I’m on my own now. Tragically both my mum and wife died last year within weeks of each other. My kids are great though and my pals are realists who will never let me wallow. My variant of MND is less aggressive than others, but will still be very debilitating. I learned to adapt to hide my disease. Now I know I will have to adapt to live with it. I eventually asked for help and within a week of registering with the IMNDA, one of their nurses arrived at my house. Their response was instant! It makes all the difference having that support on the end of a phone, knowing there is someone there. I’m still adapting but now I do it openly, using a stick, and I know that the IMNDA will provide me with specialised equipment to help me communicate when the time comes. I’m lucky that I have family and friends who will always give me a helping hand when I need it. And I will ask for help too. So here I am, asking for help.
IMNDA Fundraiser Gig For Irish Motor Neurone Disease Association
Sorry to have missed the night hear it was a great success congratulations to you all such a great cause well done for organising this event xx
Best of luck tonight guys!
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The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in the country providing specialised services to families affected by this terminal condition. The Association cannot slow the progression of MND or change the outcome but we can alleviate the feelings of isolation and frustration. We offer consistent support to approximately 450 families across Ireland who otherwise would have nowhere else to turn. Everybody with MND has different needs at different stag
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