Portrait no.10

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10 of 26 portraits for @26miles4mnd Sally Light, CEO of the motor neurone disease association. We photographed Sally Light in October 2016. She is the Chief Executive of the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland helping people affected by MND and the charity your donations to 26miles4mnd are supporting. “I didn’t have a connection to motor neurone disease when I started here but now I strongly feel I do have a personal connection because I’ve lost so many people that I’d come to care for. Most recently in the last twelve months we lost two trustees from the board which was very, very hard. But I’m optimistic. Last Thursday for instance, I went up to Nottingham and I presented a long service award to a volunteer who’d been with us for thirty years. So those things give you such a feeling of optimism about the ability that the community has to all get behind the cause and really make a difference. I think one of the really important parts of the Association is the massive contribution that’s made by volunteers. We have these eighty-eight branches and groups right across England, Wales and Northern Ireland and they provide fantastic local support to people. They really are the heart of the Association and we couldn’t do a proportion of what we do without them.” ___________________________________________ To help support the work of the motor neurone disease, you can donate here: https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease

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Portrait no.9

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9 of 26 Hilary Rowberry Hilary Rowberry was living with a slowly developing ALS variant of MND and working as a branch MND Association volunteer when we interviewed her in October 2015. She sadly died after a stroke on June 9th 2017. She told us she had not heard of motor neurone disease before she was diagnosed and felt that she should have done because she worked as a nurse for forty years. She was amazed at how varied the symptoms of MND can be. “I just say that the brains not connected with the muscles and the muscles have become weak in my legs – in my case in my legs – but that’s me. There was another lady near here who’s one arm went completely and there are people who look perfectly well up and about but they have no voice. I find this quite staggering – the different ways it affects people. I’ve been to a couple of the big MND Association meetings and you meet all sorts of different people with MND. Some are quite obvious as they’re in neurological wheelchairs and others are walking around looking like normal and then you notice they have a device that helps them communicate with you because MND has taken away their voice.” https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease

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Portrait no.8

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8 of 26. Michael Wenham. Michael Wenham worked as an English teacher before training as a vicar. For many years he was the vicar of three village churches in Oxfordshire before MND caused him to retire. He’s been living with the primary lateral sclerosis form of motor neurone disease for more than eighteen years. A journal written throughout his illness has been turned into a book called “My Donkey Body”. It tracks the despair he’s felt at times as his body gives up, and the darkness that descends as his mind feels trapped. “I didn’t want to preach, nor give false comfort. I just wanted to say this is a bit what it’s like. It’s pretty awful. But it’s not all darkness. I feel grateful, apprehensive and occasionally very tired! The worst thing about living with PLS is the frustration and its prolonged nature. The good thing is being forced off the treadmill of activity. My consultant is right – There are pluses and minuses about living with PLS as opposed to ALS – It's a long haul living with PLS.” www.justgiving.com/fundraising/26miles4mnd #mnd #pls #als #PrimaryLateralSclerosis #running #TallinnMarathon

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Portrait no.7

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7 of 26. Molly Freeman Molly Freeman helped create a puppet show called CELL billed as “one puppet’s final journey”. Nominated for a Peter Brook award, it’s about a man diagnosed with MND and his journey to experience life more fully after the diagnosis. Both her and the co-artistic director Will Aubrey Jones had grandfather’s who died from MND. “It wasn’t actually until we started making CELL that I found out my grandad had died from motor neurone disease. I’d come back from a rehearsal and I was talking to my mum on the phone and said ‘Oh we’re looking into motor neurone disease and exploring that with the puppet’. My mum said ‘oh you do know that’s what grandad had?’ Grandad died about fifteen years ago. MND awareness was low and he wasn’t diagnosed until after he died and had a biopsy. So at the point where he became really unwell it was very confusing for everyone…. There was one chap who came to see the show three or four times and he’d recently lost his wife to motor neurone disease and he said it was a source of comfort to him. He found comfort in being in an audience that was full of people who were laughing and enjoying a show about the subject!”

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Portrait no.6

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6 of 26 Amber Michelle and Emma. . When Miles interviewed Amber Michelle and Emma in 2016 they were PHD students at University College London. Both run Movement for Hope. Amber was its creator. It is an organisation that combines neuroscience and art to create artistic performance events and exhibitions that raise awareness of neurological conditions. The events involve patients, researchers and artists collaborating and performing together. It’s quite possible there is no other organisation like it in the world. Amber Michelle Hill – “I started Movement for Hope mainly because I was doing pre-clinical work from the research side and I felt like I didn’t have a connection with people who were suffering from the conditions that I was studying. I just thought there needed to be a bridge. For me it was to know why I was working in that lab. To keep going. To keep my motivation going. I contacted Sarah Ezekiel who lives with motor neurone disease and said ‘can I come and interview you to know a bit more about your experience and living with this condition’? We interviewed four other people with other neurological conditions and from the interviews created ‘Seize The Day’ one of our dance events". Emma Biondetti – “I decided to join Movement for Hope after I was in the audience of Rewired, a Movement for Hope awareness raising event that involved researchers and artists and patients. It was really great to see this connection going on between patients telling their stories and researchers and artists. They were all trying to describe what neurological conditions are like but from different points of view and all together it worked so well that I decided I wanted to get involved.” www.movementforhope.org #mnd #als #running #TallinMarathon www.justgiving.com/fundraising/26miles4mnd

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Portrait no.5

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5 of 26. Professor Martin Turner. Professor Martin Turner is a consultant neurologist based at Oxford University and is researching MND Biomarkers for use in drug trials. We interviewed him in September 2015. "The closest thing is Sherlock Holmes – when all the letters are dropping down in front of his vision and he’s assimilating masses of information just by looking at someone – that’s exactly what most neurologists do. We can assimilate huge amounts of information just watching someone get up from a chair, come into the room, how they introduce themselves. And that’s one of the massive draws of neurology because then you listen to the story. As a consultant 95% of the time, by the time you’ve heard the story you know the diagnosis. Then you examine the patient to confirm your thoughts and that examination in many ways certainly in MND is far more important than any test. In my research the buzz word is BIOMARKER – a biological marker of the disease activity. I’m looking for markers at the system level and that’s using very, very high resolution scans of the brain which both look at the structure of the brain and the individual nerve tracts and how they function – the individual nerve impulses that are being fired between these tracts – and looking at how that changes over time. If I can measure damage to tracts and show that they’re not getting worse or perhaps something that the nerve cells are releasing into the spinal fluid or the blood and we have some of these markers to measure and we can show that these levels have changed, we know that that drug (or we think) it might be working. I’ve never been more optimistic about better treatments for MND ever in my career. There’s more going on now than there ever has been. When I first started fifteen years ago it seemed intractable and now it seems absolutely practical, it’s just a question of when and not if." #mnd #ALS #running #tallinnmarathon www.justgiving.com/fundraising/26miles4mnd

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Portrait no.4

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4 of 26 Ian Pratt. In 2012 at the age of 42, UK based Australian Ian Pratt was diagnosed with the ALS variant of motor neurone disease. “I used to have really severe muscle cramps and twitches for no reason. I’d be sitting there in the lounge, my wife Catherine would be lying on my arm and she’d say ‘oh your arms twitching’. So that’s how it started. I insisted on a copy of my referral letter and in it they queried whether it might be motor neurone disease. I had no idea what motor neurone disease was. I did a Google search and that was when I found out about MND. When I read that my heart really sank, but you know unfortunately everything fitted. It’s the only diagnosis that comes with this apology: ‘I’m sorry to tell you that you have motor neurone disease and there’s bugger all I can do to help you'. But I’ve always been a glass half full kind of guy. Yes it’s sad that I wont be here to enjoy lots of things but it's not a definite for me any more because there is lots of hope out there and my hope is that they’ll find a cure for this thing in my lifetime." . www.justgiving.com/fundraising/26miles4mnd #mnd #running #mnda #tallinnmarathon

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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 – Any donation large or small is greatly appreciated.

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 🙂

“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)

 

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 🙂

The “South African David Beckham” with motor neurone disease.

Last Friday I took my dad, who’s a big rugby fan, to Telford because I’d heard on the MND grapevine that there was going to be a screening of “Glory Game” – the documentary that tells the story of South African Rugby legend Joost van der Westhuizen and his battle with motor neurone disease.

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In South Africa, Westhuizen is treated like a rugby playing David Beckham. I couldn’t help imagining how much quicker we’d find treatments and a cure for MND if, God forbid, David Beckham developed MND.

Joost van der Westhuizen was at the screening because the film is touring the UK during the Rugby World Cup. There’s a quote of his that stood out as being typical of the spirit of MND Warriors everywhere –

“They said I would be in a wheelchair after a year. They said I had a 20% chance to live two years. And I decided ‘stuff them’. I will decide when I go.”

He’s lived more than 4 years since being given that doom laden prognosis.

It was a great evening, a chance to meet up with some of the friends we’ve made during the 26 Miles 4 MND campaign so far and to meet more inspiring people who we hope to include in our 26 portraits.

These are some snaps from the night. (Click on the pictures to see them in a light-box).

Joost van der Westhuizen played as a scrum half for the South African rugby union team. He represented South Africa in 89 test matches, scoring 38 tries, and was a member of the victorious South African rugby team at the 1995 world cup. He’s patron of a South African motor neurone disease charity called the J9 foundation (scrum half normally wears a number 9 shirt).

If you’d like to help find treatments and a cure for motor neurone disease, click here for the “26 Miles” Just Giving page. Any amount, however large or small, will be greatly appreciated. 

Or donate via your mobile phone! – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070

The money we raise will go to the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.

Thank you very much 🙂

A meeting of the MND lottery winners club

Today I was at a meeting of the MND lottery winners club – but nobody was celebrating.

That’s because the patient delegates at the first ever UK PLS Day used up their share of luck developing the rarest type of motor neurone disease – PLS, and not in winning life changing amounts of money.

Developing Primary Lateral Sclerosis is very life changing though. In extreme cases, it can leave people virtually paralysed and unable to do the most basic things for themselves. It can be considered a benign form of MND as it’s almost unheard of for patients to die because of it. However, for carers it could be seen as a life sentence….a sweet but sour mix of still having your loved one with you, but in a diminished and increasingly helpless form.

Still, we are the lucky ones, and here we were. For some it was an emotional opportunity to meet others living with the same condition. I remember when Neicey Mann let me into her home when I visited with Cristian to take her portrait, I was nearly brought to tears because I recognised in her the same struggles and difficulties that I had. Until then it had felt like the loneliest illness on earth.

Members of our Facebook PLS support group with Neicey at the front.

We are very lucky to live in the age of the internet so that those of us with rare conditions can find others to talk to. Neicey set up a Facebook group just for PLS patients and their carers and it now has 413 members worldwide! That’s more than on any medical database and Neicey has been told that she probably knows more than any neurologists about the day-to-day symptoms we all share – She might one day even write a paper about us!

It was great to meet up with some of the people who we have photographed and interviewed for the 26 Miles 4 MND fundraising project again. Here are some more pictures of what was an interesting and informative day organised by the Oxford MND Centre and the Motor Neurone Disease Association…and actually, there was even a little bit of celebrating going on!

Professor Martin Turner (who we have photographed for 26 Miles 4 MND) and Professor Olaf Ansorge.

Michael Wenham and his wife Jane

Dr Mary-Kay Floeter talking, a world expert on PLS, who had come all the way from Washington in the US

We have to thank the Motor Neurone Disease Association for providing a lot of the funding for days like the one we enjoyed today.

Motor Neurone Disease is not as rare as you might think: In 2012, 1 out of every 232 people who died in England had motor neurone disease.

If you’d like to help find treatments and a future cure for all the types of motor neurone disease, click here for the “26 Miles” Just Giving page. Any amount, however large or small, will be greatly appreciated. 

Or donate via your mobile phone! – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070

Thank you 🙂

A big day for the small guy of MND diseases

Big day tomorrow – The first ever UK PLS Day is being held in Oxford!

Click here for info.

– Primary Lateral Sclerosis is one of the rarer forms of motor neurone disease.

It’s a big event for those of us who have been told we have PLS. Most of us find health professionals have to look it up on the internet because they’ve never heard of it so any publicity is good publicity as they say!

For more info (very little more unfortunately) about this little understood form of MND click here!

The Fighter

Since Cristian and I began this fundraising project, we’ve been astounded at the positive attitudes and happiness of everyone we’ve met.

I wasn’t really expecting another such uplifting experience from our meeting with ex-amateur boxer Richard Jones because of his gruelling history with motor neurone disease: He developed a genetic variant of the illness 3 years after his twin brother died from MND.

As if that wasn’t enough his wife, after watching her brother-in-law wasting away to death, couldn’t bear to watch her husband do the same. She decided to leave Richard and he was left to fight his own corner. His consultant told him he had between 3 and 5 years to live.

Jump ahead 11 years and Richard is still very much alive!

Richard Jones

“When I got to 5 years, I thought that was it. I was waiting for something to happen but nothing did – laughs – I celebrated with a few pints!”

Although he uses an electric wheelchair to get around, has lost some of his speech and lives in a supported housing complex, he comes across as a happy man and is very philosophical about MND.

We were invited into the shared lounge in the building where he lives and while Cristian set up his Hasselblad I interviewed Richard. He was obviously a man with some inner steel, but I sensed kindness in his eyes, and real happiness. It’s a character combination that keeps recurring – every time we meet someone affected by MND.

“I used to do martial arts, my dad was a champion boxer in the army, my dad and my uncle were boxing champions in Worcester. I played rugby, cricket and cycled.”

When he was told that his twin brother had motor neurone disease 17 years ago, he had to go to the doctors to ask what it was. No one around him knew anything about it and he collected leaflets to help educate his friends and his brother. The more he found out, the more he thought “that can’t happen to Andy, my brother”.

Richard and his ex-wife nursed Andy through the illness –

“I used to feed him, bath him, wash him, take him to the toilet – all of which I loved. He was the funniest person you could meet. I was the one that could look after myself. Andy was funny.”

Cruelly, MND developed in Richard 3 years after Andy’s death. The first symptom he noticed was difficulty walking during his job at Worcester Porcelain. As Richard talked to me he kept chuckling as he remembered that he was still alive and the doctors gloomy prognosis had been wrong. His advice to anyone who is diagnosed with motor neurone disease?

“Enjoy life as much as you can, and if you’ve got a twin like I did, stay close because your twin will always stand by you. Live life to the full!”

Richard Jones

Richard Jones

Richard Jones

Richard Jones

Richard Jones

If you’d like to help people with MND like Richard, you can donate to the MND Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.

Donate via your mobile phone! – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

OR

Click here for the “26 Miles” Just Giving page. Any amount, however large or small, will be greatly appreciated. 

Thankyou 🙂

Getting quite excited now…you could say Wilde even…

Tomorrow we will be photographing Kim Wilde and her husband the actor Hal Fowler for 2 more of our 26 Miles celebrity portraits. Can’t wait to see her and my old mate Hal again.

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Kim Wilde singing Kids In America in 1981

http://www.kimwilde.com/

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

Stories and photos will be on here soon 🙂

The Australian fighting spirit

We came away from Pride of Britain “Fundraiser of the Year” Paula Maguire feeling drenched in positivity and I didn’t think we’d find anybody as positive again during the rest of the 26 Miles 4 MND project, but there must be something in the Wakefield water as 15 minutes later we met Ian Pratt.

He’s heavily disabled by motor neurone disease – now having to use a neurological electric wheelchair and he’s lost a lot of his speech. Despite that, he does a good job of coming across as a happy person.

Ian PrattIan waiting to have his “26 Miles” portrait taken

Appropriately enough, as I write this, Australia has recently thrashed England in the Rugby World Cup. Ian was born “down under” and he has that down to earth “make the most of life” Aussie spirit that was in abundance on the rugby field. When we visited, his mum was over here on holiday and the sun shone on us and the Maguires as we set up our kit in his beautiful garden. It was all so pleasant and Ian’s such a nice guy that I had to keep reminding myself of just how ill he is.

Because we’ve been meeting so many positive people, Cristian and I were beginning to worry that 26 Miles 4 MND wouldn’t get across the seriousness of motor neurone disease properly. People with MND tend to show an awful lot of character – which is “awfully” ironic because it might lead to people thinking “oh it’s not so bad after all”. That would be terrible. Here are three sobering facts – 5 people a day die of MND in the UK and in 2012, 1 out of every 232 people who died in England had MND. Many people with MND are trapped within a body that won’t move and are totally reliant on the help of others.

More than one person has remarked to me that motor neurone disease is more cruel than cancer because, unlike most cancers, a diagnosis of motor neurone disease comes with absolutely no hope and still no effective treatment.

021015_172Ian was diagnosed with motor neurone disease at the age of just 42 after undergoing tests on his daughter’s second birthday. For a reality check, compare a picture of him on his wedding day 5 years ago with how he is today.

“I’m sure it’s the only diagnosis that comes with an apology – I’m sorry to tell you, you’ve got motor neurone disease and there’s bugger all I can do to help you.”

On the day we visited, he had spent the morning chasing up repairs to his brand new electric wheelchair and was stuck in an old manual one, unable to do anything for himself. Remarkably he was still smiling despite the fact that, as he told me with his soft Australian accent, he was having a “shit day”.

Whilst we were setting up, the repaired wheelchair arrived. I asked Ian if I could photograph him being moved into it to show just what motor neurone disease does to a person. Within three years he’s basically become a rag doll. He has to be fed and as he said himself, ” I can’t even wipe my own bum”.

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“I’ve always been a half full kind of guy. I know I’m probably going to die from it so I do everything I can to enjoy the time I have with my daughter and my wife.”

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When we visited Ian, his daughter had just lost her first tooth. He’s never going to give up his fight and is hopeful that treatments and a possible cure might be found during his lifetime. As he said –

“I can’t give up because it would piss me off to think that if I give up today, tomorrow they may find a cure.”

021015_301-EditMyself, Ian and his mum

Cristian’s 26 Miles 4 MND portrait of Ian will be published as one of the 26 portraits during 26 days leading up to Cristian’s marathon fundraising run. If you’d like to donate to help find a cure for Ian and other’s like him, click here for our Just Giving page.

(click on any image below to enter a gallery of shots taken during Ian’s photo shoot)

Meeting a warm hearted Ice Queen

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Cristian getting a bit too excited at the thought of Paula and I having icy water thrown over us (he stayed behind the camera!).

I suppose if you visit the home of newly crowned Pride of Britain “Fundraiser of The Year” Paula Maguire, Ice has to make an appearance at some point.

Paula was the lady that spotted the fund-raising potential of humans throwing buckets of icy water over each other.

She started the UK version of the phenomenon called the Ice Bucket Challenge, to raise much-needed money for the Motor Neurone Disease Association.

Starting with a humble target of five hundred pounds, by yesterday afternoon the total on her Just Giving page stood at four million, fourteen thousand, two hundred and seventy-nine pounds!

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Paula began raising money for the MND Association in 2009 after her uncle Stuart died just nine weeks after being diagnosed with motor neurone disease. Her initial aim was mainly to raise awareness because, before her uncle’s death, most of her friends and family had not even heard of the illness.

Since then she’s run every Great North Run, two Great Yorkshire Runs, a Great South Run, the Leeds Half marathon, Tough Mudders, the London Marathon, abseiled down a viaduct and jumped in the sea on Boxing Day amongst many other challenges.

But the thing that really caught the great British public’s attention, was the video she posted of herself having a bucket of iced water thrown over her. It immediately went viral, and began the Ice Bucket Challenge craze that swept the UK and raised unprecedented amounts of money for the Motor Neurone Disease Association – half of their annual income for the year!

In her uniquely selfless style, after Paula received the award, she’s quoted as having said “You only have to meet someone with motor neurone disease to see how devastating it is. I just hope Pride Of Britain will boost that awareness. I don’t do this for me, I don’t do this for awards, I do it to help all those people who are living with motor neurone disease. This award is for all of them and for those not here anymore”.

Cristian and I visited Paula and her husband Robert to photograph them as one of our 26 Miles 4 MND portraits. You’ll be able to see Cristian’s ice sharp portrait during the 26 days leading up to his marathon attempt in November / December this year. Until then, here are some more snaps taken by myself and Robert of us setting up for what was to become Paula’s TENTH Ice Bucket Challenge!

If you’d like to help the great work of the Motor Neurone Disease Association, click HERE for the “26 Miles” Just Giving Page…. We’re aiming at raising two thousand six hundred pounds. That’s a bit more ambitious than Paula’s initial five hundred pound target – Watch this space!

(click on any picture to enter the gallery)