SARAH'S STORY

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WHAT IS
MOTOR NEURONE DISEASE?

Motor neurone disease (MND), in the majority of cases, is a rapidly progressive, fatal disease that can affect any adult at any time. The cause of MND is unknown and there is no known cure. MND affects around 5,000 people in this country alone at any one time. In the UK at least five people a day die from MND. Life expectancy for most people with MND is just two to five years.


SARAH'S
STORY

I was diagnosed with motor neurone disease in April 2000 at the age of 34, explains Sarah Ezekiel, the real Sarah behind 'Sarah's Story'. I was seven months pregnant with my second child and didn’t know anything about MND. I soon started to experience rapid loss of motor skills in all of my limbs as well as deterioration of my speech.

After several painful falls I started using a walking stick, then a frame, and now a wheelchair. I became a non-entity in my mind, and as my speech worsened, was treated as one by the majority of people.

I started attending my local hospice in April 2001 and they take care of all my medical and palliative needs. I attend their gym twice a week and believe that regular exercise has helped me to stay mobile. The hospice is a wonderful resource which has helped me to live and enjoy life.

One of the greatest things to have happened to make all this bearable was obtaining my laptop in 2005. Having been an extremely active woman, losing the use of my arms was devastating. I now use the program E Z Keys with a chin switch and I’m able to do everything on my laptop with ease.

I’m so pleased that I was able to take part in 'Sarah's Story'. I think the advert is shocking and disturbing and reflects the devastation that MND causes. I hope that it will raise more awareness and we will be nearer to finding a cure. The director and crew were very kind to me and let me try some scenes even though I wasn't sure whether I could manage them. Thankfully I did and I think that the film really shows the physical deterioration that MND causes to the body. I realise that I've been very fortunate to have stabilised but most people aren't so lucky.

Life with MND isn’t a bed of roses but with the right equipment and support I am managing it. I’m grateful for every moment with my children although I wish that I were able to do more with them physically. My greatest wish is to be around to see them grow up...



MAKING
SARAH'S STORY





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FURTHER
DETAILS

Visit the MND Association website - www.mndassociation.org

Would you like to speak to someone about the issues raised in this film? Contact MND Connect, on 08457 626262 or email mndconnect@mndassociation.org



Film produced by Bare Films. Post production by Prime Focus. Site donated by Zerofee.