Saturday, 7 November 2009

Mashable Open Web Awards 2009

I would love for you to vote for me in the Mashable Social Media Ad Campaign category for Sarah's Story This film just won a British Television Advertising Award for Best Crafted Commercial. It has been passed for cinema viewing by the Advertising Standards Agency, yet banned from TV by watchdog Clearcast. Strange but true! Is my pain really too shocking for TV? Sunday Telegraph

Please help me to reverse this ridiculous decision by voting for to win the Mashable award. Just click on the blue Mashable box above and vote away! You can, and hopefully will, vote every day until 13 December. I made the voting round in one week, which shows how many people are affected by this horrific disease. Please share on Facebook and retweet on Twitter. I know that Social Media is an incredibly powerful platform and I can win this with your help.

I believe that if Sarah's Story is shown on British TV, we will raise more awareness of motor neurone disease, which will lead to a cure. We can save lives...

Thanks to everyone who nominated me. Let's put MND/ALS on the Social Media map!

Thursday, 5 November 2009

Whatever Happened to Guy Fawkes?

Here is a seasonal tale from my childhood. I've dragged this old chestnut out three times now in various places, but have some new friends who may like it. Speaking of chestnuts, where have the street chestnut sellers gone? Roasted chestnuts in brown paper bags were so amazing! So, on with the story...

We didn't celebrate Halloween in the UK when I was young. At this time of year all of the kids were excited about the 5th of November, bonfire night. A celebration of British history, when Guido Fawkes failed to blow up the Houses of Parliament. You may have seen the fantastic film, 'V for Vendetta', which takes it's inspiration from this tale.

Walking home from school, it was dark and cold already, you'd see kids huddled up in doorways with their homemade effigies of Mr Fawkes. Young cockney voices calling out 'penny for the guy!' My dad always gave them a few bob when I was little. As I got older they started buying cigarettes instead of fireworks; when my dad realised that he stopped giving.

So on the 5th of November, whether it was dry or pouring with rain, the sky lit up with amazing colours. I loved it! We lived in Stepney Green Dwellings which were ancient red brick, spooky flats. My dad always bought sparklers which we lit on the balcony. I still remember their smell and the bright, flickering lights.

I can't leave out the toffee apple man, who came around the back of the Dwellings with a cart full of delicious red and orange toffee apples. I don't remember him ever speaking; maybe he didn't?

It's all gone now, my dear dad, the kids calling out and the guys. Fireworks are usually only seen at organised displays and I can't chomp those delicious, sticky apples anymore because of MND. Red was my favourite....

Remember remember the fifth of November
Gunpowder, treason and plot.
I see no reason why gunpowder, treason
Should ever be forgot...

Thursday, 15 October 2009

My Tips for Life

I was going to call this my tips for living with MND/ALS but I think that this may help anyone. I feel that I've learned a few tricks in my 43 years and especially during my time with motor neurone disease. It's good to share, right?!!

1. Sometimes, particularly if you have an illness, you meet infuriating people. They are usually people in 'authority' who will use their position to intimidate you. The people who did this to me recently have been doctors and social workers. They think they know everything and talk at you, instead of to you. You know they are talking rubbish or avoiding the issue and they possibly know that too. My initial reaction was to show my aggravation, be rude if they were rude to me, or cry hysterically (mostly put on!)

That behaviour doesn't work. The way to flummox ignorant, power mad people is to stay very calm. Express your wishes slowly and succinctly. Only say what you need to say and don't engage in pointless conversation. It may get results and save your sanity...

2. Fear is the enemy. If you fear something, for example, an illness, it will feed off your fear. Dogs normally bark at the people who are scared of them. Bullies sense who are afraid of them and home in. When I lost my fear of my illness it left me alone. I fear very little (the dentist is scary) and that is empowering. Some people fear me, mainly the power freaks mentioned above, which works for me.

3. Every problem has a resolution. I've been in the depths of despair, wondering how I can possibly solve certain problems. I worried myself silly and couldn't eat or sleep. Especially if you are ill, everything seems to become magnified. My hospice doctor has always told me that and I agree with him. I try to remember that and remain nonchalant (not always successful). But problems do resolve eventually or naturally dissipate in time. And then new ones turn up!

I hope my thoughts will help some of you. I'm trying to be a peaceful warrior 'Life is what happens to you while you're busy making other plans.' John Lennon (1940 - 1980), "Beautiful Boy"

Monday, 28 September 2009

MND is....

Remember those cute Love is... cartoons by Kim Casali?

I thought it's time for some MND is...

MND is... an illness that totally changes your life. MND stands for Motor Neurone Disease and is also called ALS or Lou Gehrig's Disease. It paralyses the muscles which can affect mobility, speech, eating and breathing. It kills five people in the UK every day but raising awareness is like trying to get blood out of a stone! Is my pain really too shocking for TV?

Those are the facts; this is what MND is to me:

MND is... being unable to use my arms. But I can type with my chin which is pretty cool! I can only read e-books and just yesterday some titles were recommended to me. I happily started searching online and couldn't buy any of them in e-book format, sooo frustrating. The worst part of floppy arms is when you literally have an itch you need to scratch - I'm getting itchy thinking about it!

MND is... becoming an employer. I need 24/7 care and have to arrange everything, from hiring to firing and paying salaries. I got ill and became a recruitment consultant/bookkeeper. I don't like those jobs and am pretty rubbish at them. Needs must and all that. I have a wonderful team of carers now and am grateful that I have free care, enabling me to live at home with my children. Many MND sufferers are not so fortunate.

MND is... speaking in a alien tongue! Slurred speech was one of my first symptoms. I went from sounding drunk to speaking unintelligible gibberish. But I have the technology and an American synthesized voice, so can't complain. I do believe that losing my speech has been the most difficult aspect of MND for me and if I could have one thing back, I would choose speech.

MND is... a window of opportunity. I don't take anything for granted anymore and live life to the full. I believe that I've experienced more since diagnosis than I would have if I were well. Would I ever have started writing or participated in films and photo shoots as an able, middle-aged mum and housewife? I've met some amazing people, both in person and through social networking sites. I try to share my knowledge, as a long term survivor, to help others and raise awareness and funds. I wouldn't go back to my old life but dream of seeing a world free of MND.

In conclusion, MND is a horrific, silent killer and we desperately need a cure. If anyone reading this would like to help in any way, please give me a shout, thanks!

Wednesday, 9 September 2009

How Some Health Professionals Continue to Fail UK MND Sufferers

I attended my local MNDA meeting on Sunday and met a newly diagnosed woman called Sylvia. She has totally lost her speech and was given a Lightwriter. I detest them, possibly because I was given one with the wrong switch, so couldn't operate it. I appreciate that they are possibly the cheapest communication devices, which is why the MNDA provide them, but there are better options available. Unfortunately, Speech and Language Therapists (SLT) do not have a budget to provide communication equipment, which I find ridiculous, and I'm going to help my SLT address this issue in my Borough.

Back to Sylvia....she had her Lightwriter with her, along with a list of problems that she's experiencing with it. Me thinks 'easy, I'll help her', but after an hour I had to admit defeat. Whoever set it up had hidden the settings menu. Sylvia had told her SLT who has done nothing to help. Sylvia wrote to the supplier who didn't write back. Imagine being unable to speak and having the technology to help you but no support for that technology. Frustrating isn't it?

This is Mick Ferguson's story: 'Hi Sarah, here's one for you. My nurse got in touch with my Occupational Therapist to find out about a wet room. So after 4 weeks we get a visit. I might as well not have been in the same room as she spoke to my wife more than me. I went out of the room to go on my nebuliser for 5 mins and when I came back in the room I heard her saying to my wife 'if my boss thinks he will live for more than 5 years we might be able to get one'. So I wrote on my board, I will try to.....'

Shouldn't health professionals have some sensitivity? Hopefully, Mick will survive for a long time, what then?

I just received this email from Louisa Norman, whose father has MND and hasn't been given the equipment he desperately needs: '
Today after much talking on the phone to this Steve, Occupational Therapist, he agreed to come out and reassess dads needs. He sat in the same seat as he did over a year ago and asked us, "What do you want me to do?" I answered, "Could you tell us what you can do rather than we ask you, your supposed to be the professionals!" He didn't quite know what to say. Brenda, (Dads wife) kept asking why things weren't done when we originally asked for them because if they had of been we wouldn't have these problems now. All his answer to that was, "we're here today to discuss what we can do for Barry not what we haven't done for you in the past." We have had no support whatsoever from the MNDA. We have no MND nurse in our area and are literally fighting for all we are worth. Dad's motivation for living is deteriorating too and I'm frightened that unless we get these things sorted out he will give up completely. We need help and support and have nowhere to go with this, except possibly the press, to expose the flaws in the system. Please help us Sarah, how can we do something about this?'

I will try to help the Norman family to the best of my abilities. I gave presentations to hundreds of health professionals, outlining the problems I experienced, but it obviously wasn't enough. My Children's Social Services case is still closed (article). The fight continues.....


Sunday, 30 August 2009

My Afternoon at a Buckingham Palace Garden Party on 21 July 2009

Ruth and I

Martin Anderson MBE

I was invited to the Garden Party by Donna Cresswell at the MND Association back in February and was absolutely thrilled. Everyone offered to accompany me, of course, but I knew immediately that I should ask my friend, Ruth Jacobs. We met at secondary school, both grew up in East London and Ruth is the sister I never had.

Outfit and hat hunting started in about March and wasn’t easy! The official invitation from the Lord Chamberlain arrived in June and I knew that I wasn’t dreaming. I’m not really a Royalist but love the history and enjoy reading about past monarchs. I feel honoured to have been invited and to have the experience of attending a Royal Garden Party.

So the big day eventually arrived and I felt excited and nervous. Ruth arrived and we both couldn’t believe that two East End girls were going to have tea at the Palace. Cameras are not allowed inside so my carer took some photos at home before we set off. We had been hoping for good weather but got heavy showers; this is England! I forgot the rain cover for my computer and told Ruth not to take her umbrella because we had raincoats.... BIG MISTAKE!

We were quickly through security and inside the vast Palace gardens. Everyone looked amazing, the women in beautiful outfits/hats and some of the men in uniform or top hats and tails. There were also people in their National dress which was fascinating to see. There were a couple of bands playing lovely music so we sat under a tree to listen. We were joined by Martin Anderson MBE, who helped to found the MND Association in 1979. He is a wonderful person, who has done so much for MND sufferers, and it was a real pleasure to meet him.

There were large tents with refreshments, sandwiches and cakes. We waited for the Queen to arrive and take tea in the Royal tent. It was raining and we needed an umbrella (sorry Ruth!) and a kind lady let us borrow hers. Then we spoke to MP, Lembit Opik, before waiting near the entrance to meet the Royal Family. Wheelchair users only; disability does have some advantages! We needed an umbrella again and one of the Royal horsemen standing behind us kindly sheltered us under his brolly. He told us that all of the Royal horses have a six week holiday in the country every summer, lucky them!

Then the Queen arrived and I managed to say ‘thank you very much for inviting me today Your Majesty’, on my computer. She smiled broadly and said ‘how sweet’. Prince Phillip said hello and then we spoke to Princess Anne who asked where we were from. I was now covered by Ruth’s and my raincoat and she said how well prepared I was. If only she knew....
Prince Charles stopped to talk for longer than the others and I was really impressed by him. It was only general chat but he seemed genuinely interested. Then we spoke to Camilla, Duchess of Cornwall, Princess Alexandra and Lady Ogilvy. They were all very kind and polite and I was very pleased to have met them all. I could get used to a Royal lifestyle!

Friday, 28 August 2009

Daisy the Dog

I've been attending my local hospice for about eight years now. Daisy was one of my first friends; I was the only person she would come to and kiss and she made me feel special. Daisy had a beautiful honey coloured, soft coat and a gentle nature. I would have a photo of her but she would dart off at the sight of a camera! The only camera shy dog I ever met....

When I went to the hospice on Tuesday my friend couldn't get up to greet me as usual. I'd never seen her so still. When I went back on Thursday there was no sign of Daisy and I instinctively knew that I wouldn't see her again. Her owner told me she'd had her put down the day before and we both started to cry.

I have lost many friends that I met at the hospice and seen them suffer. If I were a dog I would have been put down years ago! I realised what a fine line there is between human suffering and the current 'hot' topic of assisted suicide. I would never choose to end my life but maybe I am wrong? I missed the people I'd lost from the hospice and used to think hospices are not a good place to hang out. However, I now know that I was honoured to meet such wonderful people (+ dog) and I remember all the strength and love that they gave to me.

I love life (most of the time!) and it's good to be here!!!