A mum from London who thought her symptoms were caused by pregnancy tells the Mirror how she was ‘absolutely terrified’ when she was told she had Motor Neurone Disease
Some 1,100 people are diagnosed with Motor Neurone Disease (MND) in the UK every year and at any given time there are around 5,000 adults living with MND in England, Scotland and Wales. But can you imagine being told you have MND when you are pregnant with your second child?
That’s exactly what happened to Sarah Ezekiel, 59, who was diagnosed with the health condition back in 2000.
Before she received the devastating news she didn’t think too much of her symptoms as she thought they were pregnancy-related. But what happened next changed everything.
“I was pregnant with my second child and I told my obstetrician, thinking my symptoms were pregnancy related,” Sarah says.
“I had slurred speech and muscle wasting in my left arm and he referred me to a neurologist. When I received my diagnosis I was shocked and absolutely terrified of disability and death.
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“The first thing I asked my neurologist was how would I care for my three-year-old daughter and my unborn son? She assured me that I could, with the help of carers but it was very difficult for me watching strangers doing what I wanted to do but couldn’t.
“Now I need help to do almost everything, like eating, toileting, bathing etc because I can’t use my arms,” she adds. “The worst thing about having MND has been losing my speech.
“I can’t make phone calls and it’s very difficult when I have a new carer, because they don’t know my routine and can’t understand me.
“I’ve also lost the use of my arms but still have some strength in my legs because I exercise regularly so I can take a few steps with help.”
Although the last 25 years have been difficult for Sarah, she says an MND diagnosis doesn’t have to be the end of your world. She believes that with the right support and equipment anything and everything is possible and that people shouldn’t give up.
“I was very depressed for years after my diagnosis and my marriage ended, leaving me with full custody of our children. I felt suicidal but was too disabled to do anything about it. I never thought I could be happy again but things turned around for me spectacularly. I actually think that MND empowered me and been the making of me!
“Using eye gaze technology I’ve managed to create art, write my memoir and write, direct and perform in a show called Ms MaNDy’s Adventures in Wonderland.
I now have my first paid employment in 26 years with the MiND project, am co-chair of the North West London MND Association branch and patron of Lifelites, a charity which donates technology to children’s hospices. Even with a terminal illness and severe disability you can achieve many things.”
Sarah Ezekial is an MND Association Volunteer and is backing the charity’s partnership with Omaze, which is giving away a stunning beachside property in West Sussex worth £4 million – along with £250,000 in cash – to raise money for MND Association. Draw entries are available now at https://omaze.co.uk/pages/enter-sussex – the Draw closes at midnight this Sunday June 29th.
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