Thursday, 12 June 2014

BISWG Presentation, 11th June 2014

I was invited to speak and exhibit at the BISWG Conference and here is my presentation:

Hello everyone, it’s great to be here! I’m going to talk about my journey with assistive technology, which has been quite an adventure.

I was diagnosed with motor neurone disease in April 2000, at the age of 34. I was 7 months pregnant with my son, and my daughter was 3 years old. The disease progressed rapidly after I gave birth, which was terrifying. Within one year I had lost the use of my hands and couldn't operate my computer anymore.

My local computer centre gave me an on screen keyboard and a switch that I had to strap to my knee with velcro. The switch kept slipping and I gave up out of frustration. I lost contact with the people I had met online with my condition, and missed their support.

My speech had also deteriorated and I was given a Lightwriter by the MND Association. I had the same problem with the switch, which I was trying to operate with my foot. I just couldn't do it and never used the Lightwriter. No one was able to advise me about different switches and I wasn’t able to research online.

I was entirely cut off from everything. I spent every day with carers who couldn't understand me very well, and my young baby. I felt incredibly isolated and depressed. I was admitted to my hospice because I wasn’t eating or sleeping and felt suicidal. My marriage was breaking down and I had lost hope.  

The situation only improved in 2005, when I met Hector Minto, through my MND Association visitor. He was working for a company called Possum, and showed me a laptop with E Z Keys and a chin switch. Shortly afterwards with the help of the MND Association, I had this equipment at home. I was able to email, surf the net, read and communicate again. I started writing my story, which was very cathartic, and actively used the internet to raise awareness of MND. I also created my own website, started to organise my care and do as much as possible to live a normal life.

I joined the Patients Like Me forum and could discuss my condition with other people. I became an enlightened patient which I feel is vital when you have a terminal illness. My hospice doctor let me email him whenever I was anxious, which was a great comfort.  

I also started to write a blog and used it to express my feelings about my condition. People would leave comments and I felt that I was being heard.
I was happy with E Z Keys until I started to develop severe neck pain from my switch in 2010. I had several cortisone injections but the pain kept returning. I knew that I had to find another way to operate my laptop, because life without computer access would be impossible.

I did some research on MND forums and found that most people in America and Europe were using Tobii eyegaze computers. Unfortunately, there was no government funding here in the UK for technology, and I couldn't get funding.

I spoke to Hector again and he arranged for me to trial the Tobii PCEye. I was dubious that I would be able to do everything with my eyes without using a switch. I was pleasantly surprised because I could do everything and it was so much faster. The PCEye and Sono Key was just over £7,000 at that time and I didn’t know how I could get the money. In desperation, I emailed the C.E.O of the MNDA and she found a donor for me. I was very grateful and relieved.

My PCEye was ordered from RSL Steeper and they were very quick. Speed is essential for MND sufferers, because progression can be rapid. Hector told me that not only would I have online support from Tobii, but that RSL Steeper would also provide local support. This was very important to me, because my previous computer supplier, Possum, stopped selling my equipment. They then refused to provide any technical support and I struggled alone for 3 years.

After talking to my RSL Steeper engineer, I decided to get environmental controls. I’m now able to control my TV, curtains and open my front door. When my teenagers leave the room with MTV blaring on TV, I can change channel! It’s wonderful to have some control back, after years of dependence.

In April 2012, I accepted the voluntary post of Secretary for my local MND branch. I’m also on the board of a charity called Movement for Hope, and love both jobs. I know that I couldn’t do this work without eyegaze. I take minutes at meetings and switch access isn’t quick enough. I also have more energy and can do more than I could before because of the speed.

In March 2012 I started painting on my computer using Revelation Natural Art software. I had always loved drawing and painting and studied art and history of art for A Level. When I lost the use of my hands I honestly believed that I would never create anything again. I still can’t believe that I can paint with my eyes. 

It's very different to using my hands and time consuming. However, I absolutely love being able to create, and express myself artistically again. I started posting my work on facebook and twitter, and people asked if they could buy my work. Hector and I opened the not for profit Eyegazeartists website to sell prints. Because of my experiences, I decided to purchase eyegaze technology to loan out to people who need it, with the proceeds of my sales. To date, we’ve helped 4 people, and will continue until funding is available for everyone.

The other problem I had was that my PCEye isn’t portable, so I didn’t have a voice outside of my home. When the NHS changes took place in April 2013, I asked my speech and language therapist to apply for funding for this computer, the Tobii I-12, from Barnet CCG. Luckily, the Commissioner agreed and I now have a voice everywhere. I attend art therapy at my hospice and have given some presentations for my charities. I may be severely disabled but I feel that I can do almost everything because of AAC. Life is good!

Does anyone have any questions? It will take time for me to answer but I’ll be as quick as possible! If you would prefer to email me please take my card. Thanks! 



  1. Sarah,you are one remarkably brave women,I admire you so much.My husband suffered from #MND for 30 years,he was as incapacitated as Stephen Hawkin.We had 3 very small toddlers when the illness struck but I managed to look after them & nurse my husband on my own I loved him very much and felt he deserved all the loving respect possible. We were among the founder members of MND Association,there were only 50 people in the country at that time!
    He was a very brave,intelligent & non complaining man,heartbreaking to see him suffer.
    I wish you all the help & care that you need lovely brave lady.
    Much love
    Yvonne Lees

  2. I admire you Yvonne! Your husband was very lucky to have you and thanks for helping to found the MNDA.