Dear Neil

The following was written at the request of a national red top about a month ago. It was requested, then rejected as not the correct way in to our story. They wanted a ‘Save our Son’. The physical horror of MND combined with the lack of research funding was not deemed sensational enough.

I wanted to share this with the people who understand.

Dear Neil,

The day is coming nearer and nearer that will mark a year since you were forced to leave us. But you have not left us, and never will. Your bravery and humour during the worst imaginable months has brought us all a bond that is impossible to break. Oscar and I are supported so well by so many, I know that looking after us was your most hated part of having to let go. I hope you can see that we’re doing ok, and not to worry if you see me crying still, it’s only because I am remembering you.

You are still in our thoughts for so much of the day, some thoughts are welcome and some I wish I had no memory of. Most days I miss you because there is no coming home time, no chance for me to tell you about our day, what’s made Oscar laugh, what’s made him cry, new words or a lost toy found. There’s no hug for me at the end of a day of tantrums, no fresh face through the door to light him up like you used to for those four beautiful months before the first signs of any illness. He wakes me in the morning so full of energy, running toward whatever life has in store for him, and it fills me with memories of how you were before the wheelchair.

His favourite shout of the moment is ‘I did it!’ I wish you could see, the look in his eyes as he grabs my hand and pulls me with all his strength toward a scribble on a page or all his favourite cars lined up in a perfect row. I can still see you telling me ‘I can’t do it’. It’s there when I see him pick up a pencil or put a spoon to his mouth. I’m sorry, I know it’s not how you want me to remember you and it’s the last thing you would ever have said when choice was a part of your life, but I find myself holding on to any memory that lets me see your face. He insists on doing everything for himself now, it is both amazing and frustrating to watch him try. I now have to step back to give him encouragement, where I had to step forward to give you help. These parallels have not stopped. I am still lifting, bathing, dressing, feeding and wiping away tears, but these chores are now only part of motherly love and I no longer perform them with sadness and loss.

His time is filled with creating such mischief, and so cleverly worked out that it makes me wonder if you are whispering in his ear. I’m still truly sad we couldn’t give him a sibling to annoy with such a mischievous mind. You and he share almost identical choices with strategically placed cuddles for both devilment and gain. I’ve lost count of how many cuddles have left some of the lunch from his sticky little fingers on my clothes before I can wipe them, or are used as a vehicle to get nearer the biscuit tin, but he gives just as many real ones too. I remember when you could no longer give a hug and had to ask for one instead. I would lift your arm and wrap it around me for you, the saddest indignity of it all.

His hair is so beautiful. I remember sitting him on your knee, lifting your hand up to touch his hair, and how sad you were that it felt so rough to the touch of your hands with skin that had become as soft as a baby’s. I took some scissors to his fringe the other day, and there were your eyes. They usually look like mine until the thick brow is exposed, then for a few weeks it’s all you. They’re beautiful and they’re both his friend and enemy, getting him as many times on the naughty step as they get him off, and they are always betrayed by the curl at the edge of his mouth that gives away his true intentions, just like you. You would be very proud, and I have no doubt that his eyes would get the better of you though, and I would still be the one having to dish out the discipline all by myself if you were with us today. It’s difficult when they’re looking at me with fearful tears as I leave his bedroom, they are the same fearful tears I had to wipe from your face as you told us it was time for you to leave. I’ll never forget them.

I want you to know that parts our day have not changed, and I love that it makes me feel like you’re still sharing them with us. He still throws some of his breakfast on the floor, still spends a lot of time playing with toy cars, is still fighting with me about getting in the car seat, ‘No!’ is still one of his favourite words, and Iggle Piggle is still dancing around as we eat dinner. Best of all, he still gets the book you used to read to him every night till you ran out of breath. It’s one of his favourites. Strangely, he still kisses everyone on the forehead as he did to you, when the ventilator mask came between you. I’m sure he’ll sort it out before he starts kissing the girls.

Many have asked me how I cope, and the answer is very simple to me. I still feel loved. It is not choice behind the reason that you are not with us any longer. I just wish that you had not had to suffer the most torturous and undignified death. I’m carrying on your fight for better awareness of Motor Neurone Disease, and I hate that, because I too would rather not know that something so terrifying and cruel exists. I too would like to bury my head in the sand and take back the knowledge that there is such little research funding for something that can so quickly take a fit, healthy person and reduce them to nothing more than a body kept alive with no movement other than their eyes, frozen alive but with feeling in every nerve ending so that you can’t even escape an itch, feeling the weight of your body bearing down on limbs that can not move, aching with pain, and a mind untouched, left to work overtime. How am I to forget this?

I’m not sure how much longer I can carry on the fight. Knowing that you had a rare familial strain is what keeps me fighting now, but how much longer before he starts to ask questions and my time is up? I refuse to bring him up with fear. I don’t want Motor Neurone Disease bearing down on his shoulders. You didn’t live your life that way and you only have to watch him for five minutes to know that he has your lust for life and cheeky little spirit. He kisses your picture every night before bed and quite often tells me that you are ‘so happy’. Occasionally he tells me you’re ‘cute’. Stay in him.

I will love you and think of you always.

Video Footage Please

Some of you may be aware that Louise and Neil started making a film to document the impact that MND was having on their lives. Work on the documentary is on-going but what we really need is some video footage of Neil from before he was diagnosed. If any of you have any video footage could you please let us know….. you never know, your camera skills could be on the telly!!

Thanks

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,

Louise

Thank you for the flowers

Louise has asked me to thank everyone who has sent flowers, they have helped to brighten what is otherwise a very dark time.

Given the number of people who have been following their story, the house is starting to fill up quite quickly and Louise has asked that anyone wanting to send a tribute make a donation to the just giving site which has been set up in Neil’s memory at www.justgiving.com/plattitude.

Thank you,
Douglas
(Louise’s Brother).

Commencement, ‘The end of one thing and the begining of another’.

It is in a cloud of emotions I write this 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 Neils life.

It is with a very numb feeling I tell all of you that have been so caring and supportive that Neil past away at 11:15 a.m. today.

My very brave brother was calm and at peace when he past away, yet this was far away from what he endured in the last 5 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 has left a huge void in so many of our lives. Please take with you the reason for this is that his amazing character couldn’t help but leave an impression and his passion for life always outweighed whatever he would have had to go through at his end.

With the end of Neils life now here it is, as it has been all the way through, in Stark contrast the beginning of his son Oscar’s life. It is at this point I feel it poignant to remind everyone the reason Neil and Louise began this very publicised journey. That is to raise awareness of this forgotten illness and fight to find a cure for not only Oscar but any other person who may one day have to face this.

As a final word on behalf of all Neil’s family I would like to thank all his nursing staff, doctors and family and friends, and all the people that extended Neil the best emotional relief he could have been given, that was your kind words and love.

love as always

Neils family x

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

Still at home

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.

Wuthering Heights?

Evening all,

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.

At present, there is little other news from the Platt household. However as promised, I have tried to attach a short amount of Oscar footage to this post for your amusement. Unfortunately, due to a technical problem I had been unable to do this. I have also managed not to attach a recording of my reading an entry so that all of those strangers reading our blog have more of an idea about me. You would have also been able to hear the ventilator in the background, which is also responsible for the strange sentence structure and guttural noises. I hope to have some Oscar footage when I have managed to get it off the DVD, and ditto for the recording when I’ve resolved some of the user interface errors!

I hope we all have a restful night. Until tomorrow,

All my love,

Neil x

Time at the bar ladies and gentlemen..

… well to be completely frank, we are probably well into our metaphorical 20 minutes drinking up time.

Hello everybody,

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.

Our incredibly helpful District Nurse, Liz, has come up with all manner of solutions. She has suggested that I have a syringe driver fitted in order to overcome the need for oral medication. She has also considered sub-cutanious fluids to prevent my dehydration. We also reviewed the possibility of going into the hospice for a while. It may interest you to know my thoughts on the above, as discussed this afternoon in the presence of Louise, Matthew and Liz; I was my usual bullheaded self, without interruption, at every potential solution-so first I apologise to all present, their efforts are hugely appreciated.

My view is that if I can no longer swallow any medication, nor can I consume any food or drink. At this junction, I have requested the provision of IV fluids to prevent dehydration. My Advanced Directive states, and this holds true today, that I will not accept any artificial forms of nourishment. The reason for this is that it is highly likely that my inability to swallow will be rapidly followed by an inability to form understandable words. It is my ability to fully participate, as far as my physical disability allows, that defines my quality of life. The inability to speak would drag that quality to a level which I could never tolerate. As soon as my speech becomes unintelligible, I will accept the offer of the hospice-this visit, unlike the first but similar to the last, will be for the purposes of switching off the ventilator as required by my Advanced Directive. In the meantime, swallow intact or not, until my speech leaves me I want nothing more than to be with my family and friends.

I have no idea how much time I have left, nor any idea of how many times Louise is going to have to act as typist. Until then, it is my intention to carry on doing what we do to the best of my ability.

I will try to upload footage of Oscar tomorrow, hopefully on the back of a day less bleak in it’s outlook.

All my love to every one of my family’s supporters, wherever you are.

Neil x

Till Tomorrow

Hi,

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,

Till tomorrow

Louise x