Tag Archives: motor neurone disease

“The brain is plastic…..”

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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.

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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).

Guests begin to arrive
More fans arriving
Joost van der Westhuizen arriving at the red carpet and being greeted by MND Association CEO Sally Light (second from left)
Fans had the chance to meet Joost van der Westhuizen after the screening
Me telling Joost about the 26 Miles project
Me still telling Joost about the 26 Miles project!
Everyone wanted a photo!
Camera-phone mayhem!
Camera-phone mayhem!

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

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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

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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

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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…

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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 🙂

Wilde about “26 Miles”

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We’re very excited to say that in a few days time we will be taking Kim Wilde’s portrait as one of our celebrity supporter photos.

I can’t wait to see her again with her husband the actor and singer Hal Fowler who was my best mate at school!

Click here for some 1980’s cool – The official “Kids In America” video.

You can donate to “26 Miles 4 MND” via your mobile phone! – Text ‘mmnd99 £5.00‘ to 70070

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

 🙂

The Australian fighting spirit

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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)
Paula with her “Fundraiser of the Year” award.
Paula and I “reflecting” on her win
Robert taking a keen interest in Cristian’s Hasselblad
me trying to “coldly” talk my way out of the inevitable

We’re meeting some fundraising legends

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More portraits just confirmed!

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Cristian and I are heading up Sheffield way tomorrow to take some very special portraits for “26 Miles 4 MND”.

The first will be Paula and Robert Maguire: the couple who brought the ‪#‎IceBucketChallenge‬ to the UK raising £4million for the‪ #‎MNDAssociation‬.

Paula won Fundraiser of the Year at the Pride of Britain Awards just this Monday (September 28) so we are very proud to be including them in the 26 photos.

We’ll also be photographing another incredible fundraiser –  Ian Pratt of http://www.swimmingthesolent4mnd.com/ian-pratt/

An amazing group of people that we feel privileged to have the chance to meet!

Photo’s and updates of the day and, of course, their “26 Miles” portraits will be posted here soon.