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
Thank you 🙂