Since finding out that I have motor neurone disease, I can say that I have had more good days than bad without a shadow of a doubt. It is also the case that the occasional bad day which I have experienced has made me recognize even the slightest good in any other day. I say this as a warning. Today and yesterday were bad days.
I feel things are changing but I am confused as to the cause. Nobody else can tell me either. It may be a change in my medication, it may be fatigue, or it may be the condition. I do know that in the morning my speech is beginning to be slurred, this morning almost incomprehensible. I spent most of yesterday in bed and most of today feeling like I wanted to be in bed. My vision became blurred yesterday and continues to be so today. In order to operate and do the things I would like to do, e.g. writing in the blog, seeing friends and family, and pursuing our campaign with vigour, I have to turn my ventilator higher and higher everyday.
I have so much that I still want to achieve, and the thought that the above signs mean the end is nearing fills me with dread. Our story has yet to reach millions and I would like to do it using my own voice not someone else’s.
I still want to complete the preparations Louise was helping me make for Oscar. I need to complete this with my voice and not a series of yes no blinks.
I need to still be me for longer.
I am hopefully going back to St Michael’s Hospice for some respite care and to give Louise and the families and friends a rest, next Wednesday. I will be in the hospice for two weeks. I want to be in the hospice for two weeks, to rest, to recuperate. I also want to come out again, to my son, my wife, my family and friends and my home.
This doesn’t happen in my dreams at the moment.
Like I said, good days and bad days, we all have them. Let’s hope that’s all it is. A bad day.
All my love,
This is one of the most touching posts for me, especially the line ‘I need to still be me for longer’. It brings back one of the days where Neil was frightened by his condition. It was one of those days when we knew we were losing the battle, and it left us with little energy to carry on. I just wanted to hold him and tell him everything would be OK, but it would be a pointless thing to say.
The Plattitude was back online but the comments facility was still down. I wonder now if this contributed to his honesty about his feelings. He would have felt like he was talking without audience, which may have helped him let go with his emotions.
I couldn’t begin to comprehend how we would cope if his eyesight was taken away. The trust he would have to put in others would be frightening. There had been no gradual change, he just suddenly had blurred vision and became long sighted. We were confused and very worried, as to the best of our knowledge, vision was one of the very few things not affected by motor neurone disease.
I managed to arrange for an optician to come to the house and sent an email to Neil's consultant to ask if this could be a progression in the disease. For once, it appeared to be the result of fatigue and from then on, he started to wear reading glasses whilst writing his posts on Plattitude, but only if the blurred vision occurred. Glasses didn’t sit well with the ventilation mask.
As for the slurred speech in the morning, this was something we had to learn to live with, it was there to stay. I was now translating for both of the boys in my life as Oscar was exploring his voice just as Neil began to lose his. – Louise (2013)
January 8, 2009 at 6:51 pm
I know it’s easy to say hun – but keep fighting.
You will be back to your normal bossy funny self in 2 weeks im sure – just enjoy the rest.
Just to let you know I have organised a battle of the bands and already had a great response for the charity
first donation came from hobgoblin music who have donated a very nice looking guitar – i thought something musical would be fitting for you as a campaign for me to try and raise cash. they have kindly popped a link up on their website – hope it’s ok http://www.hobgoblin.com/hobnob/main.php
also getting the coverage for mnd for the comp through local and reginal press – i aim to make a thousand minimum for the charity.
miss and love you very much – feel so helpless and cheated of time with you but im just honoured that i have had a second with you in my life than not at all hun.
anything you want and need im there for you and yours – you know that my friend.
been remembering the nights at the bank house in wakefield with you and your guitar and us singing with the gang after shows etc – even the song you wrote – its cool to be working class i still sing form time to time and it makes me smile.
January 8, 2009 at 7:02 pm
Hoping it was just a bad day, Neil. You’re the strongest guy I know. We all love you and yours and are trying to spread the word.
All of our love,
January 8, 2009 at 8:30 pm
To Neil, Louise, and Oscar:
I happened upon your story, and it is one that fills me with a deep agony even at my very great distance from it. Please know, and trust, that there is so much more love, understanding, and compassion for all of you (including your extended families), and those who judge do so from a place of incredible ignorance. I do not say this with disparagement, simply from a place of knowing. I am certain that these same people mean well and do not intend to add to your already suffocating burden, but there is not any one person who has the right to pontificate with respect to your decision to have your son. He has a right to be in this world, and you had the right to make that decision.
Life is a series of moments – we do what we can with those moments and try to make each one the most brilliant and meaningful it can possibly be. Oscar is the result of one of those moments, and is creating radiance with each breath he takes.
Although it is difficult to expunge the darkness of such negative comments, you must try, because you need to bathe yourselves in the light of love and goodness as you journey this path.
Each day I wish for all of you the warmest blessings possible under such desperate circumstances. We may not know each other, yet we are connected by the fine and vibrant strands of our humanity, and it pains me to know that good people are suffering as you are.
Words, though powerful and moving, have not the heft to hold you against this vast unknown, but they may impart to you the sense of solidarity and the beneficent energy that surrounds you from a world of sympathetic strangers.
Much love to all of you, and profoundly sincere wishes for the most and the best of all good things possible in the time that you have together. So many of us have life, but do not live – you are living intentionally, and though the span of your life together may be shorter, it is fuller and richer in the ways that matter most.
From a friend at the heart.
Lisa, Rick, Jenson & Jake
January 8, 2009 at 9:44 pm
I am sorry to hear that you have been feeling bad the last few days.
I am confident that a couple of weeks away will get you back on track, and I will be thinking of you over this time, willing for things to settle down for you.
I so wish that things where easier for you my friend, it breaks my heart to know that things are not.
I am wishing that tomorrow will be a good day.
Love you buddy
January 8, 2009 at 10:47 pm
I should also add, keep any anger for me when I come down, in a week and a bit. I expect some typical Platt swearing, mate.
January 9, 2009 at 12:36 am
.. Am at work on the nite shift!! Working hard as ever…
This is breaking my heart and everyone elses. Hang in
there Neil, rest your voice and sleep, even if it’s for
short periods of time. I am sure that your 2 week vacation
will revitalise you and your crew!!
You are always in our thoughts and yes, we do miss you
Take care of you, Lula xxx
January 9, 2009 at 5:22 am
Sue here, I really hope it is a short term minor setback you have had with all the excitement xmas ‘n new year, plus the upset with D’ Mail site! Forget those morons!! and hoping you will be much improved after a rest. I’ve been reading your blogs and comments every night.
A pal of mine whose mum had MND ran a charity gig for MND a few years ago, her son is an Elvis tribute artist [they are huge Elvis fans] they got £1800 [minus £300 for room] so I dont know if you like Elvis or not but you may enjoy his site, it has some songs on by him [Dean Craig] http://www.completelyelvis.com [its a safe site] they are in Blackpool for a Elvis [birthday] competition today. Maybe he’ll do another gig at a cheap rate for you, but dont tell him I said that!! He may know Matt n’Linzi!… you’ll know what I mean! If you send me an e-mail I’ll get his proper name for you if you are interested.
Keep smiling, and don’t let those bad comments get you down.
Lots of love to you all, Danny and mum Sue x
p.s. hope you realise on last blog I sent, its ME who’s adopted, not Danny!!!!!!
January 9, 2009 at 9:08 am
Hi Neil, Bloody sad to hear these past few days have been bad ones. We are rooting for you up here. These past few weeks and days you’ve been full on with the blog and Christmas and you must be shagged out- the rest will get you back at the Helm and spreading the word…
January 9, 2009 at 9:43 am
Good Morning Neil, Louise & Oscar,
I hope today is a brighter day for you Neil.
Thinking and praying for you all and sending as much love and affection as possible through this computer screen!
Your bravery and strength put the rest of us to shame!
Keep fighting my dear.
January 9, 2009 at 9:58 am
Just to send some love, a prayer and good wishes.
p.s Oscar is beautiful!
January 9, 2009 at 10:59 am
your story has touched my life in the true sense of the word, and i feel lucky to have known your thoughts and fellings through this blog, if there is any way you think I can help raise awareness for your cause then please let me know. I work for an investment bank with a charity department, and i have friends who work at the telegraph and OK! magazine (my best friend is the features editor)….I’m embarassed to say (but it may make you laugh) that my response to the Daly Mail comments was so agressive that they editorial desk emailed me to say they would not be including it in the ‘replys’ until i edited it…. I hope you feel better over the weekend….Jessica
Lisa, Rick, Jenson & Jake
January 9, 2009 at 11:04 am
I left a message last nite whilst I was at work..but it hasn’t appeared on the blog, so here I am again.
Please rest up and take some time out to sleep. We are all fighting your cause so a few hours won’t hurt!
You have amazing strength and willpower, so keep strong Neil.
Sweet dreams, Lula x
January 9, 2009 at 11:29 am
Hi Neil, every day I read your blogg and either end up laughing or crying, so sorry you are having a couple of bad days, hope you have a good day today, keep fighting, you are always in my thoughts.
January 9, 2009 at 12:33 pm
Just to say thinking of you, it breaks my heart to hear you suffering. Keep strong and enjoy the break at the exotic tropical spa with all those lovely native ladies to spoil ya:)
Hope you can post as much from there, keep us informed how the tans coming along.
Love and kisses