Here is my talk and some photos from Rewired:
Hello everyone, it’s great to see you and to be here!
I’m pleased to finally have the technology to speak to you, after a long wait for funding.
You’ve heard the bad stuff about motor neurone disease so I’m not going to talk about that.
I will say that I have survived for 14 years, the official prognosis being 2 to 5 years, so I feel very fortunate.
People often ask me how I cope and lead such an active and happy life.
I only have a few minutes so I’ll try and fit everything in!
To start with, having good assistive technology is essential.
If you can’t speak or move, being able to communicate prevents feelings of isolation and helplessness.
I use Tobii eyegaze technology which has also enabled me to create again, and you can see some of my work on the screen.
Creative expression is so fulfilling and everyone should have that capability now that the technology is available.
Exercise, good nutrition and quality sleep is not only a must have for people with neurological conditions, but for everyone.
I look back and wish that I had been kinder to my body instead of partying hard.
Immersing myself in work that I’m passionate about stops me from dwelling on my illness and keeps me in the moment.
I particularly love my work with Movement for Hope because this charity has such energy.
We are not only raising awareness of neurological conditions in the UK, but globally.
I’ve always believed that awareness leads to treatments and cures.
Someone with Parkinson’s recently said that compared to my illness, her’s is a walk in the park.
Not so, I protested, every condition is equal and relative.
It’s vital to see the bigger picture and that is what Movement for Hope does.
Thanks very much for listening and for your support!