Portrait no.8

View this post on Instagram

8 of 26. Michael Wenham. Michael Wenham worked as an English teacher before training as a vicar. For many years he was the vicar of three village churches in Oxfordshire before MND caused him to retire. He’s been living with the primary lateral sclerosis form of motor neurone disease for more than eighteen years. A journal written throughout his illness has been turned into a book called “My Donkey Body”. It tracks the despair he’s felt at times as his body gives up, and the darkness that descends as his mind feels trapped. “I didn’t want to preach, nor give false comfort. I just wanted to say this is a bit what it’s like. It’s pretty awful. But it’s not all darkness. I feel grateful, apprehensive and occasionally very tired! The worst thing about living with PLS is the frustration and its prolonged nature. The good thing is being forced off the treadmill of activity. My consultant is right – There are pluses and minuses about living with PLS as opposed to ALS – It's a long haul living with PLS.” www.justgiving.com/fundraising/26miles4mnd #mnd #pls #als #PrimaryLateralSclerosis #running #TallinnMarathon

A post shared by 26miles4mnd (@26miles4mnd) on

Portrait no.3

View this post on Instagram

3 of 26. Neicey Mann ( @neiceymann ) lives lives in Birmingham and created a private Facebook group for people with the rarest type of motor neurone disease, primary lateral sclerosis (PLS). Miles joined the group soon after he was diagnosed with PLS in 2013. “I didn’t want a distant relative going on an open Facebook group and saying about me ‘oh what a shame she’s incontinent and can’t have sex anymore’. Not that that’s happened! I still have sex but I fall off a lot now. Ha, ha! PLS causes us to fall over. I was a singer in a band. I fell off a stage when I was singing – right off the front – and told them that I had drunk too much to sound really rock and roll. But what a lie! I hadn’t had a drink all day – It was the PLS! The most upsetting thing about having MND is that I can’t wear high heeled shoes anymore. A couple of years ago I went shopping with my daughter and I saw a pair of shoes. I absolutely loved them and I put them on my feet and I just cried in the shop and went ‘I’ll never wear these shoes’. My daughter bought them for me and said ‘you can wear them on the settee’”. https://www.justgiving.com/fundraising/26miles4mnd

A post shared by 26miles4mnd (@26miles4mnd) on

A big day for the small guy of MND diseases

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!