Where are you now, Sarah?

In 2007, Sarah Ezekial was interviewed for Healthtalkonline’s section on Motor Neurone Disease. Today she tells us what she’s been up to since then.

The last 7 years of my life have been really exciting and not what I expected at all. I have to say that I feel grateful to still be alive, because most people who get MND aren’t so fortunate.

After I was interviewed, I found the confidence to start giving presentations to health professionals. This is something that I still do and I feel that it’s very important.

In 2008, the MND Association asked me to appear in their first broadcast advert, Sarah’s Story. It was shown in cinemas but banned on TV, for being too shocking. I was disappointed and the film was criticised but I’m proud that I appeared in it.

My life really changed in 2010 when I started using a Tobii eyegaze computer. After a couple of years using eyegaze I discovered that I could paint with art software. I’d studied art and history of art and had always loved painting and drawing. When I lost the use of my hands through MND I honestly believed that I would never create anything again. I was wrong and I’m now an artist and have exhibited all over the UK and even in Qatar. I love being able to create again and feel much more content.

In 2012, I started working as the Secretary of my local MND branch and also joined the Board of a charity called Movement for Hope. They are both voluntary positions and I really enjoy my work with them. I take minutes at meetings and arrange fundraising and awareness events as well as art exhibitions. My work keeps me very busy and I don’t have time to dwell on my illness.

My children are now teenagers and much more independent and understanding. They are lovely young people and I’m a very proud mother.

Health wise, I’m slightly weaker but still able to walk with assistance. I attend my hospice gym twice a week, where I cycle and do leg exercises. I don’t take the antidepressant, Mirtazapine, anymore because I’m no longer depressed. I do have problems with keeping my weight stable and was seriously underweight last year. I was offered a feeding tube (PEG) but didn’t want one, so I took Mirtazapine for a while to stimulate my appetite. I believe that good nutrition, exercise and quality sleep are very important for people with MND and I strive to achieve all.

My care situation improved when I started receiving direct payments a few years ago. I no longer use agencies, but employ privately and run a payroll. I find that I get better quality carers now but I still hate being an employer.

The relationship that I was in 7 years ago didn’t last, but we remain friends. In September 2012, I met a kind, considerate man and we have been together since then. I’ve become used to being disabled and just do the best I can. Generally, I’m pretty happy and really enjoy my life.

Check out Sarah’s Eyegaze art and watch Sarah’s interview with Healthtalkonline.