Ten years ago when I turned 43 I had no idea that what felt like reduced fitness and cramps when I exercised were signs that my motor neurones were dying and that in that prime of my life I would receive my MND diagnosis. The last week was shittier than most as I was knocked about by a sinus infection and also lost the residual thumb twitch I was using to control my NeuroNode/phone. For a few days I was rendered both headsore and exhausted and impotently incommunicado.
I’m very grateful that smart, intuitive,empathetic carers were on hand and my excellent GP Anna and pharmacist Andrew were quickly on the case. And that my dear, generous Densil and Kimi presented me prematurely with my phancy new phone which they and wondercarer Jack set up for me.
And on Sunday afternoon, Peter Ford, despite flu, spent hours on the phone guiding Densil and Jack to test (and find wanting) various possible NeuroNode electrode sites before settling on the muscle above my expressive eyebrows. So I was able to enjoy making it into this prime – hurrah! – with my beautiful family and some lovely carers.
Now we just have to come up with an alternative to my eyebrow raise of assent so I don’t accidentally order a pizza on my phone when a carer asks if I want a coffee.
Kirsten Harley 
Happy BIrthday, my friend. So good you’re back in business again. Must’ve been so hard losing your lifeline. You’re such a trooper overcoming your hurdles along with your family and supports, but I’m sure you’d rather smooth sailing. I received a package today from my Year 5 teacher at Galston Public School and with a couple of hundred photos he’d taken. He also made me up my own photo book. I am stoked and trying to hunt down the rest in the class. One of them is Kelvin Hall Florist at Pymble these days and I’ve only found wo others. I’ve had a wonderful afternoon and happily wandered way off course.
Love and best wishes,
Ro
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A fitting post for a prima donna! Lovely Kirsten, thanks for the update on the latest. You do have some prime specimens there, for sure! I meant to wish you a happy birthday, but in case I didn’t, belatedly, happy 53rd! You’re never far from my thoughts & prayers.
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Happy belated birthday, Kirsten. It’s wonderful to see how you and your team manage to meet and conquer every challenge. I often think of you when I’m too puffed to get up the next hill, or, as now, when I’m trying to put thoughts into words for an article. I do hope your furry feline carer is qualified and has suitable PPE! Keep up the good fight. Love and best wishes, Eileen
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