Crusades and Questions

Twice in as many days, blimey. Not much by way of news since yesterday so I thought I might as well use the time to launch the crusade.

We want to sell… oops… er… I mean tell our story to a much wider audience in the hope that the more people hear about it, the more people may want to get involved in trying to stop it happening to anyone else. We were thinking of using local and national newspapers, TV and radio as well as this blog which is obviously global.

I hope that you guys might have some ideas as to how I might do this or better still some contacts within the industry who might be able to move something forward. As I am sure you will gather time is of the essence so get those replies coming... no pressure!

Also I am sure there are people out there reading this who do not know me directly and haven't yet commented. I'd love to hear from everyone be it in regard to the above, something else, or better still, a question that no one has dared to ask yet. For example, I have been asked by a friend if they are to wear black to the funeral (apparently there may be an issue with the supply of fabric for bespoke outfits). To which I answered, "wear what you like, Noreen!" The same applies to everybody else.

I'd like to thank my friend Rhona for typing this entry.

Much love

After there being such a big gap between the two previous posts, it was a real boost to Neil to get so many comments. He knew people were out there reading, and from now on, the blog and his fundraising became a real obsession. It was good for him, it gave him something to think about other than his mortality and all that he would be leaving behind. His time was plagued by thoughts of a future he couldn't be a part of, so having goals and achievements to aim for brought relief from those thoughts.

One of Neil's greatest qualities was that he made everyone feel welcome and special. If Neil wanted to be friends with you, you would know about about it. He had an almost child-like quality when it came to making friends, he didn't suffer from the inhibitions that many adults develop when it comes to meeting new people. It was a quality that helped him be successful at work, and now he was able to use it for this 'crusade'. He was gathering and calling to action.

Neil uses 'we' a couple of times here, which is a bit uncomfortable for me to read back. I had every intention of fundraising in the future – even back then I was talking of joining the MND Association on one of their challenges, but that was a dream at this point, part of my recovery plan for when MND had finally stopped torturing Neil.

All I wanted to do was keep the two of them as protected and happy as possible but if that meant I had to help Neil gather momentum for some crusade then so be it. I was happy to go along with anything that gave Neil a sense of achievement, but I don't think I was completely on board with any grand plans at this point – I was just trying to get through each day.

It's quite difficult for me to admit that lack of support, considering how much Neil did manage to achieve with the time he had left.
I love that he joked about his funeral in this post, he knew after the tears there would be a party and this was his way of joining in.

It was this post that prompted our friend Morag McKinnon to write an email to me titled 'A thought', where she tentatively put forward the idea of getting in touch with Emma Davie to propose a documentary. The first line of my reply was: "Yes go ahead... after the day we've had, Neil is on an absolute mission to get a publicity drive going."

The day we had had will become clear in the next post. – Louise (2013)

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Showing 2 reactions

commented 2013-04-11 15:53:30 +0100
Comments on Neil’s original blog post:

October 25, 2008 at 11:09 pm
Hi to all there,
Neil I’ve contacted manufacturers of the ventilator,they have assured me, that total ventilator training (especially of the kind provided today – no coffee, buns, comfy chair, certificate, blue peter badge ) would be considerably less than the cost of the visit to the St James retail park,racked up by certain members of my family whilst I was attending to your toe !.

Take care see you soon Suex

October 26, 2008 at 10:32 pm
Hi Neil and everyone,

it was lovely to see you all and spend some time with you. I just wanted to let you know that I’m thinking of you and to let you know I have a good friend who is a documentary film maker who might be able to help spread the message to a wider audience. Let me know its something you might be interested in. I think there are so many things that people want to ask or know but may be afraid to, but in speaking to you I realised that you are completely open and want to communicate with as broadly as possible so that people understood more. The blog is a great way to do this, and if my friend can help and you’re interested maybe it can widen the circle even more

Much love,

Morag xxxxx

The Nobles
October 27, 2008 at 11:02 am
Hi You Three

It seems like ages since I was last down but it is actually only a few weeks. Douglas and I are really looking forward to seeing you all on the 14th. Thank you very much for my card and pressie. We hdd a little party for Eilish yesterday – at first she was frightened of the puppet you got her, then Mairi managed to get her to give it a cuddle and she wanted it to sleep at the end of her bed – aww!
Louise – Happy Birthday for Wednesday – I will try to get your card to you on time
Love and kisses to you all,
Sara etc……. x x x

Lisa & Richard Stefanski
October 27, 2008 at 1:23 pm
Hi Guys,

Good to see you’re writing on the blog again…
I have a friend who is meeting with a client of his on Tuesday who funnily enough works in TV! I have asked him to explain your situation and see what he can suggest..
If I have good news, I will call you. Maybe its worth contacting GMTV, they are always doing slots on families and their circumstances. I think its worth a go!

Happy Birthday Louise,

Much Love, Lula & Rick xx

Michelle, Tony & Maia
October 27, 2008 at 3:40 pm
Hi there! I have sent text messages to Lou but unsure if you’re getting them. We miss ya’ll heaps. It has been ages since we were up there. I would like to come mid-week when convenient for you and T & I on a weekend that still may be free. Let us know: [email protected] My bank owns Yorkshire Bank so I’ve put a call into our Head of Marketing to put me in touch with the Yorkshire media. Will revert when I know. Unfortunately, I only know financial press with my work but Tony may know dailies through his. Will check. Happy Birthday Lou! Kisses, kisses to Neil. Bear hugs to Oz.

Ian Thatcher
October 28, 2008 at 12:44 am
Hi Guys!!! Its Ian here, I am a friend of Tony and Michelle’s. Louise, if you remember we met a while ago when you guys were still down here. I’ve had an idea – With your permission, I would like to use the resources I have through my media company to make a film for you. I have had some ideas, including how to distribute the final product. Please drop me a line if you think this would be appropriate. Thank you. Ian. [email protected]

October 28, 2008 at 12:46 pm
Hi guys! Lou I hope you had a lovely birthday.

I was just talking to my friend and she was telling me about this website. This is the press release she was sent by them. My friend has since set this up for her baby daughter. Thought it could be a really good idea for Oscar:

KidStart is a free shopping club which gives you money back for your children every time you shop at 100′s of retailers including Argos, Mothercare, M&S, Dixons, Next, Early Learning Centre and many more.
KidStart is free to join and use. Please click here to complete our simple online registration form.
If you would like to learn more about KidStart please visit our website at

There are loads of stores on this website and a percentage of whatever anyone spends can then be allocated by them to be paid into a savings account for Oscar, so if all your friends sign up and try and shop through there where they can, it could really add up.

Worth a think, see you soon. Love Loretta xxx

Michelle, Tony & Maia
October 28, 2008 at 1:55 pm
Hi there! A quick update for you. My Yorkshire Bank colleague put me in touch with Yorkshire Evening Post, Yorkshire Post and Knaresbourgh Post. Also, DJ Ian (the videographer) has loads of TV contacts and will call/e-mail you soon. Love, M.

The Nobles
October 29, 2008 at 9:00 pm

“Happy Birthday to you,
Happy Birthday to you,
Happy Birthday Auntie Louise
Happy Birthday you you”

All our love, kisses and cuddles,
Mairi, Hamish & Eilish (2 Today!)


November 2, 2008 at 12:32 am
Dear Neil,Louise and Oscar,

Simon and Rhona passed on your blog and I am one of those who have been reading quietly and earnestly for the last few weeks.

I feel I have to explain myself or you will be thinking “who on earth is this”!

Neil,I am sorry you don’t know me but I am originally from Edinburgh and went to Edinburgh College of Art (many moons ago!) with Louise,Rhona and Simon then latterly with Simon to the National Film School with Si (or The Vicar as we called him!) In Edinburgh, we spent many late nights in ‘The wee red bar’ or more frequently on random films sets. Louise was the one attending to the talent and I was the one usually with my hands in a black bag wrestling with a 400′ reel of camera film and clapping the clapper board when required.

That aside….. I just wanted to let you know that there is truely never a day that goes past when I don’t think about you guys in Yorkshire. Simon put his finger on it when he said “this situation has brought out the best in us all”. Like others I wonder what words can I possibly apply to describe such a situation. I read your blog and wish that you could write more- you are so inspirational. The words I read are filled with interest and humour and optimism and passion.

Sorry for rambling on but I would like to pass on much love to you,Louise and little Oscar,

Caitlin Buchanan x

Jill Valentine
November 2, 2008 at 3:49 pm
Dear Neil and Louise – I have been reading your blog since I was told about it. I can’t adequately express my admiration for the couragous and honest way you have both faced up to this devastating disease and its consquences. Just to let you both know we are thinking about you. Jill Valentine and family

November 3, 2008 at 9:53 pm
OK here are some BBC/media contacts in Scotland…

Iain M Hepburn
Online Editor –
T: 0141 309 1460
E: [email protected]

Iain S Bruce
Media Strategist – Big Mouth Media
T: 0131 555 4848
E: [email protected]

Alan Greenwood
Editor –
T: 0131 820 6324
E: [email protected]

Some others:

BBC Scotland Online News team – T: 0141 422 7800
All email addresses are [email protected]
General Scottish News – [email protected]

Glasgow & West – Brian Ponsonby
Lanarkshire – Laura Pettigrew
Edinburgh, Fife & East – Angi Brown
Tay (Dundee) – Denise Glass
Central (Stirling) – Jo Perry
Scottish Borders & South – Giancarlo Rinaldi
NE & N. Isles – Ken Banks
H & I – Steven McKenzie

Good Luck!!

@breathingfilm tweeted this page. 2013-03-12 20:41:22 +0000
Neil started an #MND #ALS 'crusade' to reach the masses, and a filmmaker got in touch with Louise... #Plattitude
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