Portrait no.18

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18 of 26 26Miles4MND is very happy to have the support of some household names. Today’s portrait is of the television presenter and journalist Nick Owen. Miles was lucky enough to work with Nick Owen for more than fifteen years while working as a cameraman and TV news director for the BBC in Birmingham. They first worked together at the BBC’s iconic Pebble Mill studios. Nick had worked there during it’s heydays: From 1992 he co-presented Good Morning with Anne and Nick, the breakfast TV show with an audience of more than 15 million viewers. Miles met Nick when he joined the BBC in 1998 just before his 30th birthday. He was one of the new breed of multi-skilled technical staff and worked as a news cameraman and picture editor as well as a live news director and vision mixer. After getting his MND diagnosis, Miles struggled in vain to continue working at the job he loved but in 2014 MND forced him to retire, leaving the BBC (and Nick Owen) behind. Nick is as friendly and supportive off screen as he appears on it. When we contacted him to ask if he’d be photographed for our 26Miles4MND project he agreed without hesitation. The photo was taken in the BBC Midlands Today studio at the Mailbox in Birmingham – the studio where Miles had the pleasure of directing Nick as he presented the news programme BBC Midlands Today. To help the work of the Motor Neurone Disease Association donate via our Just Giving page: https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Portrait no.17

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17 of 26 Modern computer technology has been a game changer for people with motor neurone disease. It enables those paralysed by the disease to continue to communicate and control their environment (turning on lights, closing curtains etc) and even to move around by using their eye movements and any other small bodily movement they may have left. Adam Waites is Head of Assessment for Smartbox Assistive Technology, a company that creates assistive technology solutions, helping people with disabilities to do things that everyone else takes for granted. We interviewed Adam in October 2016. “To control a computer with your eyes using “Eye Gaze” technology you have two infrared emitters either side of a computer screen and a camera underneath in the middle. Those infrared emitters create a glint in the surface of the eye. The camera is then able to see where you are “eye pointing” on the screen. So fundamentally your “Eye Gaze” then becomes a glorified mouse and you can control a computer just like using any other cursor. There was a niche in the market when Smartbox first started that no-one was really addressing which was to adapt a computer as a communication aid. Paul Hawes who founded Smartbox couldn’t understand why the assistive technology companies that were out there weren’t using computers. Those guys that made dedicated devices and were the only options ten years ago then missed the boat. We came in and took that market share and were seen as being forward thinking. We use “One size fits one” as our catchphrase when people ask “what’s the best thing?”. Our response often is “well that’s not an easy question to answer because it depends on you”. People’s communication aids are becoming more and more personalised – less generic and more about the user. So we’re seeing lots of interest in voice banking now. People who are losing their voice record and bank it and then have their own voice synthesised. There are also now a couple of teams around the world exploring Eye Gaze driving. There are some safety issues with that, but there has been some success!” . https://www.justgiving.com/fundraising/26miles4mnd

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Portrait no.16

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16 of 26. In February 2000 Sarah Ezekiel noticed some weakness in her left arm. Two months later she was given a diagnosis of ALS. Now she can only move her eyes and uses Tobii EyeGaze technology to communicate via her computer. The technology tracks her eye movements and reflects an infrared beam that acts as a cursor onto an adapted PC screen. She also uses it to create EyeGaze artwork that has been exhibited around the world. “I was thirty-four and pregnant with my second child and mentioned my symptoms at an antenatal appointment. When they referred me to a neurologist I was surprised. I thought that my symptoms were related to my pregnancy somehow. I didn’t know what motor neurone disease was. They told me to bring someone with me for my diagnosis. My husband came but he got fed up of waiting and left. So I was alone being told this most terrible news. But I’m glad now because I was able to take in the information undisturbed. I just remember thinking ‘how will I look after my children?’ My marriage collapsed as I became progressively disabled. I couldn't physically care for my children or myself anymore, and I spiralled into deep depression. But I pulled myself up from rock bottom and now see MND as a window of opportunity. I don’t think I would have done much with my life if I didn’t get ill. It hasn’t been easy and I still get low and have difficult times. But I’ve survived a long time and achieved more than I could have expected. I’m enjoying being an artist. I don’t think I would change anything if I could”. . To help support the work of the Motor Neurone Disease Association, please donate here: https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease #Tallinnmarathon

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Portrait no.15

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15 of 26. Actor Gina Bellman, interviewed and photographed in October 2016. Gina Bellman became a household name in 1989 for her performance in the title role of 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. In the US she has a huge fan following from her role as Sophie Devereaux on the TNT television series Leverage. Gina’s mother has the PLS variant of MND. “One of the first things I did was to get in touch with the Motor Neurone Disease Association and send off for the ‘Newly Diagnosed’ pack that they have . That was an amazing resource for me. I made a pack for each family member. We each had a little handbook about the diagnosis and what the symptoms would progress to. It was really useful to talk about depression and to read about how antidepressants could be a useful tool for people diagnosed with PLS. My mum had never been depressed, she’d always been a cheerful person. For her it went straight from the dragging foot to the uncontrollable laughing and crying – emotional lability. That was a really terrifying period. Helping to care or support someone with MND is not a burden, but a wonderful opportunity to relearn everything you thought you ever knew about the majesty of the human spirit. Although, I would do anything to turn back the clock or obliterate this disease, the fact is, my mum has it and we have to cope with it, and I am grateful for the opportunity it has given my family to look after and support one another and to learn from everything that MND chucks at us everyday.” . To help support the work of the Motor Neurone Disease Association, please donate here: https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Portrait no.14

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14 of 26 Matthew Hollis – Communication Aids Co-ordinator at the MND Association. Interviewed August 2015. Matthew wakes up each morning knowing he has a 50/50 chance of developing motor neurone disease. His family DNA carries a faulty genetic code that can cause the inherited form of the disease. “MND runs in my family – I lost my mum to it in 2011, my gran in 2002, my great gran in 1954. I haven’t traced it back any further than that yet so we don’t quite know when it started, but it seems to be running down the female side of my family. So the disease is obviously close to my heart. My job role is to help get communication aids to people with MND. The NHS has a requirement to provide them, but it doesn't happen in a timely manner. There are delays of 18 months in some areas. So we help health professionals deal with those problems and loan equipment to bridge the gap. It angers me to an extent but to be fair, the NHS is now moving in the right direction in terms of communication aids. Ultimately there’s a 50/50 chance that I could get MND myself, but to be honest I don’t really think about it. I looked after my mum for about three years and that puts a totally different perspective on life. If it happens it happens and I’ll be ready for it. Otherwise I try and enjoy myself, have nice holidays and just get out there with life.” ___________________________________________ To help support the work of the Motor Neurone Disease Association, you can donate here: www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease #Tallinnmarathon

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you.

Portrait no. 13

 

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13 of 26. Paula Maguire – champion fundraiser. Paula Maguire was crowned Fundraiser of the Year at the ITV Pride of Britain Awards in 2015 after personally raising four million twenty-seven thousand pounds and starting the ALS/MND Ice Bucket Challenge in the UK. “In June 2009 my uncle Stuart was diagnosed with motor neurone disease. At that time I’d heard of it but couldn’t have told you what it was and none of my family had even heard of it. Then only nine weeks later he died. At that point we were all still coming to terms with what MND was and what it would mean and how it would affect him. It was so very, very quick. The day after he died I decided that people needed to know what MND is because of how devastating it was and the fact it’s terminal and no one actually knew about it. I thought, money aside, we needed to raise awareness. People would ask how he died and you’d explain he had motor neurone disease and every time you had to got through the whole back story of what MND is. I used to watch my Auntie going through that and I thought to myself she shouldn’t have to explain all the time. People should just be aware of what it is. So I’ve now done 7 Great North Runs, 2 Great Yorkshire runs, a Great South Run, the Leeds half marathon. I’ve also jumped out of planes, abseiled down a viaduct in Derbyshire, done Tough Mudders, jumped in the sea on Boxing Day. There’s lots and lots I’ve done but there’s still lots I want to do as well to keep trying to raise awareness". ___________________________________________ Help find an effective treatment for MND by donating here: https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease

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Donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you.

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.3

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3 of 26. Neicey Mann ( @neiceymann ) lives lives in Birmingham and created a private Facebook group for people with the rarest type of motor neurone disease, primary lateral sclerosis (PLS). Miles joined the group soon after he was diagnosed with PLS in 2013. “I didn’t want a distant relative going on an open Facebook group and saying about me ‘oh what a shame she’s incontinent and can’t have sex anymore’. Not that that’s happened! I still have sex but I fall off a lot now. Ha, ha! PLS causes us to fall over. I was a singer in a band. I fell off a stage when I was singing – right off the front – and told them that I had drunk too much to sound really rock and roll. But what a lie! I hadn’t had a drink all day – It was the PLS! The most upsetting thing about having MND is that I can’t wear high heeled shoes anymore. A couple of years ago I went shopping with my daughter and I saw a pair of shoes. I absolutely loved them and I put them on my feet and I just cried in the shop and went ‘I’ll never wear these shoes’. My daughter bought them for me and said ‘you can wear them on the settee’”. https://www.justgiving.com/fundraising/26miles4mnd

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Portrait no.2

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No.2 of 26 for @26miles4mnd Dan Pallett is a BBC sports journalist who worked with Miles at the BBC’s Birmingham studios. His father developed MND and died in December 2013 – less than eighteen months after diagnosis. “I knew something was up when my Dad was slurring his words slightly on Christmas Day BEFORE having a drink. And in February I knew something serious was happening when I saw my Dad lift his right leg as he got into the car. But it was still devastating news in the summer when MND was confirmed. It’s a death sentence with no hope of a cure with incredibly tough challenges ahead for everyone. The worst thing was that it’s so humiliating. Firstly his loss of voice was tough for a man who never stopped talking. Food and drink went from being a pleasure to a messy saliva drooling chore and then to being fed through a tube to the stomach. And eventually a fit and active man needed to be winched in and out of bed and needed everything doing for him no matter how personal. And yes I mean going to the toilet and cleaning up afterwards. The whole thing is horrific and you’d go to prison if you let an animal go through such suffering.” www.justgiving.com/fundraising/26miles4mnd #mnda #mnd #running #marathon #tallinnmarathon #danpallett

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Portrait no.1

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1/26 Miles Pilling was diagnosed with the primary lateral sclerosis variant of motor neurone disease in August 2013. “My GPs kept telling me I had a bad back. One had even told me to ‘learn to live with it’. Bad backs went with the territory as a news cameraman – part of my job at the BBC. I went along with that diagnosis for two years, but deep down I knew something else was going on. Eventually I couldn’t use my camera kit and was taking sick days off work so I paid to see a private orthopaedic consultant as the NHS waiting list was so long. I was then given painful treatments on my spine that were totally unnecessary. My symptoms of stiffness, weakness and difficulty walking kept getting worse and I started asking medical staff whether I should see a neurologist. It was a massive uphill struggle to be taken seriously. I finally got a referral to see a neurologist and soon after my GP told me I might have multiple sclerosis. I returned home that same day to find a hospital letter telling me my neurology appointment had been cancelled because of staff shortages and they could not offer me another one.That was a massive double blow! When I got over the shock I began phoning neurologists' secretaries on numbers I got from the internet. I found one who was sympathetic and she made me an NHS appointment. I was asked to walk across the consultation room and the neurologist said, ‘for somebody of your age to be so badly disabled, we should have been treating you as an urgent priority’. I received a phone call a few days later at work whilst editing a news story asking me to go into hospital that night. Ten days later, after having a barrage of tests, I was diagnosed with primary lateral sclerosis variant motor neurone disease. In a way I have won the MND lottery because PLS is the rarest form of MND and the one that develops the slowest. Sadly my symptoms meant I had to stop working eight months later. Since then I have been trying to stay as fit as possible whilst raising money and awareness of MND by exhibiting photographs I take from my mobility scooter and giving public talks. Donate here – http://www.justgiving.com/fundraising/26miles4mnd #mnd #running

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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 🙂

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)

An emotional real life meeting for the couple who met on the internet!

I met Neicey Mann online and sent her a message one evening asking if we could meet in person so I could photograph her….. Being a well brought up lady, she would normally have refused point-blank and told me where to get off, but the photos were the first of our “26 Miles” pictures – the beginning of Cristian’s and my campaign to raise money for the Motor Neurone Disease Association.

Miles and Neicey

Neicey runs a Facebook support group for people who live with PLS (or primary lateral sclerosis), which is the type of MND I was diagnosed with. You have to live with PLS or be a carer of someone with it to join, so whatever is said there feels private and in the 2 years that I’ve been a part of it, the group’s been a great source of comfort to me and also the cause of a lot of laughter! As you can see when I met Neicey in person the laughs continued.

Neicey is a nickname that was given to “Denise” – Neicey’s real name – by her friends when she was a kid and it stuck. She’s a Brummie through and through and wanted to set up a support group for this “rare” type of MND where people could support each other, ask personal questions and have a laugh as well.

When I was invited into Neicey’s real home, I felt very emotional as it was the first time I’d met somebody else with my type of MND – I recognised she had PLS straight away, and so did Cristian – she was walking and moving in just the same crooked, awkward and stiff way as me!

cdAs Neicey’s symptoms first began to affect her, she was a singer in a band and had a CD released called “Decree Neicey” – shortly after getting divorced. Sadly she’s had to give up singing because of how much MND has weakened her voice. She’s also lost the strength to play the guitar.

She seems to be a pure extrovert (which is probably why she enjoyed performing so much) – I interviewed Neicey whilst Cristian set up his photographic gear and, I’m sure she won’t mind me saying, it was hard for me to get a word in edgeways! We both enjoyed ourselves immensely in the couple of hours that we spent with Neicey and I hope she did too. I feel as though our virtual friendship has become a real world one now!

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Here are some more shots that I took as Cristian was doing his photography thing. I hope you enjoy them.

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When we start publishing Cristian’s “26 Miles” portraits in the 26 days before his marathon fundraising run, there will be a “Personal MND story” accompanying each picture, where you can find out more about the person in the photograph and of how motor neurone disease has altered their life.

Please help us to reach our target of £2,600 for the Motor Neurone Disease AssociationThe MND Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning and is the charity “26 Miles” is fundraising for. Please help them to help more people affected by MND by DONATING to our Just Giving page or donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Nick Owen’s just the ticket

TV personality and supporter of the “26 Miles” Motor Neurone Disease Association campaign Nick Owen will be appearing at the Palace Theatre in Redditch this week – on Thursday September 24 – talking about his experiences interviewing stars from the world of sport, entertainment and news. Tickets are nearly sold out so hurry if you want one!

You can find out more here – Palace Theatre, Box Office

Rumour has it that co-stars from his past may be in the audience (including Suzanne Virdee)! I worked alongside Nick (and Suzanne) a great many times during my 17 year career as a TV cameraman and director.

Here’s what happened as I was reunited with Nick when we visited the BBC studios in Birmingham to take his “26 Miles” portrait recently.

(click on the first image to enter a slide show of all the pictures)

It was so great to meet him again. If you can get to his show on Thursday, you’ll find him as warm and witty in the flesh as he is on TV.

Nick’s portrait will be amongst pictures of a group of celebrities who are supporting the “26 Miles” Motor Neurone Disease Association campaign. These will be published during the final 26 MND portraits in the days leading to Cristian’s marathon.

Please help us to reach our target of £2,600 for the Motor Neurone Disease Association. The MND Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning and is the charity “26 Miles” is fundraising for. Please help them to help more people affected by MND by DONATING to our Just Giving page or donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

Heavens above….

Cristian and I are about a third of the way through our portraits of people whose lives are affected by motor neurone disease.

On some shoots we’ve had the help of photographic assistant James Roberts – @robertsjames  – who’s given his time on a cost only basis to help our campaign – Thanks James!

James 1

James 3

Here he is, getting almost as soaked as an ice bucket challenge nominee, taking the kit down…. it’s tough training to be a photographer!  I’m not sure whether he’ll appreciate these pictures of him in action, but to any photographers looking for an assistant, he seems to know his stuff (and he took most of these photos).

We had been photographing the retired vicar Michael Wenham who’s written a book about his experience of living with MND.

Rev Wenham

Dark clouds were rolling above us during the shoot and thankfully Michael and I made it back inside just as the heavens opened!

Rev Wenham

Michael’s book is called My Donkey Body and is a personal description of his experience of gradually losing control of his body beginning with his ability to speak to parishioners and then to even walk or do virtually anything by himself. He still has a wonderful and infectious laugh though, and he laughs a lot!

Rev Wenham

He has had PLS – the same type of relatively slowly developing MND as me – for 13 years now. I’m 2 years into my MND journey and I found him very inspiring, although I’ll admit the thought that I could be confined to a neurological wheelchair like his in the future is very frightening.

We all enjoyed ourselves, especially when Michael’s wife Jane generously made us a lovely lunch after the shoot.

The Motor Neurone Disease Association helped Michael to get his powered wheelchair. It’s the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning and is the charity “26 Miles” is fundraising for. Please help them to help more people affected by MND by DONATING to our Just Giving page or donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂