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! 







 


Wednesday, 5 March 2014

The Selfies - Because I Can!

I know that selfies are generally ridiculed but I haven't been able to take them, until recently. I got my Tobii I-12 eyegaze computer in December 2013 and can finally go out with it mounted to my wheelchair. It's great to be able to talk to people and I love that I can now operate a camera on my I-12 myself. People are fascinated to see that I can communicate with my eyes and are quite happy to pose with me. Here are some of my more interesting selfies:-


ROBERT POWELL



I met Robert Powell at the Marie Curie Hospice in Hampstead. He opened their Christmas fair on 7 December 2013. He was mobbed but I got to the front and asked him for a photo. He was waiting for  someone to get their mobile out and was pretty surprised when I said I can take it myself.


JIMMI HARKISHIN



 I have to admit that this isn't a selfie but the story is quite funny. 23 December, in m&s. People were crazy and I was trying to get my last shopping done and my birthday cake (one day someone will buy it for me, I live in hope). I'm a big Coronation Street fan and he is one of my favourite actors in it. Queueing to pay for my shopping I spotted Jimmi packing his shopping at the end of the adjacent till. I told my carer and asked her to try and get him to come over. She tried and he was reluctant, until she told him I'm in a wheelchair. The wheelchair card is a good one. He rushed over, agreed to a photo on my mobile and said 'merry Christmas darlin, all the best'. He looks younger and slimmer than on the TV, just saying.


ELLIOT BALCHIN



Elliot was the compere at Movement for Hope's Rewired. Very sweet and did a great job. An actor to watch out for.



The next photos were taken at the Association of Labour Councillors Conference on 1 March 2014. When I was invited by the MND Association I didn't expect that anyone would bother with me.I couldn't have been more mistaken. Every MP and Councillor loved my computer and were extremely kind and patient. They all happily signed the MND Charter and discussed MND with us. I've always voted Labour and will certainly continue to do so.


ED MILIBAND



I didn't think I'd meet Ed because we were told that he had to go to another engagement. I spotted him leaving the conference room and told my carer, Andrea. She grabbed my wheelchair and asked him to speak to me. Her speed still makes me laugh! I managed to type 'I'm a big fan'. He said thanks and 'what an amazing computer'. Then agreed to have the photo. He was so patient even though he was in a hurry and I was impressed. Seems to be a very genuine and sincere person. He'll make an excellent PM.


IAIN MCNICOL



Iain is just super cool and we got on right away. Maybe because we're both secretaries ;)


STEPHEN TWIGG

 

Great person, always difficult to work out which way to move your head on the I-12! 
 

VERNON COAKER



Vernon is really down to earth. He actually chose this photo and deleted the other one that I took himself! Lucky that I have a touch screen.

HILARY BENN




How cute is that smile? I can't remember much more because I was tired, but Hilary was very friendly and interested.





Tuesday, 25 February 2014

Prescription Drugs - Just Say No?




I never took drugs before my diagnosis of motor neurone disease, not prescription ones anyway. Doctors don't really want to prescribe from my experience. 'Have paracetamol' is the usual response for everything.

Not when you're diagnosed with a terminal illness. A plethora of drugs are pushed on you, antidepressants, sleeping pills, valium, strong painkillers and I even had morphine pills. I'm currently going cold turkey on an antidepressant and feel like death. Headaches, nausea and general fog. Difficult to function feeling so odd and I'm wondering whether it's worth it.

I wasn't depressed. My weight was critically low and it was a choice between a feeding tube or the antidepressant, Mirtazapine, which makes you munch. I knew that I had to do something and chose Mirtazapine.

I'm quite sure that this drug saved my life after diagnosis. I was very depressed and didn't want to live. I didn't want to take it either, having pre-conceptions about 'happy pills'. I'd never experienced depression before and it's totally debilitating and scary. Combined with sleeping pills, it got me back on track. I tried to stop taking sleeping pills too but kept waking up and felt exhausted during the day. I love my sleeping pills.

I think I'm trying to say that whatever gets you through the night is alright. Or the day. Motor neurone disease constantly throws up new problems, even after 14 years. There will be new drugs to experiment with, undoubtedly.

Normal service will be resumed in a few days... 




Saturday, 15 February 2014

Life Without a Voice


The image above isn't pleasant. Living with motor neurone disease (MND) isn't either, but after 14 years I am used to my condition. I no longer feel disabled, I work voluntarily for two charities and I know that I work well. I have been bringing up two children on my own since 2003 and they are now kind, thoughtful teenagers. I'm an empowered patient and manage my condition very well, with the help of my hospice doctor. MND forced me to become an employer and I manage a payroll for five carers. Coordinating care isn't always easy but I do it because I want to choose who works with me. I run my home alone, pay bills and have bank accounts like everyone else. I use Tobii eyegaze technology to do most things online and I love being independent.

I'm not saying all of the above to blow my own trumpet or to boast. I'm saying it because, every now and then, a situation occurs that makes me feel like the woman in the photo. Yesterday was one such occasion.

I opened a letter on Thursday evening from the HMRC about my tax credits. The letter said that they suspect that I'm living with a partner but that I've claimed tax credits as a single person. They asked me to send them a stack of original documents within two weeks. I knew that I had to phone them and from past experience, knew that this would be a problem. Increasingly, we are expected to listen to computerised voices when we call government departments and big organisations nowadays. The problem is that the staff at these places are not prepared to speak to someone using a computer as their voice.

My voice is unintelligible to most people. I've accepted it. I have eyegaze computers with wonderful, loud, clear voices and I love using them. The woman at the HMRC spoke to my son first, who explained that I could talk to her with my computer. She didn't say OK and continued to ask him security questions. She found out that their letter was sent to me by mistake. Before hanging up she advised me to appoint someone to speak to them in future. I told her with my computer voice 'I do everything myself'.

Last year I tried to transfer a balance from one credit card to another. There was something wrong with the online banking system so I had to go to my local branch. The staff know me well and phoned the credit card section. No one there would do the transaction because I couldn't speak to them on the phone. Six months later I received a letter saying that my credit card won't be renewed.

Every year the DWP ask me to send my bank statements in. I sent them twice and finally by recorded delivery because they kept requesting them. I had the tracking number and my carer phoned to give it to them. They wouldn't speak to her and aggressively told her that I must appoint someone, not only to speak on my behalf but to receive my income support. How can I pay my bills if someone else receives my money? They sent an appointee form but I threw it away, hoping that when I have to phone them again I'll get a more compassionate person...

Tuesday, 11 February 2014

REWIRED



Here is my talk and some photos from Rewired:



 
 Hello everyone, it’s great to see you and to be here!

I’m pleased to finally have the technology to speak to you, after a long wait for funding.

You’ve heard the bad stuff about motor neurone disease so I’m not going to talk about that.

I will say that I have survived for 14 years, the official prognosis being 2 to 5 years, so I feel very fortunate.

People often ask me how I cope and lead such an active and happy life.

I only have a few minutes so I’ll try and fit everything in!

To start with, having good assistive technology is essential.

If you can’t speak or move, being able to communicate prevents feelings of isolation and helplessness.

I use Tobii eyegaze technology which has also enabled me to create again, and you can see some of my work on the screen.

Creative expression is so fulfilling and everyone should have that capability now that the technology is available.

Exercise, good nutrition and quality sleep is not only a must have for people with neurological conditions, but for everyone.
I look back and wish that I had been kinder to my body instead of partying hard.

Immersing myself in work that I’m passionate about stops me from dwelling on my illness and keeps me in the moment.

I particularly love my work with Movement for Hope because this charity has such energy.

We are not only raising awareness of neurological conditions in the UK, but globally.

I’ve always believed that awareness leads to treatments and cures.

Someone with Parkinson’s recently said that compared to my illness, her’s is a walk in the park.

Not so, I protested, every condition is equal and relative.

It’s vital to see the bigger picture and that is what Movement for Hope does.

Thanks very much for listening and for your support! 



















Friday, 24 January 2014

The Park that Died in 2010

Sturgess Park, NW4 (Photo taken with Tobii I-12 eyegaze computer)




This is my local park. When my children were young there were swings, instead of an empty frame. There was a roundabout, but that has gone. The park was full of children, laughing and squealing with delight. It's usually empty now.

The park is now a dumping ground for old furniture, baths and recently, an old dirty toilet. Barnet Council used to provide street skips twice a year. That stopped in 2010.

My daughter is doing A levels and doesn't know if she can face university and the mountain of debt that will come with it.

The government say that things are improving, but children don't have something as basic as a clean park with equipment to play on. The children that enjoyed that facility are now young adults with no enthusiasm or motivation for the future.

Sad and hopeless. 




Monday, 3 September 2012

My Life of Brian - E17 Art Trail Exhibition, 1st September 2012

When I was asked to exhibit as part of the E17 Art Trail I immediately said yes. I usually say yes to pretty much anything that will raise awareness of motor neurone disease. I started to frame up my prints thinking this will be a doddle.

I went to visit Walthamstow Library to find the best space. I had to find a fairly dark, large area to hang my work and situate an eyegaze computer. The only suitable space was partly in use but I was told that I could use the back wall. I was also told that I couldn't put nails in the wall so after many tweets I found a hanging solution. Gotta love twitter! Luckily, I met two of the Art Trail organisers by chance and I think they could see that I needed help and support. They introduced me to artist, Toby Poolman.

I can honestly say that without Toby my talk would have been dull and my work would have been crooked, instead of perfectly aligned on the walls.


Despite an English Defence League march and the police closing the roads around the library, I had a good turnout and really enjoyed the day. I still can't believe that I've had my first exhibition! Here is a transcript of my talk and more photos:

"Hello everyone and thank you for coming. When I was diagnosed with motor neurone disease in April 2000, I never imagined that I would have an art exhibition. In fact, if I'm totally honest, I never imagined that I would have one before I became ill! But here we are, so let's begin.  

For those of you that don't know about motor neurone disease, it's a fatal, degenerative disease with no cure. I've beaten the odds because the usual life span is 2 to 5 years.  I was only 34 and pregnant with my second child on diagnosis. I'm sure that you can all understand the shock and horror that I felt.  

I skulked around for a few years, unable to do much. That changed when I got my first assistive technology computer.  I've been actively raising awareness of motor neurone disease for several years. You may have seen me on a tube poster or in a scary cinema advert!  So, all in all, I was pretty busy, when my lovely friend Hector introduced me to Tobii eyegaze technology. Eyegaze has given me a new lease of life because it's much quicker than any other assistive technology.  Hector told me that I would be able to paint and draw with eyegaze and I was desperate to try.

I had some drawing skills but when I lost the use of my hands I gave up all hope of creating anything again.  I use software called Revelation Natural Art and will demonstrate how I use it soon. It's similar to art programmes on i pads but slightly trickier to use without hands!  Being able to create something again has made me feel much more content. I can escape from my normal life, which can be pretty frustrating and mundane.  I feel as if life is suddenly far more colourful and interesting.

My title piece, My Life of Brian, was inspired by slides of motor neurones at a conference.  Dr Brian Dickie was giving a talk and I was finding it a bit tedious, but I was transfixed by the images he was projecting. I'm also inspired by nature, as well as artists such as Modigliani, Picasso and Rothko, and have always loved colour.  The process of creating each piece is painstaking and can take several days or weeks. I have to be careful that I don't strain my eyes because they can become very sore.

I had to wait over one year for funding for my eyegaze technology and I'm incredibly grateful that I have this cutting edge equipment. I'm selling prints and cards online and all of the proceeds will purchase Tobii eyegaze technology for others with my illness.  I've extended my exhibition until 14th September and my work will be at the Arts and Crusts cafe, 19 Victoria Road, Walthamstow E17 4JT from tomorrow.

If you like something don't feel shy to buy it here or online!  I must thank Carol and Hector for telling me about the E17 Art Trail, as well as the Trail and Library staff for their support. Special thanks to Toby for his brilliant advice and for helping me with the installation of my work.

Thanks for listening.

Does anyone have any questions before I give a demonstration?"