On the 21st December after being told I had MND, I asked how long I had left, he looked down, he shuffled his papers, he looked up, looked first at Lesley, then at me straight in the eye, “maybe 6 months”.  The official letter stating that prognosis arrived just after Christmas, I folded it and carried it around in my pocket for weeks, occasionally re-reading it in disbelief.  So here I am I’ve made the 6 months, lots has happened since my last blog, but I’m pretty determined I’m not going anywhere just yet Mr Neurologist!  

So the last few weeks have been pretty busy and eventful.  I was invited to attend an MND clinic in Liverpool in the hope of being accepted onto a medical trial.  The clinic was a fabulous center of excellence and I left feeling quite confident and energised, forms completed, they would contact me in the next 2 weeks for further tests.  That dream came crushing down quite quickly, the day after we returned I was admitted to hopsital with a severe infection, where I spent a week being treated with anti-biotics.  During that time I felt so sick I couldn’t eat, having already lost 5 stone, I could ill afford to lose more.  So although I was on the waiting list for a PEG (feeding tube), I jumped the queue and had the procedure done while I was an inpatient.  A simple procedure apparently, well thats what the Dr said but he’s probably never had to lie there and swallow a tube without gagging!

I was pleased to have it fitted, it will be literally my life saver when I can no longer eat, but, it also meant an end to my dream of being included on a medical trial, they’re only interested in patients who have not succumbed to any aids.  

My daughters wedding quickly followed after my discharge from hospital, I wasn’t feeling tip top, but I did it I walked her down the aisle and even managed a bit of a dance with her.

Then we embarked on our Spanish trip, I won’t bore you with those details, our Facebook blog recorded all that drama.  

Then we were home, I was now struggling to breathe at night even with a fan on my face, Lesley rang Papworth and made me an appointment.  I could no longer sleep lying down at all, every night i slept upright, I was having weird dreams, talking nonsense when I woke up.  For two weeks I gradually felt more unwell, I had no appetite, I was now having 2 feeds a day through the tube as I couldn’t face eating.  For anyone who knows me well will know I loved my food, I’m the man who would eat a whole Victoria sponge cake in one sitting.

My appointment at Papworth finally arrived, I was admitted to the day ward where I would be normally put through a series of breathing tests.  The Dr popped in, Lesley explained what I had been like, within 10 minutesa blood test confirmed by CO2 levels were far too high.  I hadn’t been breathing properly for weeks, with thatdiagnosis I was told I would not be going home that day. The day I had dreaded and resisted for so long had arrived, I was allocated a NIPPY machine.  This machine pushes air up my nose via a mask, I have to wear it at night when I am in bed as that is when I struggle to breathe most.  To me this machine signalled the beginning of the end, I didn’t want to give in to it,  however I have to say it has improved my energy during the day, my apetite has returned and I can once again sleep lying down!  

A routine dietician appointment followed my discharge from Papworth, I was in trouble for losing more weight, it now stands at 7 stone, thats a whole person!  She threatened me with an overnight pump feed, more machinery for the bedroom, this is not something I want just yet so I am trying very hard to eat lots of high calorie stuff.  I’ve got to stabilise it before I next see her.

Thats about it for now, we’re off to see Andre Rieu in concert in Holland in July, and am hoping to do a coast to coast bike ride in the next few weeks too.