GALLERY

I have new art software on my Tobii PCEye and have started to paint using my eyes. I've loved drawing and painting since I was young and studied art and history of art for 'A' Level. I started an art foundation course at 18 but didn't finish it. They were trying to push me into teaching which I didn't want and I was too young and immature. I carried on enjoying art and did several life drawing and sculpture courses at evening school. I always had a sketch book on me, it was just a normal part of my life.

Marriage and kids took over and then I was diagnosed with motor neurone disease at the age of 34. I'd always imagined that I would pick up my artistic pursuits later in life. When I lost the use of my hands I gave up my dream and started to write instead.

Little did I know that I would paint again using eyegaze technology. Of course, it's very different to using my hands and I'm still learning how to use the programme (Revelation Natural Art) and techniques. I absolutely love being able to create and express myself artistically again. I'm even looking at everything around me more intensely, which I haven't done for years. I feel as if life is suddenly more colourful and beautiful, waiting for me to capture it on my virtual canvas.

I'm going to post my work here and know that it will improve (I hope). Special thanks to Hector Minto at Tobii, who was the first person to help me to escape from my awful, locked in, MND existence.

All of my work is available from http://www.eyegazeartists.com/ I am donating all proceeds to help people with MND purchase Tobii eyegaze technology.

Made in Britain

My Life of Brian

Butterflies

Teardrops3

Teardrops2

Teardrops1

Seascape

Popred

Blues: Acrylic

Daffs/watercolour

Daffs sketch/oil pastel

Profile: March 2012

Phoenix: March 2012

Cloudbursting: March 2012

ACTRESS, GINA BELLMAN, SHARES HER EXPERIENCE OF MND (uncut)

Many of you will remember Gina for her roles in Dennis Potter’s ‘Blackeyes’, or as the hilarious Jane in the sitcom ‘Coupling’. Gina’s mother, Helen, has Motor Neurone Disease/ALS and Gina describes how the disease has impacted on the Bellman family.

Our experience was similar to many other families in that we waited a long time for an accurate diagnosis. At first, (six years ago) it was thought that my mother had probably suffered a stroke. She had started dragging her right foot and was coughing a lot and complaining of a numb lip. She was tested for all kinds of diseases and possibilities and I remember during this period, there being a sort of background chatter amongst doctors, friends and relations that everything would be okay so long as it wasn’t MND. Eighteen months after her first symptom my Mum was diagnosed with Primary Lateral Sclerosis. 

I realised straight away that we would need support to deal with this news. I got straight on the phone and called the MND Association. I spoke to a really supportive and sympathetic volunteer. She talked me through how the illness may develop and how we should prepare for the next stage. She asked me about my mother’s support group and then mailed out information packs for myself, my two brothers and my mum and dad.

By the time my mother was diagnosed, she had already started to struggle with controlling her emotions. Overall, this has been the hardest symptom for her to bear. I advised her to speak to her doctor straight away about taking anti-depressants. Obviously, I am not qualified to prescribe medication but in my mothers case it was extremely effective at helping her to cope with the excessive laughing and crying that can occur. With the support of medication my mother has been triumphant at controlling this aspect of the disease. Just recently she had to endure a close family member’s funeral and everyone was very worried about whether she would be able to stay composed. She was remarkable. The grandchildren used to laugh alongside her when she would have laughing outbursts, which would often prolong the episodes. Nowadays, we smile and reassure her but give her the privacy to compose herself gracefully.

I believe that her quality of life has recently improved because she has a new ipad with TBoxApps Predictable software http://www.tboxapps.com/. It's great for people who can still use their hands. The software has predictive text and files for common phrases and a predictive toolbar of commonly used words and names so it's quite quick to type. She’s finding it far more enjoyable to use than the Lightwriter. 

I would advise anyone with a newly diagnosed family member to get the MND information packs. They are brilliantly designed and should win all sorts of awards. There are individual self-contained sections on all the symptoms that you can refer to as and when needed and add to a ring binder as the disease progresses. They are simply written with bullet points and no technical medical jargon. When I received the packs, I highlighted the paragraphs that were relevant to us, it meant that we were all on the same page and could learn together moving forward. This disease is totally overwhelming but if you take it one symptom at a time it can lighten the load a bit. 

The MND/ALS Twitter community is extremely active. I recommend that people with MND and their carers, should get straight onto Twitter where they can keep up to date with research and fundraising but also make friends with people like us and a huge international community of brave, supportive, knowledgeable and loving people, some of whom have the struggle in common and some of whom are simply interested and interesting. I'm @Ginabellman if anyone wants to follow me.  

MND defines the word ‘courage’ for me. I can only speak for our own experience but my mother’s struggle and my father’s support has brought my family much closer together. My brothers and I are in awe of their strength, courage and dignity. The only encouragement I can give is that this disease can strip you of your independence, mobility and speech but it can’t take away your sense of humour.  We laugh a lot, especially at things that might have seemed degrading in easier times. Most of the time, my mum doesn’t let it get her down and so, nor do we.
 

My life will never be the same in terms of finding the strength to overcome a problem or challenge in the future. I am witnessing someone I love take on this disease and wrestle with it to keep hold of her independence, freedom of choice and free will. Moving forward in my life, both for myself and as a mother, I will endeavour to match my mum’s dignified strength and courage.

I’m about to head to America to film the fifth season of LEVERAGE, the US show that I work on. It stars Timothy Hutton as the mastermind of a gang of con artists who have come together to help victims of crime and corruption. I play Sophie, a mysterious, sophisticated grifter who can master any accent and has a soft spot for Tim Hutton’s character Nate. You can see it on FX channel here everyday at 10pm.

In my opinion, helping to care or support someone with MND is not a burden, but a wonderful opportunity to relearn everything you thought you ever knew about the majesty of the human spirit. Although, I would do anything to turn back the clock or obliterate this disease, the fact is, my mum has it and we have to cope with it, and I am grateful for the opportunity it has given my family to look after and support one another and to learn from everything that MND chucks at us everyday!

February Blues

This time last year you were mine
Being together was exciting and fun
Valentine's hearts and flowers
I wish you would send me one line

You're wracked with torment and shame
Soul mates forever you promised
Happiness has disappeared
I know that I'm to blame

Never again to meet
I didn't believe you would disappear 
Maybe you were but a dream
My memories remain sweet 

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.

Giggles!

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 

Social Media & Me

*WEBICINA PRIZE WINNING BLOG*

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 Webicina.com 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.

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