The excitement overflowed from Indie as we approached the airplane. She was 3 years old and this was her first ever flight. February in 2008 was very cold and we were all glad to be getting away to Tunisia.

Indie had insisted on pulling her own suitcase because it was pink and that meant that she loved it. When she had to hand it over at the check in she was very concerned and made the lady promise to look after it.

The flight was great, Indie watched everything whiz past as we took off and landed.

The luggage reclaim was the usual free-for-all and ours came out quite late; at least, most of them did! We waited for ages but the pink one didn’t arrive.

The Rep & airport staff made all the usual promises and we boarded the coach minus one case – plus one crying toddler.

It never showed up and, when we got back home, we made a claim on the insurance. After much resistance they finally paid up and that was an end to the story.

I realise this isn’t a normal blog but it has some relevance on the ‘now’ – Lyne took a phone call the other week, all I heard was “Yes, that’s right …… yes (smirk) ……. You what? (shock) …….. you are joking? …………….. I don’t believe it, you gotta be fu …………. Yes, on Wednesday, thank you (full, balls-out laughing) …….. bye”

They want to deliver the case back, she told me.

1 year & 1 week since the loss, that’s gotta be some kind of record, surely?

See you back here next time, thanks for checking in

Regards

Well, that's xmas out of the way for another year! Just new year to cope with and we're back to reality (relatively speaking).

I thought, for this instalment, i'd be very specific about a single event but the thing i've chosen to describe may be a bit much for those of you with a delicate disposition, if that's you, i suggest you look away while reading........

Those of you who know me well will also know that i've been having great difficulty eating enough to keep a flea alive, so i was offered the option to sort it out once and for all. I naturally accepted and went in to hospital - just before xmas - to have a stomach peg fitted, allowing nutrients and other "feeds" to be administered directly, essentially a gob-bypass!
The day started well, we were early for the appointment and i was checked-in ahead of schedule. The surgeon performing the op came and explained what was going to happen and i guess i felt my first pang of concern right then.
First job was to don one of those rediculous gowns that show your bum to the world. Nice! Then the anisthatist (not sure that's right) arrived with a huge needle to administer a dose of antibiotic. Now, i never look at needles as they go in cos they make me feel queezy but this one managed to drain all the colour from me without me looking. i imagine it was a slight reaction to the contents of the syringe but, i felt right rough!
The reaction eventually passed and i was wheeled in to the theatre.
Next job was to pass a tube via my nose, in to my stomach, to allow the surgeon to 'inflate' my tummy, therefore facilitating an easier 'puncture' through my stomach wall.
No sooner was the tube in my throat that i started to gag and ended up vomitting into myright ear! But still it persisted on it's journey and eventually reached it's destination.
One of the main problems with MND is that you don't always have full control of your, otherwise normal, muscles, and i started swallowing like a mad-man, which meant i could feel the tube in my throat like a wedged chicken bone, which, in tuurn, made me panic a bit.
Having got myself under control, the next step was the local anisthetic, another needle. i felt it going into my stomach wall 4 times annd gradually felt it working it's magic.
When the surgeon was happy that the local was working, he inflated my belly and set about his work. it's a bit hard to discribe, the anisthetic was working but i could feel the tool (not sure what it was) break through my skin, break through my diaphragm, through my stomach wall. There was no pain, just a wierd feeling of following it's journey.
Nevertheless, i could see he was tying off the stitch and i relaxed a little, comfortable in the knowledge that the worst was over........ oh dear. That was only the first of 3!
each time he broke through my muscle i fancy that i heard - maybe felt - a crunching split, and that sent me back into panic mode. He'd finished but the tube was still in my throat, which made me panic even more.

Finally i was in recoveryand listened to the nurse tell my wife that i could get up and go home. 
The other thing about MND is that a little exersion has the same effect as having run a marathon; i was knackered and overstayed my welcome by 4 hours! Serves them right too, cos they didn't  want to supply the actual food-stuffs that the tube had been fitted for, and no-one  wanted show my wife how to use the tube.
UN-BE-LIEV-ABLE!

still not got the hang of this blogging thing, it's hard to know what to write (and how bored people are gonna be!)

Anyway, the latest news is that we have just had planning permission for our side-extension, which will house a custom built wetroom.
I'm relying more and more on my various mobility chairs and scooter so, access to our small family bathroom is increasingly difficult.
A lot of the funds Steve has raised through his many charity events are gonna help realise this big expense, so it's thanks once again!

Those of you who bought the CD, I would like to hear what you thought (genuinely) so, please let me know, whether it's good or bad!

Other news.... I found out, quite by accident, that the MND association are funding a trial of a new treatment in 2009; naturally I was quick to offer my services as a guinea-pig. I'm still waiting on that enquiry but, fingers crossed!
For those curious types: it's a Lithium based drug (already a treatment for MS) and they're anticipating that it will help protect the neural pathways against the disease and, thus, prolong the progression of the disease. The other good point is that it's much cheaper than the current drug - riluzol - and will mean that GPs will be much more likely to prescribe it (my GP won't prescribe riluzol 'cos of the expense).

so, that's it for now. If i don't blog before hand, have a great xmas and new year.
Cheers
Dave

OK, this is my first entry so, please bear with me!

Having been diagnosed back in January 2008, my wife, Lyne, and I decided to get ahead of the game and tackle this thing head-on. The biggest single decision was to move house (we were in an ex-council, mid terrace house at the time, which made any modifications a bit difficult). We quickly sold our house and soon found a bungalow which lent itself to the necessary alterations nicely. However, the downside was that it needed a total re-wire, new kitchen, new flooring throughout, complete re-decoration, ramps, new doors and an extension! Clearly it was gonna be a long job and alternative (temporary) accomodation would be required. Being on a tight budget, the parents were roped in and we spent two months with Lyne's parents and 3 weeks with mine (I won't go into the details of our time at both places; that's for another time!).
Happily, we are now in the bungalow - albeit, with work still going on around us - and it's really taking shape now. The kitchen is all but finished, the flooring is down, every room is decorated, the front drive now has a ramp and the rear decking is half done. ALL of these things would not have been possible without the help of some bloody good friends and family. They deserve a mention so, here's a name check..........

Mum Dad Mick Jean Eileen Steve Chris Mike Salli David Dave Sally Nick Caroline Simon Briony Bloaty Emma Chris Lee all who have donated through this site the Canary Wharf Contractors Fund Miriam the Macmillan Nurses David the Fawns Francis Stef Michelle Quants Kylemore.................. and many more.