The Taxi is Booked...

Hello everybody,
It has been another slow day at the office following an even slower wake up this morning. But they did manage to squeeze me in another bath which certainly left me feeling clean if only slightly more awake. Louise and I tried to make the most of what will inevitably be the last of our truly private time before my return home tomorrow.

As the title suggests, my taxi/ambulance is booked to take me home at two o’clock tomorrow. With this booking comes mixed feelings.

I am somewhat relieved to be going home at all after embarking on my little holiday with part of me feeling like I had got a one-way ticket.  Excitement features largely at the prospect of being able to spend most of my time with Louise and Oscar without someone having to get in the car or being limited by Oscar’s dinner or bathtime.  Throughout the course of my stay, my times of greatest upset have been caused by the departure of one or the other, usually both.  The sight of either leaving sparks memories of the first extremely happy few months after Oscar was born, or reflect on what I have missed or been unable to deliver as a husband or father because of MND, or ponder on their future.  Louise told me that Oscar is still running down the hallway to my bedroom shouting “da-da” and I can’t wait to be back to see it.

But I have been at the hospice for two weeks under the care of their professional staff.  My return home means trying to organise our merry band of carers, calling on family and friends who willingly sacrifice days, even weeks, to fill in slots of time on our kitchen calendar.

Still, despite the emotional rollercoaster which seems to move ever faster, I can’t wait to be home.  The next time I write to you, it will be from my chair, in my front room, whilst watching Oscar play and Louise feeding me grapes (well maybe not grapes because they make me choke).
Until then, much love,
Neil x 

It’s sad to read Neil talking of his lack of ability as a father. I’m glad he places this firmly at the blame of motor neurone disease.  He had only two months of being a great father before the first notion of the disease came to his thoughts.  

After just two weeks of Neil being in the care of professionals, my confidence was lacking in my ability to look after him again. As much as I hated having routine in the house, it meant I didn’t notice the changes in Neil so much, and a break from that routine had me wondering if I would cope again. I remember having mixed feelings between nervousness and the need to have the two of them under one roof again.

Neil couldn’t wait to have Oscar run into his bedroom at home of his own accord, even if it were just for five seconds in and out, than have him brought to the hospice for forced interaction. I had found it difficult to have Oscar there, as he would lose interest very quickly, despite bringing toys and DVDs, he would be interested in seeing Daddy for a few short minutes and then get bored. Always at the back of my mind was the feeling that no young child should have to visit their parent in a hospice.

Despite my trepidation and lack of confidence, I felt good that he was coming home, and I had plenty people around me to hold me up. – Louise (2013)

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@breathingfilm tweeted this page. 2013-05-18 00:04:18 +0100
"No young child should have to visit their parent in a hospice." #Plattitude #MND #ALS
commented 2013-05-18 00:00:50 +0100
Comments on Neil’s original post:

January 28, 2009 at 12:27 am
get some rest and enjoy oscar and louise and hopefully see you saturday for a wee while – collis has emailed and saids to send you his love and best and that he loves ya pink pather boy x

David & Sue Smithson
January 28, 2009 at 12:51 am
Hi Neil
You like your dad are an inspiration to all who come into contact with you.It was my lifes greatest pleasure to have David’s friendship for over 30years as it as been a true pleasure for Sue and I to begin to know all the Platt family once again. Holidays have to come to an end but the home comings are better.

January 28, 2009 at 9:49 am
Safe journey! Hope you the taxi avoids the pot holes!

Love Ann xx

January 28, 2009 at 10:27 am
so pleased you’re home with your lovely little family! Grapes are over-rated. Jess

January 28, 2009 at 10:29 am
May I be the first to say, in the words of dear Peters & Lee, Welcome Home.

January 28, 2009 at 11:10 am
Hi Neil

Just wanted to say that I hope you have a safe journey home back to your lovely family.

Thinking of you all as always

Sara x x

Aunty Pau’s & Uncle Mel
January 28, 2009 at 11:23 am
Hi Nephew
It will be lovely for you to be back home with Louise and Oscar and lets hope that the day gets brighter as you get ready to depart the hospice. One good thing it is a lot warmer today than previous days and the warmth on your face will be good for you.
Suggest if Louise and you need some private time just tell everyone that the lounge is out of bounds for a hour as you are having a bath with your wife! It might just work.

You know where we are if you need anything at any time

Much love
Aunty Pau’s xxxxxx

Ricky Callan
January 28, 2009 at 12:37 pm
Hi Neil, Louise and Oscar,

As you can see by this posting I have read, with a mixture of much laughter and sadness, all your postings, from the start, to the most current one.

I tried to read them all (including the comments) in one go.
Although sometimes very funny, mostly for me emotionally, too difficult to do.

However, I did find that after reading one bit, I really wanted to carry on to the next entry, in a sort of looking through my fingers kinda way. Probably how you’ve been watching those inescapable episodes of Coronation Street (my favourite, by the way).

Firstly, I would like to add myself to that ever-growing list of people who admire the courage you show in dealing with that horrible disease, and the frankness of detailing the minute-by-minute changes, both physically and emotionally, that you have, and will continue, to go through.

Secondly, I don’t want to use this site as a means of talking about what has happened to me in the past few years, but I feel that, although in no way can I comprehend what it must be like to be you, and experience the things you and your loved-ones have gone through, I have a story to tell. So if it’s alright with you, I would like to tell you a bit of mine? Please feel free not to put this on the site, but I would like you to read it at least.

Once again, I have to say that I know this site is not so that people can come on and sound off, or bore everyone to tears.

I know you won’t. But please don’t think I’m saying. Huh! You think that’s bad Neil…what about me?

My story, like yours, is about how your life can change. My change is obviously so different and much lesser than yours, but I would just like to share it with you.

As you know, I’ve been an actor for many years. A profession which I love, and got
into purely by accident. I used to work for the council.(Well when I say work……cough, cough!!) I’ve appeared in over a hundred films, made numerous tv and stage appearances, and written an award-winning short film ‘Pork Chop’ which Louise did costume on.(and can be seen on You Tube, incidentally).I also do a bit of stand-up from time to time.

So the years go by, and one day out of the blue, I meet this brilliant, if somewhat slightly insane person, called Stephen Murphy, whilst working on a production of ‘The Wizard of Oz’ at the Brunton Theatre, in Musselburgh.

We hit it off, and suffice to say, to this day we are still friends (I think), and I love the very bones of the man. I mean who wouldn’t. He’s sunshine personified.

Moving swiftly on, I did various projects over the years.

However, a production of the musical ‘South Pacific’ was very memorable and to this day, I still can’t listen to the music without shedding a tear, as it was the show where I met Jackie, the love of my life.

That special person who loves you, warts and all.

What I really mean is that person who doesn’t mind when you fart in bed, and waft it with the covers. You know what I’m saying? Subsequently, but not due to the farting thing, we got married.

A few years go by, and as a result of complications with my diabetes, (badly made shoes from the hospital), I had the big toe on my right foot amputated.

Due to further problems, I now only have three toes on my right foot. Which is three toes more than My Left Foot (what a great title for a film!!…. Oh wait a minute) as about 4 years ago I had my left leg amputated below the knee. Would you believe I actually failed the audition for Pitlochry Theatre’s Christmas production of Treasure Island.(Honest!!)

So myself and Jackie go through all the trauma of me now being disabled. And there’s all the emotional stuff do deal with. I know that when people came to see me I was doing my ‘everything’s fine’ routine, just to help them cope, because they don’t know what to say.

I do all that stuff like asking Jackie if she’s going to leave me, which to outsiders may seem ridiculous, but to you, seems the obvious choice for the partner of someone, who now sees themselves as a burden. But she was quick to point out that it was ‘in sickness and health, for better or for worse’…yeah I get the picture. I never asked her that again. It was all I needed to hear.

Cut to the 27th of Dec 2005.

After a great Christmas where everything was fine. Opened presents with all the family, in-laws and outlaws, on Christmas morning. My mum and dad stayed for Christmas dinner, where my dad always upsets my mum by comparing her roast tatties to mine, implying that hers are rotten. Oh dear!! But we all have a lovely day.

Boxing Day. Jackie and I do that relaxed dinner on our own thing, and have an equally, if somewhat quieter, kind of day.

Next day Jackie comes downstairs and says that she thinks we should split up.
Totally our of the blue, no build-up, no discussion, no sorting it out,. That’s it. !5 years together. Ten of it married. Game Over.

As you can imagine I was devastated. Something I don’t think I will ever get over.
No one else involved. She’d changed, and didn’t want to be married anymore. She was going to have to have a hysterectomy done, and at the time was having hormone injections, which I know can affect your mood and your menstrual cycle quite badly.

And in some cases, Jackie being one, bring on symptoms of early menopause.
I’m not saying that she was having a so-called mid-life crisis or anything, but she was ’at that age’ as some people have said. I know that men usually buy a Harley Davdison, take to wearing leather trousers and having sex with a younger version of their wife. Not necessarily in that order

As the person I loved more than life itself, and for as much as a man can understand, or do in these matters, I was their to support her, but she chose to go.

Over three years have gone by and life doesn’t get any easier or brighter. I haven’t celebrated Christmas, or my birthday (the 28th Dec) since she left.

I have never been someone who does all that ‘let me through, I’m disabled’ pish
and have tried to be as independent as I can be.

But there is no getting away from it, sometimes it’s hard. Jackie was always there to help me when I came up against a challenge I hadn’t previously encountered.

As you know only too well Neil, you only find out you can’t do something anymore, when you try to do it.

Jackie is with someone else now, but I have resigned myself, to living the rest of my life alone.

After all, I’m no catch, and now see myself as a burden to any potential partner.

It’s more important for me to be a good person now, and I love to see those around me happy, and if I can contribute to that happiness, then that’s enough for me.

People who know me would say that I’m just the same old Ricky, always cracking jokes and having a laugh (no one will be surprised to hear amputation figures highly in my stand up act). But you have dark days too. My life isn’t just a rollercoaster of laughter from the time I get up, to the time I go to bed.

You said Neil in one of your posts, that Christmas isn’t about presents and drinking and eating, its about friends and family. You’re so right mate. I haven’t been someone’s No.1 person for over 3 years now and it still hurts. No need to pick up the phone and tell someone you’ll be late, or what do you want for tea? Nobody to throw their arms around you in a time of crisis, and tell you everything will be okay, even when they really don’t know that for sure. There is nothing compares to the safety and warmth of holding someone close. That was all taken from me, and I ache for it.

That’s why I can relate, only from my situation, to all the tactile stuff you talk about, because until it’s taken from you, or you can’t take full advantage of it, you don’t appreciate how life giving it is. (Louise, you’re a gorgeous, gorgeous woman. But then you always have been)

Well that’s me. Would you believe this is the short version? I do hope I haven’t overstepped the mark (what?With a leg and a half, and three toes. You aint steppin’ nowhere fatboy) I actually felt quite intrusive getting in touch after so long, but I spoke to Colin on the phone the other night, and he said that my name crops up from time to time, and that you were delighted that I had posted comments on the site.
Mind you, he never said if my name cropped up because it was a replacement for a swear word, or not.

Much love to you all, and I do apologise for my James Bond baddie type ‘world domination’ of your site with the length of this comment.

Thinking about you every day, and love to all reading this comment. who know me.

Hugs and laughter. The most important things in life.

May you all have an abundance of both. x

Andrea Kler
January 28, 2009 at 2:59 pm
Hi Neil

Logging onto Plattitude again and just read your latest entry.

You must be very pleased to be going home as there is more going on to occupy your mind and you will be with your lovely family.

You know that you can put me in your merry band as I will help out anytime.

My love to you all and take care.

Thinking of you always.

Love Andy and family xxxxx

January 28, 2009 at 3:41 pm
Hope trip back home goes well Neil…

I can imagine it will be great for you to be near Louise and Oscar again and have him wandering in and out of your room, stealing your Sports biccies.

Wonder if you managed to train them at the hospice in the fine art of the dunking of the sports biscuit ?

Thinking of you a lot and hope to see you very soon.

Sorry not to be there for this return trip this time- say hi to the ambulance ladies !


January 28, 2009 at 4:17 pm
Hiya Sweetie,

I hope you’re settling back in at home after your two weeks at the luxury villa, nice and clean by the amount of baths you’ve had by the sounds of it.

I just wanted to let you know that I’m officially a fully fledged member of the MND Triathon team (along with the hubby! and Rick) which is taking place on the 1st Aug in London, I wouldn’t do it for anybody else I can tell you !!

I thought you’d also like to know that I’ve just spoken to Trudi who organises it for MND and mentioned your name, she knew all about you and told me that since your television appearances and your newspaper articles that the response of people visiting/rining their website has been overwhelming, all the hard work is paying off sweetie.

I’ve been reading the blog daily just to see how you are and again I just want to say how proud I am of you, that I’m still missing you loads and to keep up the fight, you are AMAZING.

Love to you, Louise and Oscar

Love you millions

Rachael, John and Isaac x x x

January 28, 2009 at 4:58 pm
I still listen to the your dads Tomita records, all this seems so much more complicated than a fishing alarm. you and those around you, Are and will always be in my heart and mind. your courage, bravery and stamina, Are an inspiration to us all. I’m sure your dad is looking “on” verry proud of you, as am i to have know you.
love and respect for a Better man than me Neil x

Lula Stefanski
January 28, 2009 at 6:21 pm
Dearest Neil,

..Thinking about you today..

We hope that you arrived home safe and sound and that you are feeling a bit safer within your familiar surroundings. It must be wonderful to be with Louise and Oscar again.

So, take it easy, not too much organising!! Rest and enjoy your little family.

Looking forward to your next post from home x

LOL, Lula, Rick, Jenson & Jake xxxx

Danny M ’n mum Sue
January 28, 2009 at 9:39 pm
I do hope you are all well rested, and feel the benefit after you’re stay at the ‘Villa’, and that you have now safely returned you ‘sooo clean self’ back home. I bet them there baths were a real luxury!!
Gosh it must have been so awful having to watch them leave after you’re visits!
I hope you soon get to see/hear Oscar saying da da, to make your day complete. You must be really tired after you’re busy day so just enjoy being home for now, and rest well.
with much love to you all,
from Danny ‘n Sue x

kims taxi
March 5, 2009 at 11:14 pm
Cool blog, im a taxi driver and enjoyed that, thanks.

Toby Driver
May 31, 2009 at 5:05 pm
Im a taxi driver for Maidstone Taxi, thanks for the read.
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