Cristian and I have taken another 6 portraits which gets us very close to the final 26!
When we started the project Sarah Ezekiel (who you’ll remember from my last post) suggested we had to include actress Gina Bellman in our 26 Miles portraits. Gina became a household name in 1989 for her performance as the title role in Dennis Potter’s drama “Blackeyes”. She’s also well-known as Jane in the sitcom “Coupling” and for acting alongside James Nesbitt in the BBC drama Jekyll. Over in the States she has a huge fan following from her role as Sophie Devereaux on the TNT television series Leverage.
Gina’s mother has the rare primary lateral sclerosis variant of MND that I’ve been diagnosed with.
In a weird way getting Primary Lateral sclerosis (PLS) is equivalent to winning the MND lottery because it’s the rarest of the 4 or 5 different subtypes. The disease usually develops very slowly and is unlikely to cause us to die. PLS can develop into ALS but most patients lead long (but increasingly disabled) lives.
I’ve heard it said that some in the “MND community” say the lucky MND patients are the ones who go early. I really disagree and think that every person we have met in the 14 months doing this project would too.
Yes it’s rubbish being ill – Attempting to do the simplest of tasks now leaves me worn out for the rest of the day, I find it increasingly difficult to walk and have to use a scooter to get around. It makes me depressed if I let it BUT the damaged motor neurones causing my body to “not work” are not me! I’m still as stubborn and determined as I was 10 years ago. In fact I’m probably more so since developing MND.
Gina says something similar about her mum:
“In a way the MND makes her even more determined to be independent than if she was a perfectly healthy 81-year-old. None of us expected her to keep going like a Duracell battery…other people in my mum’s friend group have died of age related diseases but mum’s still going strong, being stubborn, being independent.”
A couple of months ago I was asked to write a contribution for a book from the point of view of somebody with motor neurone disease. The Academy of Medical Royal Colleges were celebrating their 20th anniversary with a publication called 20 / 20 that looked at the past and future twenty years of healthcare.
I really appreciate the MND Association for passing my details onto the book’s creators. It’s given us another opportunity to create publicity about motor neurone disease – an illness that can seem like a taboo subject in non MND circles.
Expecting a tiny photo and a short paragraph I was bowled over to see that I’d been given a double page spread near the front of the book. It’s wonderful that my contribution will be read by a lot of health professionals who might not otherwise think about MND.
The launch was at the House of Lords on the hottest day of the summer so far. Here I am braving the sun before ducking back inside for another canapé.
Chris Van Tulleken (of twin brother TV doctors fame) was at the reception and I got to chat with him about MND. He admitted that, like most doctors, he actually had very little knowledge about it. That’s not surprising when you consider on average a GP will refer only one or two patients with suspected MND to a neurologist in their whole career.
He seemed like a great guy and was genuinely interested. Wouldn’t it be fantastic if we could feature MND in one of his TV items? – I’m going to email the MND Association VIP department and ask them to make contact.
I also found a new portrait subject for the 26 Miles 4 MND project – The Academy’s publications manager Rosie Carlow whose father sadly died of ALS.
You know, I am no longer amazed that virtually everyone I speak to knows someone who has been affected by MND. It is definitely not the rare condition we’ve always been told it is.
26 Miles 4 MND – Near the finishing line!
Cristian and I expect to have all the photos finished before the end of the year and we now hope to exhibit them at an Academy of Medical Royal Colleges venue too…..all exciting stuff.
I also have a backlog of blog posts from behind the scenes of our photo shoots arriving here very soon. Keep watching this space.
It’s a photographic marathon but we are reaching the home stretch!
Don’t forget, the money we’re raising is helping the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
Nearly a thousand pounds has already gone to the MND Association. If you’d like to help us achieve our goal of £2,600 here is the link to our donation page or you can donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070
Just before Easter I spent the weekend with an old friend of mine who’s supporting the 26 Miles 4 MND project. He happens to be a successful actor these days, and the husband of Kim Wilde.
Here’s a picture of Hal and I relaxing in the jacuzzi that’s in their back yard –
Hal Fowler was my best mate during our teenage school years. At the time our lives felt very creative, quite chaotic and we enjoyed breaking the rules. In truth though it was all fairly innocent and we never actually went too far: We ended up in hospital just once due to too much “high spirits” and although we had a few encounters with the police, we were never actually arrested!
The best months were the ones we had off school to revise for our “O” and “A” levels. Not much revision got done – They were sunny summers and we spent most of the time getting pissed, pushing boundaries and pulling girls. Needless to say Hal and I both ended up “qualification challenged”, though in our individual ways that hasn’t held either of us back in life.
To be honest it was mostly Hal who did the pulling girls. He seemed to have the knack. It was a knack that continued after school, through his time at drama college and then onto the West End stage. Whilst acting in The Who’s musical Tommy, Hal “pulled” Kim Wilde. At that precise moment his pulling career ended. They fell in love and the rest, as they say, is history.
Apart from going to each others weddings, there was little contact between Hal and I in 27 years. Then I sent Hal a text about the “26 Miles” project raising money for the MND Association and he agreed to get involved. It’s resurrected our friendship which happily these days is a bit less hedonistic.
Hal regularly appears on stage, TV and the big screen. He’s acted in West End musicals and is currently playing Cheshire Cat in wonder.land at the National Theatre.
Years before Hal’s professional performing career we’d perform together in our home city of Oxford – busking – I’d sing and play guitar, Hal would sing and accompany on his double bass. We were good at it too! We’d get there and back in a battered Citroen 2 CV with the neck of Hal’s bass sticking through the open sun roof. All of the money was spent in the pub later. Fun times!
There are no pictures of us in that 2 CV, but here are some behind the scenes shots from the morning Cristian and I spent at Hal and Kim’s taking their 26 Miles portraits. We resurrected our busking duo for the day – I think you can see that we still have “it”… whatever “it” is….
(Click on the first picture to enter the gallery)
Cristian and I are having fun on our “26 Miles” journey and we hope you enjoy following us on this blog, but the reason we are doing it is deadly serious. We are trying to raise £2,600.00, or more, for the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
MND is a terrifyingly cruel disease that can leave people locked in a failing body, unable to move, talk, swallow and eventually breathe. It kills a third of people within a year and more than half within two years of diagnosis.
We’ve been sent a message by a follower of our twentysixmiles blog. He said why do “you keep me hanging on” Miles? What happened to the portrait shoot with Kim Wilde?
The shoot was in October and it’s true, we’ve not published a post about it yet. The sad fact is that a few days after the photography Miles’s wife told him she wanted them to separate. Sadly the stress of living with MND has (at least in part) made Miles’s marriage another victim of this wretched disease.
This is why we’ve got behind with our marathon photo project, but like all true charity marathon runners we will get to the finish – and we’re “Another Step Closer” to the finishing line with this post because… just for you Terry Brown (and all the many other Kim Wilde fans out there), here are some “behind the scenes” photos from our portrait shoot with Kim taken at her beautiful house in Hertfordshire last October. (Click on the first image to enter the gallery).
Half a million Kids in America
“Good girl!” (the dog that is)
I never thought I’d ever get to play guitar with a pop legend!
Getting the gear ready
“Let me show you how it’s done Miles”
Cristian does work hard
THAT famous tune that went gold
The day was in danger of turning into a pet photo shoot
Kim gives Miles the respect he deserves
Cristian setting up in Kim Wilde’s beautiful house
“just move your bum to your left a bit”
The main portrait of Kim and Miles will be published on 26Miles4MND once we’ve confirmed the date of Cristian’s marathon run.
A person’s lifetime risk of developing MND is up to 1 in 400. That’s one person in an average size cinema screen.
Motor neurone disease kills a third of people within a year and more than half within two years of diagnosis.
MND can leave people locked in a failing body, unable to move, talk, swallow and eventually breathe.
So it’s a deadly serious thing. If you’d like to help us raise money for the Motor Neurone Disease Association, click here to go to our Just Giving site or you can donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070
Any amount of money helps and will be greatly appreciated by everybody who has to live with this awful, cruel disease.
After that we’ll be interviewing and photographing Sarah Ezekiel for another of our 26 MND portraits. We are slowly but surely getting closer to our target (and nearer to Cristian having to run 26 miles – the poor git!).
Here’s a link to Sarah’s website. She creates amzing art using Eye Gaze technology. Well worth a look if you are already thinking about Christmas – http://sarahezekiel.com/#/eyegaze-art/4562566580