In April 2000, I was 34, happily married and a full-time mother. I was pregnant and really enjoying life.
But I'd noticed some weakness and muscle-wasting in my left arm and my speech was slurring, especially when I was tired. I mentioned it at an anti-natal appointment and was surprised when I was referred to a neurologist, and after some tests, diagnosed with Motor Neurone Disease (MND).
I didn't know what MND was, so I was absolutely terrified when I was given a prognosis of two to five years, because it's progressive and there's no cure. I'm lucky to have survived so long. A third of people die within one year of diagnosis and more than half within two years. MND affects the nerves that control movement, so your muscles no longer work. Now I'm unable to move much or speak but my breathing muscles haven't been affected, which contributes to my longevity.
After my son Eric was born I rapidly lost the use of my motor skills, so needed carers for myself and my small children. It was an awful time and I spiralled into terrible depression, mourning for the life I had lost and trying to keep my marriage together. We divorced within a few years and I was given full custody of the children as well as 24 hour care.
It took a long time to pick myself up and I'm grateful to the MND Association and the Marie Curie Hospice, Hampstead, who helped me to regain my confidence and access assistive technology, which ended my isolation. I now use eyegaze technology, which means an infrared camera tracks my eye movements. I can do everything on a computer that anyone can, I can communicate and create digital art.
MND means I'm unable to move much or speak
When I was back online, my first instinct was to raise awareness of MND because so little was known about it then. I wrote articles and used social media to spread the word. MND doesn't discriminate and people from all communities are affected. Around 5,000 people have MND in the UK and six people die from it every day. We are all desperate for treatments to improve quality of life and ultimately a cure. I figured that more awareness should lead to a cure, because people are more likely to donate if they understand the devastating impact of MND.
So I've featured in a few of the MND Association's awareness campaigns (one was banned on TV for being too shocking), I regularly speak to health professionals, MPs, celebrities and anyone who will listen.
In 2011, I started to get involved with the NW London Branch of the MND Association and became their Secretary in 2012. I'd spent most of my working life as a PA in media and looking back, I feel that I was just pushing paper around. Now that I actually help other people, I don't know why I wasted time when I was able. I didn't understand illness or disability at all and was frightened of it. When I started to become disabled, some of my friends disappeared. I was angry then, but now I know that some people just can't cope with it. I'm still the same person as before, albeit older and hopefully a little wiser.
I'm on the board of a charity called Movement for Hope, which uses art and science to raise awareness and funding for neurological conditions. I recently helped to organise our Neuro-Creativity exhibition featuring the work of artists with neurological conditions.
The MND Association's staff work across the three main mission areas; to improve care, fund research and also campaigning for greater understanding and awareness. But the backbone of the charity are volunteers who run nearly 90 regional branches and groups.
Volunteers are not easy to find. The NW London Branch is really struggling because we are short of volunteers and I know that other branches are in the same situation. People are busy with work, family and friends but volunteering doesn't have to take up too much time. I don't always feel well because I find it hard to sleep, I get infections easily and my eyes get sore using my computer. The great thing about voluntary work is that you can fit it in around other activities and I rarely feel pressured. I love organising events, meeting new people and it can be great fun.
I'm organising a kosher fundraiser in Hendon next spring and, although it's quite nerve wracking, I know that I'll feel huge satisfaction on the night. I'm still looking for a caterer, auction prizes and sponsorship, so that more profit will go to the MND Association. I'd love to hear from anyone who could help.
Recently I received the Third Sector Volunteer of the Year 2016 award, which was a real honour. The fact is that I love the work that I do now and it's more rewarding than anything I've ever done.
To get involved as a volunteer where you live then please contact the MND Association volunteering team on 0345 6044 150 or email volunteering@mndassociation.org. www.sarahezekiel.com, @sarahezekiel
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