Tag Archives: MND

Wilde about “26 Miles”

Posted on by
Reply

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

Posted on by
Reply

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”.

021015_212

“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.”

021015_218

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

Posted on by
1
021015_158

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!

021015_169

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

Posted on by
Reply

More portraits just confirmed!

Paula-POB-Web-banner

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.

The Blood Moon Legend has it that –

Posted on by
Reply

– “on a Blood Moon night and day you must donate to your favourite charity campaign”…

P9280051

…..so go on then -Text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070  or visit our just giving page

Thank you 🙂

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

Posted on by
Reply

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!

.

R0001018

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

R0001020

R0001033

R0001052

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 

Thank you 🙂

Nick Owen’s just the ticket

Posted on by
Reply

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)
The door to BBC Birmingham’s Midlands Today news studio
Cristian setting up – that’s my mobility scooter in the foreground
Cristian, James and a cardboard cut out of Nick!
James as Nick’s stand-in model
The great man arrives!
Final checks
Nick prepares for his portrait
It was great to be back at the BBC alongside Nick
Laughing at one of his “classic” jokes
Cristian “in the zone” taking our portrait
Cristian still “in the zone” taking our portrait
The view from behind the camera
The view from in front of the camera
All the portraits will be taken in front of this background showing lots of the area around it
A glimpse of what the final portrait might look like
It takes a lot of concentration, this photography thing!

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….

Posted on by
Reply

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 🙂

Groin strain after a little training session – The Great North Run

Posted on by
Reply

Cristian has been preparing steadily for his 26 mile MND Association fundraising marathon and at the weekend completed the Great North Run in a time of just over 2 hours. He was disappointed with his time as a few years ago ran the 13 miles in under 2 hours, but hey, we all slow down as we get older 😉

Cris Grt Nrth Run

Here he is showing off his medal. I did ask if he fancied doing another 13 miles, but he wasn’t impressed.

Afterwards the crowds were so great that he had to stand around for a long time getting cold which caused a minor groin injury to flare up.

We were worried that it would throw the marathon training schedule out of kilter, but a trip to the physiotherapist has sorted him out and his groin is now apparently working just as it should!

Nick Owen supporting “26 Miles”

Posted on by
Reply

I used to work closely with Nick Owen for 17 years! He’s one of the nicest people I had the pleasure of working with and in real life is as warm and friendly as he appears on TV.

Yes, that was his silhouette in my previous post (as if you didn’t know), but I thought I’d add a bit of “cheese” of the variety that used to be served at tea time on BBC regional news programmes….after all, Nick became the main presenter for Midlands Today the BBC regional TV news in the Midlands just a few years before I started at Pebble Mill.

Here’s a snap of the 2 of us having our picture taken by Cristian at the Birmingham BBC studios.

OLYMPUS DIGITAL CAMERA

and this is a snap of me on a snowy day working for BBC news when I worked with Nick –

DSC02988

I never thought I’d get something terrible like MND. In fact, like a lot of people, I’d hardly heard of it – Just goes to show it can happen to anyone….

Keep coming back, I might just give away a few secrets of behind the scenes life at Midlands Today and BBC News……perhaps I could auction a few saucy secrets to raise cash for this campaign????hmmmm good thought 😉