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.