26 Miles is being turned into a book! We will be including the original 26 plus more people who’s lives have been affected by MND.
There will be some true luminaries including the pioneering robotics scientist Dr Peter Scott-Morgan who intends to use technology to “thrive” with MND. We visited him on Tuesday. An absolutely incredible man –
Cristian and I have taken another 6 portraits which gets us very close to the final 26!
When we started the project Sarah Ezekiel (who you’ll remember from my last post) suggested we had to include actress Gina Bellman in our 26 Miles portraits. Gina became a household name in 1989 for her performance as the title role in Dennis Potter’s drama “Blackeyes”. She’s also well-known as Jane in the sitcom “Coupling” and for acting alongside James Nesbitt in the BBC drama Jekyll. Over in the States she has a huge fan following from her role as Sophie Devereaux on the TNT television series Leverage.
Gina’s mother has the rare primary lateral sclerosis variant of MND that I’ve been diagnosed with.
In a weird way getting Primary Lateral sclerosis (PLS) is equivalent to winning the MND lottery because it’s the rarest of the 4 or 5 different subtypes. The disease usually develops very slowly and is unlikely to cause us to die. PLS can develop into ALS but most patients lead long (but increasingly disabled) lives.
I’ve heard it said that some in the “MND community” say the lucky MND patients are the ones who go early. I really disagree and think that every person we have met in the 14 months doing this project would too.
Yes it’s rubbish being ill – Attempting to do the simplest of tasks now leaves me worn out for the rest of the day, I find it increasingly difficult to walk and have to use a scooter to get around. It makes me depressed if I let it BUT the damaged motor neurones causing my body to “not work” are not me! I’m still as stubborn and determined as I was 10 years ago. In fact I’m probably more so since developing MND.
Gina says something similar about her mum:
“In a way the MND makes her even more determined to be independent than if she was a perfectly healthy 81-year-old. None of us expected her to keep going like a Duracell battery…other people in my mum’s friend group have died of age related diseases but mum’s still going strong, being stubborn, being independent.”
Just before Easter I spent the weekend with an old friend of mine who’s supporting the 26 Miles 4 MND project. He happens to be a successful actor these days, and the husband of Kim Wilde.
Here’s a picture of Hal and I relaxing in the jacuzzi that’s in their back yard –
Hal Fowler was my best mate during our teenage school years. At the time our lives felt very creative, quite chaotic and we enjoyed breaking the rules. In truth though it was all fairly innocent and we never actually went too far: We ended up in hospital just once due to too much “high spirits” and although we had a few encounters with the police, we were never actually arrested!
The best months were the ones we had off school to revise for our “O” and “A” levels. Not much revision got done – They were sunny summers and we spent most of the time getting pissed, pushing boundaries and pulling girls. Needless to say Hal and I both ended up “qualification challenged”, though in our individual ways that hasn’t held either of us back in life.
To be honest it was mostly Hal who did the pulling girls. He seemed to have the knack. It was a knack that continued after school, through his time at drama college and then onto the West End stage. Whilst acting in The Who’s musical Tommy, Hal “pulled” Kim Wilde. At that precise moment his pulling career ended. They fell in love and the rest, as they say, is history.
Apart from going to each others weddings, there was little contact between Hal and I in 27 years. Then I sent Hal a text about the “26 Miles” project raising money for the MND Association and he agreed to get involved. It’s resurrected our friendship which happily these days is a bit less hedonistic.
Hal regularly appears on stage, TV and the big screen. He’s acted in West End musicals and is currently playing Cheshire Cat in wonder.land at the National Theatre.
Years before Hal’s professional performing career we’d perform together in our home city of Oxford – busking – I’d sing and play guitar, Hal would sing and accompany on his double bass. We were good at it too! We’d get there and back in a battered Citroen 2 CV with the neck of Hal’s bass sticking through the open sun roof. All of the money was spent in the pub later. Fun times!
There are no pictures of us in that 2 CV, but here are some behind the scenes shots from the morning Cristian and I spent at Hal and Kim’s taking their 26 Miles portraits. We resurrected our busking duo for the day – I think you can see that we still have “it”… whatever “it” is….
(Click on the first picture to enter the gallery)
Cristian and I are having fun on our “26 Miles” journey and we hope you enjoy following us on this blog, but the reason we are doing it is deadly serious. We are trying to raise £2,600.00, or more, for the Motor Neurone Disease Association – the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
MND is a terrifyingly cruel disease that can leave people locked in a failing body, unable to move, talk, swallow and eventually breathe. It kills a third of people within a year and more than half within two years of diagnosis.
We’ve been sent a message by a follower of our twentysixmiles blog. He said why do “you keep me hanging on” Miles? What happened to the portrait shoot with Kim Wilde?
The shoot was in October and it’s true, we’ve not published a post about it yet. The sad fact is that a few days after the photography Miles’s wife told him she wanted them to separate. Sadly the stress of living with MND has (at least in part) made Miles’s marriage another victim of this wretched disease.
This is why we’ve got behind with our marathon photo project, but like all true charity marathon runners we will get to the finish – and we’re “Another Step Closer” to the finishing line with this post because… just for you Terry Brown (and all the many other Kim Wilde fans out there), here are some “behind the scenes” photos from our portrait shoot with Kim taken at her beautiful house in Hertfordshire last October. (Click on the first image to enter the gallery).
I never thought I’d ever get to play guitar with a pop legend!
Half a million Kids in America
Kim gives Miles the respect he deserves
THAT famous tune that went gold
“Let me show you how it’s done Miles”
“just move your bum to your left a bit”
Cristian does work hard
The day was in danger of turning into a pet photo shoot
Cristian setting up in Kim Wilde’s beautiful house
Getting the gear ready
“Good girl!” (the dog that is)
The main portrait of Kim and Miles will be published on 26Miles4MND once we’ve confirmed the date of Cristian’s marathon run.
A person’s lifetime risk of developing MND is up to 1 in 400. That’s one person in an average size cinema screen.
Motor neurone disease kills a third of people within a year and more than half within two years of diagnosis.
MND can leave people locked in a failing body, unable to move, talk, swallow and eventually breathe.
So it’s a deadly serious thing. If you’d like to help us raise money for the Motor Neurone Disease Association, click here to go to our Just Giving site or you can donate via your mobile phone – Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070
Any amount of money helps and will be greatly appreciated by everybody who has to live with this awful, cruel disease.
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.
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.
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.
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.
– 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!
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.
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!
As 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!
Here are some more shots that I took as Cristian was doing his photography thing. I hope you enjoy them.
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 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
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!
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.
Dark clouds were rolling above us during the shoot and thankfully Michael and I made it back inside just as the heavens opened!
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!
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