99, 100…Coming Ready or Not

(Neil wanted to write the 100th post. I didn’t think he could do it as he can hardly speak and is in and out of consciousness, but as usual he proved me wrong, demanded that I get a pen and paper, and dictated the following.)

This is the 100th post to grace the pages of the Plattitude. I feel that, to be a wonderful milestone and testament to how far we have travelled.

It must have been all that talk about pub closing time because today has been a very, very difficult day for me.  My swallow is limited to liquids only and my speech has declined overnight, so much so, that I would have been misunderstood trying to buy a donner kebab on the way home from the heaviest night known to Chuck Norris.

The 100th post is also surprising as we never expected to be in a position to write one.

Due to todays medical intervention and subsequent conversations with my loved ones, it’s my intention to go back to Saint Michael’s Hospice for that third and final visit.  This is based on the fact that the criteria set out by myself and as discussed in my previous post, are now fully satisfied and the decision to activate them is mine, and mine only.

It’s a difficult, bordering on impossible, decision for me to make as I have to decide whether to ease the suffering or hang on for the purely selfish notion of seeing them for a few extra days or minutes. The reason I have chosen to go to the hospice tomorrow is to draw the curtains over what has been a devastating, degrading year and a half.

That same year and a half has built strong bonds between our families and friends which will never be broken. You may have noticed that some of the jovial nature of my usual entries is or has been somewhat lacking over the last day or two. Please don’t think that this is because I can’t, it is merely to help Louise carry on the baton without too much pressure to be as witty. I accept comedy as being one of my natural gifts, just don’t expect the same from Louise, my beloved widspouse / spidow (I’m not dead yet)

I do hope, infact I know, that you have been enjoying our blog to it’s utmost and the people you have met/emailed/phoned through it have been able to make you feel less isolated, in particular fellow sufferers.

( Neil was interrupted here to have his meds in the syringe driver changed. True to form, he’s asking how it works. Jill has been videoing him dictating this blog and we’ve run out of tapes. He’s sent her out to get more)

The thing about the blog is that it seems to have made many people, previously untouched and unaware of the disease, take stock of their own lives in order to grasp every opportunity that lands in their lap (if there is an opportunity that lands in someone else’s lap then go see if they’ll do you a swap) Just don’t miss any.

(Neil, at this point, told me that by the time I get round to typing it up, he’ll have thought of what else he wants to say. He’s since then had another very exhausting choking episode and is at the moment resting…hopefully through the night.)

Till tomorrow x

55 Responses to “99, 100…Coming Ready or Not”


  • Jane and Brian and the family

    Neil, you have indeed touched friends, family and people far and wide. I know that daily I examine my life and my priorities with you and the insight you’ve shared in mind. It has certainly sharpened my perspective and helped me see things in a different light.

    I read last week the words of another dying man, nearly as wise as you. He said, “I have loved, and I have been loved. All the rest is background noise.”

    Know that you have loved, and you are loved. That’s the whole point. You got it. You passed it on.

    Thank you for being in my life. You have changed it for the better. Much better. You will live on in all our hearts, very fondly and profoundly. In that way, one person at a time, you changed the world. That’s more than many achieve in twice the years.

    Thinking of you, Louise and Oscar nearly every minute of the day. And when I think of you, I see you laughing and playing your guitar or sitting at our computer downloading music. That’s how you’ll live on for me.

    All our love,
    Jane and Brian.

  • Good luck my old friend, I will miss you so so much, sleep well, until we meet again.

    Love Rick xxxx

  • Dear Louise – Neil’s words are poignant – hopefully you will have a few hours sleep tonight to make you strong for tomorrow. Our thoughts are with you all.
    Love Marian & Alex
    xx

  • You are both constantly amazing us all with your strength and courage to keep writing in what must be a very difficult time for you. Thanks for that it is really appreciated. We can’t begin to imagine what you are going through. Louise I hope you manage to get some rest tonight. Glad to hear Neil is managing to rest as you say hopefully through the night. Will be thinking of you all.
    Love Kathy & Nick xx

  • Please accept heartfelt wishes of strength and peace from a stranger on the other side of the world, who just happened to find your blog and has been reading it for months now.

    You are all in my thoughts at this difficult time.

    Heidi

  • Neil you’ll always have a special place in our hearts. Thinking of you all the time.

    lots of love, hugs and kisses

    Jane and Bryce

  • Thinking of you very much at the moment.

    With all of our love

    Sandy & Alison Robinson

  • Neil, we just wanted to say that we think you are the most kindest, caring and bravest guy we know and an inspiration to us all.

    You and yours are always in our thoughts.

    Lots of love

    Andy and Family xxxxxx

  • Paul Smith (Your Cous)

    Dear Neil & Louise,

    I wish I could see you mate, it has been sooo long and too long.

    Thinking about you all always

    Your little (not so anymore!) cousin

    Paul xxx

  • louise, I send you all love, strength and courage. This is another part of your journey together. Take neil’s hand and walk with him and we’ll hold your hand and walk with you.
    Till tomorrow
    love s xxx

  • Neil and Louise,

    Through an avalanche of tears I want to thank you both for being so open and generous with your time in the form of these blogs, bringing to our attention the (almost, for some of us are not living it directly)absolute reality of living, and coming to terms with dying, from such an unfathomably cruel and random disease.

    Neil, your capacity for love, humour and utter strength are the greatest testament to who you are as a human being; yet you do not profess to be a saint. I have come to know, courtesy of these blogs, simply an ordinary man expressing extraordinary grace with an all too human affect. You have expressed anger, sadness, fear, humility, joy, and certainly trepidation as you face the end of your physical life. Your stubbornness has played a role, I believe, in prolonging your life. It has been stunningly shocking to realise such a rapid decline in your ability to swallow and speak in the past few days, but you are still here today dictating your 100th post!

    However, we all are too painfully aware that this is likely your last message to us, and I ache to think of the agony that each of you feel as you assume your roles in this awful scenario come tomorrow. We are impotent mortals against this vicious marauder that is MND, and can do no more than love you, one human being to another, regardless of relationship, and impart to you our wishes for the most peaceful journey.

    Thank you for giving so much of yourself to people other than your family and friends as you have struggled to endure, and for rousing so many of us from the kind of stupor into which we often sink as we simply drift through each day. I don’t believe in God (sorry if I am offending anyone), but I do believe that our souls continue to exist even in the absence of our physical selves. I am profoundly sorry that you are having to endure this loss, Neil, and that those who love you must endure the loss of your wonderful self.

    Louise, there are no words to express my sorrow for you and Oscar. You have proved yourself an outstandingly loyal and giving partner to Neil – many do not remain with their partners when such tragedy befalls them. In this world of celebrity, filled with superficiality and accolades for frivolous pursuits, there exist people like you and Neil, and your friends and family; people who truly deserve honours and recognition for being the best examples of humanity and family togetherness when society seems to have gone so badly awry.

    It is much to ask Louise, I know, but I do hope that (when you are able) you will feel that you can continue with these posts when Neil has gone so that we may keep in touch with you and Oscar, and know how you are faring. Love to you both, also, for although Oscar is too young to articulate his feelings, he is surely troubled and affected by all that is happening, and will feel keenly the loss of his beloved dad.

    When tomorrow comes, may it come as gently and as peacefully as such an ominous day can allow.

    So, so much love to all of you. I feel desolate, as I know you must feel a hundred-fold. Though we cannot all be privileged to share that last, most private moment, we who follow along with you each day will be with you in spirit, wishing mightily that you are each blessed with the fortitude to see you through. If words were enough, if fervent hope was enough, then Neil would be well this moment.

    Neil, you will always be in my thoughts. We need not be present in the forest to know that a mighty tree has fallen; likewise, your imprint upon this world is indelible. A poem for you:

    The tree that falls does make a sound –
    how could it not in its dying swoop?

    If we are not present as it inclines to the earth
    there is no shame –

    there is no shame in the fact that we cannot hear
    (in the usual way)

    its symphony of bark and leaf and habitat
    as it spills itself to a waiting soil.

    Vibrating as it enters the finest movement of decay –
    the giving time –

    it trembles at our innerness
    whether we hear it – or not –

    whether we feel it –
    or not.

    It is merely a question of faith –
    and knowing –

    that the music plays
    in spite of us.

  • Congratulations on your 100th post Neil. You are amazing. xxx

  • This 100th post is a not only testament to how far you have travelled but also testament to the man you are Neil!

    When you first came to WGI, if I remember correctly, you were going to help me out on Shrivenham….. I could tell within the first couple of days that wouldn’t last long and it would be me helping you out. I wouldn’t have had it any other way and I couldn’t have made way for a better man or a nicer bloke! Your desire and determination in what you do and who you are was obvious from the start.

    Whilst many would have suffered in private among family and close friends, the courage you have both shown in opening up to the world (literally) has truly been an inspiration to many and a very humbling experience to witness.

    Neil, although I’ve not really known you that long mate & never met Louise, I salute you both for your true grit, honesty and determination throughout and will always hold a place for you in my heart and my thoughts.

    I sincerely hope you both get a restful night. You deserve it!

    Pete. xx

  • I have been following your journey for a couple of months now, desperate to write but not really knowing quite what to say – nothing seemed right somehow. My mother was diagnosed with MND last year. My thoughts have been, still are and will remain with you and your family. I thank you all for sharing your knowledge, courageous determination and deepness of spirit in this blog.

    x

  • So unbelievably sad to read this entry, but Neil, I am full of admiration for the way you have been so open and honest about everything. Richard, like you, chose to return to our local hospice for his final hours and although we both knew it was inevitable, it didn’t make his death any easier to handle.

    Louise, sending you wishes and prayers that you find the strength to see you through the next few days. Take comfort in your lovely little boy and your wonderful family. God be with with you all.

    Jane

  • Thinking of you throughout the day, and how exceptional you are that with all you’re heartache, you still managed to raise awareness and write your diary/blogs, and even now you still have a sense of fun and humour.
    You have opened our eyes to what can be done if only we were all more like you, your spirit and determination is applauded and we are so full of love and admiration for you.
    Wishing you all a peaceful nights sleep, in the hope that you’re strength and courage will help you through today, whatever you decide. It will be neither selfish or otherwise at what to do next, and whatever the outcome, our thoughts and love will be with you and your family.
    Sending hugs and all our love to you, from D ‘n S xxxxx

  • Dearest friends,

    Just to let you know how sorry I am.
    Though I will shed many tears, I hope we can all take great solace in the knowledge, that thru yours an Neil’s hardship and suffering,
    Your strength, courage and determination never to give in to the end,
    Has been and will continue to be, a great source of inspiration for so many people.
    This gift you have given us at such great cost.
    I’m sure we will all continue to, one way or another, try to repay however we can, by continuing to fight with you on Neil’s behalf.

    We have all share in your pain as we followed Neil and you with your daily struggles, against this awful and must destructive disease, which is MND.
    I hope as I’m sure everyone does, that you all find peace in the near future, after such a long and painful journey.

    With all my heart I wish you all peace and calm for the future.
    T.I.M.E
    Neil . X

  • In your own words neil….(people)”previously untouched and unaware of the disease, take stock of their own lives in order to grasp every opportunity that lands in their lap” For this I am eternally grateful. Sleep well xxxxx

  • The tears are coming thick and fast, I can hardly see to type.
    Thankyou for being you, we love you. Until we meet again…

    Goodnight, godbless and sleep tight.

    All our love, forever,

    Lula, Jenson & Jake xxxxxxxxxxxx

  • I’m lost for words. Neil you’re always in my heart. I love you all and am thinking of you every minute.

    A xxxxxx

  • Michelle, Tony and Maia

    Neil and Lou,
    Thank you. You have kept close everyone scattered around the UK and the world. Through your blogs, our eyes have been open, our hearts deepened, and we have been able to offer you also our support, whether that be hands on, entries, or campaigning. Xoxo

  • Dearest Louise & Oscar,

    We are thinking of you both, especially today.
    Being a wife and mother comes with it’s trials, tribulations and of course, happiness.

    Today is a day that, I don’t think many of us will have to endure in our lifetime.

    I am sending you lots and lots of love, hugs, kisses, plenty of courage and a virtual bottle of your favourite tipple to see you through the next hours.

    A big hug for a very lucky little Oscar who has two amazing parents.

    Lots of love, Lisa x

  • Neil If it really is now closing time..
    just a few words through my tears (I thought old men didn’t cry)

    The Plattitude has exceeded its aims by 1000%

    You have raised awareness of MND throughout the world web to thousands of people

    You have made people re-assess their day-to-day lives and priorities

    You have shown how bravery can exist under the most terrible circumstances

    (although I know this was never your intention)- you have proven what amazing family and friends you have and what grit and courage exists in your lovely wife

    Lastly, you have deeply affected even those who have not met you, those who only skirted the periphery of your life.

    To those lucky enough to have known you personally, you have left an indelible mark which will be carried with them until it is their turn to ‘drink up’

    I salute you Neil Platt- an exceptional human being

    Bryce xx

  • Through the tears I would like to say good bye, Neil and say once again how much knowing you has meant to us as a family. We will miss you greatly but have very special memories for which I thank you. I will be thinking of you all today and hope the drive to St Michael’s is pot-hole free.

    Louise and Oscar, you too will be in our thoughts as will Lynne and Matt. Be strong for each other.

    Love Ann xxxx

  • Your blog is amazing as you are, every day, you either make me laugh or make me cry, today is a crying day. you are all in my thoughts at this very sad time.

    love
    Jane xxx

  • Neil,

    I know you’ll remain strong, no matter what happens next. All of you.

    And, as I said before, keep a cold one for me at the bar because I’ll walk through those doors one day and fully expect to you to be there.

    All my love, mate.

    Robinson

  • Jill, David, Evie & Taylor

    Neil i am so proud to have known you and shared both the ups and down of your life. You leave behind a family who loves you and will always remember you as a strong, gifted person who gave and was always there when needed.

    The one thing that has come shining through on your journey is the loyalty of your friends and the closeness of your family. I know this support wil continue for Louise and Oscar through the coming months and years. We definately want to be part of their life and support where we can.

    Dont worry mate we will continue the work you started for MND and try and ensure that this disease is eradicated as soon as possible.

    Love you mate

    David

  • Neil & Louise,

    So deseperatly sad to read your 100th post. Hard to find the words right now, but just wanted to send our love & deepest wishes on this tumultuous day.

    Tim, Soaf and Thomas x

  • Dearest Neil,

    Like everyone else reading the blog, I am writing this through floods of tears. I knew that the inevitable would finally be upon us but the fact that it is here still seems to come as a shock and I find myself at a loss as what to say other than I love you Neil – it has been a priviladge to have been a part of your family. From the moment I met you, I knew you were an extraordinary individual – it was my wedding day and you were so sweet and helpful even when you must have been shitting yourself as you were meeting Louise’s family for the first time (not helped by the fact that Douglas announced your engagement during his speech!)

    I also want you to know that we will always be here for Louise and that beautiful boy of yours. He is going to have so much fun with his cousins and he is going to get so many kisses and cuddles from his Auntie Sara and Uncle Douglas.

    Neil, I wish you luck on this next part of your journey. I will always think of you as you were, laughing, joking, loving, drinking, riding your motorcycle, kissing your wife, hugging your son, lighting up the room and touching peoples’ lives in a way so profound.

    Much much love Neil,
    Sara x x

  • Neil,
    It’s been a pleasure and a privilege. The blog is well backed up and will stay online as long as I do.

    In the past I have thought about death quite a bit with feelings ranging from fear to curiosity but with an ongoing hope that some point to everything will be revealed.

    There is no way for anyone to know, perhaps it is 42.

    I have found myself coming back to one quote over and over in my head, no philosophers or prophets, I have gone for Peter Pan. “To die will be an awfully big adventure”. I hope it is.

    In the present I find myself thinking more about life. I wish we had had more time.

    Thank you.

  • I have been following your blog, but your 100th post has spurred me into leaving a message

    Being a ‘fluffy’ I didn’t get to work with you much on the MOD projects at WGI, but I think Cork hospital was a testament to the potential you had to don those frilly cuffs and give Lawrence Llewellyn a run for his money, and there you are prentending you are a tough, flat cap wearing Northerner!!

    We haven’t known you for long Neil and we have not been fortunate enough to meet Louise or Oscar, but we think and talk about you often, and always with a smile!

    Our thoughts are with you

    Sam xx

  • Dear both,

    Thinking of you constantly.

    All my love,
    Gill

  • I know I can’t see you again. But that sounds like abstract nonsense to me. So bollocks to that. I’ll see you again. Me & Anita will pop down next week and watch Kamakaze It’s A Knockout or whatever tosh Sky’s shovelling up that afternoon, we’ll have a couple of Guinnesses and maybe head out over The Dales the following day. You’ll say something unprintable and we’ll head back down the following week. It’s not ended. It won’t. That’s nonsense.

    Till then, all my love

    Colin

  • Goodnight Neil.

    You are with us everywhere, so many memories, places, laughs.

    I hope you can feel us all giving you the biggest hug.

    Kate, Steve and Loisxxx

  • Dear Neil and Louise,

    Your words continue to be an inspiration and indeed put life in perspective in these challenging times. No challenge can be greater than yours in so many ways and I can only admire your ability to rise to it. I was hoping to see you next week but that may well be unrealistic. If I don’t get to see you I will still carry those fond memories of seeing you a couple of times over the past few months. The humour was just great and the friendship both of you offered when time between you was so precious was much appreciated.

    Thinking of you both, and Oscar.

    Regards,

    Alistair

  • Dear Neil and Louise,

    The tears are streaming down my face.
    You are all in our thoughts at this truely difficult time.

    Loads of love,
    Helen, David and Daniel xXx

  • Dear Louise and Neil
    This one’s from my corner of the family Willie, Linda, Mark, Lewis and Emma – your friend Julie has put so much into words, we need say no more….but thanks to both of you for this testament of a shattering situation. Much love to the three of you, now and always.
    This is the point I can identify with more closely and it’s simply a hurdle that has to be crossed. We’re all there for you.
    All our love and anything else we can offer!
    Liz xxx

  • Humbled by your courage and promise to spread the word. Thinking of you all all the time and sending you my love. Angela xx

  • Dear neil, louise and Osca, I want to thank you for the blog. It is a great comfort to know that my family are not alone in ther fight to find the genes that cause MND in families, it seems appropriate that Prof. Chis Shaw of Kings is to announce information about a new gene discovery on Friday.Hopefully an interview with the Prof. and the Heaton -Ellis family will be shown on national ITV on friday lunch and early evening news. Together we will find the cause and a cure. Thoughts and love are with you and I do hope Sophie and Louise will meet up with Oscar and Geordie as the terrible 2′s are almost upon them! God bless…Jo Cook

  • Neil – you will always be the strongest and most honourable man I’ve ever had the privilege of knowing.
    Tony

  • Been reading every entry since Douglas and Sara passed the link on. You don’t know me – but I sure wish I’d met you!! You have had me grinning, laughing outloud and provoked tears to roll down my face – often all at once! My thoughts have often been with you and with those around you. My thoughts are especially with you now!

    I am running a 10k and a half marathon in May for MND – a condition I never gave a seconds thought to till found out about you and I read your blog. I find the training hard, but when I feel I can’t keep going I think of how you have kept going adn boy does it put my ‘feeling a bit out of puff’ in perspective!! I will run all the harder and further tonight and I will continue to raise what I can for MND.

    I feel privilleged to have been able to read your 100 posts Neil. hope i get to read 101st!!!!
    A.x

  • I just wanted to say Neil, that you are such a corageous man, and keeping a such positive outlook on life. You are amazing
    You will be missed!

    Louise, our thoughts are with you.

    All over Love
    Lottie and Family xxx

  • Dearest Neil

    I have thought about you loads since I read your post yesterday evening.

    I have also been trying to feel strong for you today

    I want to let your Mum & your brother know that I think about them a lot too. I know that this is not the first time they have been in this situation, and my heart goes out to them and all your family, and of course Louise and Oscar.

    I love you fella, I will miss you, all my love to you always.

    Rickster xxxxxx

  • Neil, you’ll always be in my heart and in my thoughts! Your strength of character and your determination has enriched and thouched the lifes of everyone that knew you. You’ll be forever remembered and greatly missed. Each time i’ll feel overwhelmed or feel like life is just too hard, i’ll think of you… You’ve done so so well!
    Good luck on your journey and hopefully we’ll meet again in another lifetime.
    Love Oana xxxxxxx

  • Lindsey White and Andy Tivey

    Neil and Louise,
    we can’t tell you how much you have touched us over the last couple of months-we feel as though we know you personally!
    we just want to say that we appreciate the time, trouble , effort and pain you have both taken to write these blogs and we want to thank you for that.
    we hope you don’t mind, but we have started praying for you, and have asked our friends to do the same, though we know that there is nothing we can say to make this easier for you.
    thinking of you and your families with much love from
    Lindsey and Andy xxx

  • Hi Cus

    The heartache is in full flow, the closure we have for your safe journey and peace is now apparent. You will always be in my thoughts and know you realize the hearts you have touched, however this gives satisfaction we all know the person we have lost.

    There will never be a day when you’re not thought about.

    God bless you Cousin, sleep tight.

    Adi

  • 2nd attempt in writing this. The bloody tears are such a menace. I want stop. You have made such an impact on I think it’s fair to say, everyone who has read all of your blogs Neil and Louise. Your strength, humour and courage in outstanding, a fella with true dedication. A husband and wife team who over the past year and a half managed to spread the word. You can be sure, we as your friends and fellow team mates, we will continue to build for your cause.
    May the angels hold your hands for now and forever……GOOD NIGHT, GOD BLESS, SWEET DREAMS, WE LOVE YOU….It’s not good-bye, but see you later…………………..Caroline X X X

  • I would like to thank Neil, louise, family and friends for welcoming me into their home and lives, and take the oppurtunity to say what an amazing family you all are with amazing friends.

    I will always rememeber my nights in your home as being full of fun and laughter and i will never forget you all

    my thoughts are with you.

    susan (marie curie) xx

  • I am Brian’s mother and live in a retirement home. During the last month I sat and held the hand of two dying residents and prayed with them. I just left another resident who is dying of liver cancer and will probably pass on before the day is over. I can’t begin to tell you how inspiring your blogs have been…. I speak a lot about you (without ever having met you) and how courageous you are. We say the rosary every day at 11 a.m. and we pray for you at that time.
    I have a great deal of faith and truly believe that God sometimes gives us crosses to bear that are truly heavier than we can imagine.At the same time , he walks this journey with us helping us through the most difficult moments. You are walking your journey with courage and dignity and are truly an example to all of us.
    My thoughts are with you, your wife and that adorable baby. What a legacy you are leaving behind.
    I send my prayers to you… and to your wife.

  • Pleasure to have taught you, pleasure to know you. Constantly thinking about you and your Dad. 100 posts,you have given more than 100% Well done Platty.

    Peter

  • Neil and Louise
    You are in our heart and thoughs.
    You are an inspiration for us.
    Love,
    Irem, Toygan

  • Dear all,thank you so much for your blog, openess and courage.You a remarkable man. Youhave a truly remarkable wife.
    I am totaly lost for words as the pain is so deep and real for the lives this dreadful disease touches.
    Night god bless to you all
    xxxxxxxxxxxxx
    Lou Mc

  • 100 posts well done. Thinking of you and your family every day

    Good Night. Sleep Well. God Bless.

    Andrew

  • All my Love, strength and thoughts go to you Louise, Oscar and all of Neil’s family.

    I have lit a candle in memory of a glowing young man.

    XXXX

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