Next gen MND awareness

My gorgeous niece Susy is in the high school leadership team that decided to organise an MND fundraiser. In lieu of me speaking – because, y’know, the whole no-larynx-bed-103 situation – Kimi and I wrote this for Susy and her to read in assembly. To say I’m proud of these two doesn’t come close!

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We were going to ask Kirsten Harley, my auntie and Kimi’s mum, to come and talk to everyone about motor neurone disease. But in November she had her voice box removed as part of life-saving surgery to connect her to a ventilator, and she is still in hospital.

So she and my cousin Kimi have written this and weI will play some video from 2 years ago.

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Everyone, put your hands in your lap. While this is being read, imagine that even if you try your hardest, you can’t move your arms.

Now, imagine you have an itchy nose, or a hair tickling your cheek.

Now, imagine that you also can’t speak.

This is some of what it is like to have motor neurone disease.

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Motor neurones are the cells in our brains and spinal columns that carry messages to the muscles that enable us to move, speak, swallow and breathe. In motor neurone disease, some combination of environmental and genetic factors causes those cells to start dying. At first, one part of the body starts to weaken: my Auntie/Mum had cramps in her legs and started falling over. Then, it spreads, piece by piece, until the person can’t move, speak, swallow or breathe. It can be very quick or more gradual. Kirsten is lucky to have survived 6 years since diagnosis; many people die within 2 years; most die within 5 years.

More than two Australians per day are diagnosed with MND. And more than two Australians per day die with MND.

There is a lot still unknown about what causes MND, and no treatments – yet – that significantly slow its relentless progress.

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There are lots of things my Auntie/Mum can’t do any more.

She used to do ocean swimming and running. Now she can’t even stand.

She used to love her work teaching at university, but she had to retire when she was 45.

She used to grab a coffee on her way to the station. Now she has to be fed mushy food that is easy to swallow.

She used to hug, and travel, and dress herself, and sing out of tune, and adjust her glasses, and lie on the grass, and catch buses, and cook. She can’t do any of those things. She can’t move or speak or breathe by herself.

But:

She has amazing technology that means she can use minuscule thumb twitches to control her phone, to blog and write and text and play and even speak with a disturbing synthetic American voice called Ryan.

She still has deep friendships and support from carers and feels surrounded by love.

She still has a sense of humour.

She still loves being a mum and auntie.

And we all feel gratitude and hope when we witness funds being raised for research, that it will lead to a future without MND. Thank you!

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Now you can have your arms back. Use them for good!

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This is a short video MND Australia made two years ago, when Kirsten could breathe and speak and Kimi was a lot younger.

https://youtu.be/wZrZkiV5H6w

7 thoughts on “Next gen MND awareness

  1. Hi Kirsten, Susy & Kimi,
    Firstly, a huge well done Susy and Kimi for getting up in front of your school and speaking at all. Public speaking is something I’ve always loved, but for so many people that is their greatest fear. That becomes interesting when you compare it to be being diagnosed with something like MND and all that follows that diagnosis. Public speaking is not so bad after all!
    Secondly, I really liked the tone of this and how there wasn’t that poor victim framework which is common in the disability and chronic health arena. There is strength, positivity and gratitude while acknowledging and dealing with a horrendous disease.
    I live with an auto-immune disease which attacks my muscles and prior to diagnosis was devastating affecting just about every part of my body and had a lot in common with MND. There was one significant different. While my thing had no cure which seemed pretty devastating at the time, it did have treatment. The treatment hasn’t always been effective but 10 years later, I’m doing okay. This is naturally what I would like to see for MND while we still work towards a cure.
    As an extended part of the MND community, I have been surprised just how common it is. That has surprised and I guess shocked me. It’s not so easy to be sure it’s not going to happen to someone you love and care about, or even yourself.
    I’ve ended up on my soapbox. I blame watching QnA last night. Or was it the night before?
    Love & best wishes,
    Rowena

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  2. Reblogged this on Beyond the Flow and commented:
    Today, I’d like to introduce you to my much loved school friend, Kirsten, who was diagnosed with Motor Neuron Disease (MND).
    Having known Kirsten for much of my life, it’s hard to find the words to do her justice. So, I will hand over to her and her most recent post about the efforts of her daughter and niece to educate and fundraise at school to support MND.
    On a personal note, I live with a chronic autoimmune disease which attacks my muscles and lungs. Prior to treatment, I was severely ill and spent around nine weeks in hospital on diagnosis. However, there was treatment, even if there was no cure. The importance of treatment is something we should never take for granted.
    Now, I’ll let Kirsten speak for herself…

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  3. Hi Kirsten,

    I am just one of the multitude of bloggers who benefit from whoever put a keyboard in Rowena’s hands and turned her loose. I have another dear friend with her own autoimmune challenges and, for her leading anything like a normal life is a daily challenge as she has many people in her life who don’t understand her restrictions and often make things worse without intending to do so.

    So – thank you for helping us understand. It frustrates me to not have any cure or even treatment for such things because, well, I’m told that this is a guy-thing. We want to fix stuff and lacking the ability to do that, we aren’t sure what to do with ourselves. We certainly can’t cry you know.

    These situations often reduce us to sitting there wishing, even hoping against hope that someone asks us to do something that somehow would help or comfort our loved one trapped with these diseases.

    Some of are reduced to prayer, which I hate myself for even saying it like that. Prayer should be among the first things I do when presented with such needs, but – see my previous point about wanting to fix things. Sometimes prayer feels too passive, too dismissive of the situation – which I don’t believe, but too often catch myself doing anyway.

    In case it would give you some joy, Rowena would tell you I write stories and share with the hope of entertaining my readers with humorous retellings of my most fun memories of growing up. They’re all short (2000 words or less) but I seen some success with folks enjoying them enough to come back for more. I hear from some that they like to read them out loud so families or friends can laugh together.

    If I could be in the room with you when you weren’t busy with other stuff, I’d be tempted to try give you some joy by laughing at my misadventures growing up.

    If you did try and enjoy some, I would love to hear that I was both able to pray and doing something tangible to bring a few smiles into your day. You can explore the full collection at:
    https://garyawilsonstories.wordpress.com/

    Until your miracle arrives, blessings.
    Gary

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