Sarahville

Mitzvah Day 2011

2011-11-27T13:36:00.000-08:00

Mitzvah Day was on Sunday 20 November 2011. 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. Here are some photos, by Harry Borden, of my friends and family, who planted daffodils in the garden of the Marie Curie Hospice, Hampstead. I was supervising!


Karen my carer and Harry.

My wonderful team of friends & family!

Cake for hospice, kindly donated by Shelley at Grodzinski.


Touring the hospice which has been beautifully refurbished.


Giggles!


And work begins!


Eric & friends!


Dr Adrian Tookman - gotta love a hugging doctor!


My other lovely doctor, Faye Gishen.


With Hospice CEO, Thomas Hughes-Hallett.


Meeting the Chief Rabbi, Lord Sacks.


Back home for lunch.

It was a fantastic day! My thanks to everyone who helped me to give something back to my hospice, which is so special and important to me.

Social Media & Me

2011-11-26T10:27:00.000-08:00

*WEBICINA PRIZE WINNING BLOG*

I started my professional life after dropping out of art college at 19. After a 3 month stint in a local supermarket I knew that stacking shelves would never be taxing enough for me. My parents offered to pay for a secretarial course. I didn't want to be a secretary but knew that I had to earn a living somehow.

I landed my first job at a publishing company, which produced magazines and books for children. I was PA to the Editorial Director and spent 3 very enjoyable years there in colourful Camden Town.

When I started in 1986, I was using an electronic memory typewriter. Top of the range kit at that time! Then the Amstrad word processor came out and I felt very accomplished using that. I had no idea of the possibilities that technology would bring and how it would become my lifeline in the future.

My first inkling came a decade later in 1995. I was PA to Dr Michael Chamberlain,who was director of new media activities at United News & Media. He had an Apple Mac and showed me the internet and how to use email. I remember feeling excited about the internet's potential even though nothing much was going on at that time.

I was a full time mum when I was diagnosed with motor neurone disease (MND) in April 2000. You can read my technology journey here. I want to expand on my use of social media in this blog because it has undoubtedly helped me to manage my illness. It has also enabled me to raise awareness of MND, an orphan disease with no treatment or cure.

After diagnosis, when I had accessible computer access, I scoured the net, desperate to connect with other sufferers. I became a member of Patients Like Me and immediately felt supported. It was a great relief to know that I was not alone with this disease and I felt comforted. I learned about MND management and equipment from other sufferers. It feels good to be an empowered patient! I've even taught my doctor a few things. Now I spend some of my time sharing my experiences on various MND forums. As a long term survivor of MND (the official prognosis is 3-5 years) I want to help others. I've recently discovered Webicina.com and would like to collaborate with them to see MND featured on their site.

I love that I can share information through my website. I'm also an avid tweeter and facebook user. When I appeared in Sarah's Story I used both platforms to show the ad. I won the Mashable 2009 web award for Sarah's Story, in the category of Social Media Ad Campaign. The fact that I won through the votes of people on both social networks really highlighted the power of social media to me.

There are great MND communities on both twitter and facebook. We share research news which gives hope and keeps us upbeat and positive. Without social media, everyone would sit in isolation and feel hopeless. I actually find tweeting very cathartic and can voice frustrations as well as share good moments. I've made connections with wonderful people all over the world. Some have helped me to fundraise or raise the profile of MND. Life with a terminal illness is a veritable rollercoaster but social media has made everything much easier and more enjoyable for me.

Tobii Study Day, 29 September 2011

2011-09-30T14:11:00.000-07:00

Here is the talk that I gave at the Tobii Study Day - The Eye Control Learning Curve

Hello, my name is Sarah Ezekiel, and this is my assistive technology journey.

I was diagnosed with motor neurone disease in April 2000, at the age of 34. Within one year, I had completely lost the use of my hands, and couldn't operate my computer anymore. My local computer centre gave me an on-screen keyboard, with a switch that I had to strap to my knee. The switch kept slipping and I gave up out of frustration. I spent almost four years without computer access.

In 2005, my MND Association visitor introduced me to Hector Minto. He showed me a laptop with the program ezkeys, and a chin switch. I was using that equipment until February this year. I'd been happy with ezkeys, but started getting terrible neck pain, from my chin switch. Now I'm using the Tobii PC Eye and I love it!

I don't know how I would cope without computer access now. I use it to shop, pay bills, and do my banking, online. I communicate with my children's school, my social worker, and care agencies, via email. I also use facebook and twitter to raise awareness of MND, and keep in contact with friends and family. I've created my own website and blog, which enables me to express myself and for people to understand MND.

The internet has helped me to connect with people too. I've had several photo shoots, artists paint me, appeared in an advert, raised funds and campaigned for MND awareness. I've also had several articles published, in various newspapers and magazines. My life is far more interesting, because of these interactions.

I no longer feel isolated and depressed about having MND. I can contact other MND sufferers through forums, such as Patients Like Me or the MND Association forum. I can also email my GP, hospice doctor and nurse, if I need any medical help. I feel much more positive about my life, which is important when you have a terminal illness. I hope that other people gather inspiration from the way I live my life, despite being severely disabled. I know that would be impossible without my computer.

I was skeptical about eyegaze technology at first. I didn't believe that I would be able to do everything that I could do with a switch. I was pleasantly surprised. I can actually do more with eyegaze, like access my bank account and edit my website. I had to ask my carers, or children, to help me with those things before. Using my PC Eye was tiring initially, and I struggled to hit targets. Now I can write so quickly, which is much less tiring at the end of the day. I'm also very accurate, even though I wear glasses.

In conclusion, the Tobii PC Eye has vastly improved my quality of life. I had to wait over one year to get funding for this equipment. I am campaigning to make accessible technology available to everyone. I'm even getting environmental controls soon. I never wanted them before, but everything feels easier with eyegaze.

Thanks very much for listening.

Talking with my eyes!


Hector and I during Q&A

Marie Curie Hospice, Hampstead

2011-09-03T12:39:00.000-07:00

This blog is one that I've wanted to write for several years. I was finally inspired to do it by photographer, Harry Borden. We met when he took my photo for an article in the Sunday Observer magazine.

My son, Eric, and I.

Harry kindly offered to take more photos, and recently came to the hospice with me. I'm extremely grateful to him for taking these photos and finally bringing my blog to life. It's my hope that some people will benefit from it.

The Marie Curie Hospice in Hampstead has, without a doubt, vastly improved my quality of life with MND. When I was diagnosed in April 2000, my neurologist gave me a leaflet about the MND Association. I was too frightened to phone. When I finally summoned up the courage on a Friday afternoon, there was only an answer machine. I didn't leave a message. Now there is MND Connect to help.

I was blundering around, becoming progressively weaker, without any support. My GP had told me that I probably wouldn't live to see my children grow up. The therapist at her surgery said that she couldn't help me, but could offer me a shoulder to cry on. I decided to cry on my own shoulder. Eventually, a friend contacted the MND Association, because I was really struggling.

I was given an association visitor and she told me about the hospice. I was only 34 and couldn't imagine hanging out at a hospice. I told her that I wasn't interested. 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 weak 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. 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. Having worked with terminally ill people for a long time, he seemed to understand how I felt. I was comforted for the first time since diagnosis. Unfortunately, I couldn't see him when Harry came with me, but this is an old photo of us together.

Adrian helped me through a nasty divorce, to manage the changes that MND forced on me, and treated my depression. I wonder if I'd still be alive, if not for him. Adrian's my hero! I have to mention a nurse who works with Adrian, called Aisyah Scott. I've had poor service from my district nurses, but Aisyah has gone out of her way to help me. She's more like a friend to me now, which is very reassuring. MND terrified me at first, but I no longer fear it. I'm sure that is because of the support I've received at the hospice.

So, I've given you the background. Now I want to use Harry's photos to bring the story up to date.

I attend the hospice twice a week with my carer, Karen (left). This is the receptionist, Josie, with Bob, the new hospice dog. Just being greeted by Bob is a real tonic and brightens up my day.

I try to use the motomed bike for at least 25 minutes, to keep my legs strong. It's probably the most popular piece of equipment in the gym, so in great demand. I hope they'll have the funds to buy another motomed soon. The gym is fairly small, so finding space might also be a problem. The hospice only receives some government funding, so relies on fundraising and donations from generous individuals, organisations and income from their shops.

One of the physiotherapists, Jill Pemberton, moving my legs and hips. I've been experiencing hip pain recently, so these exercises are really helping to keep my joints mobilised. All of the physios are very experienced and I can trust them. It's pretty disconcerting when your body starts moving in a totally different way. They help me to manage these changes and also recommend useful equipment.

Several complimentary therapies are available at the hospice. I could never afford them privately, so I'm very grateful to have had the opportunity to try them. I often used the hydrotherapy pool at first. It's so wonderful to feel weightless in warm water, when every movement on the ground is such an effort. I've also had reflexology, tried homeopathy and more recently, hypnotherapy. I was quite ill last year and also depressed. Sometimes, living with MND can make me feel hopeless. Hypnotherapist, Paul Byrne, (below) helped me through that. He's patient and helps me find ways to cope with problems that crop up. Sometimes, it's just enough to have the space to forget about worries at home. Paul's also very funny and it's good to have someone to laugh with.

The hospice also offers respite and I've spent some time as an inpatient there. The staff are good and caring, although very busy. I'm glad to know that I have somewhere to go if I'm ill. I find hospitals frightening, especially since my speech is so badly impaired. There are no specialist centres for MND sufferers, so hospices really do offer us 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. End of life care is also important when you have a terminal illness. It's good to know that I'll be able to pass away with dignity and peace (I hope!)

This is my friend, Alicia, whom I met recently at the hospice. Alicia has MND and can no longer drive. Hospice transport brings her to the day therapy unit twice a week. 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.


Alicia, Eric and I, in the beautiful hospice garden.

In conclusion, I can't imagine my life without the hospice. The staff help me to stay positive about my situation and are generally kind and sensitive. I've made many friends there. Unfortunately, some have lost their battle with cancer and MND, but I feel lucky to have known them. We are seeing cuts in services everywhere and everything is more expensive. I hope that some of you will help to support your local hospice.

I'm hoping to get a team together to volunteer at my hospice for Mitzvah Day 2011.

I ♥ My Hospice!

The 'miracle' kill or cure, by Amy Molloy. Sunday Times Magazine article, 27/02/11

2011-02-27T07:29:00.000-08:00


by Tom Pilston

I was the victim of a stem cell swindle

Sarah Ezekiel , 45, who has motor neurone disease, travelled to a private clinic in America for stem cell therapy. Now, £15,000 lighter, with no improvement in her condition, she is warning others not to make the same mistake.

As the man in the white coat handed me a test tube and told me to hold it in my hands until the contents defrosted, then to inject it into my stomach, I willed my body to be responsive. I was terrified of leaving my two children, then aged six and three.

I was only 34 when I was diagnosed with motor neurone disease in 2000, while seven months pregnant with my second child. The symptoms appeared so suddenly — slurred speech, muscle wastage in my left arm — that I thought I’d had a stroke. However, tests confirmed MND and the next thing I knew, doctors were telling me I had two to five years to live. By this point, as well as a three-year-old daughter, I had a newborn.

My symptoms quickly worsened — within a few months I was unable to walk and I had to watch strangers care for my baby, which was heartbreaking. My marriage was disintegrating under the strain. I just wanted my life back.

Then my brother found me an article about a young MND sufferer in America who had an umbilical cord stem cell transplant and reported some improvement.

In hindsight I should have done more research, but my hands were too weak to use a computer by this stage, and when I asked my hospice doctor he simply wished me luck. It was such a new treatment that nobody seemed equipped to advise me.

On May 4, 2003, I arrived at the BioMark private clinic in Atlanta and handed over a cheque for £15,000. I felt incredibly excited — convinced I was going to make a full recovery — though doctors there warned it could take up to a year to work.

In the next few weeks I had a recurring dream that I was well again, cooking and spring-cleaning my house.
Seven months later I gave up hope.

Two years later the BioMark clinic was shut down by the American Food and Drugs Administration and fraud charges were filed against its directors for embezzling $1.2m from patients with incurable diseases, including multiple sclerosis and Parkinson’s disease.

Maybe I should have suspected, seeing as their slogan was ‘Medicine is a collection of uncertain prescriptions’.

Now I tell my story at MND forums in the hope that other sufferers will learn from my mistake. Ultimately I know desperate people, like me, will try anything. I just wish the unscrupulous people offering these treatments could be stopped.

Nine Lives

2010-09-22T01:10:00.000-07:00

I’ve met a girl, he said

That was three years ago

I died inside

I’ve met a lady, he said

That was yesterday

I died again

I’m scared, he said

Follow your heart, I said

Hoping it will lead him back to me

Seven lives left

Diary

2010-09-14T13:33:00.000-07:00

I had my foot x-rayed this morning because it's been hurting me for a week. I thought it would go away but it feels worse today and is swollen. The x-ray didn't show anything, so I just have to wait. Coupled with neck pain, I feel quite fragile. I keep wondering how people live with pain? I think I'm about to become a single woman with a cat. The search is on for a kitten. I want a Devon Rex (see photo) but they are hard to find. I'll probably end up with a tabby! I'm looking forward to having an animal around again. Something new to observe is pretty exciting for me. I accepted an invitation to The Third Sector Excellence Awards. I'm going in my capacity of actress in Sarah's Story, because it's shortlisted for an award. Note to myself: buy a dress before a cat.

Diary

2010-09-12T08:27:00.000-07:00

I've decided that it may be useful to keep a diary. I'm not sure who it will be useful to, perhaps only me? I might end up with thousands of readers, like Dr Mark Cato. I must contact him to ask how he did that. I woke up this morning really wanting to visit Highgate Cemetery . I'm reading 'Her Fearful Symmetry' by Audrey Niffenegger, which has made me curious about the cemetery. It's almost on my doorstep, yet I never knew much about it. I think it could be difficult to negotiate in a wheelchair though. I know I'd want to take photos too, which is impossible, due to my wimpy hands. I keep seeing stuff that I want to photograph recently. I know that I'll probably never see the cemetery and I think it would make me feel a bit ghoulish anyway. I went to Sainsburys supermarket instead. There's a pet shop near Sainsburys and I toyed with the idea of buying a kitten. I want a little companion to sit on my lap and make me feel that I'm the most important thing in it's life. Being realistic, it will more than likely hate my lap and I'll get irritated by cat hair everywhere. Things to do this week: sort out my neck pain and stop obsessing about my 'ex-bf' (although I never called him my boyfriend at the time). Over and out.

Trapped

2010-09-02T09:45:00.000-07:00

They said that my body would stop working
I thought they were lying
I was just like everybody else
With a new life kicking in my belly
They had to be wrong

I was forced to believe
When I couldn’t turn a key
Or cut strawberries
I tried to hide the carpet burn on my face
It was happening

Walking stick, frame to wheelchair
Independent, strong, woman, to baby
Fear followed me like a new shadow
I screamed ‘help me’
But no one could

They said I wouldn’t see my kids grow up
I think I’ve broken the rules
Because it’s stopped and I’m trapped
But I can still express myself
Which is everything

Come Back to Me

2010-08-31T11:07:00.000-07:00

Kenwood

Come back to me
We can hang out together and laugh
How did we manage to find everything so funny?
I need to see long eyelashes and freckles
How can such beauty be hidden from my sight?
Come back to me
I miss you

Come back to me
We can be happy again
Are rules and convention so important?
I can’t be complete without you
How can I dispel my loneliness and longing?
Come back to me
I miss you

Come back to me
We can go to our secret place
Where else can we feel comfortable and safe?
I can’t find a replacement you
Can you find another me?
Come back to me
I love you

My first and possibly last poem! Inspired by Maya Angelou and a very dear friend.

Songs of Life

2010-08-06T06:05:00.000-07:00

This is a little bit of my life in music. I like how Nick Hornby and Stephen King use song lyrics/music references in their books. I started reading Hornby's book, 31 Songs, but didn't finish it. There are too many books that I haven't finished. I remember thinking with 31 Songs that I'd like to hear what song the bloke is writing about. Herewith, I'll demonstrate the beauty of the blog. There won't be 31 songs, only 7, although there are hundreds that mean so much to me.

The first song that I have any recollection of is Puppet on a String by Sandie Shaw. She won the Eurovision Song Contest with it in 1967. Considering that I was only two, I'm surprised that I even remember it. I reckon that because she won Eurovision, it was probably played for years, so that could be why. I didn't understand what Sandie was singing about, but it had the word puppet and I was a kid, so I loved it.

In the 70's there were The Osmonds, David Cassidy, Marc Bolan and David Bowie. But the next artist to really get my attention was the weird and wonderous Kate Bush. I had read the book Wuthering Heights and loved the song from the minute I heard it. I wanted to be Kate and I bought her albums and listened to her music until a few years ago. I can't listen to her right now but I'm pretty sure that I will again.

The 80's and every decade since, belong to Springsteen. I also got into Dylan and still love old Bob. Thunder Road brings back a great memory of a holiday in Corfu with my friend Ruth. We had to hire a scooter to get to the beach and used to sing Thunder Road on the way there. I can still feel the baking sun on my back and we were so young and free. If I could time travel I'd go straight to that holiday and feel like that again. I'm sure Ruth would too.

Next is my wedding song, We've Only Just Begun. We had a male band, so this version was how it sounded, when my new husband and I took to the dance floor. This was everything I ever wanted and I had amazing dreams of a fabulous future. I couldn't have imagined what was to come, I thought we would grow old together. It was difficult for me to listen to this song for a long time and I still feel a twinge of pain.

Then came the shocker, a diagnosis of motor neurone disease, ALS, in April 2000. I used to say my prayers but no one was listening. I soon gave that up. The lyrics to this song say everything about how I felt at that time.

Well they shot you point blank
you been shot in the back
Baby point blank you been fooled this time
little girl that's a fact
Right between the eyes, baby, point blank
right between the pretty lies that they tell

Goodbye to Love is my song. My husband didn't love me enough and the man I loved after him, didn't either. I was a puppet on a string... now I understand that song!

And here's the song for when I leave this earth, which I don't think will happen imminantly. My MND seems to have stopped or slowed right down. I feel trapped and wonder how I will cope with endless years of disability. I'm here for my children but they are growing fast. Who will be here for me when they leave? At least I don't fear the reaper!

Solitaire's the Only Game in Town

2010-05-18T10:32:00.000-07:00

It's a long time since I've written or been inspired to write. I write emails, lots of them. 'Where's my shopping?' (Tesco) 'New antidepressant made my stomach hurt' (doctor) and 'I'm tired all the time' (anyone who will listen!)

I feel inspired today because of my late friend, Carla Zilbersmith. ALS/MND stole her away yesterday. She was beautiful and funny, right until the end. I know she wouldn't want anyone to cry for her but I did anyway.

So I was thinking how would Carla look at my life right now and make people laugh? Tomorrow I'm getting a riser/recliner chair for my lounge. I've always sat on the sofa; I wanted to have my children near me so resisted 'the chair of solitude' for years. I'm too uncomfortable to resist anymore. However, I've recently taken to playing the game Solitaire on my laptop. Strange thing is that my children and carers plonk themselves down next to me and tell me what cards to move! I scream inside 'it's called Solitaire for a reason', but no doubt will miss it.

I'm tired again... why is a blog for another day, if I have the guts to write it. I reckon short is better than nothing.

The Late, Great, Carla Zilbersmith! Carlamuses

Mashable Open Web Awards 2009

2009-11-07T12:33:00.000-08:00

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!

Whatever Happened to Guy Fawkes?

2009-11-05T10:07:00.000-08:00

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...

My Tips for Life

2009-10-15T10:01:00.000-07:00

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"

MND is....

2009-09-28T06:49:00.000-07:00

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!

How Some Health Professionals Continue to Fail UK MND Sufferers

2009-09-09T06:26:00.000-07:00

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.....

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

2009-08-30T13:30:00.000-07:00

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!

Daisy the Dog

2009-08-28T13:52:00.000-07:00

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!!!