Diagnosed beyond repair

On the 23rd August 2012 my life changed forever: I was diagnosed with Motor Neurone Disease [MND/ALS]. There it was, a death sentence; my death sentence. MND took ownership of me that day. It wasn’t only me that was dealt a blow that fateful day. My husband and son lost the promise of a happy future, my parents and sisters lost a cornerstone of the past. I will never forget that drive home from the hospital, the eerie presence of bad news hung over us. My husband turned to me and asked, “do you want to be with your family?”. I nodded yes. We drove up to my parents’ house. My mother was carrying clothes out to the line. She didn’t look over to smile and wave like she usually would. If we had beeped and waved over, that was a signal that everything was ok, but we didn’t. She kept her head down, avoiding the inevitable bad news, clinging on to normality for just a moment more. We met my dad in the kitchen, he had a look on his face that I didn’t recognize, he was studying my demeanour for an indication of the verdict. I remember sobbing in his arms – my dad could fix anything but we all knew I was diagnosed beyond repair.

To understand the medical effects of MND on the body, that’s easily found online. But I want you to understand more than that, I want to tell you how it affects me, without the medical jargon. MND is relentless – once it arrives it is with you forever and no matter how good a fight you put up MND always wins. For me, its arrival was subtle but within months it was in plain sight. Chipping away, slow and steady, the MND monster unleashed inside me, free to destroy everything.

It started its initial destruction in my legs and when they could no longer hold me up it moved onto my hands and arms. I was able to study the muscle wasting closer this round, watching my hands slowly lose shape. Not satisfied with destroying my limbs, the monster, as subtle and sneaky as ever, went for the big one, my speech, my voice; the essence of me.

Motor Neurone Disease is known as the 1,000 day disease because most patients die within this timeframe. I’m approximately 1,300 days living with it and although I am effectively paralysed from the shoulders down, I still feel I’ve got some fight left in me yet!

Sharon x

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Author: Sharon Friel

In 2012 at the age of 38, I was diagnosed with Motor Neurone Disease/ALS. A death sentence with an expected term of 1,000 days; I've since bypassed my expiry date. Although paralyzed from the shoulders down and voiceless, I am still here, still living my life. Wife, mother, daughter and sister; family is what makes this all bearable. Before MND hijacked my life, I was CEO/Manager of a Credit Union and loved exploring the outdoors - cycling, walking and kayaking.

11 thoughts on “Diagnosed beyond repair”

  1. Hi Sharon. I’ll follow your blog with pleasure. You’ve been on my mind since I heard of your mighty blow anyway. Not saying concern from a distance is of any use but hey. I’m following, listening, always thought you were great anyway. So warm, funny, friendly and yet rather together!
    Love Dawn
    Ps like the blog construction.

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  2. Thank you for writing this, I think it’s amazing. I hope you write more soon. I’m very interested in the things you mentioned that you’ve learnt. It also makes me appreciate technology more….

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  3. Hi sharon , I think it takes a brave person to handle this disease I cared for my uncle who was diagnosed with it and sadly passed away five months later , I’ve learned a lot about this disease and how it affects ppl in different ways and to write about it says a lot about a person , it’s clear to see you are gonna fight this to the end and I commend you for that , mnd is such a hard illness and hopefully one day they will find a cure , wish you the best I will def follow your blog .

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  4. Thank you for sharing your story. It will be inspirational to others. You did not once sound sorry for yourself, only for your husband, son and parents. I wish you well, I hope you continue to live with this, and well done on getting this far. Today we held a Tea Day for MND. We raised almost €1,000. A small gesture of support to you and others who have been diagnosed and are living with this fearful and feared disease. Theresa, St Pats College

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  5. I was moved to tears when I read this today and I hope that your still fighting hard to stay one step ahead of this awful disease. I care for my husband who has Progressive MS and in a way these illnesses are similar he can longer do anything physically but thank goodness he can still talk. Good luck for the future

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  6. O my God
    Sharon you are a legend.
    Honestly
    No pity
    No mirbid maudlin
    Just the facts
    The truth
    But what you have not mentioned is you always have been,
    and even though you are paralysed from the neck down, you are still helping others.
    Inspiring
    Sharing
    Teaching
    Sending bucket loads of love
    Darlin
    Take care
    Love and constant prayers
    Louie

    Liked by 1 person

  7. I remember when we met up for Johnnies 80th I think it was, we were in the garden and you had crutches. It seems like such a long time ago, Sharon. I know we’ve all seen how brave and feisty you are, how you keep joking and smiling, busy and creative. In the background though, crikey, your family are mighty. It’s a ridiculous journey you are all on, but always, in every life lived, isn’t it all about love. And you and your family ARE all about the love. Love Aideen xx

    Sent from my iPhone

    >

    Liked by 1 person

  8. Sharon

    You have a fight in you beyond anything I have ever witnessed! I read your stories as they come in. Beyond Unfair as it is, just to let you know how much I appreciate having the privilege to read your stories that you are so willing to share unconditionally to help people (me) understand and not be ignorant to your disability. It teaches me and inspires me.

    Xxxx

    Sent from my iPhone

    >

    Liked by 1 person

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