Sunday, 27 November 2011

Mitzvah Day 2011

Mitzvah Day was on Sunday 20 November 2011. On Mitzvah Day, around the world, thousands of people take part in hands-on projects, without fundraising, to support charities and to build stronger communities. The mission of Mitzvah Day is to reduce hardship and poverty, to help our environment and to bring a little hands-on joy. It is a way for everyone to make their mark regardless of affiliation, wealth, age, sex or nationality. Here are some photos, by Harry Borden, of my friends and family, who planted daffodils in the garden of the Marie Curie Hospice, Hampstead. I was supervising!

Karen my carer and Harry.

My wonderful team of friends & family!

Cake for hospice, kindly donated by Shelley at Grodzinski.

Touring the hospice which has been beautifully refurbished.


And work begins! 

Eric & friends! 

 Dr Adrian Tookman - gotta love a hugging doctor! 

My other lovely doctor, Faye Gishen.

With Hospice CEO, Thomas Hughes-Hallett.

Meeting the Chief Rabbi, Lord Sacks.

Back home for lunch.
It was a fantastic day! My thanks to everyone who helped me to give something back to my hospice, which is so special and important to me.

March 13 2012 - daffodils in bloom 

Saturday, 26 November 2011

Social Media & Me

I started my professional life after dropping out of art college at 19. After a 3 month stint in a local supermarket I knew that stacking shelves would never be taxing enough for me. My parents offered to pay for a secretarial course. I didn't want to be a secretary but knew that I had to earn a living somehow.

I landed my first job at a publishing company, which produced magazines and books for children. I was PA to the Editorial Director and spent 3 very enjoyable years there in colourful Camden Town.

When I started in 1986, I was using an electronic memory typewriter. Top of the range kit at that time! Then the Amstrad word processor came out and I felt very accomplished using that. I had no idea of the possibilities that technology would bring and how it would become my lifeline in the future.

My first inkling came a decade later in 1995. I was PA to Dr Michael Chamberlain,who was director of new media activities at United News & Media. He had an Apple Mac and showed me the internet and how to use email. I remember feeling excited about the internet's potential even though nothing much was going on at that time. 

I was a full time mum when I was diagnosed with motor neurone disease (MND) in April 2000. You can read my technology journey here. I want to expand on my use of social media in this blog because it has undoubtedly helped me to manage my illness. It has also enabled me to raise awareness of MND, an orphan disease with no treatment or cure.

After diagnosis, when I had accessible computer access, I scoured the net, desperate to connect with other sufferers. I became a member of Patients Like Me and immediately felt supported. It was a great relief to know that I was not alone with this disease and I felt comforted. I learned about MND management and equipment from other sufferers. It feels good to be an empowered patient! I've even taught my doctor a few things. Now I spend some of my time sharing my experiences on various MND forums. As a long term survivor of MND (the official prognosis is 3-5 years) I want to help others. I've recently discovered and would like to collaborate with them to see MND featured on their site.

I love that I can share information through my website. I'm also an avid tweeter and facebook user. When I appeared in Sarah's Story I used both platforms to show the ad. I won the Mashable 2009 web award for Sarah's Story, in the category of Social Media Ad Campaign. The fact that I won through the votes of people on both social networks really highlighted the power of social media to me.

There are great MND communities on both twitter and facebook. We share research news which gives hope and keeps us upbeat and positive. Without social media, everyone would sit in isolation and feel hopeless. I actually find tweeting very cathartic and can voice frustrations as well as share good moments. I've made connections with wonderful people all over the world. Some have helped me to fundraise or raise the profile of MND. Life with a terminal illness is a veritable rollercoaster but social media has made everything much easier and more enjoyable for me.

Friday, 30 September 2011

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

Sunday, 27 February 2011

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.