Wuthering Heights?

Evening all,
I must confess that yesterday left me feeling as vulnerable and bleak as that famous tree atop the moor in the heart of beautiful Brontë country. Today, there is very little change to report. As such, you could be forgiven for thinking that I am still harbouring a desolate outlook. The fact is that I feel my buoyancy of spirit has been lifted by the wonderful supporting comments you have left me. It is very difficult sometimes to wrap my head around the affect that the comments have on my well-being. One of the reasons for this is the fact that many of them are from complete strangers; one would almost automatically assume that friends and family provides both physical and emotional support.

So, I still cannot swallow very much very easily but I’m feeling better about it.

At present, there is little other news from the Platt household. However as promised, I have tried to attach a short amount of Oscar footage to this post for your amusement. Unfortunately, due to a technical problem I had been unable to do this. I have also managed not to attach a recording of my reading an entry so that all of those strangers reading our blog have more of an idea about me. You would have also been able to hear the ventilator in the background, which is also responsible for the strange sentence structure and guttural noises. I hope to have some Oscar footage when I have managed to get it off the DVD, and ditto for the recording when I’ve resolved some of the user interface errors!

I hope we all have a restful night. Until tomorrow,
All my love,
Neil x


I couldn’t help Neil, he wanted to give something back to the people reading the blog, strangers and old friends alike. He wanted them to see his little boy, he was so proud. I just didn't have the time to start messing about with the computer and trying to learn how to upload the clip that he wanted to show.

Neil knew I was not the best of friends with computers, and in all the time I had spent with Neil, he delighted in using the phrase ‘User Error’ every time I got angry at a machine. If that didn’t irritate me sufficiently enough, he would lengthen it to ‘User Interface Error’, until I was barking at him, ‘that doesn’t even mean anything, you’re just trying to make me more annoyed!’ He never did deliver that line without a smirk on his face, adding to the irritation. Only very rarely did I managed to throw it back at him. So when he says at the end of this post, ‘when I have resolved some of the user interface errors’, he means me. I am reassured that his spirits were indeed lifted and his sense of humour was on form, despite the loss of so much else.

I don’t know what these days would have been like without the blog and the comments coming in to lift his spirits. To this day, I meet people who tell me they read the blog at the time and sat at their computers late at night, wanting and trying to write a comment, but just not knowing what to say.

In my experience now, it doesn’t matter what you say, reaching out and making any sort of connection is enough to let people know that you’re thinking of them. Words are the difficult bit – if you can’t find the right words, send something else instead.

Words were something that came easily to Neil, but he could not deny now that his ability to form them was slipping away.

Before Neil woke that morning, I had written this email to a friend:

“I think he knows he has my permission to go but he’s still kicking and screaming. The DN [District Nurse – Ed.] and I talked about it yesterday, she asked me if I saw any acceptance yet and I said ‘No’. She said she didn’t either and I may have to accept that I never will. That’s the hardest bit for me. He said yesterday it’s not the leaving, it’s what he’ll be missing. I can completely understand but I’ll try to concentrate on letting him know in black and white that he has my permission to go should he ever feel ready. Maybe I don’t mean it yet either, and he’s picking up on that. Just read his night sitter’s notes and she said he’s talking a lot in his sleep. We’ll see what today brings,

Speak to you later xxx”

Louise (2013)

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@breathingfilm tweeted this page. 2013-06-20 09:44:46 +0100
Distracted by the opening night of @EdFilmFest, we forgot to share latest #Plattitude. Here it is. #MND #ALS http://www.iambreathingfilm.com/wuthering_heights?recruiter_id=2
commented 2013-06-20 01:02:05 +0100
February 22, 2009 at 9:37 pm
Glad to hear you back on the blog again….i sat here at the computer last night trying to put into words what I wanted to say and failed dismally. There were only 2 comments on and I found your blog and the oomments so profoundly moving that I didn’t know what to say. That, as you know is quite a rare occurence!! I decided to send you mental telepathy messages instead…..don’t suppose they got all the way to Harrogate from here but never mind.

All I want to say is that you, Louise, Oscar, Lynne and Matt are all in our thoughts.

lots of love


February 22, 2009 at 9:52 pm
Hiya Neil and Louise,Osca
I found from my Mums MND that the symptons do make you extremly vunerable, and at timesin total despair. But then another change occurs and acceptance prevails and life goes on. This is not to say i could be as brave as you are Neil. Its a strange one, while Mum was suffering i was so adement that i would book my self in at Switzerland if ever diagnosed, but then after watching Julie Walters I soon realised that MND is such a strange and diverse disease you have to be so forward thinking , even from minute to minute. Then i thought that many experiences would be lost if you ended it before you lost your arms , legs, speech etc. So what is the answer? a hard one! and an even harder one living with it to the best of ability , the second thought was to get rid of it from the face of the earth. I am so so pleased you have good palitive care as this is so needed. Hang in there Neil even if it is on occations fron then lonley tree. You are a trully remarkable species.
Remember your blog lives and raises awareness. Once touched by MND you wish to forget it but we can’t and you have brought it back to the forefront for me thanks for being so frank. Love to your caring Louise
Night god bless Lou Mc
( p.s i do apologise for my dreadful spelling at times

February 22, 2009 at 9:56 pm
Hi Neil,

So glad you are feeling a bit better today – emotionally, if not physically. Thinking of you all the time……

Sleep well – all of you.

Sara x

P.S. Mairi, Hamish & Eilish send their love great big kisses x x x

February 22, 2009 at 10:00 pm
Dearest Neil, Louise and Oscar

My thoughts are with you so much just now. Sending so much love to you all. Hard to know what you are going through and what it all means, but may you feel surrounded by the love of all of us old pals, new pals, strangers, blog readers, Jimmy Saville all who appreciate your big hearted approach to life so much. With love and hugs …Em xoxox

February 22, 2009 at 10:05 pm
Hi Neil, Louise, Oscar

I think of you every day and check in to see how you are doing. We’re all with you and it’s great that you have the strength, wit and courage to communicate with us all.

Like Brian, I’m for a lock in.

Sending you loads of love,


February 22, 2009 at 10:11 pm
Love to you all,
Today I got it right

A life time ago it started to go wrong, the days were too short and the night’s were far too long, all the promises now are broken, like the glass ribbon around my heart the wheels now turned full circle, is it to late to make a start?

Today I got it right the world seems fresh and bright, the possibilities are endless for those with the will to fight, is it just a life time too late?

The pain is almost over, the sands of time run dry, the carpenter’s box is finished, now my future looks silk lined, everything’s gone now, times just waiting for my mind.

Today I got it right the world seems fresh and bright, the possibilities are endless for those with the will to fight, is it just a life time too late?

The ghosts of laughter haunt my dreams, my waking hours are filled with dread, people stare at my tormented soul,
I wish that I was dead. Though they would cry for me if they could see inside my head.

Today I got it right the world seems fresh and bright, the possibilities are endless for those with the will to fight, is it just a life time too late?

Should I wear a rope necklace and invite gravity to dance?
Or put on razorblade cufflinks and leave it up to chance? I could turn on the gas and use a match to light my way but why rush to get to judgement day?
Life is fast enough and run at a rat race pace, I’ll reach the end soon enough and look destiny in the face.

Today I got it right the world is fresh and bright,
the possibilities are endless,
for I have the will to fight.

Dedicated to Neil Platt one of the bravest men I know.
Neil. x

February 22, 2009 at 10:22 pm
sleep tight chicken and get some rest and sweet dreams.

love as always form me and mine to you and yours – always x

Peter F
February 22, 2009 at 10:34 pm

I’ve not long caught up with your last couple of posts mate and had the worst feeling of all when I was reading “Time at the bar….. etc etc”. I’ve been at a loss to know what to say or how to say it – I’ve sat staring at the screen for about half an hour now and everything that’s entered my head to type has just ended up sounding garbage…… if I’m honest I was expecting the worst.

So, apologies if this is no better. I refreshed the home page and was delighted & relieved to see your latest post come up – boy am I glad that the bar got an extension – hopefully with a 24hr license so that it will never shut!! If all the support you’re getting from everyone is helping in the slightest to pick you up a bit, then I guess you’d better be prepared for a shitload more.

Keep fighting it Platt ….. in the best way you know how….. with the courage, bravery, dignity and humour, the likes of which I have never or will ever see from anyone.

I’ll never forget the day you passed a call to me regarding Emma phase II (that’s a project not a woman – for anyone who’s mind is in overdrive!!!), do you remember the one…. turned out to be a bloody market research call on just about every aspect of a building you could think of!! along with it came the bastard grin on your face when I had realised what you’d done!!! Anyway, Rachel did a similar thing to Lisseter last week – had to have a quiet giggle to meself (sorry Jon) and thought of you..

See… total garbage, that’s taken me well over an hour to write!

Sleep well mate and preserve your energy for many a day to come.

Love and best wishes to the three of you..

Pete xx

Helen O’Donnell
February 22, 2009 at 10:40 pm
Hi Neil, Louise and Oscar,
We are so sorry to hear things have taken a turn for the worse. I wish we’d had the chance to get to know you better, Neil, but you are in our thoughts. Reading all the comments you’ve received on this amazing blog, you’ve been an inspiration to so many people and also done some fantastic work to raise awareness about MND. I wish we weren’t so far away, and could pop over regularly to lend a hand.
Sending all three of you massive cuddles and kisses.
Lots of love,
Helen, David and Daniel x X x

Joanne Makin
February 22, 2009 at 10:48 pm
Hi Neil

I was so upset after reading your blog yesterday and have found myself thinking about you throughout today wondering how you have been coping. As a stranger I think this tells you how this website is reaching people and raising awareness.

Have found myself logging on more frequently today, just longing to hear you are somehow feeling more upbeat today.

Praying you are as comfortable as possible. All my love to you, your family and friends and anyone else suffering at this time.


Kelly Carrotte
February 22, 2009 at 11:02 pm
Dear Neil, I have never met you but you have really touched my life recently since I have started reading your inspirational posts. I just wanted you to know that you have made me remember how important it is to make the most of every precious second that I have with my two beautiful children. Thank you so much. My thoughts are with you, Louise, Oscar and all your friends and family. Much love, Kelly.

February 22, 2009 at 11:37 pm
Hi Neil and fambly,

It can be so hard to read these posts, and yet it’s impossible not to marvel at your spirits and determination. My mother’s swallow became very impaired by her strokes, so I feel so much for you all with that to contend with now. It’s such a hard thing to witness, never mind experience personally. The things we take for granted…

Right, techie problem re. Oscar footage: let me know what you want to upload and in what form and I’ll get something to happen as soon as you say. I have the birthday DVD raw footage, and if there’s anything else you want then let’s work a way to get it uploaded. I’m your man, so to speak.

Keep on the sunny side.

Love to you all,
Travis xxx

Kelly Fitzgerald
February 23, 2009 at 12:43 am
Hi Neil and Louise,

I too couldn’t stop thinking about your last post but was at a loss for what to say–and since I’m also a stranger, I wasn’t sure you’d want to hear anything from me anyway. But if you enjoy comments I’m more than happy to oblige. I have loved reading your blog these past few months and can’t overstate my admiration for you and your family. I hope with all my heart you continue to feel this buoyancy of spirit. Thanks for continuing to share so much of yourself.

February 23, 2009 at 1:06 am
Dear Neil, Louise & Oscar,

Reading your blog breaks my heart and leaves me at a loss of what to say, other than we are all thinking of the three of you right now up here in the ‘burgh, wishing we could do more to help.

The sub-zero temperatures up here recently have been hampering the marathon training slightly, but I have a pair of super-comfy fleecy tights to go out running in! Oh yes!!

Keep on trucking,

Love Gregor xxx

February 23, 2009 at 9:48 am
So glad to hear you sounding brighter dude, hope your day brings many smiles

Lots luv x

February 23, 2009 at 9:53 am
Hi Neil,Louise and wee one

Overjoyed to see you still have a drink in your hand and have not yet been thrown out of the pub!! (in fact I spilled my bloody drink all over the cat and my skiddies when I saw this new blog)

I was just thinking- when it does come the time for your last drink at the bar -you can rest assured that dozens, nay hundreds of people(it’s probably reached epidemic proportions now)
who shared a drink with you will be intoxicated for many years to come!

They will be seen staggering around the globe preaching the gospel of the Plattitude to all and any who will listen(and some who won’t!)

They will tell the story of the bravest person they ever met

They will tell the story how one man rose above his physical disabilities and terrible disease to bring enlightenment to those more fortunate.

They will also tell how his courageous wife, and his family and friends supported him in his battle with the bastard MND

The Plattitude will live on long after we are all gone -thanks to you and Louise

I was reading in a book yesterday that to survive it doesn’t take strength -it takes WILL, you seem to have that in barrels full Neil!

I sincerely hope you can have at least a couple more tots before closing time

Keep well,rest, and fight the good fight

Love B&J xxx

Brian in Geneva
February 23, 2009 at 11:50 am
Neil…Brian in cloudy Geneva checking in. I’m with you.

Kate Beddow (Katherine Smith)
February 23, 2009 at 1:29 pm
Lovely to hear you sounding more like your usual positive self again. Keep smiling and I’m sure I’m not alone in keeping you in my thoughts constantly xx

February 23, 2009 at 1:48 pm
Hi Neil and family,
I sat at home on Sunday afternoon reading ‘Time at the bar…’ with a hollow feeling in my heart,not knowing what I was going to read at the end of the blog.Now,sat at my desk at work,I have managed to compose myself suitably to write the following.As I mentioned in an earlier post,I was made aware of your story when I saw the article on Look North in December.At the risk of echoing sentiments felt by others on here;although you are a stranger to me,your story has touched me more deeply than I could ever have imagined.
You are a truly remarkable individual and I am doing my utmost to raise funds (with my first sponsored run scheduled for September) and increase awareness of MND.I feel inspired to continue with my endeavours until a treatment and cure is found.
All my love and very best wishes to you,Louise and Oscar.

cash & scoob
February 23, 2009 at 2:32 pm
We love you and are thinking of you always. A xxx

Paul Smith (Your Cous)
February 23, 2009 at 4:04 pm
Hi Neil,

Well where do I start. It has been years and years mate and I have missed out on so much. I am kinda finding it hard to believe all this. It was only yesterday (or seemed) that you were showing off playing apache on your guitar lol.

You are still such a strong, inspirational person and I will always be proud to call you my cousin. I don’t know what to write or what to say mate apart from my family are thinking about you and yours and I love you mate. I dont know what I can do but if there is anything at all please let me know.

Loads a love to you all

Paul xxx

Caroline O’Toole
February 23, 2009 at 8:35 pm
Hope you all have a restful nights sleep sweethearts. thnking of you always. With love Caroline x x x x x

February 23, 2009 at 10:47 pm
I was sitting in a class room on the 4th floor of my college today and found my thoughts wandering off to you and your family, questioning why am I sitting here and not spending every second with my family. But I decided at the age of 34 I want to be a nurse specialising in pallative care. I watched my dad leave us and I want to help other people on this most horrible journey.
My thought are never very far away from you and you have inspired a project for me on MND.

Caroline Mathison
February 23, 2009 at 11:43 pm
Hi Neil and Louise

I’ve been following your blog since Douglas and Sara first sent me a link, but haven’t sent a message because, like an idiot, I haven’t really known what to say.

I’ve been thinking of you all though. And thinking lots of thoughts about lots of things, as provoked by your honesty, spirit and humour.

Wuthering Heights is probably my favourite book. Bleak, yes, but also beautiful and illuminating. One of my favourite quotes is, “I’ve dreamt in my life dreams that have stayed with me ever after, and changed my ideas: they’ve gone through and through me, like wine through water, and altered the colour of my mind.”

Such is the effect of a shining person on the lives of others, and I think you have altered the colour of many people’s minds.

There’s also a description of Eternity in Wuthering Heights – “Where life is boundless in its duration, and love in its sympathy, and joy in its fullness.”

Wishing you eternal love and joy,
Caroline x

February 24, 2009 at 11:38 am

I was just reading through the comments, particularly from strangers, you have touched so many peopel, and although I know you would trade it all in to get things back to the way they were – the way you have touched and inspired people in the short time (too short) that you have been around – it is more than most people achieve in a life time. I’m so proud to have known you xx
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