Starting with the anniversary of Neil Platt's death, we're re-publishing his original blog posts chronicling his struggle against Motor Neurone Disease (as seen in our film). We are going to share them over 100 days in the run-up to 21 June 2013, the Global Awareness Day for MND/ALS which is also our day for worldwide screenings of I AM BREATHING.
The blog posts will appear below, as we're using their original dates from 2008 and 2009. Louise, who was Neil's wife, is going to add some context from today's perspective (you'll see her 2013 comments in italics with each post).
As an introduction, Louise tells us why they started 'The Plattitude' at the time.
The first time The Plattitude was published, we knew how it would end – with the death of Neil. Death was the one certainty that Motor Neurone Disease had brought to our door.
A platitude, for those of you who have not come across the word before, is a remark or statement, often described as flat or trite, but delivered as if it were profound or original, a prime example being "you only live once".
This blog post was written on the day of Neil's death by his brother Matthew.
It is in a cloud of emotions I write my first and only entry on Neil and Louise’s blog.
This story began what feels like a very long time ago with Neil being diagnosed over a year ago now with motor neurone disease, therefore this particular story was only ever going to end with the passing of Neil's life.
It is with a very numb feeling I tell all of you that have been so caring and supportive that Neil passed away at 11:15 a.m. today.
My very brave brother was calm and at peace when he passed away, yet this was far away from what he endured in the last five days. Neil had such lust to be with his family that letting go was the hardest thing I have ever had to watch anyone do. It is such a relief to know that he no longer has to go through the daily torture and Louise and the rest of his family and friends can rest now in the knowledge that Neil was without a doubt so humbled by the care that everyone showed him.
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. – Louise
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 doner 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 today’s 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 its 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
Neil died at St. Michaels hospice, in the company of loved ones, at 11am on the 25th of February 2009.
Neil’s condition has deteriorated over the course of the day and he is now on an I.V. for his medications as he can no longer swallow them and is receiving subcutaneous fluids.
He is still at home.
This was all I had the energy to write. It was published not long before midnight, the first chance I had in the day to sit down and let people know he was still alive. I knew that if I didn’t write anything, I would not be the only one about to have a sleepless night.
I don’t remember the events of the day apart from pictures; I can see uniforms, equipment, and tears. I can hear those unwelcome words again ‘acceptance’ and ‘permission’. He was holding on, he didn’t want to draw that line in the sand, he wanted every last second of his life, he didn’t want to leave.
I took Oscar in to Neil’s room to say ‘night night’, not knowing it was the last time they would share a moment together. Even though I knew Oscar would have no memory of this time, I didn’t take him into Neil’s room the next day, I didn’t let him see his Daddy in distress. He was such a good little boy, he spent the next two days mainly with his Granny and slept through the nights with no fussing. He gave me the time to be with Neil. – Louise (2013)
I must confess that yesterday left me feeling as vulnerable and bleak as that famous tree atop the moor in the heart of beautiful Brontë country. Today, there is very little change to report. As such, you could be forgiven for thinking that I am still harbouring a desolate outlook. The fact is that I feel my buoyancy of spirit has been lifted by the wonderful supporting comments you have left me. It is very difficult sometimes to wrap my head around the affect that the comments have on my well-being. One of the reasons for this is the fact that many of them are from complete strangers; one would almost automatically assume that friends and family provides both physical and emotional support.
So, I still cannot swallow very much very easily but I’m feeling better about it.
… well to be completely frank, we are probably well into our metaphorical 20 minutes drinking up time.
Keeping with my pub theme, the title of this post occurred the second I started using a ventilator 24 hours a day. Without such intervention, the pub would have been closed and sold to a developer to make way for another All Bar One months ago. The ventilator is allowing us to finish our drinks at a leisurely pace, but today has indicated to me just how close I am to kicking-out time.
As Louise told you in last night’s lyrical delight, yesterday was a bad day. Today has been considerably worse. Being able to consume a tin of tapioca and some egg custard yesterday seems today akin to my jumping out of my chair and doing laps of the garden. I have choked at the introduction of just about any liquid, let alone food. The thinner the liquid or the claggier the food, the more I choke on it.
My inability to swallow now seems to be permanent. This realisation came on a flood of tears, my own and those of my wife and brother. The combination of choking, being upset and writing the blog have left me exhausted to the point where I have not been able to get out of bed. Instead, I lay staring at my new artificial night sky and thinking about how close I am to reaching criteria set out in my Advanced Directive, and my final visit to the hospice.
Neil has asked me to write a quick post, just to let you all know that he’s had a bit of a difficult day and is too tired to write. His swallow has been significantly worse today and it’s been an effort to get any food down without a choking fit. Today he’s eaten half a tin of tapioca for breakfast, an egg custard for lunch and the other half of the tapioca for his dinner. I think it sums up his day.
He’s also suffering from a temperature which started just before we put him to bed. I’ve just seen Pat, our night sitter for tonight, on her way to refresh the cold flannel for his forehead. She was also being sent down the hall to tell me to go to bed. I will obey my orders,
Reading this post brings back the jolt of fear, the shortness of breath that grief brings. Sometimes the changes happened with terrifying speed and took most of the day to find a way of coping. I wrote this very tired after midnight, but scared to go to bed incase he wasn’t there in the morning.
I took this photograph after trying to give him dinner and failing. All I could think of to give him was mashed potato and a lot of gravy to help it go down. I look at it and find it almost too graphic to share now, because I know now that it was the last meal I prepared for him and he could only manage a couple of mouthfuls before we resorted to the tapioca. When I took the photograph I was upset, I wanted to show exactly what this disease does to a person.
Writing this post was all I could do to relieve his stress, it had become so important to him to keep up the blog; while he was still communicating, he was still able to feel reason to keep living. – Louise (2013)
…what to expect when you open your eyes in the mornings. Today, ladies and gentlemen, has been no less surprising.
Today was supposed to be a quiet duvet day to counteract the excitement of the last few. Despite having a few restful nights, I still feel fairly fatigued and my swallowing has not really improved (soup and all things mashed are my friends at the moment). As such, I thought a few extra hours in bed would be appropriate.
However, not long after the palliative care team had left me tucked up as snug as the proverbial bug, I received a telephone call asking me if I could do an interview for our local radio station this afternoon. Never one to turn down an opportunity to further our cause, I agreed instantly. The interview is to provide background information to a feature publicising a local fundraising event organised by a friend of mine, Victoria Holdsworth. You may have seen her comments on the blog informing you of the battle of the bands competition she is hosting in support of MNDA. We hope that there will be a link to the piece on Radio Aire’s website which is due to be broadcast sometime tomorrow morning on 96.3 FM. I am sure Vicky will keep us up to date with the latest via the blog.
Or is that mad dogs and Englishmen? Hello all,
Sometimes, I’m not at all sure which way around it is. This cheeky little play on words represents how, from time to time, it is so easy to get things mixed up, back to front and topsy-turvy; this is the case in everyone’s everyday life, but even more so in the emotional boiling pot created by our current situation. As Louise mentioned in an earlier post, intentions get distorted, nerves become frayed, patience evaporates and defences are raised. Such has been the case recently and the result is extreme disappointment.
For me, it is not ultimately the person or people involved who are the cause of that disappointment. It is quite simply that I consider such events as being yet another casualty of circumstance. Just as the physical deterioration I have suffered is a result of motor neurone disease, so is the emotional deterioration of everyone touched by it. It pains me to think that the price being demanded by the disease is so high that not only does it reduce me to a talking head, but it eats away at the strong ties of family and friendship which ordinarily would withstand the most determined of attacks.
Good evening everyone,
I may or may not have mentioned before how the days can run into one another when one’s daily routine is very similar. Often times, I have no inkling of what day it is from one to the next. The net result is that time passes very quickly, so much so that sometimes the weeks slide into months without me knowing. Frequently, the measure of time is a countdown of times I am transported to bed until a certain event, such as the visit of friends. Alternatively it is a count up from a white rabbit day.
One of the main reasons for this is that we have never had a clock in any room of the house and also that I have not worn a watch since being unable to turn my wrist to look at it. Louise remedied this over the weekend by buying me a clock which projects the time onto the ceiling above my bed! As a man who has always been punctual, a real stickler for the minute hand on my watch, this is a delight. It enables me to know exactly how long one of Louise’s 10 minutes really is (I am not entirely sure she thought things through!).
Good afternoon everybody,
I am writing this post to you with the speed of a puma! Could it be that my T-shirt has transferred into me the power of Chuck Norris? Or is it the fact that my new computer etc has arrived and is truly amazing?
For all of those out there facing a similar situation to mine, or indeed those who are not and cannot be bothered to type, there is hope. The new software is far more accurate and the new microphone is more sensitive. Coupled with a faster machine and some bespoke software, I can now navigate my way around a computer more rapidly than most able-bodied people.
©2009 Mark Pinder
This has only been possible because of the help I have received from my speech and language therapist, who put me in touch with AbiltyNet. When they had determined my requirements, the Motor Neurone Disease Association assisted with funding. You will obviously appreciate the difference that this makes to my quality of life, and this is why the fundraising which many of you are now doing is so critical-and so deeply appreciated. I’m sure you have all noticed the various fundraising efforts highlighted in reader’s comments; whilst we are all well aware of the tightening of belts, please try and support each other as much as you are able.
Interesting title don’t you think? As I have ample time on my hands, I often have time to ponder questions of such gravity and magnitude. Most of the time though, the associated questions are enough to occupy me; questions such as, is it true that no matter what height you drop a cat from, it will survive?!
Occasionally however, I have a conversation which starts with innocent enough beginnings but culminates in my consideration of far loftier topics. A particular friend of mine has a unique talent for challenging thoughts which for years have been cast in stone. I was so challenged earlier this evening. Prior to the conversation, I felt fatigued, cold and with the onset of what could have been a sore throat. During the conversation I felt misunderstood, upset, frustrated and on occasion angry.
Good evening everybody,
I’m afraid due to last night being anything but restful, I am once again struggling to gather the air which enables me to string a sentence together. You will therefore understand if I am, mercifully perhaps, brief this evening.
©2009 Mark Pinder
I had hoped that my brand new Chuck Norris T-shirt would infuse me with a new lease of life, but alas even he couldn’t round-house me into action.
Here is hoping that he works his magic over night, I’m sleeping in it just in case!
When I was pregnant with Oscar, Neil came home from the supermarket one day quite chuffed to tell me that a male member of staff had stopped whatever he was doing and just stared at him. The staff member then realised what he was doing and said ‘I’m sorry for staring, it’s just that you have such an impressive beard, well done man!’
Happy Friday night everybody!
Today has been a duvet day to help aid my recovery from yesterday’s glamour photo shoot. The day’s activities included writing two e-mails, watching two episodes of The Sopranos and dozing. I thought that this would be the best plan of action before the inevitably busy weekend, particularly as my swallow and speech were sleepier than usual this morning. Both appear to be re-gaining strength and so this will be a quick post so as not to counteract the day’s efforts.
I did have some good news today from a company called AbilityNet. With funding provided by the Motor Neurone Disease Association, on Monday I will receive delivery of my new high-speed laptop, the latest version of the speech recognition software, a high sensitivity microphone, special head-operated switches which act as mouse buttons, and custom software which divides the screen up in the simplest way depending on which application I use. This should obviously helped me a great deal to continue to communicate with all of you in the outside world. I am very excited and would like to thank Hilary (my speech and language therapist) and the MNDA for making it happen.
It’s been another busy day of chaotic order in the Platt household, the inevitable and now predictable result of which is that I am completely knackered!
Following the morning’s normal ablutions, the fine grooming element more extensive than usual, I landed in the standard arrangement in the standard chair. I was particularly polished today on account of a visit from a photographer from a popular national newspaper. The resulting photographs to accompany the interview conducted while I was at the hospice. One of the reasons I’m so tired is because of the length of time it took to get me in to my Speedos… yes,I still look good in a banana hammock! Seriously though, we do not know yet when the article is to run, but when we know, you’ll know.
©2009 Mark Pinder
Good afternoon all,
Thank you for the multitude of encouraging comments posted regarding our special visitor yesterday. The common theme seemed to be seething envy! It was a boyhood dream for me too!
Obviously, yesterday’s post is impossible to follow with any of our daily news. Therefore, today’s edition isn’t news but an appeal. We would like to ask all of our readers and all of their friends, plus anyone their friends know, to help both ourselves and the Motor Neurone Disease Association in our search for prominent public figures who would be willing to lend their support to raising awareness of the condition. It is important that any suggestions you may have are either directly connected to you and/or have previously been touched by MND; this is simply to avoid “cold calling” and to ensure that said public figure is willing and appropriate.
We will be back tomorrow with more news when the excitement of yesterday has simmered down! In the meantime, we would be very grateful if you can don your thinking caps and help us raise the profile of the MNDA to greater heights.
Neil wrote this post in response to feedback from the MND Association about Savile’s visit. I had already been in discussion with them and I knew that any celebrities linked to the charity should really have a strong personal connection to the disease, making them much more qualified to talk about it. Celebrity charity endorsement is a complicated job.
For those of you reading from outside of the UK, Jimmy Savile was a DJ and television presenter who was first awarded an OBE and eventually a knighthood for his charity fundraising work.
Many people of a similar age to Neil and myself remembered with affection from our childhood, as you will see from the comments that came in after this was posted. He presented a children’s television programme called ‘Jim’ll Fix It’, which invited children to write down a wish in a letter to Jim and he would ‘fix it’ that their wish would come true.
He died in October 2011, and a year later, in November 2012, came the first allegations that grew to Savile now being believed to be Britain’s most prolific child sex offender with over 300 potential victims.
Nobody knew about this at the time when Neil wrote the following post in 2009. – Louise (2013)
Interesting…an interesting day it has been indeed my friends,
As if in answer to my moans and groans of yesterday, today has been anything but dull. For a couple of hours this afternoon we were delighted to receive a visit from Sir Jimmy Savile himself! That’s right, the legendary knight of the realm has agreed to lend his weight and influence to our cause. Whilst the unsurprisingly informal visit yielded a great deal of humour, we spoke at length about motor neurone disease and the difficulties faced in raising awareness. But the veteran charity supporter also agreed to consider ways in which he may help us and allowed us to take several photographs to use as we wish; one of these is included below for your green-eyed admiration!
We obviously would like to thank Sir Jimmy sincerely for not only giving us his time, but also for his help in tackling the most difficult “fix it” of all time; our ultimate aim of finding a cure for motor neurone disease.
It has been extremely quiet day in both the real and virtual worlds. As a result, I have had nothing to do but think.
In the real world, for no apparent reason, I thought about my death and whether or not it held any fear for me; especially when you consider the advance notice that I have been given, it isn’t as if I have just been told I’ve got a week to live. Nor is it that I haven’t thought about it at length before now. I have decided that no matter how prepared I am, it is human nature to fear the unknown and so yes, I fear it.
The surprising thing, actually maybe it isn’t that surprising, is that my biggest fear is for the future. Not my own but that of those closest to me, my wife and son, my mum, my brother and dearest friends. I am terrified, blowing my own trumpet it may be, that my demise renders them somehow disadvantaged to live their own lives to the fullest. I will say here and now that I do not want any of them to hesitate, to compromise their lives in any way, because of a memory of me (I know this sentiment is often stated at funerals by people who wouldn’t know any better, but I am alive and of sound mind and body and I mean it). There, that’s enough of that.
Good evening everybody,
I hope you had a great weekend, I know we did. Our friends returned to London this afternoon and since then we have sat around in the lounge watching Oscar play and half-watching a film. I’m going to keep today’s post brief as I think I have talked myself out over the last 24 hours.
Seeing Stephen, Alison and Rick was a real tonic and swept away the grey clouds for a while. There was so much fun in watching Oscar chase them around the house squealing with delight. He really enjoyed the rough and tumble they provided although we are unsure who was tired out first.
I’m not sure if you have seen it, but we all sat and watched Borat last night. Whilst we all found it very funny, it is definitely not for the faint of heart. Unfortunately, the wonderful lady who looks after me throughout the night arrived to find us all in fits of laughter, as two hairy men wrestled naked around a hotel room! Sorry Pat!
No this is not a joke, it really happened. Hi all,
Last night, as Rosie and I sat in the lounge watching TV and Louise sat at the computer in the kitchen, we heard three definite knocks at the patio doors. These were followed by a series of other knocks of varying intensity. Some were so loud that Louise came through from the kitchen. We all looked at each other, clearly concerned about who would be at the back of our house at 1030 at night. Louise’s mum crossed the room and parted the curtains to see nothing but an empty garden covered in snow. The knocking came again but this time we identified the source, simply distant fireworks echoing through the night.
For the first time I realised something. I realised how weak and vulnerable I was. That despite the power of my voice, which I wield like a sword making requests, barking orders or cutting down any opposition to my arguments, I would only be able to blink in defence of my family against the real and dangerous things the outside world contains. I felt as defenceless as an infant. It was a truly horrible feeling. Since Louise and I have been a couple, it has been instinctive to me to protect her (even before this when we used to cry on each other’s shoulders over the latest relationship disaster), and losing the ability to do this has come crashing down on me like a tonne of anything.