Chapter 1: Our Story

Mar 24, 2013 10:50 AM

My name is Claire Ross. I’ve been with my husband Michael, 29, for over seven years. Michael has Motor Neurone Disease. We’ve been through a lot together since the very beginning… through the early signs, tests, trial treatments, diagnosis and procedures. I’ve started this blog to share our past experiences over the years, as well as new ones as they unfold.

We’ve always been pretty private people. The thought of putting this all out there for anyone to see is insanely out of character for me. I’m not sure if I expect anyone to even read this. Even if they did, I probably wouldn’t know if it had any effect on things… Naturally I would think, who would want to listen to my sob story, what makes it any different from all the other hardships people face? But I suppose at the end of the day, if just one person understands the impact that Motor Neurone Disease can have on people’s lives, or even finds out what it is… then it’s worth something.

I think there’s an air of mystery around MND. It’s not as widely talked about as other deadly diseases, yet just as potent. The average person lives only two years from diagnosis. That’s not a lot of time to get your head wrapped around having the illness in the first place, let alone watching it take over your body until you die. To this day, there is no cure. I know I’m only one person, but I hope by sharing my story, people can gain deeper insight into what really goes on behind closed doors…

Continue reading our journey here.

View latest posts here.

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12 thoughts on “Chapter 1: Our Story

  1. What a shocking disease this is. I first heard of Michael’s dx through Carol N, his mum’s friend and I actually worked with Michael on his reading when he was around 6-7 yrs old! I was Mrs Russell and we met in the library, he was a lovely boy, quiet and gentle and always polite.

    My stepdaughter was dx with a very rare and terminal cancer 16mos ago and we started a blog then for several reasons. To have a record of appointments and useful links that she could access where-ever she was, to show happier moments and fun times and where she could express her fears and frustrations and also that our words and experiences may help other sufferers. She is only 29yrs old and is pregnant with her 3rd child after being told the chemo and radiation would render her infertile. We are flying to Ottawa this year to spend some time with her once her baby is born. You can find her blog here, it may help you to know that you’re not alone grappling illness. http://pearlzjourney.blogspot.com.au/

    So, I wish you and Michael especially some comfort, happy days and laughter and I shall follow your story.
    Love from Sue
    xx

    • Aw cute, little Michael… Are you sure he wasn’t cheeky too?
      Thankyou for sharing, I appreciate your comments. I will be sure to have a look at the blog. I wish you and your family all the best.

  2. Hi Claire

    What a lovely, honest, well told story, despite the sinister MND lurking in the background – found out more about you & Michael in a few hours of reading than all the time we have known each other

    Uncle Terry

  3. Hi Terry, Thanks for your comments. I appreciate the feedback. I guess this is our way of sharing our life with other people, when we can’t always get out and see them.

  4. Um, it’s me, trying again to be accepted hehe. You are both amazing and Mike, you look v sexy with your new haircut. I thought I wouldn’t be a fan as I loved the long hair but count me in!

  5. Hi Claire and Mike,
    I don’t often log onto facebook and have just read your blog. I love you commitment to each other – such a unlucky card to draw we know. I love the strength in both of you. Thanks for sharing. Your both wonderful!
    Love Uncle Colin

  6. Its a real blessing to be able to call n you my friend Clair, you are such a beautiful and strong woman, I take ispiration in your courage. I think of you at the most random times. Looking forward to reading about your new journeys. Have a wonderful Christmas this year!

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