Day Three

I’m exhausted so I’ll be as brief as I possibly can…

I want all of you to know that Neil Platt was, true to form, one hundred percent in control till his last breath.

I want all of you to know that he did not have to go through the horror of having his ventilator turned down. Neil chose to let go the moment he was in the safety of St. Michael’s Hospice and went naturally. I feel proud and privileged to say that his mother, his brother, his cousin and myself were able to hold him as he passed.

I want all of you to know that Neil and I lucked out in the postcode lottery, and had the best care we could ever have hoped for and met some wonderful people in our journey.

But most of all, I want all of you to know that this whole experience has been so much more bearable because of the support that has come from these pages.

The last few days have been difficult for all of us but I, personally, can feel Neil Platt pushing me forward with every decision I have to make, which has made every decision a little easier.

I won’t give up his fight because I can’t give up his fight. It affects all of us.

I have so much more to say, but I’m exhausted.

All my love,


45 Responses to “Day Three”

  • Lots of love to you!I’ve lost my address book but I want to call when things azRE calm enough. Let me know when is good and your number. AF22222222
    SORRY1ses fiona is typing again.

  • danielle, nick, milo and casper


    We are so so sorry to hear the sad news about Neil. You are an amazing girl and the love that shines our from this blog is truly inspirational.
    Wishing you all the strength you need in the next stage in your journey and kisses to Oscar,

    lots of love,

    The Chapmans xxxx

  • Louise,

    Thank you so very much for taking time to let us know of Neil’s last moments. I am so pleased that he was able to leave naturally, and that you were all able to hold onto him as he made the transition. You are a remarkable woman, he is a remarkable man – as a family you are an inspiration and model for all of us.

    As a single mother, I know some of what lies ahead for you, though there is mostly joy. And Neil is with you, still.

    Looking forward to hearing more from you as/when you are able. So much love, and best wishes, to you, wee Oscar, and Neil’s extended family and friends.

  • Hi,
    I only found out about this blog on Monday from a friend who has also lost her lovely husband only 6 months ago. Reading Neil’s blog was very painful in that it was very similar to Richard’s M.N.D. R.I.P
    Let us hope that M.N.D will be curable soon. Deepest sympathy to you Louise, may Oscar give you plenty of laughs,comfort and hope.

  • There is a lot of comfort in knowing he passed away peacefully and surrounded by loved ones. Keep strong Louise!
    The spirit of Neil Platt lives on in all that got to know him.

  • Endless admiration and good thoughts for you from Brooklyn, NY–Kelly Fitzgerald

  • Jane and Brian and the family

    Get your rest, Louise. You, too. have fought the good fight. You’ve lived up to your name: Noble.

    We’re thinking of you every minute of every day and hope that some of that energy is coming your way to sustain you and help you rest up.

    Spoke to your Mum last night, sending all our love your way.

  • It has been truly inspirational reading your posts. I hope I have as much courage when it is my time.

    Thinking of you and yours


  • Dear Louise
    I’m glad that you and Neil have taken all of us on this expedition with you….whatever age/generation – a learning experience…and everyone’s comments and wishes come as close as others can get to sharing it. ‘Admiration’ puts it mildly…Well done! both of you, and, like you and some others say…Neil lives on in spirit – such a ‘powerful’ spirit that you and Oscar will benefit…and so will we.
    Thank you for doing so well;your whole family are very proud of you and we love you even more than we thought possible. Now take a good long rest, even though you’ve lots to do. We’re all still here for you and Oscar, with renewed support from Neil’s inspiration.
    Lots of love, Auntie Liz xxxxxxxxxxxxx

  • Louise,

    You are a shining star. Neil was obviously a great man, but clearly he found his perfect match in you. You seem to have cared for Neil with strength, dignity, compassion and not a little humor at a time when you must have wanted to just lock yourself in a room and cry. You didn’t though, you continued to look after your husband and your baby with grace and poise. I am in awe of Neils courage and your stoic devotion. Oscar has wonderful parents.

    Love, D

  • Thank you so much for letting us know all of this Louise – that Neil passed away naturally with his loved ones around him, and that the highest standard of care was there for you all. And yes, he is still here with you to help with all those decisions, and that will continue.. Hope you are managing to catch up on some sleep. You’re amazing. love you lots x

  • Hi Louise and Oscar

    Just wanted to say that we are here for you.

    Take care.

    Love Andy and Family xx

  • Danny M 'n mum Sue

    Thank you for letting us know about his final moments. I hope it made it a easier for you and the rest of the family to let go also, and knowing that his wish of peace was fulfilled.

    I hope you can rest now, whilst keeping up the fight for MND, and that in the near future there will be able to destroy this evil gene/disease for ever.

    Our hearts go out to you all, and Neil will live in your hearts and hopes for eternity keeping you strong.

    Thinking of you, with love xxxx

  • Hi Louise,
    Just wanted to let you know we are thinking of you. Hope you are managing to get some rest. Take some time for yourself now you really deserve it. As you know better than most Neil was a wonderful person and I believe his life was all the richer for having you and Oscar to share it with. Thank you for letting us know that he passed peacefully. Take good care of yourself and Oscar.
    Love Kathy xx

  • Hi Louise,
    I have been reading your blog for the last few weeks as a dear friend of mine Jane told me about you all. Jane lost her amazing husband Richard to MND. I felt I had to write something and would like you to know you’re all in my thoughts. Many thanks for sharing yours and Neil’s life with this dreadful disease. Sending you all hugs,
    love Louise.

  • Like all of us who read the blog I was constantly awed by Neil’s eloquence and courage. Above all I admired his determination to be in control to the end – I am so relieved that he achieved this. So Louise, I just want you to know, that your last posting moved me even more than anything that went before. You are quite exceptional too.
    Jill Valentine

  • Oh my god Louise, I have been on holiday and I’ve just logged in now and read that Neil has gone. I am now sobbing uncontrollably at work onto my keyboard which must seem ridiculous as I do not know you or Neil at all, except through reading this blog. I feel truly blessed to have been able to read your blog and learn about the true impact of MND. Neil was an absolute smasher with such an important message – and I am so very sorry for your loss – a loss which will be shared by everyone he touched in his all too short life.

    I am sending you strength and all the love in the world to get you through this and continue Neil’s work.

    With much affection,


  • Morning Louise,

    ..Hoping that you had a peaceful weekend and managed to rest a little.

    Well it’s Monday and the beginning of another week albeit a very different one for you and your family. I sincereley wish that you all find the strength to get through this week without too many tears.

    I am still finding it very hard to comprehend that Neil is no longer here. I log on half expecting more news from the man himself.
    But I know that he is peaceful now and no longer suffering. Doesn’t seem to make it any more bearable though.

    Take care of you and Oscar.I hope that he is ok too. I know that children adapt, but I am sure he must be wondering…

    Lots of love, as always x

  • Aunty Pau's & Uncle Mel

    Dear Louise
    Just wanted you to know that Uncle Mel & I are so grateful to you and all the family, friends, doctors, nurses etc who helped Neil through his terrible journey. No one could have done more and raising that beautiful son who will, when he is older realise what brilliant parents he was born to. Keep your strength up for a little while longer and I’m sure that Neil will be watching over you
    now and always.

    All our love always
    Aunty Pau’s & Uncle Mel

  • Louise,

    Sending love to you and Oscar – hoping that that there is enough light and warmth to hold you above the fray as you ride the waves of emotion that will continue their ebb and flow. The impact you and Neil have made is so incredible that your family is expanded manyfold, and far beyond bonds of blood.

    Warmest blessings to you.

  • Dear Louise and family

    I am so very sorry for your loss. I only read about Neil’s passing a couple of days afterwards. I was catching up on the blog and thought I’d leave a message to his last entry and then it was too late…my heart goes out to you and your family.

    I only remember Neil from his band days in London, enjoying life to the fullest and from his blog you could sense that he retained a zest for life, the deepest love for his family and his sense of humour to the last.

    I know that words just don’t seem enough but I wish you all the best, much strength and courage to move forward. You seem to be an amazing person, Louise, and you have an incredible family there to support you and I am sure that Neil will be watching over you and Oscar every step of the way.

    Much love, Tanja

  • Dearest Louise and Oscar and of course Neils Mum and brother. I csn’t help returning to Niel blog and am so grateful for your up dates. This disease is so dreadful, and nobody can imagine unless you have been there. You are in my thoughts daily. Not sure if you are aware or if so wether it is far too soon. But Prof Shaw has written re a rememberance day on 4th April in a church in Sheffield. If you are unable to attend i will prayer for you and say a pray for your marvelous husband Neil.
    Love Lou Mc xxxxxxxx


  • Louise, Oscar, and everyone dear to Neil:

    It seems that no time has elapsed, and yet it feels that an eternity has evolved since Neil passed last Wednesday. Thinking of you all, especially, today. Much love, and blessings, and a hope that you are able to be together to offer comfort to one another.

  • Dear Louise and Oscar
    I am so very sorry to hear your loss. Neil was a amazing person who brighted up my day when he came to visit us for meetings – as smiling and joking.
    Neil will never be forgotten and always in our hearts.

    All the very best


  • I think our greatest tribute to Neil and a fitting way to keep his memory strong is to do as much as we can to fight this deadly disease. I know you will Louise, and want you to know that you have my 100% support together with I’m sure all of the people who have kept track of your lives through this amazing blog.

    You, Neil and Oscar have taught us so much about the value of life…thank you so much for sharing. We will stand and fight this with you.

    Lots of love
    Cate, Tony, Ellie and Joe xxx

  • Dear Louise and Oscar

    I first meet Neil in London at WGI and latter came to know him a little better when he came to WGI in Leeds. He was a very very special person, but you already know that. I shall not forget him or his plight.

    My thoughts are with you both at this most difficult time.


  • Dear Louise

    I’m thinking of you and Oscar today. And sending you and all Neil’s family my love. Angela xx

  • Dear Louise,
    I have been reading your blog, I am so sorry to hear of your sad news, however, it is inspirational that you are able to communicate your feelings through the blog, it helps others understand the impact of this horrid disease.
    MND disease has been close to my heart since 2005, when my friend was diagnosed, it is devastating and as a friend, you wonder what you can do to help, other than show support. Another friend’s Mum died from MND so together we decided to try and raise money for research by way of a charity ball in 2007 – it was very successful, so we are doing another in June 2009 at York Racecourse. We need to raise the profile of MND. Best wishes to you and Oscar. Julie

  • Dear Louise and family

    Deepest sympathy to you all at this sad time. My mum passed away in late Jan 2009 with MND and I can truly understand the sadness that you and your family are going through.

    Much Love


  • Dear Louise, Glad everything turned out beautiful on Thursday – just as you both wanted. My thoughts and prayers are with you and hope you keep strong, with love to you and oscar – Caroline xoxo

  • I have folowed your blog since our MND visitor said it may interest me – you and Neil have been an inspiration to others suffering with MND because we have been able to relate to so many of your experiences. I hope that we too can be as in control and as brave as you and yours when our time comes. Our love comes to you and Oscar. God Bless. Janet xxx

  • Dear louise

    Having just logged on to your blog and spending the evening reading your’s and Neil story I just wanted to send you our thoughts and best wishes at this sad time……
    We attended a very entertaining barbecue at your flat with roof top terrace ; summer july 2005 when staying with friends Rick & Alison.
    Jeff whos memory is much better than mine (I think I was more pissed) recalls the events of the evening in detail and laughs a great deal when we remember the night.
    At the time my mum was very ill with ovarian cancer but spending the weekend with friends lifted my mood and helped me cope with the difficult weeks I had to face.

    I just want to wish you all the best for your new life in Fife and hope Oscar remains healthy.
    As a clinical research nurse I understand the importance of research
    in developing medicine, helping screen for conditions and finding cures for the many incurable diseases we have to face.
    I will now always take an interest in future developments of research into MND and vow to support the cause in the future if i can. I remember vividly turning the pages of a book at st james hospital in leeds for one of my very first patients I nursed as a student with MND, hearing her story always remained with me.

    Well never finding writing things down very easy ( much better at practically helping people) I just wanted to say hello and let you know that I think this website is amazing.

    Good luck with all your future ventures, it was a pleasure to meet you and Neil albeit just the once in July 2005.
    love & best wishes Emma & Jeff x

  • i told you my memory is shocking …..!!! of course we met again at Rick & Alison wedding !! Doh

  • The failing sky did come
    to ask the Sun why he had hid
    and brought this strange oblivion
    about the atmosphere -

    “To look into that yonder vale
    where valour now does live -
    and warm the soul departed there
    infinitely soon.

    Yet shall I once again return
    my sight unto your depth -
    illuminating life -
    despite the going out of one.”

    And so hearts clasp fondly
    ‘gainst his memory full and bright -
    knowing light shines even in
    the infinitest dark;

    yet nurtured by the spirit
    that inhabited his form
    and lingers – everlasting -
    in those who venture on.


    Hoping you are treading the days with light enough to keep you true, and that you and Oscar are not alone as each wave forms. Certainly, we are thinking of you.

  • It is with great sadness that I have just read on your website about Neil’s passing. I’m sorry for your loss and the fact that you and Oscar must now lead your lives without Neil’s physical prescence.
    Stay strong…cry when you need to, and look after yourself.
    You are in my thoughts.

  • Louise and Oscar,

    Sending love to you – especially today.

  • Hello Louise,

    Just wanted you to know that I am still thinking of you, Oscar and all the family. How are you getting on?

    With much love and affection,

    Lorna xxx

  • hey squeeze, as an old friend who has come back into your life, I am so so proud of you and sorry that i did nt get to know the amazing man that was your’s to the next chapter.. when your ready..

    love ya cath farming lass xx

  • Dear Louise,
    I discovered yours and Neils blog this morning through a link at “indestructible”, the story of Ben Byer, and just finished reading all entries.
    I am so sorry to hear about your loss and I do hope you’ll find the strenght to carry on and keep the memories alive for your little boys sake.
    My close friend has been diagnosed with ALS a few months ago. In Belgium – where we live – we refer to this disease as ALS rather than MND. It’s a hell of a disease and I sympatise strongly with every person who has to deal with it, be it directly or through a dear one.
    The harsh thing about it is knowing the outcome. I was reading the entries this morning, hoping for once the end would be different for you but alas. I am glad you are surrounded with friends and relatives.
    I am worried about my friend. She’s doing pretty good considering. Can’t walk anymore, is losing the strenght in her left arm and her breathing is difficult and slow, but she’s always in good spirit. It is so unfair.

    Dear Louise, I wish you all the best and want to thank you for sharing your story.

  • Hi Louise, Just a quick note to let you know your still in my thoughts, i’ve called a few times but did’nt want to leave a voicemail. I hope you and oscar are keeping well.

    susan bell (marie curie) x

  • Louise and Oscar,

    Hoping that the sun warms you this day as you continue to remember and move forward. We are often thinking of you, and hoping that this transition to a different life is one without too many dark corners. Very much looking forward to hearing from you, and knowing that you are both safe and well, when you are able.

  • Hi Louise,

    I am organising a charity auction and dinner dance with my sister Hayley to raise funds for Motor Neurone Disease. It is being held at the Royal Armouries in Leeds on Friday 4th September 2009. We are presenting the proceeds to the Motor Neurone Disease Association. Having heard about Neil’s illness and its devastating effects both through Jill who is a friend of mine and via daily blogs on this site from Neil and his family, we decided that we would like to help in the mission to raise public awareness and raise funds.

    The event that we have are arranging will incorporate a black tie evening sit down meal with an auction and entertainment. We are planning to utilise contacts we already have and to forge new contacts in order to make the event as high profile as possible. We will be approaching local businesses in Leeds for sponsorship and we aim to have a minimum of 180 people attending this event.

    We will be setting up a website from which people can buy our tickets and will be advertising all of our auction lots on this website. We will also be advertised on the Royal Armouries website and they are sending out details of the auction in their newsletter to a database of 10,000 clients. We will be sending out press releases and hope to have coverage on the local news stations. We have also booked a professional compere to host the evening and to conduct the auction, he will be able to make sure we get as much interest generated in the auction lots on the night as possible.

    We are currently finding donations for auction lots and approaching businesses for sponsorhip to help cover the costs of the event. We want to make sure that we make the most of this opportunity to raise as much money as possible for research into MND and to help raise awareness.

    I have already spoken to Jill about the event but now that plans for the event are well underway I wanted to get in touch with you to inform you of the event personally. I hope that this is ok. If you want to get in touch with us at all, Jill has our e-mail address.

    I hope that you and Oscar are ok and both me and Hayley send you our best wishes.

    Kind regards,
    Kelly Carrotte.

  • Dear Louise…

    My thoughts are with you during this difficult time. I just found your website, but have discovered a wealth of humor, practical wisdom and inspiration for all who continue to fight this disease. I too lost my best friend/husband to ALS, far too soon. Thank you both for sharing your experience.

    With kindest regards,
    Kathie Lichtig

  • Louise,

    I do not know if you still look in on these pages; if you do, then please now that we are still with you in thought, and hoping so much that you and wee Oscar are finding many points of light as you make your way on the new journey you share.

    So much love to you,

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