The calm before the storm?

Hi everybody! Happy 2009 again!
All of your resolutions decided upon and implemented I hope? I wish you good luck with them all, from the serious to the preposterous.

I decided not to make any resolutions this year, didn’t want to hedge my bets if you know what I mean. I’m just going to carry on doing what I’ve been doing since this all started because, quite frankly, it seems to have brought out the best in me. Things that people have been saying both on and off the blog are incredibly encouraging, and it must be that I am the kind of horse that responds better to the carrot than the stick, as I find myself throwing myself into everything from life at home and family, to plundering every possible source I can think of to further our campaign to raise awareness and funding for MND.

I really do feel that the end of 2008 saw a serious increase in awareness, and certainly some of your messages are proof that we are reaching a previously untapped audience. However, I do realise that the amount I can do is limited. Not only because I have limited time, but while I am here I have limited energy. I am using all of the resources that I can access, and in turn they are using theirs.

If we are to turn this mild spring breeze of a campaign into the wind that uprooted trees and demolished houses, we are really going to need your help. Anybody you know, anything you can do, or even any information you have may help. Myself, Louise, and Oscar are willing to give it everything we’ve got, for as long as we’ve got into making this campaign as successful as possible. So please fire some ideas through and let’s start the storm brewing.

I can’t wait to hear from you,
Much love,
Neil


Christmas and New Year were over and so was the pressure of the expectation that we should have some joy in our lives at this time of year. We had still given in to tradition and gone through the motions just like any other year, partly for Oscar’s sake, although he was too young to acknowledge much of the activity, but also to feel a bit of normality.

Christmas had forced Neil into reflecting upon his life a little more and it seemed to do him good. The pressure of reaching another milestone in the calendar now lifted, and fuelled by the good times we had managed to have and the responses from his blog posts, he was energised and up for a fight with motor neurone disease. – Louise (2013)

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commented 2013-04-17 16:57:26 +0100
Comments on Neil’s original blog post:

Cassone
January 8, 2009 at 1:37 am
Dear Neil,
I read your story today in the Daily Mail….I don’t really know what to say to that other than “wow”. I’m 36…Your story has made me think about my own life and where I’m headed. I’ve been ill all flipping Christmas with the flu….the flu, I ask you. It’s put it all in perspective…made me cry, made me laugh about the mobile phone company…made me think about my own family and what is important.
So, you don’t know me. We will likely never meet, but I just wanted you to know that your story touched me. It has inspired me. I will pass it on and pay it forward.
I’d say God Bless, good luck and all the other stuff that one is supposed to say, but they seem trivial. I am awed.
Take care
Cass x

Emma Deanus
January 8, 2009 at 1:37 am
Hi Neil and Louise, I am not really sure what to write but I am the wife of Del Deanus. He was also diagnosed with MND in February 2008. He was 34 when he was diagnosed. After we found out I proposed (on March 15th) and we were married on 29th May this year. We are both very keen to raise awareness and friends and family have done various fund raising events to raise money for the MND Association. Del was quoted in an article in the Sunday Times a few weeks ago about the possible link between MND and footall. Your post about ventilation was really interesting, I will show it to Del. Best wishes, Emma

Sue
January 8, 2009 at 1:38 am
Neil, there are some very special people in this world and some very special friends. You are without any doubt a diamond. Love to you all, Sue x

Bryce
January 8, 2009 at 1:40 am
Hi Neil and Louse

It was lovely to see you folks last week and wonderful to see that far from loosing your acerbic wit you seem to have sharpened it even more-you had Jane and I in stitches you bugger !!!

You know,it isn’t just the awareness of MND that you at promulgating to lots of people (which is great) it’s also the awareness of things that are most important in one’s own personal life.
Perhaps unknowingly, you are making everyone who reads your blog, reassess what really matters- what we all take for granted- and ultimately, what our own personal life is all about..

Those of us more fortunate than you are now looking at our own families, relationships, and I’m sure thinking what would I do in Neil’s/Louise’s situation. How would I react? What would my friends do and think?? – So you see this blog of yours has many faces!

Anyway enuff of that deep philosophical crap..

We will come and see you when we get back from our trip and let you know if we have a new adopted country- or are staying in blighty!

Lots of love, keep fighting and God bless

Bryce and Jane xxx
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