Everything was pretty straightforward for me until the age of 34. I was happily married with a beautiful little girl and pregnant with my much longed for second child. I was healthy, fit and enjoying my pregnancy. I couldn't have asked for more.
In February 2000, I noticed some weakness in my left arm and my speech was slurring. By April 2000 I had a definite diagnosis of motor neurone disease. It happened that quickly and I was absolutely terrified. My world was shattered. My marriage collapsed as I became progressively disabled. I couldn't physically care for my children or myself anymore, and I spiralled into deep depression. I'm now a single, disabled parent who is totally dependant on carers for everything. I never expected my life to change so tragically and it took me years to see anything positive about my situation.
BUT, I pulled myself up from rock bottom and if I could do it then I believe that anyone can. The first step was to start attending my local Marie Curie hospice in April 2001. I receive amazing care and really love going there.
I started writing my story next, using a program called E Z Keys with a chin switch. I'm now using the Tobii PC Eye (See our featured Innovation for more information). I've had articles published, given presentations to health professionals, made two films, participated in several photo shoots and had my portrait painted. I'm the London Jewish News Community Hero 2010, and I feature in MNDA's advert 'Sarah's Story'. I'm also the Secretary of the NW London branch of the MNDA.
Approximately 5,000 people have this devastating illness in the UK and 5 people die from it every day. My aim is to continue raising awareness of MND until a cure is found.
How has Motor Neuron Disease changed your life and affected your independence?
I don't go out alone because I can't speak or use my arms. I can still walk at home with someone holding my arm. I've been attending the Marie Curie Hospice in Hampstead for 11 years, using their gym to keep my legs strong. The hospice support has been incredible!
How did you find out about E Z Keys and the Tobii Eye-Gaze and can you explain how this technology works?
In 2005 my MND Association Visitor introduced me to Hector Minto who told me about EZ Keys. I was up and running within a few months. Hector also told me about Tobii EyeGaze technology and I knew that I had to have it. The technology works by tracking eye movements via an infrared bar, so I use my eyes and art software to draw and paint.
Has this technology enhanced your independent living and improved your quality of life?
Yes, most definitely. The technology I used to use had a chin switch, which caused me terrible neck pain. It was also a lot slower than the Tobii PC Eye. The technology I’m using now allows me to talk, email and keep in touch with friends as well as paint. I’m also the secretary of my local MND Association branch so organise events and take minutes at committee meetings.
Have you always enjoyed painting, or is it a new found interest?
I started painting in February of this year. I studied art at school and went to art college for a short time. Hector Minto from Tobii told me that I could use my Tobii PC Eye to paint again. Artists will always create so I naturally wanted to.
What inspires you to paint?
I love nature, particularly flowers. I recently saw a flamenco show at Sadler’s Wells and want to capture the movement of the dancers. I’m inspired by everything I see!
What inspired you to set up your website EyeGaze Artists?
There is currently no government funding for EyeGaze technology, despite it being such a helpful piece of equipment for people with motor neurone disease. Myself and Hector Minto, from Tobii Technology, want to help others like me and the cost of the technology is £3,400 for one, so many people can’t afford it. I donated my first Tobii PC Eye to someone with MND recently. Tobii Technology are kindly matching my donation and looking for another potential EyeGaze artist. This is open to anyone with a disability anywhere in the world. People can apply using the contact form on the EyeGaze Arts website by clicking here.
In what other ways do you feel assistive technology and the design of bespoke products could enhance independent living and the quality of life for people with disabilities?
Basically, I believe that assistive technology can allow people with disabilities to do anything that they want to do. I can do everything with my Tobii PC Eye that able bodied people do, so everything is possible. I’m always busy and don’t feel isolated anymore. I can operate my TV, curtains and front door using environmental controls through my PC Eye so have regained some independence.
Do you have any new EyeGaze Art projects in the pipeline?
I’m always working on something new and should be exhibiting in Qatar in January 2013. I also hope to have an exhibition at my hospice to fundraise for them. I’m currently experimenting with fabric printing and should have some silk neck scarves on http://www.eyegazeartists.com/ soon.