Mother with motor neurone disease hails Hampstead hospice lifeline
Together with her family and friends, Sarah Ezekiel will be offering her help to Marie Curie in Hampstead on Mitzvah Day (November 20) to say thank you for all the medical support and facilities it has offered her.
I was diagnosed with motor neurone disease (MND) in April 2000.
I was only 34 and pregnant with my second child. My diagnosis was a complete shock. My symptoms were slurred speech and weakness in my left hand. After giving birth, I started to deteriorate rapidly.
I was blundering around, becoming progressively weaker, without any support. My GP told me that I probably wouldn’t live to see my children grow up. The therapist at my surgery said that she couldn’t help me. Eventually, a friend contacted the MND Association.
I was given an association visitor and she told me about the Marie Curie Hospice in Hampstead. I couldn’t imagine going to a hospice and told her that I wasn’t interested.
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Luckily, fate seemed to intervene. I had become painfully thin, couldn’t sleep and was very depressed. My brother made an appointment for me to see a doctor at the hospice. I was too ill to protest.
The doctor was extremely kind and understanding. She suggested that I start attending their day therapy unit, to use the gym and have some massage.
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I agreed and before long the hospice became part of my weekly routine. I started to see the medical director, Dr Adrian Tookman. He provided the medical support that I desperately needed.
I use the hospice gym twice a week and have had several alternative therapies. The hospice also offers respite and I’ve spent time as an inpatient there.
There are no specialist centres for MND sufferers – so hospices really do offer a very important service. I think that many people believe that hospices only help cancer sufferers but they do a great deal to help patients with MND too.
MND can make you feel very isolated but the hospice provides an opportunity to get out and meet people. There are also several volunteers kindly helping out so you’re guaranteed to see a friendly face. The staff are generally kind and sensitive.
On November 20, I will be taking a team of 12 friends to the hospice for Mitzvah Day. This is a Jewish-led day of social action.
On Mitzvah Day, around the world, thousands of people take part in hands-on projects, without fundraising, to support charities and to build stronger communities.
The mission of Mitzvah Day is to reduce hardship and poverty, to help our environment and to bring a little hands-on joy.
It is a way for everyone to make their mark regardless of affiliation, wealth, age, sex or nationality.
My team will comprise old and new friends, as well as my daughter and son.
It will be a pleasure to give back something to the wonderful place which has helped me so much.
* Anyone interested in taking part in Mitzvah Day should email firstname.lastname@example.org