A 26 Miles road trip…

…actually a lot more than twenty-six

The challenge of 26 Miles 4 MND is for Cristian Barnett and myself to collect the stories of twenty-six people connected by the condition called motor neurone disease – from eminent professors to people living with MND and many interesting and often surprising people in-between. There will be twenty six stories, twenty six photographs and a lot more as well.

A few days ago Cristian and I travelled nearly a thousand miles in three days to get four more stories for the collection. It’s left me very tired and I should be resting but I’m aching (literally!) to get this blog post done because we again met some really inspirational people.

In Edinburgh we photographed Euan MacDonald and Professor Siddharthan Chandran of the Euan MacDonald MND centre.

 

The day before, we visited SITraN in Sheffield and met Dame Professor Pamela Shaw and children’s author Suzanne Maguire who are also supporting 26 Miles 4 MND. All of these people in their own ways are doing their bit to try to rid the world of motor neurone disease.

SITran and the Aubergine van.

The amazing “Mr B” did all the driving and miraculously fitted in two training runs in preparation for his marathon in September. That twenty-six mile run will be the culmination of the fundraising part of the project! – please donate here!!!!

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Driving home we were treated to some beautiful scenery –

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A marathon project

26 Miles was meant to take six months but three years on, after a lot of hard work and mileage, it’s only just nearing the finishing line. Many wonderful, talented and often extremely busy people have given us their time to take part. We thank them all.

A “26 Miles” book?

There’s work to do yet, and I wish we could include even more people but we’re hitting against that magic number 26 now. I’m currently transcribing and editing down the interviews, Cristian will be processing the main photos. A talented designer has offered her services and excitingly it looks like the project will become a book.

We want to make the book an approachable, entertaining resource for people touched by MND and also a tool to raise awareness amongst the general public. It will also include interviews and photos of the celebrities who have supported us – including Kim Wilde!

Money raised from “26 Miles”, which includes sponsorship for Cristian’s marathon run and any money made from the book, will go to the MND Association.

We have a Just Giving Page and donations can be made by mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Please help us to end one of the cruellest diseases known by donating and sharing the word about our 26 Miles 4 MND project.

Next year will be the 40th anniversary of the MND Association. Let’s see if that can be the year when we have a big breakthrough for a treatment!

Some facts:

There is still no cure for MND and no effective treatment. As things are right now, it is arguably the cruellest of all diseases: All forms of MND lead to increasing paralysis taking away a persons independence and more often than not taking away their voice. It kills most sufferers within 2 years of diagnosis yet at any one time there are 5,000 people in the UK with MND – so it’s not rare! There is up to a 1 in 300 lifetime risk of developing MND. It affects over 400,000 of the world’s population and kills over 100,000 every year.

So please spread the word and if you can donate here. Thank you 🙂

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“keep on going like a Duracell battery”

Actress Gina Bellman whose mum has MND

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.

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Gina’s mum on a recent family outing

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.”

Please click to go to our Just Giving page or text to donate so that the MND Association can help more of us stubborn MND patients remain independent. Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070.

There will be more about Gina and her mum when we publish the portrait Cristian took of us in her lovely Kensington garden. That will be during the 26 days leading up to Cristian’s marathon run.

For the time being here are some snaps “behind the scenes” of the shoot.

(Click on the first photo to view in a lightbox)

 

Sarah’s story

The 26 Miles photography fundraising project is drawing to its conclusion – a conclusion when poor old Cristian will have to run 26 miles!

There are people that we’ve photographed and interviewed who have not yet featured in this blog. One of them is legendary MND warrior Sarah Ezekiel. She’s perhaps the most inspirational person I’ve ever met – and that’s saying something because literally everyone we’ve met on the 26 Miles 4 MND journey has been inspiring in their positivity.

One of the reasons I haven’t blogged about our photo shoot at Sarah’s is that I wanted to avoid defining her by her illness. She was diagnosed with motor neurone disease in 2000 at the age of 34 but Sarah is so much more than the MND that has ravaged her body and left her paralysed and unable to speak.

She studied art and art history and at first thought that developing MND meant she would never paint again but Tobii eyegaze technology has changed that and she now paints with her eyes. Her pictures have been exhibited all over the UK and as far afield as Qatar.

Click here to see her amazing art.

This is a photo of Sarah and I just before her 26 Miles 4 MND photo was taken last year –

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Sarah and I chat before the 26 Miles 4 MND photo is taken a whole year ago!

A few months ago Sarah invited me to exhibit some of the street photography I take from my mobility scooter at a London exhibition she was helping to organise for the neurological charity Movement for Hope. She has a fun sense of humour and at the private view people became very excited because of a rumour that Russell Brand was going to visit.

I was sitting next to Sarah chatting when all this fuss was going on. I won’t repeat what she said about Russell Brand by privately typing with her eyes on her “Eye Gaze” assistive screen. Let’s just say it was quite rude but very funny!

Here are some pictures from the evening and of that famous surprise guest.

Cristian and I are attempting to shoot the last of our 26 photos in the next few weeks.

I hope we make it because Cristian has been accepted to run in a very special marathon. More on that soon.

On each of the 26 days leading up to his marathon we’ll be publishing one of our 26 Miles 4 MND portraits. Click here and support us by donating to help us reach our target of £2,600 for the Motor Neurone Disease Association.

 

Putting the MND message out there

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.

Miles in book

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.

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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.

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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.

If you want a reminder of what we are all about, click HERE.

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 

 

A resurrected friendship

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 –

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“Cheers”

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.

picking up where we left off

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.

Click HERE for the background to our money raising campaign.

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.

If you’d like to help us achieve our goal 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 

Thanks so much for reading 🙂

Why do “You Keep Me Hanging On”?

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).

 

The main portrait of Kim and Miles will be published on 26Miles4MND once we’ve confirmed the date of Cristian’s marathon run.

Don’t forget, although we are having fun creating the 26Miles4MND project, and we hope you are having fun following the journey, it’s all about raising money for the only national charity in England, Wales and Northern Ireland for people with motor neurone disease.

  • 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.

Thank you.

“The brain is plastic…..”

If this 26Miles4MND marathon fundraising project was a real, human entrant in the London marathon, it would be in a pantomime horse outfit, dodging London traffic, only half finished two weeks after the race was officially over.

Sorry. I’ve got no excuse – I’ve just had a ton of stuff going on in my personal life and Cristian has been inundated with photographic work.

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Climbing the wall….

So we seemed to have hit a wall of the sort marathon runners (apparently) experience, but we’re teetering at the summit and are about to come down the other side. Recently we took another portrait and more are in the pipeline.

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A few days ago we interviewed and photographed the formidable Professor Karen Morrison (pictured above with Cristian). She is my neurology consultant and the person who diagnosed me as having a variant of motor neurone disease back in 2013.

The pictured “plastic brain” was used as a prop in her portrait. I’d definitely count her as one of the most intelligent people that I’ve ever met. She really is quite awe inspiring –

Professor Morrison trained at both Oxford and Cambridge universities, also trained in America and once spent time amongst Inuit people living in their traditional accommodation – again as part of the journey  to being one of the foremost experts on motor neurone disease in the UK.

….Whilst chatting to her and hearing the fascinating information about her life, I also found out that my joke about brains being “plastic in real life too”, is something she’s heard many, many times before. I think she actually shook her head in disbelief when I said it. Brains are plastic though – look it up if you don’t believe me 😉

Here are some photos of one great brain and some others doing what they do best – hanging around pointing cameras at people. There’s also a sneak preview of what the finished portrait could be like if you click on the pictures and look closely.

I’ll be writing more about Professor Morrison and why she chose to specialise in neurology and motor neurone disease in particular when we publish the 26 portraits in the month leading up to Cristian’s marathon.

  • In case you’d forgotten, or this is your first time here, 26Miles4MND is a marathon portrait photography project being undertaken by the editorial photographer Cristian Barnett and his close friend Miles Pilling (who happens to have a type of MND).
  • We are taking 26 portraits of people who’s lives are / have been affected by motor neurone disease. Cristian has persuaded me to be in each of the portraits alongside every subject. They are all being shot in a similar unique style.
  • Cristian will be running a marathon once all the portraits have been taken.
  • On each of 26 days leading up to the marathon, we will publish one of his photographic portraits and a brief piece of writing to accompany it.
  • So there will be 26 pictures of Miles alongside the individuals that we have persuaded to take part and Cristian will be running 26 miles. Hence: 26miles4mnd
  • We have also persuaded some household names with links to Miles in his former life at the BBC and beyond to be photographed. These portraits will be separate from the other 26 and will hopefully help to raise awareness in what we are trying to achieve. Keep in touch with the project at @26miles4mnd or https://www.facebook.com/26miles4MND or bookmark this website to see their photos when we publish them.

We’ve already raised just under a thousand pounds. Our target is two thousand six hundred. The money people have kindly donated so far has already gone to the Motor Neurone Disease Association.

Our hope is that during the 26 days leading up to Cristian’s heroic marathon attempt, people around the web and also in the real world will become interested, start talking and sharing about the project and the money will start to flow in. It would be absolutely fantastic to make more than our target figure.

If you’d like to help us achieve that, here is the link to our donation page again, or you can donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thanks for reading 🙂