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