Campaign Update

Hi everybody,

This just a quick note to let you know that we will be appearing on ITV’s Calendar news in Yorkshire and hopefully Tyne Tees North East Tonight programme at 6pm this evening, and possibly again during the 10 o’clock news.

Please watch out for us and tell all your friends to tune in.

For those outside the Yorkshire region you should be able to use this link to watch the interview on the ITV website: www.itvlocal.com/yorkshire/news [link not working any more - Ed.]

If you are reading this because of this broadcast and are new to The Plattitude, Louise, Oscar and I bid you welcome and thank you for supporting our cause, and as our regulars already know I am delighted to answer any questions you may have no matter how inappropriate they may seem.

Because of the current news cycle I would expect many people would like to know our views on assisted dying. Before I am deluged with questions on this subject I intend to post some of my thoughts tomorrow so watch this space!

Much love,
Neil


Oscar used to eat dinner in the living room so that I could fit both of the chairs together in the same room. His highchair wasn’t so big but Neil’s recliner where he now spent all of his time outside of the profiling bed took up quite a lot of space. Every evening the soundtrack to dinner would be the same as we watched the Bedtime Hour on the CBeebies channel, Oscar mesmerized by ‘In the Night Garden’, just the same as many other children up and down the country. My queue to jump up and run Oscar’s bath was when the little birds, the ‘Titifers’, sung their song, so it would be ready a few minutes later when the programme finished. Everyone who came to help at the house learned the cue for running Oscar’s bath, it was the end of the five minute sit-down before the evening duties started.

This evening we rushed through bath time so I didn’t miss the news. It was a very strange mix of feelings waiting for the report to come on. We were eager to see our message getting out there and spreading awareness, but we were also nervous and not really wanting to see ourselves on TV, especially under these circumstances. I’ll never forget the presenters’ introduction to our story.

"Now this will be his last Christmas but Neil Platt from Harrogate is determined to leave a legacy."

I imagine it’s what having an out-of-body experience is like, watching the TV in the same room the report was filmed, seeing your furniture and your pictures on the wall, but not really recognising yourself, and crying along with everyone else. I imagine I was feeling the same pity as the strangers watching the news as part of their evening unwind.

We couldn’t let self-pity creep into the house. It was the most destructive emotion and did the most damage, more than anger, more than disappointment and more than fear. Self-pity would bring jealousy based on the assumption that life was easier for everyone else, which just wasn’t true. We had been dealt very bad cards but we were lucky enough to be living in a country with a democracy and a national health service. We moaned about the lack of privacy but we were both horrified at the thought that others were suffering without such support. The disease doesn’t care who you are or where you live.

The comments that came in to the blog after this was broadcast were truly touching, people took the time to sit down and share personal stories and little by little, with each comment, the self-pity would feel diminished. One man with MND got in touch, and told us he had lost the use of his arms before his legs. I remember Neil saying he couldn’t imagine how difficult that would be, to be able to walk up to your front door but not be able to put the key in the door and turn the handle to open it.

I have similar out-of-body feelings now when I watch I AM BREATHING. The room may be a different one but I still have some of the same furniture and pictures, only the pity has been replaced with pride and a relief that I have Neil’s positivity there on film. I still feel the anticipation of death like every other viewer, it affects me just the same, but I know that the suffering has gone now instead of being yet to come. – Louise (2013)

Do you like this post?
Next post: A Few Thoughts...
Previous post: The Little Things

Showing 3 reactions


commented 2013-04-11 16:05:56 +0100
Comments on Neil’s original blog post:

Dale Shephard
December 11, 2008 at 7:18 pm
Good evening Neil,
I’ve just seen your article on Calendar, and wanted to check out your site.
I look forward to your update tomorrow.
Take care,
Dale

bethany
December 11, 2008 at 7:21 pm
hi there i have just watched it on calender was heartmoving in may this year i lost my father inlaw to this horrid illness was heartbreaking watching him. the family has started fundrasing event and so far we have rasied just over 10k doing a banger rally round europe which will now be a yearly thing and are looking to start up more. my heart is with you and ur family and just to let u know ur son is a little cutie much love x

lindsay scott
December 11, 2008 at 7:22 pm
all my backing lost my best mate to MN and his mother xxxxxxxxxxxxxxxx

Lisa Stefanski
December 11, 2008 at 9:32 pm
We have just watched Calender…Fame at last Mr.Platt
Absolutely heartbreaking stuff. If this doesn’t change things, I don’t know what will quite honestly.You are both so, so brave. We love you mate.
Lula & Rick x

sam
December 11, 2008 at 11:41 pm
Gosh i broke my heart tonight watching that on the news.You see so much bad news on TV you get slightly hardened to it but this touched a nerve with me …… tell me how i can help please x

adam golembiewski
December 11, 2008 at 11:46 pm
Hi I am 10 years old and have just watched the news with my mum before going to bed – I am up too late I know. I just wanted you to know that I think you and your family are great and I hope you have some really special times with your little boy. I am so sorry that things are bad for you but I am sure you will have happy times together. I will be thinking about you all. Adam and his mum and dad x

Alan
December 12, 2008 at 1:42 am
Hi guys caught you on Calender tonight. I would like to send you guys a link to a a video seminar that may or may not help.

Never give up – no matter what.

Hugs and Blessing

Al x

Suppressed Medical Discovery: Dr. Robert C. Beck ( Cancer,AIDS,MS

http://video.google.com/videoplay?docid=-3383948315844437935

Andy Ward
December 12, 2008 at 10:23 am
My family and I saw your story on the TV last night and Just wanted to say how moved we were to see the amazing bravery and courage that you have all shown as a family faced with such a cruel and aggressive disease.
Your attempt to raise awareness and to gain more support for research is commendable, and we would just like to take this oppertunity to wish you all a happy Christmas.
Andy,Teresa,Rachel,Lauren and Andy Jr.

Aunty Pau’s & Uncle Mel
December 12, 2008 at 12:10 pm
Both of you were brilliant and if this does not get someone with the power to make things change and get more government funding I really don’t know what will. It was also nice to see and hear Pam Shaw and her comments.
Oscar is a star in the making, everyone at work has fallen in love with him.
Louise – hair looked fine need not have worried.
Love to all
Aunty Pau’s & Uncle Mel xxxx

Bryce
December 12, 2008 at 1:58 pm
As someone who has worked in Film and Television all his life I like to think I am pretty ‘hard nosed’ about most stuff I see- but your appearance on TV last night brought tears to my eye.
You were all amazing in your unselfish attitude to this horrendous problem you are living with!
I am sure this will bring MND the notoriety and attention it so much needs and raise the awareness to this awful disease.

Oh- and Oscar’s a bloody star!!

See you soon-I have DVD of Calendar for you.
Love Bryce and Jane

rachelp
December 12, 2008 at 2:30 pm
Hi,

I am the journalist who covered the story on Calendar, and just wanted to say that I don’t think I have ever met such an inspirational couple.

I wish I could have included so much more in the report – you both spoke so brilliantly under unimaginable pressure. You obviously have such close friends and family and what you said about their support was also very moving.

I will continue to try and raise awareness of MND wherever I can and please do keep in touch if there is anything we can cover in the future. I will pop a DVD in the post and leave my contact details.

It was a pleasure to meet such a beautiful family.

Thanks

Rachel

The Nobles
December 12, 2008 at 3:15 pm
Hi Rachel P –

If it was you who donated to my justgiving page – Thank you very much.

Sara

The Nobles
December 12, 2008 at 3:48 pm
Hi Guys

Just wanted to say that I have just watched your amazing piece on Calendar News. You were both so brave and Oscar was a wee star. I had better go and wipe my eyes….. blub, blub…..

We love you all lots and wish we could be with you more at this time.

Sending lots of love from Pittenweem,
Sara & the Gang x x

Lisa Stefanski
December 12, 2008 at 3:57 pm
Please forward to Rachel P.

Please could you try and get Neil, Louise and Oscar onto the main ITV News at 6 & 10pm? I am sure so many will agree that this issue needs UK coverage to make everyone aware of MND and the need for major funding.Please try.

Lisa S x

Charlotte Bell
December 12, 2008 at 5:49 pm
Hi, I just want to say I watched you on calendar last night and it was like watching my family in a mirror. I lost my lovely husband John to MND in February last year aged 32 years old. We too have two little boys Samual is now 6 yrs old and Gabriel is 4 years old. Watching you as a family brought back memories of what life was like for us living with MND and how difficult life is yet how the smallest thing like a kiss from your son can bring a smile to your face. I cannot stress how important it is you cherish each day you have together and no matter how hard it gets keep smiling. I am thinking of you all and sending you all my love and if you ever need anyone to talk to please don’t hesitate to get in touch with me.

Charlotte,Samuel & Gabriel Bell xxxxxxx

Elaine
December 13, 2008 at 12:06 am
I agree awareness of this horrendous disease needs highlighting.I lost my son in January 2008 aged 36.He put up a tremendous fight and we could nt be more proud of him.But people dont realise how hard it is living with MND.It effects every part of your being both physically and mentaly.Oscar is a wonderful inspiration to you both and I know you will make the most of him.Wishing the strength to get through the times ahead.Best wishes Elaine.

Michelle, Tony and Maia
December 14, 2008 at 12:55 am
We’ll hopefully find this on their site. We’ll look to helping with some London-based fundraising opportunities. I loved the entry about Oscar giving you a kiss. Lovely! Miss ya’ll heaps!

Tanja
December 14, 2008 at 6:39 am
Hi

Being on the other side of the world, I was unable to watch the news but reading your last posts and all the comments, believe me, i have tears rolling down my cheeks as I am typing this. I will check out the link straigt after I’ve finished writing this to see the interview. I am sure you guys were brilliant. You’ve got a strong support system there and children make it all worthwhile, even though I want to shoot my trio to the moon sometimes. You know, you helped me become more loving with them, not so strict all the time. I appreciate it so much more, the things I get to do with them, be part of their lives and my love for them grows.

My heart goes out to you and your family…and I also wish I could do a bit more in raising awareness…I’d love to do something music-related…you know, your song “Guardian Angel” keeps popping in my head. Would you mind if I tried to record the song and have proceeds go to your cause…maybe I just have to stand on the streetcorner or sing it from the rooftops (my guitar playing has slightly improved over the years!)and hope that somebody will hear. I just feel so helpless and am lost for words, sorry I haven’t been in touch more. Mum also sends here best wishes. We both admire your courage and optimism…words just don’t seem enough to say how much we think of you and wish that you can get more help to fight this terrible disease. Sending you much love!!!

Tanja & Hildegard

Aly (Dobbie)
December 15, 2008 at 2:13 am
Hi guys,

I couldn’t see the tv item but it was good to read all these great comments from people who saw it. I am raising some sponsorship for a cycling based stunt, details TBC…

love you all so much!

Aly

Jane Clapshaw
December 15, 2008 at 2:47 pm
Hi there,
I would just like to say that my family & I think you are all absolutely amazing, couldn’t stop the tears when I watched your story on calendar, I am sure this will help raise awareness, and hopefully raise enough funds to help research and find a cure. Oscar is a super star.
seeing and reading everything you are going through, makes our little moans and groans go away as quickly as they come.
take care
Jane, Dean, VJ and Lewis xxxx

Patricia Stefanski
January 15, 2009 at 2:58 pm
It is incredible to see you have dealt with this in heroic proportion. I think you have successfully brought attention to research in this field.

What a beautiful family
commented 2013-03-23 23:15:46 +0000
I hope people will post here this time too as well as on facebook so that Lou can continue to get strength from your thoughts x
followed this page 2013-03-23 14:00:42 +0000
THE THIN SPACE BETWEEN LIFE AND DEATH
Film by Emma Davie & Morag McKinnon
Watch it online
Order the DVD
Pay it Forward
Make a donation
STEM CELL REVOLUTIONS