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!
