Why the best cup of tea
is #Tea4MND

Jeremy Vine with Patricia

So far as I know I don’t have Motor Neurone Disease, and thank God my children and close family aren’t directly affected either. However I have friends who have been touched by this brutal, brutal illness — including a close mate whose sister noticed one year that she was struggling to write her Christmas cards. I am sad to say she was dead 16 months later.

For a long time I have wondered what, if anything, I could do to help people who suffer from one of the most savage diseases imaginable. Patricia, in the picture above, is as sharp as a tack but MND has stolen her voice, which I can see so frustrates her.

Maybe the key is simply for us all to be aware of it. When I was dancing with Karen Clifton we wore T-shirts to publicise the MND Association, which does great work.

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There is more on Motor Neurone Disease here. But so many questions about what triggers it remain unanswered.

By chance one of the key figures in local MND campaigning where I live in west London, Janis Parks, was walking past my house one day and asked if I wanted to be involved locally. That’s how I met Patricia and other people who are affected near me. The picture at the top of the page is from the Christmas party for the MND Association West London & Middlesex branch. I met some great people there: Deepa and Rekha lost their aunt to MND.

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When the time came to make a brief speech, I said how I felt it would be good if people like me — who are not directly affected by the disease — could still be conscious of what it does and supportive of those who struggle with it; either because they are ill or because they are the chief carer for someone with MND. Wouldn’t it be great if we all got involved, just a little?

And I said something about Strictly. Dancing with Karen, and watching her move, for the first time in my life I became aware of how precious movement is; and how those neural pathways from the brain to the feet work. And I realised how valuable those mechanisms are, and how I would hate to lose them.

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When I was in Blackpool the other week, supporting my remaining friends on Strictly, I got a tweet from a local lady saying: what about a cup of #Tea4MND? That’s how I met Jayne Halhead and her family. We thought we should go out on the sea front for our tea — crazy or what? Jayne and her sister (on the left) lost their father to MND, and you could see how hurt they were by watching him suffer.

By the way, if you enjoyed the famous ice-bucket challenge, that was started by MND campaigners in the States. They call the disease ALS over there (and also “Lou Gehrig’s Disease” after a famous baseball player who succumbed to it in 1939)

Anyway, it’s a really nice idea, a hashtag that gets people to share a cuppa and talk about the illness, and here we are.

Jeremy Vine tea for MND

Thanks to all MND campaigners for being so welcoming to me. And best wishes to all who suffer. Please know you are in our hearts, and you are supported.
Jeremy Vine tea for MND1

Jeremy Vine official website

 

11 Comments

  • Jan says:

    I have known five people who have had this disease. It is savage – slowly robbing the individual of their life, like the tide coming in, obliterating the shore. Co-ordination, balance, voice, strength – all are taken bit by bit – and all you can do as the afflicted is accept its progress and relinquish your life. Some can fight and gain more time, but not many. As the loved one, or friend, all you can do is try to remain positive whilst watching, supporting, grieving.

  • Elaine Fisher says:

    My husbands sister had this dreadful disease and it hurt him badly to watch her suffer, and we know of another lady who has it and in 6 months she has deteriorated so quickly. Thank you for highlighting this condition so people can learn about it. I must also say that I loved you on strictly and enjoyed your dances with Karen

  • Eleni Stephani says:

    Great article Jeremy, MND is a horrible disease and more should be done to raise awareness.

  • Where are they at with the research into figuring the cause of MND? Are they questioning every sufferer on their lifestyle, the things they have eaten or drunk a lot of? e.g. Perhaps it’s chlorine if there is a connection that many of them regularly went swimming. Perhaps they all use the same clothes detergent…I’m just using random examples but I’d like to know if there’s any factor common to sufferers – because that’s what research money should be directed towards establishing.

  • Elaine says:

    My 83 year old dad was diagnosed in September. He was the carer for my mother who has vascular dementia. My wonderful sister has taken them both into her home. In the eight weeks since they moved my dad has lost his speech and is unable to stand unaided, let alone walk. He has been supported well by services like occupational health and physiotherapist and now the palliative care nurse is stepping in. Such a cruel disease robbing my dad of his dignity. I remember the Ice bucket challenge but never imagined it would affect me and mine.

  • Ann Peters says:

    Thank you for your support and helping to raise awareness. I have MND and love to see the message getting out! x

  • Louise Clarke says:

    My uncle died of MND and I used to work as a nurse for a Motor neurone disease charity. It is the cruelest of diseases. I now work as a community nurse so see people suffering from all illnesses, but this is still the one I fear the most.Thank you for trying to help.

  • Lara says:

    Well done for actively supporting a cause you are not directly affected by. Your sense of empathy is wonderful! Not just in this case but throughout each and every of your radio shows.
    I don’t know much about MND but I will read about it now.

  • Val Collins says:

    I lost my husband to MND in 2008. In 2012, his sister passed away after developing MND. I have 2 sons, I hope against all hope that they will never have to go through what their dad or aunt did. They deal with the loss by fundraising for the MND Association. In 2014, along with their friend, Ant Oxley they ran and cycled 2014 miles each and raised over £56,500. This year my youngest son, Peter, set up the Tea4MND campaign, to raise yet more money. Since 1st September, he has raised over £5,500. A cure has to be found for this terrible illness. I hope it will be soon.

  • Jean King says:

    We lost a good friend earlier this year. This has to be the cruellest of diseases. She was a good athlete and to see her struggle as the disease took hold was hard to watch, but devastating for her.

  • Lee Millard says:

    Hi Jeremy,
    Many years ago the BBC produced an amazing drama “Goodbye Cruel World” with Sue Johnson. It would be great to see the BBC show this again. It was a three part drama. It would be great awareness for this disease that will strike up to 1 in 300 of us.
    Do you know how to raise the potential of this?
    Lee

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