It’s not my arms or legs, my strength or mobility, my independence or going outside, my career or playing guitar, the pub or a dinner party. Shall I give you a clue? It is able to console far better than a sympathetic ear. It is able to express love better than roses. It is able to show friendship better than a wristband. Any ideas yet? As a greeting, it is superior to a handshake and is the fondest way to say farewell. That’s right. So simple. A hug. I miss the ability to give (and receive to a certain extent) a hug. I think I used to be good at it too.
And I’m sure it does.
Hey there everyone,
My own experience tells me that without the goodwill of my loved ones, it’s highly likely that I would have succumbed to my condition a considerable time ago. It is only with their support and encouragement that I am galvanised into action every day with positivity, without it I honestly think that the frustration and disappointment would better me into submission.
My auntie Margaret is now settled on the stroke ward of Dewsbury Hospital and I understand that she will undergo further tests tomorrow. As yet, no news is good news. I also believe that she questioned the need to go to hospital in the first place, such is the mettle of the Smiths (my mum’s family). My mum will be visiting her around about now and will be keeping us posted over the next day or two.
As our thoughts are with my auntie, uncle, cousin and my mum’s family tonight, I will catch you up on our news and trivia another time. We have everything crossed for you auntie Margaret.
All our love,
Neil, Louise and Oscar xxx
So cruel is motor neurone disease that it is not instantly recognisable. Unfortunately, Auntie Margaret went through misdiagnoses of mini strokes and multiple sclerosis – before the devastating news that she was suffering from motor neurone disease.
I know it’s early in the day for a post, but I’m beginning to think that someone somewhere has got it in for my clan. First, I get struck down by motor neurone disease at the most precious time of my life. Secondly, my cousin Timothy died absolutely without warning of a brain haemorrhage late last year. Thirdly, my auntie Margaret (mother to Timothy and sister to my mum) has this morning been admitted to hospital after suffering stroke-like symptoms thought initially to be transient ischemic attacks. It appeared that is not the case and she now has to undergo further tests over the next three or four days.
My mum is obviously worried about her sister. Just as I am extremely concerned for the welfare of my mum. A camel can carry a great number of straws, but I’m not sure how far off the last straw our camel is.
This is the kind of thing I’ve found myself doing lately … complaint letters! I’ve just realised that it’s my own form of primal screaming! In fact, I don’t think I’ve ever complained in writing before, but this last year, since Neil was diagnosed, I can remember writing at least five. How very ‘British’ of me!
I’ve accompanied ‘Dear Refuse Collectors’ with a box of chocolates as I remember it working on myself and a flatmate when we received ‘To the Noisy Girls Upstairs’.
We still have a Winter Wonderland here. I am rather pleased to report that someone must have been out with a metaphorical pooper-scooper overnight as some of the problems described yesterday have eased somewhat. Most importantly, my swallow seems to have recovered to almost its previous strength although I am now probably super cautious about what I eat and drink. However when sat watching an episode of Green Wing with Louise I had a really intense craving for crisps, not very helpful I know!
Whilst last night was far from settled, I had a couple of extra hours in bed this morning which has left me feeling less fatigued. I’m not sure if the extra sleep is a result of being so tired or the fact that we had to crack into our rescue drug, a form of morphine. This was required to treat a recurring and unusual symptom. Generally what happens is that throughout my extremities I can feel a tremble which proceeds through the length of my arms and legs and up my torso. The strange thing is that this tremble is not manifested physically but must simply be a memory of movement. This is then physically manifested as a powerful and uncontrollable shudder through my neck and jaw which clenches tightly shut. I can only liken it to when you bend down and try to lift something very heavy, like a car! This can and often does last for a number of hours making sleep impossible, until it either subsides on its own or I succumb to the sedatives, as was the case last night.
I thought it might be worth telling you about some of the more unusual symptoms I have experienced. I am sure that these are not unique to motor neurone disease and are suffered by many paralysed people. Often times as I sit in my chair, I can feel my feet swinging back and forth below me when clearly they are firmly planted in the foot rest. On one occasion, I was sat in my chair with the computer on a table cantilevered over me. Louise was operating the laptop using the little tablet to control the mouse and I could feel in the tip of my index finger every time she moved her’s; every motion and even when her finger ran into the raised edges of the tablet.
Grab your hats and gloves you lot!
I don’t know what it’s like where you are, but here in North Yorkshire it’s white all over. The view from my bedroom window is truly like a picture postcard.
That view has given me much enjoyment throughout the course of the day as I decided to stay in bed. Firstly because we rang the palliative care team and told them not to bother attending to us, which would involve tackling the very narrow dirt track road leading to our house. Secondly, because I think there is something inherently brilliant about being snuggled up under a duvet whilst looking out upon a cold, crisp winter’s day.
I lay here still.
I would just like to point out that this weekend's tsunami (see previous post) was not one of the husband-and-wife variety. But as hardy as I am to coping with already troubled waters, some things still make me seasick.
Speaking of which, we’ve been meaning for a while now to talk about the subject of arguing and bickering!
We are contacted a lot by people in a similar position, and the more ‘wonderful couple’ and ‘inspirational couple’ comments we receive, the more guilty I feel about not having talked about it earlier! Yes, we are coping the best we can with the most sense of humour we can muster up, but some days are just phenomenally difficult to get through from start to finish.
It certainly feels like it has been and it has left me thoroughly exhausted. You will know about tsunamis from our earlier posts, well, one has passed through this weekend. All is well now so you needn’t worry about any of us. I am however too tired to write the usual witty prose and simply dropped in to let you know that I’m still here!
Another strange British superstition which was passed on to me by my mum, along with the thing about magpies, black cats and ladders. But the title of this post when uttered before any other word on the first day of each month bestows upon you good fortune for the rest of that month. I have secretly been mumbling this bonkers phrase for some months now and I will stand beside myself in amazement if it doesn’t seem to be working! Here we are at the end of another month and I’m still here! Delighted I am too as I have had yet another very pleasant day. When Louise commented that she didn’t know how I was doing it, I told her that she was primarily responsible and also referred her to yesterday’s post.
Good evening everyone,
I hope you’re all in fine fettle this eve and doing whatever it is that you enjoy doing on a Friday night. I am at present lying in bed rifling through an ever-increasing number of comments that you kindly bestow upon The Plattitude. I am so delighted to hear from some very old friends and only wish that I had the breath to respond to every one of you individually. But I don’t so Lindsay, Matthew, Mark, Kathy, Neil, Ricky, Vicky, Danny, Brenda and Mandy, plus anyone my drug-addled brain has overlooked, it’s great to be back in touch regardless of the circumstances. The great thing is that, in some cases, old friends are getting back in touch with one another via the blog, and I cannot think of a greater legacy for it.
I have been lying in bed since about five o’clock this afternoon because I had to see a man about a wallaby. Trouble is that the Wallaby didn’t materialise if you catch my drift. Without being too graphic, I really miss the muscles that let you “push”! So, I decided to wait patiently in comfort rather than “hang around” in the hoist hoping for gravity to assist!
Good afternoon all,
I am speaking to you directly via the computer today, so hopefully there will be fewer interruptions and less backchat than when I use the wife/typist! She’s a good girl really and she is right about the tsunamis that occur occasionally in the otherwise still waters of our relationship caused by the current predicament. I will however leave it to Louise to tell you about these as I feel she is far better placed to do so, also if I tell you then every dispute will obviously be her fault!
Hi there everybody,
Just reaching the end of what feels like a very long day, so I’m sure you’ll all understand if me and my typist (hello, it’s Louise, this is the first time I’m doing his secretarial since he was paying me for it and I’m not happy) keep things brief.
I’ll tell you the tale of this morning’s events (he’s picking on my typing skills) and my return home in detail tomorrow, but suffice to say that anything I felt compares nothing at all to spending four hours watching my son play. This was swiftly followed by a real round the kitchen table family dinner (he’s doing it again) and topped off with Oscar sitting on my knee for bedtime milk. It’s difficult to explain but if I went in my sleep tonight, I would feel as though I had achieved everything I ever wanted, save for the minor inconvenience of having to communicate it through my wife instead of my computer (some time soon I will be writing a post about how living through this does cause a lot of bickering).
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.
Hi guys and girls,
Woke up this morning feeling extremely tired, I can only attribute this to the weekend’s excitement. I had hoped as the day progressed I would become less tired, alas this is not the case. So rather than try and make something interesting out of a particularly dull day, I think I will conserve my strength and bits of news until tomorrow.
Hi there everybody,
Well, we’re coming to the end of the weekend and what has been a particularly lazy Sunday. In fact, I have still to move from my bed. Nevertheless I am clean and contented as I lay back and think, no not of England, but of my visitors of the last few days in particular and of my friends in general.
I am afraid this evening’s post will have to be a quick one. The main reason being that I have had visits from my good friends Rick and Lisa who had travelled up for a quick day return from the south coast, their visit was swiftly followed by another from Cash and Scooby. As a result, I am all talked out.
But I thought I’d quickly let you know that Louise and Oscar's house hunting was rather successful and so hopefully that’s another problem solved before it became a problem.
That’s right, I’m clean again following yet another wonderful bath. Nothing to report on that front save to say that Louise and I had another chance to talk a little more. Talking of Louise, she is as we speak on her way to Scotland with Oscar. The purpose of their visit is to have a look at a cottage she has seen in a small village in Fife with a view to buying it as the first stepping stone into her and Oscar’s future. Now it was suggested to me today that this would be difficult for me to stomach. My response to this is simply that I would much rather know where my little family is heading, so I may be secure in that knowledge when the time comes, than not and have to worry and wonder. But each to their own and answers on a postcard.
Hey there everybody,
Apologies for my absence yesterday but, in my own defence, yesterday I did not think there would be a tomorrow. Due to a chain of unforeseen events, the details of which are not important, I genuinely thought I had drawn my last. As a result, yesterday evening and most of today I have been operating at slightly less than full capacity. However, the experience did reveal a few truths which I will share.
My very first thought was that I would not see Louise again and that she would not see me so I could tell her things that I could only tell her. I’m not entirely sure that that sentence makes sense but never mind.
It’s been another day of parallels. I’ve held Oscar as he laughed then cried, and I’ve held Neil as he cried then laughed.
Oscar was at the National Railway Museum, which he loves. Neil was in the hospice, which he slightly less than loves. Oscar laughed as I put the 50 pence piece in the Thomas the Tank Engine ride, then cried when his turn was over and it belonged to someone else. Neil had a vision of his future and it made him cry as he felt his time was running out too. I held his hand and told him that it happens to everyone, and no matter how much he feels like it’s only happening to him, it will eventually be the turn of all of us, and he can cry all he wants. Then it was Oscar that made him laugh.