Tobii Study Day, 29 September 2011

Here is the talk that I gave at the Tobii Study Day - The Eye Control Learning Curve


Hello, my name is Sarah Ezekiel, and this is my assistive technology journey.

I was diagnosed with motor neurone disease in April 2000, at the age of 34. Within one year, I had completely lost the use of my hands, and couldn't operate my computer anymore. My local computer centre gave me an on-screen keyboard, with a switch that I had to strap to my knee. The switch kept slipping and I gave up out of frustration. I spent almost four years without computer access.

In 2005, my MND Association visitor introduced me to Hector Minto. He showed me a laptop with the program ezkeys, and a chin switch. I was using that equipment until February this year. I'd been happy with ezkeys, but started getting terrible neck pain, from my chin switch. Now I'm using the Tobii PC Eye and I love it!

I don't know how I would cope without computer access now. I use it to shop, pay bills, and do my banking, online. I communicate with my children's school, my social worker, and care agencies, via email. I also use facebook and twitter to raise awareness of MND, and keep in contact with friends and family. I've created my own website and blog, which enables me to express myself and for people to understand MND.

The internet has helped me to connect with people too. I've had several photo shoots, artists paint me, appeared in an advert, raised funds and campaigned for MND awareness. I've also had several articles published, in various newspapers and magazines. My life is far more interesting, because of these interactions.

I no longer feel isolated and depressed about having MND. I can contact other MND sufferers through forums, such as Patients Like Me or the MND Association forum. I can also email my GP, hospice doctor and nurse, if I need any medical help. I feel much more positive about my life, which is important when you have a terminal illness. I hope that other people gather inspiration from the way I live my life, despite being severely disabled. I know that would be impossible without my computer.

I was skeptical about eyegaze technology at first. I didn't believe that I would be able to do everything that I could do with a switch. I was pleasantly surprised. I can actually do more with eyegaze, like access my bank account and edit my website. I had to ask my carers, or children, to help me with those things before. Using my PC Eye was tiring initially, and I struggled to hit targets. Now I can write so quickly, which is much less tiring at the end of the day. I'm also very accurate, even though I wear glasses. 

In conclusion, the Tobii PC Eye has vastly improved my quality of life. I had to wait over one year to get funding for this equipment. I am campaigning to make accessible technology available to everyone. I'm even getting environmental controls soon. I never wanted them before, but everything feels easier with eyegaze.

Thanks very much for listening.

Talking with my eyes!

Hector and I during Q&A

Marie Curie Hospice, Hampstead

The 'miracle' kill or cure, by Amy Molloy. Sunday Times Magazine article, 27/02/11

by Tom Pilston

I was the victim of a stem cell swindle

Sarah Ezekiel , 45, who has motor neurone disease, travelled to a private clinic in America for stem cell therapy. Now, £15,000 lighter, with no improvement in her condition, she is warning others not to make the same mistake.


As the man in the white coat handed me a test tube and told me to hold it in my hands until the contents defrosted, then to inject it into my stomach, I willed my body to be responsive. I was terrified of leaving my two children, then aged six and three.

I was only 34 when I was diagnosed with motor neurone disease in 2000, while seven months pregnant with my second child. The symptoms appeared so suddenly — slurred speech, muscle wastage in my left arm — that I thought I’d had a stroke. However, tests confirmed MND and the next thing I knew, doctors were telling me I had two to five years to live. By this point, as well as a three-year-old daughter, I had a newborn.

My symptoms quickly worsened — within a few months I was unable to walk and I had to watch strangers care for my baby, which was heartbreaking. My marriage was disintegrating under the strain. I just wanted my life back.

Then my brother found me an article about a young MND sufferer in America who had an umbilical cord stem cell transplant and reported some improvement.

In hindsight I should have done more research, but my hands were too weak to use a computer by this stage, and when I asked my hospice doctor he simply wished me luck. It was such a new treatment that nobody seemed equipped to advise me.

On May 4, 2003, I arrived at the BioMark private clinic in Atlanta and handed over a cheque for £15,000. I felt incredibly excited — convinced I was going to make a full recovery — though doctors there warned it could take up to a year to work.

In the next few weeks I had a recurring dream that I was well again, cooking and spring-cleaning my house.
Seven months later I gave up hope.

Two years later the BioMark clinic was shut down by the American Food and Drugs Administration and fraud charges were filed against its directors for embezzling $1.2m from patients with incurable diseases, including multiple sclerosis and Parkinson’s disease.

Maybe I should have suspected, seeing as their slogan was ‘Medicine is a collection of uncertain prescriptions’.

Now I tell my story at MND forums in the hope that other sufferers will learn from my mistake. Ultimately I know desperate people, like me, will try anything. I just wish the unscrupulous people offering these treatments could be stopped. 

Nine Lives

I’ve met a girl, he said

That was three years ago

I died inside

I’ve met a lady, he said

That was yesterday

I died again

I’m scared, he said

Follow your heart, I said

Hoping it will lead him back to me

Seven lives left

Diary

I had my foot x-rayed this morning because it's been hurting me for a week. I thought it would go away but it feels worse today and is swollen. The x-ray didn't show anything, so I just have to wait. Coupled with neck pain, I feel quite fragile. I keep wondering how people live with pain? I think I'm about to become a single woman with a cat. The search is on for a kitten. I want a Devon Rex (see photo) but they are hard to find. I'll probably end up with a tabby! I'm looking forward to having an animal around again. Something new to observe is pretty exciting for me. I accepted an invitation to The Third Sector Excellence Awards. I'm going in my capacity of actress in Sarah's Story, because it's shortlisted for an award. Note to myself: buy a dress before a cat.

Diary

I've decided that it may be useful to keep a diary. I'm not sure who it will be useful to, perhaps only me? I might end up with thousands of readers, like Dr Mark Cato. I must contact him to ask how he did that. I woke up this morning really wanting to visit Highgate Cemetery . I'm reading 'Her Fearful Symmetry' by Audrey Niffenegger, which has made me curious about the cemetery. It's almost on my doorstep, yet I never knew much about it. I think it could be difficult to negotiate in a wheelchair though. I know I'd want to take photos too, which is impossible, due to my wimpy hands. I keep seeing stuff that I want to photograph recently. I know that I'll probably never see the cemetery and I think it would make me feel a bit ghoulish anyway. I went to Sainsburys supermarket instead. There's a pet shop near Sainsburys and I toyed with the idea of buying a kitten. I want a little companion to sit on my lap and make me feel that I'm the most important thing in it's life. Being realistic, it will more than likely hate my lap and I'll get irritated by cat hair everywhere. Things to do this week: sort out my neck pain and stop obsessing about my 'ex-bf' (although I never called him my boyfriend at the time). Over and out.

Trapped

They said that my body would stop working
I thought they were lying
I was just like everybody else
With a new life kicking in my belly
They had to be wrong

I was forced to believe
When I couldn’t turn a key
Or cut strawberries
I tried to hide the carpet burn on my face
It was happening

Walking stick, frame to wheelchair
Independent, strong, woman, to baby
Fear followed me like a new shadow
I screamed ‘help me’
But no one could

They said I wouldn’t see my kids grow up
I think I’ve broken the rules
Because it’s stopped and I’m trapped
But I can still express myself
Which is everything