Fundraising efforts by readers of our blog and now The Yorkshire post are gathering momentum and as such I would like to say a few thankyous.
The week just gone has seen a number of ups and downs but I’ll concentrate on a really big up in this post so that everyone who is really interested gets to see it.
You may remember a while back our mentioning to you that we were launching a campaign to raise awareness and hopefully funds to further the cause of finding a cure for MND. We are delighted to say that the campaign has started with our first interview and photographs being published in the Yorkshire Post.
Sorry everybody, it’s been nearly two weeks since my last post again. This is in part due to technical failure of our Internet connection, in part due to being very busy with visitors and also the advancing of our crusade. I have lots to tell you and will have to do this over two or three posts but obviously I will link them together in the lyrical fashion with which you have all become so familiar.
Through our requests on the blog you have provided us with a number of avenues that we are pursuing to publicise our story and raise awareness of MND. We are working with the MND Association as well as seeking our own access to the various media formats. We are pleased to say that in the last fortnight we have had an interview and photographs for a piece in the Yorkshire Post, we will let you all know the date the article will run. The MND Association have also published a press release which we hope will generate further interest.
Hi everybody, it’s great to be back home after two and a bit weeks in the hospice. My stay was comfortable and had perks such as reflexology, head massage and Reiki, but most importantly I had access to a bath. I would like to say thank you to the staff at St Michaels who took such good care of me.
But there is no place like home, particularly when it comes to watching Oscar who is growing ever more rapidly. A huge smile comes to my face every time he comes into the room, which is now more often than not under his own steam.
I will write more over the next few days but it may interest you to know briefly that we have hopefully resolved the Advanced Directive issue positively, more details to follow so watch this space.
Imagine if you’ve had nothing but bed baths for weeks, imagine how you would feel to be submerged in water and feel weightless when you’ve been unable to lift your limbs. It was a great luxury for Neil and really lifted his spirits.
It took four of us to move him from his room. We had to have him undressed and ready to be lowered into the water, then put the sling around him for the hoist (which can’t have been comfortable for him naked) then we had to carefully position a towel to protect his dignity for the journey from his room to the bathroom.
I would like everyone to take a few minutes to link to the South Pole 2008 expedition being undertaken by Doug Oppenheim and Jeremy Rogers. Today is the day they leave.
Throughout all of the pain of the last few months, one of the most upsetting things is knowing that there still a lack of awareness and understanding of MND and exactly how destructive it is, not only for the sufferer, but all those around them.
It’s the disease that most health professionals say they’d least like to get. It’s the most cruel and undignified end.
It has been explained to us that part of the problem in funding research for MND is that it’s not financially enticing to the drugs companies as life expectancy is, on average, just two to five years from onset and it is in every case fatal. So, to me, it literally feels like someone is putting a price on my husband and son’s lives.
Doug and Jeremy asked us to write a short case study for them to help in their fundraising efforts for the Sheffield Institute of Translational Neuroscience (SITraN), and we were only too happy to share our story. It actually felt like we could do something to contribute to finding a cure and alleviate some of the frustration. The Sheffield Institute will be the world’s first standalone institute dedicated to MND, so it is very important to us to help get it off the ground.
There’s been so much that I've wanted to write recently, but not got round to it. I've been taking some photos around the house for some time now, and meaning to post them, as I think they can say a lot, whereas, I just don’t have the time or energy.
Some of these photos seem so old now. I just wanted to share them as I think they best describe some emotions which are unimaginable to most.
Daily Meds. Don't underestimate the straws.
Thank you all for your responses to my earlier posts, particularly the ones regarding the Advanced Directive debate.
I have been thinking about this and all the other associated issues quite a lot over the past week as I have had an unusual amount of time on my hands. The reason for this is that last Friday I was kicked out of home and left to free-wheel down Forest Lane until I was taken pity on by the driver of a flatbed truck who craned me onto the back and kindly dropped me off at the local Salvation Army.
Hi everybody, you may remember a few days ago I was talking to you about the joyous tasks we have been having to perform. Things like the preparation of my Advanced Directive.
To the benefit of anyone who may find themselves in my position, I hope therefore this applies to very few, I would like to explain where I found myself just a few days ago.
The original Advanced Directive was prepared in the presence of Louise, my brother Matthew, my mum Lynne and my GP. The document confirms my request that when I become unable to speak or swallow, I wish to have the mask-type positive pressure ventilation I am currently using removed. It also confirms my wish not to be resuscitated under any circumstances from the date of the Directive. My GP retained a copy of the Directive for their review.
Everyone at that meeting understood that this course of action would lead to the least possible amount of distress and would without doubt be in my best interest.
Twice in as many days, blimey. Not much by way of news since yesterday so I thought I might as well use the time to launch the crusade.
We want to sell… oops… er… I mean tell our story to a much wider audience in the hope that the more people hear about it, the more people may want to get involved in trying to stop it happening to anyone else. We were thinking of using local and national newspapers, TV and radio as well as this blog which is obviously global.
I hope that you guys might have some ideas as to how I might do this or better still some contacts within the industry who might be able to move something forward. As I am sure you will gather time is of the essence so get those replies coming... no pressure!
I can’t believe how lax we've been, given the date of the last entry on Plattitude. So if I'm actually writing this message to myself, given that all of you kind readers have given up and gone home, I completely understand. It has however been a really busy six weeks. I'll try and fill you in but please ask if you think there’s a gap in the tale.
My condition continues to be a royal pain in the arse and advances steadily. There appears to have been a let-up in the last few weeks in the disease’s progress, and I now find myself stable but completely immobile bar a slight movement in my fingers, my neck muscles are weakening, and I am permanently attached to a positive pressure ventilator. In actual fact most of you will probably already know this as you will be one of the beautiful people who have either been to see me socially or joined the merry band who look after me. As for the rest of you, the calendar is looking a little bare so please phone in for your shift! (Kidding.) Seriously though, the problem with the ventilator and all the other bits of kit I need, leaving the house is already a major undertaking and becomes more so all the time so I would be delighted to see all of our friends and family visiting as much as possible as I unfortunately cannot come to you.
Other than spending time with our loved ones, I've had a very challenging few weeks trying to write a letter to Oscar, put together a memory box for him and make some very difficult decisions regarding the end of my life. I also had a fun afternoon planning the funeral – no sarcasm, honestly.
This was the start of Neil putting his mind to fundraising as others had kindly begun to do it on his behalf. I think he realised the blog was his voice and although his body was confined to a chair, he could do a lot with his voice. – Louise (2013)
Hi everybody. I meant to mention yesterday the fantastic efforts of Megan/Sas and Sara in their fundraising for the MND Association. Megan's sponsored waddle has been amazingly successful, as has Sara's 'Knocking-on-a-bit' for charity! Thanks very much to both of you from me as someone who benefits from the invaluable help the association provides.
This is the first post from Neil where he discusses dying and thinking of Oscar in the future. You can tell how much having friends around lifted Neil's spirits, and perhaps this was why he felt able to bring it up. – Louise (2013)
I return as promised! Alas, much like Louise, I'm having difficulty in figuring out where to start as so much has changed since I last wrote (21st July).
Louise's most recent posts seem to cover the physical progression pretty well, and I don’t particularly feel the need to go into any more gory details. Given that I don’t know where to start, I'll start with yesterday:
Hi everybody, it’s Neil eventually. Sorry I've not added to the blog for ages, but I have been holding interviews to try and find a suitable secretary. This is a quick note following Oscar's massively successful First Birthday party last weekend. Louise, Oscar and I would like to say a heartfelt thank you to everybody for all their help, gifts and giggles, we had an amazing day. We would be grateful if you could send us any photographs you might have taken.
I hope to do another post over the weekend, so speak to you soon…
You can see from these photos the speed at which MND was ripping through Neil. If you look back to the photos at his own birthday, not two months before, the difference is frightening.
The palliative care ladies arranged to come in on a Saturday for us, to help get Neil ready for Oscar's party, and as I opened the door in the morning and saw one of them holding a big '1'-shaped balloon, she took a look at my face and said: "Come on, you can do it, you'll be fine." I think that was the first time I cried in front of them.
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.
It’s 3 o'clock in the afternoon and I have managed to get both Oscar and Neil to have a nap. I have a baby monitor and a walkie talkie with me. I was reminded yesterday morning, of the many parallels between the two of them is, for want of a better word, their 'progression'. As I was feeding Oscar his morning Weetabix, he decided that I was being a bit slow, so worked out that he should just grab the spoon and feed himself. Two days before, Neil stopped struggling to hold his fork in his bad hand and lift it to his mouth with his good hand. The effort was just making him exhausted, and resulted in him losing his appetite.
At the stage where Neil was able to walk with crutches, Oscar was just beginning to try to crawl and then when the wheelchair arrived, so did the baby walker. I also remember the day Neil and his brother Matt were learning how to use the hoist, Oscar was standing up holding the edge of his playpen for the first time, right next to them.
Sorry, this has to be very brief, as it’s late at night and I don’t get enough sleep as it is! Just wanted to drop a quick explanation as to why you’ve not heard anything recently.
Unfortunately, Neil has now lost the ability to type. He is still able to write via some very clever voice recognition software, but in order for this to work, he needs the house to be quiet! This is impossible…
The last thing I had time for was writing a post on the blog, but Neil wanted me to put something down because people were starting to become anxious that they hadn't heard from us. I was too exhausted to write more than this, but I feel I can’t just say that without painting a bit of a picture as to why.
There’s not really much I feel I should add to this post, other than explain that Neil had been pushing at me to join in the blog. I still can’t read this one without tears, perhaps because I know I was finally giving in to writing it as a result of being angry at Neil for ‘sugaring the pill’ with the joviality of previous posts and when I read this back I'm hearing myself cry for help. – Louise (2013)
Hi, I'm Louise, this is my first post for The Plattitude… as you can imagine, after Neil and Oscar, there's not much of my time left to sit down and write!
As Neil is explaining all the physical effects of MND, I thought I would concentrate on the emotional side. Rather than catching you up to this point, I want to share one of my strongest 'outpours' that happened one morning. Unfortunately, I couldn't think of a better place to send my ‘outpour’ than the Jeremy Vine show on Radio 2, where it was thereupon ignored. I promise to think of a better forum next time! Please read on…
The introduction of the walking stick was the first major step change. Whilst it obviously added a somewhat dapper air to my character, it very soon became a pain in the arse! My manly gait was reduced to a waddle in about two months as the muscles around my hips and legs weakened, definitely more Penguin than my former Batman at this point!
Just to let you know that in addition to the bed rail, the raised loo seat, the grab rails and the bath lift, we now have a full-on hoist thingy to help get me in and out of chairs/bed/sofa!!
We are being accessorised to the nines here!
Equipment was taking over the house, and I'm not sure whose shouting was the loudest, Neil's or Oscar's.
Baby equipment was welcome, unlike the depressing bits of mobility gear that kept arriving for Neil. Both lots of equipment designed for physical progression, but sadly, in opposite directions.
Hi everyone. So now we’re sitting comfortably, I’ll give you an abridged version of our tale to date. Louise and I married in 2004, spent a few years getting drunk before having Oscar in August 2007. What a milestone that was, and as we were duly warned our lives changed overnight, for the better I might add!
The following months were blissful as we got to know our little boy. The enjoyment was made all the keener by the fact that Oscar had to be delivered by emergency caesarean section at the end of a traumatic night in labour.
Then on a work visit to Manchester at the end of October 2007, I noticed that my right foot was slapping on the floor when I walked. I thought maybe a new pair of shoes was in order so didn't pay it much attention. A few days later though, sitting barefoot at home and flexing my toes, I realised that the toes on my right foot couldn't move as much. At the same time, the thought of MND entered my mind.