A bit of the story so far…

Hi everyone. So now we’re sitting comfortably, I’ll give you an abridged version of our tale to date. Louise and I married in 2004, spent a few years getting drunk before having Oscar in August 2007. What a milestone that was, and as we were duly warned our lives changed overnight, for the better I might add!


The following months were blissful as we got to know our little boy. The enjoyment was made all the keener by the fact that Oscar had to be delivered by emergency caesarean section at the end of a traumatic night in labour.

Then on a work visit to Manchester at the end of October 2007, I noticed that my right foot was slapping on the floor when I walked. I thought maybe a new pair of shoes was in order so didn't pay it much attention. A few days later though, sitting barefoot at home and flexing my toes, I realised that the toes on my right foot couldn't move as much. At the same time, the thought of MND entered my mind.

I remember the day he's talking about here, 'sitting barefoot at home flexing my toes'. He must have had a meeting that day as he wasn't wearing his bike gear. Neil used to commute to work on his Triumph Sprint motorbike, much the quickest way to cut through London. This day he was dressed in a suit and coat, wearing the new shoes we had been out to buy the day before. He came through the door and without even removing his coat he sat down and took off his shoes and socks to have a look at his feet. It's interesting to read him admitting that this was his first thought of MND, as he didn't admit it to me until a few days later. – Louise (2013)

I had been mentally preparing for that moment since my Dad died of it in 1996. Still, it was only in February [2008] when the diagnosis was confirmed that we began to actually process what it meant. We are still processing what it means as each day we are forced to review how we perform simple daily tasks. I'm happy to discuss the details of the disease progression so feel free to ask but in my next post I intend to pick on a couple of major points which we felt most significant.

Thank you to all of you who have posted comments already…they’re very much appreciated. Back soon…N

I went with Neil to Kings College Hospital for the formal diagnosis in February. Until that day there had been a very slim chance the symptoms were being caused by something else, and we could still experience the emotions of hope. He had been through so many tests, including an EMG and a lumbar puncture, looking for causes other than MND. But that was the day hope was knocked out of us. I don't think either of us wanted to go home, as if staying away from the house would delay the reality. We would have to start telling people. There was a bar at the train station with seats outside, so we got a drink and just sat there numb for half an hour and watched the sunset as we tried to come up with a game plan for the fight. – Louise (2013)

Do you like this post?
Next post: The Stick Stage
Previous post: Birthday Week!

Showing 1 reaction

@breathingfilm tweeted this page. 2013-02-27 09:55:20 +0000
"A bit of the story so far..." - Neil's #Plattitude post about him discovering he had #MND. Louise fills in the blanks. http://www.iambreathingfilm.com/a_bit_of_the_story_so_far?recruiter_id=2
Film by Emma Davie & Morag McKinnon
Watch it online
Order the DVD
Pay it Forward
Make a donation