Portrait no.26

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26 of 26. Euan MacDonald MBE. Euan was 29 years old when he was diagnosed with motor neurone disease in 2003. He lives in Edinburgh with his wife and two sons. Following his diagnosis, Euan and his father Donald MacDonald CBE resolved to ensure MND research was brought to the forefront of everyone’s mind in Edinburgh and further afield. Being entrepreneurs from investment backgrounds, they established the internationally recognised centre for MND research – The Euan MacDonald Centre. We photographed Euan there in June this year. “The last 15 years have been full of ups, downs, changes and adaptations. When I was first diagnosed the situation was similar to what it is now with only one drug approved to treat MND. Its effects are minimal. But huge strides have been made in areas like genetics and stem cells. I'm convinced treatments will come. Spending time with people like Professor Siddharthan Chandran and others just gives you more confidence in that. While we're waiting for those treatments, I should mention something that has improved my quality of life and extended it – my tracheostomy. It was done 6 years ago after I was admitted to hospital with a chest infection. Tracheostomies for people with MND are rare in the UK. Research has suggested that in an 18 year period there were 38 of us. The reason I'm so passionate about it is because of what it's given me – 6 more years (and counting) with family and friends. 6 more years with my boys. It's impossible to put the value into words. It’s not for everyone but I know I was the recipient of complete pot luck, not a systematic approach. I happened to be under the care of an anaesthetist who said it was an option and they could deal with the after care in my home. There are not many home ventilation teams, experienced in keeping people with a tracheostomy in the community, in the UK. I'm asking that pot luck be taken out of it – and that it can be an option regardless of where you live. I'd like to say thanks to Miles and Cristian. What they are doing with 26Miles4MND gives more hope for people like me that MND will one day be a thing of the past!” Donate: 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.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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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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or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you.

Portrait no.12

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12 of 26. Catherine Bingham, Specialist nurse in complex neurology and rehabilitation. Catherine visits Miles at home every four to five months and is actually the only medical professional Miles sees on a regular basis. He says her support is priceless as she’s been with him from the very beginning. Catherine was also nurse to Dan Pallet’s father who died from the ALS variant of MND. Dan is a BBC sports journalist, was a work colleague of Miles and the second of our 26miles4mnd portraits. Catherine – “I’ve been doing this current job for twelve years and I had my first MND patient after about eight months. I went to a meeting where I was given my first referral and from there I’ve just become more and more involved in it. I have some patients that are in the real palliative stage and their journey with MND has been quite quick and they are totally reliant on care. They have a tube and are ventilated and things like that. Others are still fairly independent. When I first came across MND, the person I was looking after was in a palliative stage and it was hard, it was really tough. I didn’t know what sources to access locally. But I feel that over the years we’ve built up a really good network here to make sure that everybody’s supported properly. Emotionally it is difficult but I like to see now that, certainly with the quicker cases, there’s a start, middle and an end. I feel very blessed and I feel very honoured to be part of that journey with them. For me, from a personal point of view, I find that humbling really – that I’m allowed to take that journey with them.” ___________________________________________ 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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or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you.

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.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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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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