Losing my voice to MND

In the early days of my diagnosis I hated going to the Motor Neurone Disease (MND/ALS) clinic and witnessing all the other patients with varying degrees of war wounds from their battle with this cruel disease. See, I was still in denial and somehow closing my eyes was my pathetic attempt to protect myself from my hopeless future. Unable to block my ears, I was forced to hear the frightening tones of a patient who was losing their voice to MND. Something about the pitch of their groaning muffled voice used to make me feel nauseous with fear. It was a voice you would never forget, an unpleasant sound, it felt uncomfortable in my ear. Without knowing, you could sense behind this ugly sound there was a serious problem.

My voice has been the hardest thing I’ve lost to MND. So much of your identity and personality is contained in your voice. It’s your means of engaging and immediately interacting with the world around you. I didn’t lose my voice overnight, it eroded over a year and a half. At the beginning I was slurring certain words, eventually all my words sounded drunk. Then the tone and pitch altered, the horrible groaning muffled tone made itself more prominent. The sound attracted curious ears, it was impossible to ignore. No matter how hard I tried to enunciate words, my mouth muscles just wouldn’t play along. Everybody tried really hard to understand my attempt at every word. Countless frustrating moments were experienced by us all – my tears were never far away as I struggled to come to terms with my latest MND crisis.

When I first got my Eye Gaze Computer I was excited and couldn’t wait to use it. By the second day, I hated it. It was just so hard to use. I ignored it for a few months until I eventually lost the power in my hand and could no longer use the communication app on my iPad. Until I had no means of communication except nodding my head I was forced to work with my nemesis.

The early days were tough, with lots of teething problems. You have to train your eyes to focus on the letters and turn off your peripheral vision. Sounds simple but it takes weeks of practice. Position and distance from screen, glare from sun and lights, medication, other people’s eyes and even wearing glasses all affect the Eye Gaze performance. [I eventually had to ditch my glasses, I’m short-sighted so can see the screen but everything beyond is a blur.] These obstacles are all equally annoying in their own right.

I like to prepare people in advance of what to expect with the Eye Gaze. It’s an unnatural and unsociable means of having a conversation:

* It’s slow, it takes me time to type out a response, I’m always a conversation behind.
* The eye trackers at the bottom of the screen that read my eye movements are extremely sensitive; if I look away they lose my eyes and can take up to 30 seconds to reconnect. In the mean time, I get frustrated, throw my head back and close my eyes, trying to re-establish connection. This happens numerous times a day.
* I have to concentrate on typing so I keep focused on the screen; consequently I don’t make as much eye contact and people presume I’m not listening. To make matters worse my neck muscles are weakening so I can’t even nod to acknowledge anymore.
* People stand beside me and read while I type, it’s a natural reaction but the eye trackers are so sensitive they pick up the other eyes and throw me off course, forcing me to reconnect again.

Those issues aside; once I sorted out the teething problems and everyone around me got used to the Eye Gaze, I began to love it. Now, I couldn’t imagine life without it. It’s an extraordinary piece of technology which gets many wows and looks of amazement. It has allowed my brain run free from my paralysed self. Without it I would be trapped inside my own body, unable to express myself, unable to talk to my little boy, my husband or my family and friends. I firmly believe I would be gone by now if it wasn’t for my Eye Gaze; it’s my portal to having a life.

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.

10 thoughts on “Losing my voice to MND”

  1. It’s such a powerful piece of equipment Sharon of such benefit to us all. Only problem is everyone else has to learn to respect it. Eyes off the screen and I am probably one of the worst offenders.

    Liked by 1 person

  2. Well done again Sharon . We are not worthy ! June relays conversations to me that you have every day without any reference at all to the eye gaze . That is the non girly information ( that I am trusted with) only of course ! Stay motivated please . Your participation in everything everyday is actually normal because of your determination and skills. I have never met you but I know the positive impact you continue to have . You have my highest regard. Keep going Girl C

    From: Wheelie me – Still me! Reply-To: Wheelie me – Still me! Date: Wednesday 8 February 2017 at 11:01 To: Christopher Foley Subject: [New post] Losing my voice to MND

    WordPress.com Sharon Friel posted: “In the early days of my diagnosis I hated going to the Motor Neurone Disease clinic and witnessing all the other patients with varying degrees of war wounds from their battle with this cruel disease. See, I was still in denial and somehow closing my eyes “

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    1. Sharon my aunt is Eileen Carroll and I have heard so much about you. I enjoyed afternoon tea served in auntie eileens with the cousins to help raise funds and awareness for you. My dad at 78 has been diagnosed with dementia and this week I have had to bring him to a nursing home. I feel sad all the time for him and me. After releasing your post and your challenges I now realise I have to embrace this journey and know that we all must live each day as best we can in whatever our situation is . You have helped me enormously and I thank you and I am grateful to you for this.xx keep staring at that screen and writing your posts ..

      Liked by 1 person

  3. I have always loved words, speech and language- their power to communicate the very soul of a person and none so powerful as your words Sharon , knowing now the absolute passion you must have within you to share your feelings and thoughts. Thank you so very much. Dolores xxx

    Liked by 1 person

  4. Sharon, when i read your posts i am filled with all sorts of emotion – sadness, loss but great admiration for a wonderful, brave and beautiful woman. I remember the days we sat together in accountancy and laughed at the teacher and talked about homework and life. Then meeting you years later at gymboree with our two beautiful boys. You were so excited to have your son. Keep up ur spirit and determination. I read your updates all the time and I am constantly thinking of you. Gillian

    Liked by 1 person

  5. Sharron
    You have given me an insight to MND . I have read about it from the beginning of your diagnosis. You are the strongest lady and bravest person I know. & I love ❤️ reading your amazing openness of how you & your family are all coping with MND. You have a great sense of humor & I laugh along with you & even when you went to Beyoncé last year & had Mom sit along side you in a wheelchair Strong stock in those genes. Luv you Sharron xxxx

    Liked by 1 person

  6. Hi Sharon.
    Many thanks for sharing with us. I love reading the pieces you write and I can only imagine how difficult it all is. But you have such a good spirit (like Margaret my Alto friend!).
    Love to you all.
    Emer

    Liked by 1 person

  7. Hi Sharon, you resonate very clearly and beautifuly in your written words. Having mastered a piece of very intricate equipment that allows us have insight into your world is an amazing achievement. What you write is precious and valuable to everyone who reads your blog. My deepest respect and love. I met your friend Neven McGuire who smiled a great big smile when I told him I you, me and your great sis Niamh go back a long way.

    Liked by 1 person

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