50

I am 50 today. I was diagnosed with motor neurone disease when I was 34. My GP walked into my bedroom where I was sleeping with my week old son, and said that I probably wouldn't see him grow up.

It's been a tough 16 years, I can't deny it. I mourned for my independence and my old life for years. I still have problems with carers and this year was particularly bad because of one carer. I still haven't recovered, physically or mentally. Unfortunately, I wasn't the woman with a husband who wanted to protect me and care for me lovingly, so I'm vulnerable. I never felt that until recently. 

But I made a new life and generally I'm happy. I adore my children, Aviva and Eric. I know I'm very lucky to still be here with them. I've watched many friends lose their lives to this insidious disease, with great sadness. I don't know how long I have on this earth but I don't feel that my death is imminent. Who knows?

MND has much more awareness than when I was diagnosed, and I've always believed that awareness will lead to a treatment or cure. There are now many brave people with MND who are willing to talk about their experiences, which really helps.

I just watched a video from Israel about a man with MND who has recovered after a new treatment. There is hope.

Happy birthday to me and happy holidays to you!

My Keynote Speech at Speaker's House, Westminister - 27/01/15

Yesterday, I attended the launch of the APPG report 'Condemned to Silence'. Here is my speech:

"Hello, I am Sarah Ezekiel and I was diagnosed with motor neurone disease in 2000, at the age of 34. I’m really pleased to join you all at this important event. Most people with MND don’t live as long as me, and I’m here today, partly, to give a voice to all those who can’t be here.   

I first noticed something was wrong when my speech became slurred and I had weakness in my limbs. I was pregnant with my second child and my diagnosis was devastating for my family and me. My marriage collapsed and I was given custody of our children, which I manage with 24 hour care.

I’m now the secretary of the North West London MND branch and on the board of a charity called Movement for Hope. I’m also a digital artist. I wouldn’t be able to do any of my work without the eyegaze technology I’m using now.

Losing my voice has been the most difficult part of my journey with MND. I used to be very talkative and I miss easy conversation. I feel that I've lost part of my identity forever. I also struggled to get funding for communication aids from day one. I feel very lucky to have the technology that I need now, but had to wait a long time for funding. Being able to communicate again gave my life back to me, and makes living with MND much easier.

Having the ability to communicate is a basic human right and I don't think that there should be a postcode lottery for this essential equipment. I welcome the All-Party Group report and hope that it will lead to improved services for people with MND, so that no one will die without a voice. We have the technology, so why should people with MND suffer?

On diagnosis of MND, because it has such a poor prognosis, it’s easy to feel as if you have been written off. Doctors can’t offer much, only a drug called Riluzole, which might extend life by a few months. With technology like mine, severely disabled people can contribute and be valuable members of society. 

 

I can email people, shop and bank online, use social media, read, run my online art shop and express myself creatively. I can also control my environment, including my TV, front door and curtains. I can do everything that able bodied people can do online and feel much more independent. I feel very fortunate and hope that everyone with MND will have the opportunity to be in my position soon. 

Thank you."

With MND Campaign Champions

No One Should Die Without a Voice.

I originally intended this to be a written blog but it became a video blog. I want to publish it in it's original form.

Once upon a time I was just like my family and friends. Then things started to change. 

You speak and the sound is different and you’re left wondering why. It’s difficult to form words. You were always a chatterbox, laughing and joking, ten to the dozen. Now you sound tired or drunk. Speech Therapist says to tell people ‘I have a speech problem’. People behave strangely. 

When you’re with friends you can’t join in with the conversation because by the time you’ve formed the words they have moved onto another topic. It’s difficult to be heard in a crowded room because your voice is much softer than before.

In time, people looked puzzled when you speak, and you have to speak slowly and repeat yourself over and over. Your hands don’t work either, so writing is not an option. You slowly disappear, turn into someone different, an unfamiliar shadow of your former self. Depression envelops you like a black cloud and you can’t function. Two babies to care for but you can’t even care for yourself. All the time wishing that the horrible disease will go away and leave you alone. Desperate to be you again. 

Eventually, no one can understand you. People think that you can’t understand them and speak loudly or ignore you. Frustration, anger, sadness. 

You don’t think about assistive technology because you’ve never been disabled; don’t know anyone who is disabled. Health people come in, can’t help or give you equipment that you can’t use. Finally, MND Association Visitor brings you someone who knows everything about assistive technology. You see a way back to that old you. Communication, reading, writing, internet use again. How do you get the money for very expensive assistive technology?  

 

Speech therapist says ‘no budget’; Occupational therapist says ‘no budget’. Now divorced, single mum doesn’t have budget. You have to ask charities for money which is alien to you.

MND Association help. They help many times, as technology becomes outdated or you can’t physically use it anymore. 

In 2013, your CCG has most of the money for portable eyegaze. Suddenly, you have a voice everywhere, people can’t wait to talk to you and see your magic computer. You give talks to health professionals, you can almost keep up with conversations and you have a very loud voice. You discover that you can paint with your eyes. Art was always your great passion. You visit children with special needs at school and attend art therapy at hospice. You’re still severely disabled but part of you is back and it feels so good. 

Technology is there. Everyone can have a voice.

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! 

 

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.

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... 

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...