What is the point of the ice bucket challenge?

When I see the ice bucket challenge videos on line I sigh. For when I read #icebucket, I read MND. I read Dad. I read dying slowly. I read loss.  This is my reality. This is what the Ice bucket challenge means to me.

It was almost thirty years ago when my Dad first noticed his legs and arms becoming weak. At nearly fifty, and a fit man he was puzzled. It was some time later before we noticed my Dad stumbling, slurring his words and having difficulty with everyday tasks. Tests were carried out and eventually we were told he had Motor Neurone Disease. A relatively unknown disease at the time.

There was no cure and no treatment. Thirty years later nothing has changed. There is still no cure and no treatment. Is there any other disease in the world we can say that about?small__14927191426

So every day as I watch those videos I am glad. Maybe at last some money will be put into research, and there will be in our future some hope offered to those who are told they have this awful disease.

However mixed with this delight that MND is at last being spoken about, my thoughts quickly turn to memories of Dad. Take this morning for example. I was online briefly waiting to bring my daughter to gym, when I saw a number of ice bucket challenge videos posted. Moments later I was in the car with my daughter  listening to her and her friends as they chatted together.

It was a beautiful bright sunny morning. As it was early the roads were almost empty. The ice bucket challenge had cranked up the old memory reel in my head, and as I drove I continued to watch it in my minds eye. Today’s viewing was of  a Sunday morning drive, almost thirty years ago. I was just learning to drive and accompanying me at the wheel was my Dad. I was a competitive swimmer at the time and rose each morning at 4.50am. Except on a Sunday, that was my day off.  As early mornings meant nothing to me, we had decided that each Sunday my Dad and I would get up early, when Dublin traffic was almost non existent, and go for a practice drive for a couple of hours.

As I drove my daughter this morning I smiled inwardly remembering those very precious hours I spent with my Dad. In a family of five children it was never easy to have time alone with a parent, especially a working parent. Each Sunday we would head to the relatively newly built dual carriageway, which felt like an open road. There was very little need for instruction there, allowing us both to talk. And how we talked. Sometimes we spoke of serious topics, or one of my favourites, his past. We also spoke of my future, my hopes and dreams. But despite these many hours of chat, my most vivid memories of those days are of the many times we laughed together.

Those Sunday morning drives were enormously enjoyable. Never for a moment did I think that in years to come I would remember them for so much more than learning to drive. As we headed off each Sunday, neither of us could ever have imagined what lay in store. We didn’t know that for my Dad the clock was ticking. Motor Neurone Disease was waiting to rob us of his future. Slowly over time my young, fit. patient, active, loving Dad would find himself in a wheelchair, unable to feed himself, and in time unable to swallow. Yet looking back we could have coped with those losses, regardless of how hard they were, but the cruelest of all was to come. In photo credit: <a href="https://www.flickr.com/photos/werkman/2046135197/">Peter Werkman (www.peterwerkman.nl)</a> via <a href="http://photopin.com">photopin</a> <a href="http://creativecommons.org/licenses/by/2.0/">cc</a>time my Dad lost his ability to speak. Long before he died we would no longer hear his wit at the table, or enjoy his mellow Co Donegal accent spoken in his quiet tone. He was silenced.

Regardless of my Dad’s condition we continued to love spending time with him. Engaging in one way conversations, where we tried to read his mind by looking into his eyes. Sadly time eventually ran out for us, and Motor Neurone Disease stole another life.  A rare and wonderful man, who was and continues to be my Dad.

So the next time you see one of those ice bucket challenges in your feed, or perhaps in time you become irritated by them, remember the reality that is MND/ALS. Remember even after all these years, there is no treatment, no cure, and perhaps remember my Dad and the many more wonderful lives it has taken.

photo credit: Peter Werkman (www.peterwerkman.nl) via photopin cc
photo credit: slgckgc via photopin cc

36 thoughts on “What is the point of the ice bucket challenge?

  1. You write so movingly about your Dad, Tric. He’ll no doubt cross my own thoughts along with the next mention of the bucket challenge.

    1. Thanks for reading Irene. It is dreadful, and the fact they can’t offer any treatment after all these years continues to shock me.

  2. Beautiful post, Tric. Such an awful disease. I had a friend once who lost her father in the same way. It’s beyond tragic that there has been no progress in all that time and I’m glad there is being awareness raised now. At last.

    1. Thanks Sadhbh, it still saddens me hugely when I remember the manner of his death, as well as his dying. However maybe this is a new beginning and in time something can be offered to those who are diagnosed. My youngest did the challenge today mind you it was for the fun of it rather than doing it for a cause.

  3. I love the Ice Bucket Challenge: it gave all of us a chance to do good for others. It brought public attention to a terrible, terrible disease. It reminded all of us to cherish every day.
    I’m so happy that you have those wonderful memories of your Dad at his best, healthiest, happiest. May those memories sustain you!

    1. Thanks they do. Our time together was short but luckily I have many happy memories as well as those of the awful times.
      I agree the challenge is great. A fun thing for people to do for a good cause.

  4. I remember your dad Tric, and I never even met him. And I remember my friend’s father who lives with it now, he’s been diagnosed 1.5 years and they have started the talk about hospice. And I think of the people I’ve met through work who have passed from his horribleness. I’m glad it is raising attention. And I’m so sorry for anyone who has had to face it in their lives.

    1. Thanks Colleen. Thinking of your friends Dad too. It is a pox disease but maybe in time something can be done.
      I haven’t forgotten you did the challenge. x

  5. yes, and all of this is in honor of him, and those who suffer presently and into the future, so that no one else will have to suffer or feel the loss as you did.

  6. The challenge has been most effective in bringing this horrible disease to the global eye. It is a sad and slow death and not easy to watch like you and your family have had to do. My heart goes out to all who have had to suffer with the disease and by watching a loved one succumb to it. Like you, I have little hope that a cure will be on the horizon anytime soon.

    1. It is an awful disease, but I firmly believe that due to the increase in awareness brought about by this campaign as well as the money raised, there is now a chance that something will be done to find a cure or treatment.
      It has also helped those of us affected by it to feel less alone.

  7. Tric, they interviewed a spokesperson from the MND foundation here in Australia the other night who was saying that the ice bucket challenge here has raised more money in a month than they are able to raise in two years. That is money that can be used to find a cure.
    I enjoyed your reminisces of your father Tric. I would hope that those wonderful memories keep him close to you every day of your life. Blessings to you.

    1. I have many lovely memories of Dad and always feel him close even after all these years.
      I just read a similar message from MND Ireland who are delighted with the boost to funds and for now the challenge is still popular.
      It is amazing to think that they have made no progress at all with this disease. I can’t help but think that it was because it was not a popular disease so this should change all that.

  8. Written so beautifully! A much needed post as I fear many still do not know what ALS is, so thankful to bring awareness to such a debilitating disease!

    1. Thanks for reading April. The more who know about it the more chance we have of making progress in finding a cure or at least treatment.

  9. The smallest moments can bring forth our biggest memories. So sorry to hear another family had to battle such a difficult disease. Awareness is key and I am glad ALS is getting some attention now. Thanks for sharing your story ♥️

    1. Thank you for reading. It is a dreadful disease, and has had a devastating effect on our family, as it has many others. This challenge makes us feel less alone.

  10. Tric, your point is very well made and I think there can be mixed emotions for many who have lost or losing loved ones to horrible diseases which have funds raised in a fun way for research etc. It’s the degree of contrast and,as you rightly point out, the lack of awareness among some involved in the fun about the meaning of these diseases for individuals and their families.
    Overall, it sounds like your father would be all in favour of raising funds and of having fun. He, and others I’ve known with MND will be very much on my mind as this ice bucket thing goes on and I’ll do it for them, if asked!!! Jx

    1. As they say, “there’s no such thing as bad publicity”. I am delighted so many are doing the challenge. I am sure plenty are not contributing to MND, but we couldn’t buy this sort of publicity so I don’t mind.
      My Dad was all for fun so I know he’d have backed this one all the way.
      Bet you’re hiding in case you’re asked. I know I have been!

  11. I’m so sorry for the loss of your dad to MND/ALS. It has taken so many people from our lives prematurely, and, as you so poignantly relate, the losses begin during the course of the illness itself. I also hope that the increased funding will finally bring effective treatment to patients and hope to their families.

    1. Here’s hoping. All these things run their course so hopefully many donations come in before people tire of it and move on.
      The toll on the victim of this disease is enormous. Thank you for reading.

  12. I lost my grandmother a little over 30 years ago to the same disease. I enjoyed reading of your fond memories. It is a very nice tribute to your dad.

    1. You lost your grandmother not too long before my dad April. It is so long ago but someone we’ve lost never seems too far away. Having read your post tonight I believe that more than ever. Thanks for commenting.

  13. I hear lots of people irritated by the challenge. I think they have done a terrific job of bringing awareness to ALS. My children have asked and learned about it. My kids have also have chosen to donate their own money to a cause. I think that is pretty amazing as well. With all of the craziness going on in the world, I think this is a wonderful change.

  14. Thanks for sharing your wonderful memories Tric.I was wondering how you felt about the challenge.IMHO,anything that raises awareness and that amount of money for a charity can’t be a bad thing.

    1. Yes Aedin I’m delighted with this fad. Like all fads it will end but by then so many will know what MND/ALS is, and a lot of money will have been raised.
      All good.

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