Today the 10th October is a very poignant day, an anniversary that has no cause for celebration but one to reflect and recall how far I have come.  On this day one year ago MND entered our lives, I recall every minute of that day, the trip to the hospital, where I parked the car, the neurologist being late back from lunch.  Lesley and I went to school with one of the outpatients nurses, she was amazed to see us back again, I had been a couple of months earlier to see a gastro doc, when they were trying to find a reason for my weight loss, given the all clear and cancer being ruled out, she was surprised to see us back!  I showed her my hand and said that I was struggling to hold a pen and couldn't write well, she joked "No change there then, you couldn't write well at school" we all laughed and agreed. I recall joking with the neurologist, my symptoms were so varied they made no sense to me, although Lesley had done some googling and multiple sclerosis kind of matched the list but not totally.  After she pulled me about a bit, tested my reflexes I pressed her for her thoughts.  After what seemed like ages, she said she thought she should test my neurones, looking back I wonder if she was too scared to say the words, however she was perfectly safe, I was blissfully unaware what this meant, we left the hospital, returned to the car and I remember saying to Lesley "That went ok, I'm not particularly worried, are you?", she agreed, however I found out later she was lying, she knew what neurones meant, she'd recently read an article on a chap who was campaigning for assisted dying who had Motor Neurone Disease. 

Anyway the title of this story, reflects the fact that after the hospital appointment we ended up in one of our favourite curry places, if we were ever free on a Friday or Saturday night we could be found in one of the many Indian Restaurants in Bedford,  little did we know that that would be our last curry night out!  On returning home I set about googling neurones, and the rest they say is history..

So to bring the story up to date, since my last blog in June, we've taken delivery of a posh new Motorbility car, it's a beast of a car that does about 10 miles to the gallon (of course it doesn't but I always seem to be paying for petrol for it),  but it is big enough to get the scooter and fold up wheelchair in so a necessary addition.  Our cars, Lesley's sporty Astra and my tiny Corsa were no longer suitable so both had to go. In the future if I need an electric wheelchair, and I probably will then it will be swapped for a wheelchair assisted vehicle.

In July we attempted to complete The Hadrians Wall Cycleway, I originally wanted to do the Coast to Coast route but when Lesley was planning it she discovered it had extremely hilly parts, this my bike would struggle with so the easier Hadrians Wall route was decided on.  Carlisle to Tynemouth, spread over 3 days, approximately 23 miles a day seemed achievable.  However the one thing we couldn't organise was the weather, torrential rain and gales, perfect for biking.  After 17 miles, soaked to the skin, falling off my bike, blood pouring down my face our ride was abandoned, thanks to the kindness of a couple from Birmingham who transported us back to our car, we checked into our next hotel to dry out.  After a day of rest we drove to our penultimate destination where I decided I would like to continue the ride, this idea was met with a lot of resistance from Lesley but she gave in in the end!  To cut a long story short we arrived in Tynemouth as planned, albeit in the car but we got there.  I agreed my cycling days were over...

Finally just last weekend we organised, along with my 3 sisters a bric a brac stall outside the local Sainsburys.  This was a resounding success, the sun shone on us that day and we raised a massive £498.65.  We will be repeating this again in the Spring. 

With the summer well and truly over, we march into Autumn and Winter, our days in Cromer at our caravan  will be coming to an end, I've had a pretty stable summer, health wise, my body is changing, but I'm very thankful to be reasonably healthy.  I mean...

I can't walk unaided now, but I can still walk, I just need to hold onto someone or something, being able to stand up and walk even if my limit is around 5 metres is something I want and need to be able to do for as long as possible.

I can't drive anymore, my right foot has dropped completely, I can't lift it from my ankle, I can't wiggle my toes, I have no feeling in it, but Lesley is happy to drive, I think.

I can't do up buttons or zips, or shoelaces, I can't wash my hair, I cant lift my arms above my head.

I can't eat much anymore, big meals exhaust me, apparently when I eat I can't breathe at the same time, now that's something you all take for granted isn't it?  but I have protein shakes which keep my calorie intake up. 

I can't sleep and breathe at the same time, this is the big one, but I have my ventilator which basically moves my diaphragm for me when I am asleep.

My voice is weaker, as everyone knows, I'm not a typical man, I love to talk, sometimes especially when I'm tired it gets slurred, I can sound drunk, I get Lesley to do a lot of my talking for me.

Lots of negatives to life with MND, but you have to look at the positives, when I was diagnosed no-one believed I would still be here 10 months down the line, well that is one giant POSITIVE I am, I can still get about, my ventilator keeps me breathing, my scooter gives me my independence, it's not a way I expected to be living my life at 55 but I'm here and don't plan on going anywhere else just yet!

With that in mind I am planning in the Spring to travel the 120 miles from home to our caravan in Cromer using my mobility scooter, Lesley will walk it alongside me.  We will be looking for lots of volunteers to join us on the legs along the way, so get your walking boots on I will be coming after you!

That's it for now, enjoy your lives, your families and your freedom.