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 🙂