Not That Unlucky

I'm slightly stuck for words, so much has happened in the last month, but for now we seem to be levelling off again.

Neil's last post listed the latest accessories our home has had to accommodate. That was the 21st of July, just short of a month ago. He mentioned the bed rail. Since then the rail has been and gone, we had an electric mattress raiser for a while, with a 4 inch high pressure foam overlay. He now has a profiling bed, and I have a single bed next to him. It was quite emotional giving up our bed but the benefit is worth it. The night before it arrived, and after waking to move for the eighth time, we were both in tears as we had been trying to find a comfortable position for him to sleep in for over an hour.


The same day the bed arrived, we had to go down to St. James in Leeds to pick up a ventilator. Neil's lung capacity is now down to thirty percent of what it should be and his oxygen saturation level, although fine during the day, was dropping at night. It's a bit like sleeping next to Darth Vader.

Both the bed and the ventilator have made a massive difference to Neil's awake time during the day. The equipment keeps coming, which makes our lives ever more manageable, but none of it compares to the people around us. We have an amazing stream of friends and family, without whom we would find it very difficult to keep going, both physically and emotionally. I can't help thinking that there are many others who are not as lucky as we are.

I can honestly say that this was one of our most difficult and lowest points and I will never be able to express in writing how it felt. Our little unit of three was no more.

Palliative care were brought in to help bathe Neil and get him dressed every weekday morning, and we had been given a night sitter about three nights a week, a nurse who would look after Neil in the bedroom so that I could try to get a good night sleep elsewhere. I know there are others who are not lucky enough to get this service, and were it not for having a baby in the house, I'm not sure we would have been so lucky either.

Without the palliative care team and the night sitters, I couldn't have coped. There were now three extra people a day, doing a job I had previously been doing on my own – by the time they arrived I was on my knees.

The trip to Ikea to buy my single bed was horrible. A trip out was always difficult, my anxiety would rise with every mile I drove further away from Neil, my nerves wouldn't calm down until I had all three of us back together under one roof. Thankfully I had company for this trip, but it was one of the days where I felt self-pity take over as we stopped to feed Oscar and I looked around the café at all the other families.

The journey to the hospital to pick up the ventilator had been upsetting, too. We had really been hoping that we would get to take it home that day, so I was confused when Neil's mood changed as we were waiting for the taxi home. He was normally a little upbeat after hospital appointments – we both were – but he started to get overly annoyed at the taxi being late. When I asked him what was wrong he stared at the road and said: "This is it... the beginning of the endgame."

This photo was taken on the 18th of August, you can see the ventilator pipe on the top of the chair. Neil is laughing because Oscar has discovered pushing the buttons on his recliner chair. – Louise (2013)


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commented 2013-04-11 15:46:04 +0100
Comments on Louise’s original blog post:

August 19, 2008 at 3:12 pm
I agree you’re support team are fantastic. We all feel better to at least be doing something and wish we could do more to help.

Can I say a big thanks to Jill and Matt for letting us have some Mother and Daughter time last week – Louise so much needed a wee break!

Love you all, Rosie

August 20, 2008 at 9:25 am
Hello Louise and Neil,

It has been a while since I have seen you. I was so sad when Douglas told me of Neil’s diagnosis. My Gran had MND.

Your response to it is just inspiring. Your strength and attitude is incredible.

I will keep reading the blog and thinking of you all.

Love Conny

Lisa & Richard Stefanski
August 20, 2008 at 9:45 am
Hi Louise, Neil & Oscar.
So pleased to hear that things are easing up a bit for you all.
We are so looking forward to seeing you again, it must be a couple of years now…
It’s hard to comprehend what has happened.Both Rick and I have spent many hours talking and shedding tears over this unimaginable process that you are dealing with. Being a nurse gives me some insight into what’s happening in your life Neil and I wish I lived closer to support you.There is a holiday home opposite our house which is fully equipped to meet your every need with plenty of space for family to join you if you fancy visiting sunny Bognor!!!Just a thought….
Please continue to be strong. We think of you all every day.
See you soon, Love Lula, Rick & Boys. xxxx

Jane, Iain and Hugo
August 20, 2008 at 10:38 pm
Hi Louise,
Mum told me about your blog yesterday and I haven’t stopped thinking about you all since I read it. I haven’t seen your mum for weeks and my mum has been away so I hadn’t heard how much has happened. You are doing an amazing job and I totally admire how you are all dealing with this heartbreaking situation. You are a wonderful wife and mummy.
I hear you are having a lovely big party to celebrate Oscar’s first birthday. I bet he will have the best cake in town! Hope your mum and dad have plenty of blue and red icing (that’s assuming Igglepiggle features!!)
Love to you all,
Jane, Iain and Hugo xxx

The Nobles
August 20, 2008 at 11:59 pm
Hello you three – just wanted to say that we are all thinking about you and sending our love every day from Pittenweem. We can’t wait to see you all at Oscar’s party and give you all lots of kisses and cuddles. Can I just say Louise that I think you are a star – we are all so proud of you.
Sara and the gang x x

August 21, 2008 at 1:20 pm
Hi there Louise

You dont know me but im a friend of Rhona and Simon. She passed on the address of this website. Your strength has overwhelmed me and my thoughts are with you and your family.


Ben W, Ali P & Darren P
August 21, 2008 at 2:58 pm
Hi Neil,

Some old chums from BLDA here! Firstly, congratulations to you and Louise on little Oscar. Its been too long since we’ve all met up but having read your blog we just wanted say hi and that we’re thinking of you. It’s good to see that you have so many good friends and family around you and that you’re getting accessorised. Please let us know if there is anything we can do.

Best wishes

Ben, Ali and Darren

August 21, 2008 at 3:23 pm
Just a quick note to say that you’re in our thoughts constantly, guys. We’re going to do our damndest to get down to you for Oscar’s birhday. Speak to you soon.

kate & Steve Jenkins
August 22, 2008 at 12:31 pm

Steve and I are really humbled by your strength and overwhelmed with your ability to find humour in these heart-wrenching circumstances. It’s all too often said that we should celebrate every second of our lives, but you two are exceptional in your ability to do just that.

We hope to come to Oscar’s party, Lois has picked out her party shoes already! Please send us your full address.

All our love
Kate, Steve and Lois

The Kays
August 23, 2008 at 6:34 am
Hi Lou, Neil and Oscar! We have been away to Romania so have missed the last couple of entries. But we think about you guys often. Let us know what other non-medical things would make Neil and you more comfortable or help out. Two days and counting to Oscar’s 1st! Kisses and hugs! Michelle, Tony and Maia

The Nobles
August 25, 2008 at 1:25 pm
Hello – Louise and Oscar thank you so much for making the effort to come to Hamish’s party on Saturday, it was wonderful to see you both looking so well. Neil, I am really looking forward to seeing you next weekend – the kids are very excited but hopefully not too excited!! Last but not least – HAPPY BIRTHDAY OSCAR – I can’t believe I have a 1 year old nephew!
Thinking of you always,
Sara & Co. x x

Lisa & Richard Stefanski
August 25, 2008 at 1:40 pm
Hi Guys,

…Just logging on to wish little Oscar a very Happy 1st Birthday!!
Hope all is as well as it can be. See you at the weekend…

Much love,

Rick, Lula & boys xxxx

The Nobles
August 25, 2008 at 5:23 pm
By the way, if anyone feels that they would like to donate to the MND Association – you can click on my link (or Sas’s) at the side of this page where you will be able to make a donation.
Sara x

Gemma, Hugo & Eva
August 25, 2008 at 7:30 pm
Hi Louise, Neil & Oscar,

Just wanted to say a very Happy First Birthday to Oscar. Wow can you believe how quickly that first year has gone and it only seems like yesterday that we were all at NCT classes together. We really miss you guys not being down here and able to join in with our nct get togethers.
I know that we have not known you guys for very long but
we have been so moved by what you are all going through and
wanted to send you all of our love and best wishes. We admire you so much. We have been following your blogg ever since Michelle told us about it and cannot believe how strong you guys are and how lucky to have such an amazing network of friends and family around you. Some people spend there whole lives looking for the strong love and bond that you two have for each other!
Once again I hope that today has been a magical day for you
and that Oscar has been spoilt loads. Please know that you are always in our thoughts.
Love Gemma, Hugo & Eva

The Lawton-Smiths
August 28, 2008 at 10:57 am
Hi Neil, Louise and Oscar,

First of all congratulations on the birth of Oscar! However, Steve told me about the MND and all we can say is that all our thoughts are with you in this difficult time. Please send our love to Neil – his bravery in self evident in his blog and please give him a big hug from me!

Love Kirsten, Christopher, Freddie, Harriet & Pippa x

The Nobles
August 28, 2008 at 11:10 am
Hello Platts – I am just packing up for coming down to Oscar’s party. We have the campsite all booked and I am working on that parcel! Can’t wait to see you all.
Love & Kisses to the three of you, S x x

August 28, 2008 at 12:06 pm
Hello you three – we are getting ourselves organised for our trip to Yorkshire – very exciting!! Hope Oscar enjoyed his birthday. Megan and I enjoyed our walk – especially the bit at the pub where Megan got stuck into a large ice cream in honour of Oscar’s big day x x x See you soon.

September 1, 2008 at 11:29 am
Hello Louise, Neil and Oscar,

Happy Birthday to Oscar!!
Safia has told me a little about what your going through. I can’t imagine how hard it must be and so admire your strength and composure.
We are all thinking about you and sending you our best wishes (and a kiss for Oscar!)
Lots of love,

Danielle (Safia’s friend), Nick, Milo and Cassian xxxx

Ricky Callan
January 20, 2009 at 7:06 pm
Hey Louise!! There’s a saying along the lines of ‘You can tell the true mark of a man/woman, by the people he/she surrounds themselves with’. I’m certain the unconditional love, concern and support your receiving is in return for the same shown by you, Neil and baby Oscar, to the ones YOU love. You reap what you sew. Love always, Ricky x
@breathingfilm tweeted this page. 2013-03-06 16:28:34 +0000
Today's #Plattitude: a new bed arrives for Neil, and Louise feels "like sleeping next to Darth Vader." #MND #ALS
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