Thursday, August 26th 2010

Two nice surprises!

I’ve been feeling really tired and weak lately. It’s been getting harder to wake up in the mornings and even when I am awake I still don’t feel I have that much energy to tackle the day ahead. This morning I felt so tired that I went straight back to bed after all my personal care was done, and in an effort to conserve some energy didn’t get up until midday. It’s the first time since having MND that this has happened. It was probably just as well that I did because my carers and family had arranged a surprise birthday outing to Audleys Wood Hotel for afternoon tea and I was going to need some energy for that. But first they had to get me down the stairs…

Debbie had made arrangements with a private ambulance company to get me down the stairs and up again later in the day. So shortly after midday two very friendly ambulance men from Southern Country Ambulance Service, Darren and Andy, turned up and after having hoisted me onto a stretcher chair, carried me down the stairs. Being the nice guys that they were they even brought my wheelchair down the stairs to save my carers struggling. The last part of their involvement (until I returned home later in the day) was to transfer me from the stretcher chair to my wheelchair where I would sit patiently until the taxi arrived.

In the meantime Debbie had arranged another little surprise for me, and it wasn’t long before there was a knock at the front door and in walks Francesca, who I had not seen for a while, wearing a big smile and bearing a card and present for me! She had taken some time out of her work day to wish me a happy birthday and to see how I was. And so for a short while we were able to enjoy each other’s company and to catch up on what had been happening. I had missed Francesca’s involvement in my care (as well as her friendship, IT support and blog photographer rolls) and it had been a sad day when her other work commitments took over. But here she was with Ann and Debbie and for a brief moment it felt like old times. Well I just couldn’t let the moment go without getting some pictures so here they are…

An unexpected but very pleasant surprise visit from Francesca

With Francesca and happy 🙂

With Debbie and Ann, two of the three architects responsible for my birthday treats (the other being my aunt)

Ann and the birthday boy!

Sometime later a taxi pulled up outside the house to take me to the hotel. Unfortunately despite explaining to the taxi company exactly what sort of wheelchair I had at the time of making the booking (and them saying that they could do it), we soon hit problems. As I was wheeled up the side entry ramp into the taxi I almost had the top of my head chopped off as the taxi driver suddenly realised that I was sitting too tall. So back down the ramp we went and in the process grinding the chair on the pavement. A few adjustments later and I was more reclined in the chair so able to enter the taxi. Unfortunately in this reclined position the wheelchair could not be turned to face the rear seats, and as the taxi driver was quick to point out, without being able to do this he would not be able to take us anywhere. So in the confined interior of the taxi the chair had to be readjusted into an upright position so that it could be spun around and held in position by a safety belt. However, I was now in a very uncomfortable position. My head felt unsupported and liable to topple forwards unless I held it firmly in an upright position, however this meant that the top of my head was then being pressed firmly against the roof of the taxi. Just as well then that we didn’t have to travel that far out of town to reach the hotel because I certainly didn’t feel that safe and it was very uncomfortable. When we arrived at the hotel the taxi driver surprised us with the news that his particular vehicle was being taken off the road at 4 PM and that we would have to contact the booking office after 5 PM to arrange for return transport (never mind the fact that this had already been booked and made clear). Not a good way to start the afternoon.

Audleys Wood Hotel is a 72 bedroom four-star luxury hotel built in the 1880s and recently refurbished. We had to enter via a side entrance as I believe the front entrance isn’t wheelchair friendly. Even so, the corridors leading to the room we had reserved were rather narrow so some expert wheelchair driving was called for! The grand drawing-room where our afternoon tea was served was very ornate with its high ceiling, dark wood panelled walls, a large fireplace, hanging tapestries, a very long wooden table that you would need binoculars to see the end of, and high back padded chairs.

Our traditional afternoon tea arrived with pots of fresh leaf tea and silver trays filled with daintily cut finger sandwiches with various fillings including (of course) cucumber, ham and wholegrain mustard, and egg and cress. This was followed with freshly made (and still hot) scones with strawberry preserve and delicious clotted cream. And to finish off a large assortment of cakes were provided, but by this time I was struggling to find room! My appetite just isn’t the same anymore but hopefully everybody else in our little party had plenty to eat. They certainly seemed to be quite generous with the amount of food being offered but perhaps that was partly down to the fact that we had anticipated more people coming!

Not a great picture technically but one of the few I was able to do anything with from our afternoon spent at Audleys Wood Hotel. Shown here are my brother and his wife, my nephew, my cousin and my aunt and uncle

With my aunt Joan, cousin Suzanne and uncle Alan at Audleys Wood Hotel

When it came time to leave we were in for a shock. The taxi company informed us that they had no suitable vehicles available and were not even prepared to organise alternative transport for us via another company. Eventually Debbie managed to locate another company but it would mean being stuck at the hotel long after we were due to leave and jeopardising our meeting with the ambulance crew who would be getting me back upstairs. In the end it was Alli who saved the day by asking her father (who drives a minibus for disabled children) to come and pick us up. What a lifesaver! Unlike the taxi, this vehicle had a proper tailgate lift that made getting in and out so much easier, as well as a nice high roof and a means of locking the wheelchair to the floor. So I was able to travel home with the back of the wheelchair reclined slightly and feeling a lot more safe and secure. By the time we got back home the ambulance crew were already waiting for us and within a short space of time I was back in the safety of my study.

In the stretcher chair and ready for carrying back upstairs! With Darren and Andy, the friendly ambulance men whose job it was to get me safely up and down the stairs.

So that was it, my afternoon out was over in a flash. I’m sorry that there aren’t more pictures to share. The abysmal weather prevented us from going outside and making use of the grounds, and the inside of the hotel was rather dark (although some might say atmospheric), so my camera struggled to produce good pictures when set to ‘auto everything’ which is the only way that other people will use it.

My thanks to everyone who came along this afternoon. I hope you all enjoyed yourselves. For those who couldn’t make it, please see me after class! Special thanks go to Debbie, Ann and my aunt Joan, who organised the afternoon. Also a special thanks goes to Alli and her father for saving the day! And lastly, thank you Francesca for dropping in this afternoon, I was really happy to see you again.

Mark

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Tuesday, August 24th 2010

50!

Today I celebrate having completed 50 orbits of the sun! smile_party

According to a NASA website the Earth travels about 940 million kilometres a year as it orbits around its parent star. That’s about 584 million miles a year. So in my lifetime I have travelled 47 billion kilometres or 29.2 billion miles. And that doesn’t even include the distance travelled as our solar system moves through the Milky Way Galaxy, or as our galaxy moves through the Universe. Phew! No wonder I feel tired. And yet despite all that travelling I haven’t actually worn out that many pairs of shoes smile_regular.

It’s quite a sobering thought to think that I have now lived for half a century! But the thing is I don’t actually feel anywhere near fifty and yet here I am, a fully paid-up member of the ‘village elder’ club smile_regular! To think, people will now come travelling from far and wide to hear me dish out little nuggets of wisdom like ‘don’t do it’, ‘I wouldn’t if I were you’, ‘it’s not worth it’, ‘think of the consequences’. Or maybe not!

The fact that I was 50 today was kind of hard to ignore as I was wheeled out of my bedroom this morning and along the landing into my study. The route was emblazoned with banners, strings of multicoloured ’50’ numerals and brightly coloured helium balloons! Debbie had been busy last night after I went to bed! I didn’t have the heart to tell them that I was actually 40! Well, 50 is the new 40 as far as I am concerned, he he.

The celebrations kicked off around 11 AM with a surprise visit from Poppy, Ann’s delightful little granddaughter, who came bearing gifts: a very large helium balloon and a delicious looking birthday cake (and I can vouch for the fact that it was delicious because I had several pieces today)! Shortly afterwards we were joined by my aunt and uncle, who I spent an enjoyable morning with opening cards and eating birthday cake. And that is how the day went really with people dropping in during the afternoon and evening with cards and presents… and more balloons. To be honest it was the opportunity to chat and socialise and have company that I enjoyed the most. So thank you to Jim and Val, my friends from Basingstoke NeighbourCare, to my brother Jason and his wife Chery, and to my friendly next door neighbour and his family, all of whom I spent some time with today. And thank you Chris, for the phone call from Scotland! Wish you could have been here today to share it with me.

With Poppy and Ann

With my uncle Alan and aunt Joan

Balloons for sale! Step right up... Anyone you want! 🙂 Anyone would think I've turned 50!

Just a man and his meerkat. One of the presents I received.

With my brother Jason and his wife Chery

With Alli

Because of my love of wildlife, Meerkats being a particular favourite (long before a certain comparison website’s TV adverts), there appeared to be a definite theme running through my presents this year with a Meerkat drinking mug, coasters, and a beautiful photograph printed on fabric that will take pride of place on one of the walls in my extension soon. So thank you to everyone that has been a part of today. It was all very much appreciated.

And finally… one of the more interesting things I received for my birthday was a high-powered microscope smile_wink! At last I would be to keep an eye on those little rascals that are causing me so many problems lately. It even has a built in picture taking mode so I’ve been able to take a few snaps already to see what they’ve been up to. Take a look yourself…

Captured on film and magnified an incredible x20,000. This sub-microscopic shot shows a rare glimpse of Mr Neurone and his fellow neuronettes celebrating my 50th the only way they know how! 🙂

This one amazed even me and I still haven't yet worked out how they managed to achieve it! In a tip of the hat and gaining inspiration from air forces the world over, my naughty little neuronettes have arranged themselves in 'missing muscle formation'. I had to use cutting edge special lighting techniques (i.e. a blue Quality Street wrapper pulled tight across a penlight torch) on my ultra expensive state-of-the-art Fisher-Price microscope to show up this delicate arrangement! 🙂

Mark

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Sunday, August 22nd 2010

End of the week catch up

Okay, it’s time for a bit of a catch up on the day-to-day stuff which has been rather neglected of late as I poured all my energy since leaving the hospice into migrating the blog to its new home. That project is almost complete now and the next step will be to raise the profile of the blog so that it shows up in search engines. My old blog site did very well in Google search and I’m hoping that the new one will fair just as well now that I have registered it. In the meantime it has been encouraging to see that traffic during the first full week has been quite good. It’s certainly nice to see familiar names find their way to the new site! And thank you for all the lovely comments I’ve received lately. They are always very much appreciated.

Aches and pains

I’m starting to get a lot more pain in my arms and shoulders now. In fact it’s even starting to become a problem in my legs and neck. I suspect it’s a combination of disease progression, i.e. muscle wastage, and lack of mobility. After lying in one position all night my muscles simply stiffen up to the point where it is quite painful to be handled. I get the same problem now sitting in a wheelchair all day. In fact when I think of it there is a clean split straight down the middle regarding how I spend my time i.e. 12 hours in bed (not all asleep) and 12 hours in the wheelchair. Perhaps it’s small wonder then that I’m getting so many muscular problems now. I do of course still have some passive physiotherapy exercises performed on me each day but at times it does feel like we’re fighting a losing battle. In fact because my arms have become so immobile now we are repositioning and giving them gentle exercises every couple of hours. It’s a case of three wiggles, two waggles and no woggles! In fact one of the first things you learn in physiotherapy school is to never woggle a client. Can you imagine the headlines if it ever got out: ‘Man found woggled’! smile_regular

A consequence of sitting in a forward facing wheelchair all day is that you tend to look straight ahead for long periods of time. This has the effect of 1) only seeing people as they appear in your field of view, and 2) getting a stiff neck. I’ve started noticing lately that it is becoming a bit painful at times to turn my head through 90° in either direction. Now I have to try and remember to make a concerted effort to move my head from side to side at frequent intervals to alleviate the problem.

The above problems once again show how a lack of regular movement in any particular muscle group soon leads to problems. Just think for a moment how much an able-bodied person will consciously and subconsciously move the various parts of their body during the course of a day. When I think back to all the cycling and walking, the gardening, the DIY and other physical exercises I used to do. Sigh…

One thing I have started to do recently when I’m hoisted up from the bed each morning is to use my legs to swing backwards and forwards as I push against the mattress. My carers thought I was doing it for the fun of it but I’m actually doing it for the exercise and as a last defiant gesture against an unrelenting disease. So for a few minutes each morning I can create this illusion of moving myself as I sway backwards and forwards. And yes it’s fun too! smile_regular

Care package

We’re in high summer and as usual for this time of year my care package is creaking and groaning a bit as various people in the team take their annual holidays. This time round I have the added problem of requiring double ups several times a day and this places a further burden on the care agency to allocate staff. The one person they did allocate to be a regular helper on the double ups has been off more than on lately and at the moment I seem to have an endless stream of strangers coming through the door every couple of evenings. This is far from ideal particularly as it is always at the times when my care is most personal. And to be honest I’m getting really tired of lying half naked and paralysed on my bed whilst yet another perfect stranger stares down at me!

On a far more positive note it was only through this constant stream of new faces was I introduced to a very charming young Nepalese woman who created a big impact with me from the word go with her quick learning, proactive approach to work. Here was someone who was using her initiative rather than standing around waiting to be told every little thing. In many ways she reminded me of the way Francesca used to work, particularly as both of them came to me with very little experience of working in the care industry. I guess with some people it just comes naturally. And like Francesca she has a very friendly and likeable personality that I found myself instantly warming to. As the marketing folks would like to say, she ticks all the right boxes! I’m now keeping my fingers crossed that she can join my care team on a regular basis fingerscrossed.

And lastly, at least on the subject of care, I would like to say a really big thank you to Debbie who has done so much to keep the care package running as smoothly as possible these past couple of weeks. She has amazingly worked 11 consecutive nights, in addition to all the weekday and weekend hours she has done for me, whilst covering for other staff who are on holiday. What a trooper!

A bit of an emergency!

I had a real fright last Friday morning when Ann greeted me by telling me that water was dripping through the kitchen ceiling adjacent to the strip light and pooling on the floor! I’m normally fairly sleepy first thing in the morning but with news like this I immediately pricked up my ears as the one real fear I have is being trapped and paralysed in a burning building. And as we all know water and electricity do not mix!

A quick peek in the airing cupboard directly above the kitchen revealed a wet carpet. This was traced back to a weeping valve controlled by one of the electric zone actuators. Whatever happened must have occurred during the night whilst I was sleeping. I shudder to think what could have happened if the water had found its way into the zone actuator or the strip light.

We tried contacting my local plumber but couldn’t get a response. In the end the solution was much closer to hand. The builders working just outside in the garden were able to contact a plumber they use and who subsequently turned up at the door within the hour, identified what needed to be done, went away to get some parts, drained the system down, replaced the parts, refilled the system and had everything working again by lunchtime. Although it was only one of the valves which had failed I decided to have them both replaced as they were both the same age. I figured it was only a matter of time before the other one went anyway.

* * *

And finally just before I sign off I would like to say thank you to my friends Bill and Kim from Eli Lilly who have both sent me some very nice e-mail letters lately. They were very much appreciated.

Mark

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Friday, August 20th 2010

At last!

I’m still in catch up mode at the moment as I try to recover from the huge amount of time I invested in migrating my blog to a new home (at the expense of everything else), so this and the next couple of posts will unfortunately be written and posted rather late. But hey ho, better late than never!

Anyway, the good news is that after the best part of a year and a half of discussion, drafting, planning submissions, appeals, quotations and finally approval, work has at last started on my much-needed house extension. As a matter of fact it actually started on the day I was discharged from St Michaels Hospice which was the 2nd of August. I caught a brief glimpse of the builders preparing the footings as I was wheeled out of the back of the ambulance that day. It certainly made a nice homecoming present! Unfortunately because of my predicament it is the only time I have physically seen the progress being made with my own eyes. Now, like you I get to monitor the progress through photos that my carers are kind enough to take for me.

Where I am situated now is on the far side of the house and upstairs so just about as far away from the noise as I can get, although to be fair the noise has been kept down to a minimum as far as I can tell. The builders, a pair of brothers who call in other skills as and when needed, are both very friendly and courteous.

At this stage I still don’t have a timescale for the project. I’m waiting on In Touch to get back to me with a better estimate than the 3 to 4 months they originally told me. Anyway, for now I am just extremely grateful that the project is finally underway and all of the bureaucracy which has cost me so much time is now behind me. Let’s just hope that we are blessed with good weather for at least long enough so that they can get the outside shell completed.

Okay, here’s a selection of shots kindly taken by Alli on the second day of construction.

The builders have finally moved in! 3rd August 2010

It's surprising how quickly they can fill a skip up. This was taken on the second day. 3rd August 2010

All this digging just because I lost my wallet! 🙂 3rd August 2010

Digging the footings under what will become the bathroom. 3rd August 2010

Remnants of my shrubs that will hopefully live on! 3rd of August 2010

View from what will be the rear of the extension. 3rd August 2010

Another view of the footings. 3rd August 2010

Mark

MT5EXA9CBY3J

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Welcome to my new home!

A warm welcome to everyone visiting my blog!

Ah, you found me! Come on in and make yourself at home. Put your feet up and I’ll go put the kettle on. I hope you like the look of my new home. I certainly spent quite a while decorating it, and to be honest I’m still unpacking, so if you can’t find things that were in my old home it’s probably because they’re still in a packing case somewhere. Oh and just one more thing, please don’t lean against anything white – the paint is still drying! smile_regular

* * *

On a more serious note I would like to offer a warm welcome to all my existing readers and those new to the site, as I relaunch my blog in its shiny new home here on WordPress.com.

Why did I move? That’s a good question and there are probably a number of answers to that ranging from wanting more control over my blog to complete and utter despair at the way Microsoft were treating their Live Spaces product.

Back at the beginning of 2008 when I was toying with the idea of setting up a blog, I had no idea how to go about it or indeed what products were available. I’d done a fair bit of writing over the years but had never attempted to publish anything. So the whole concept of blogging was new to me. All I really wanted to do (at first) was to keep everyone that I knew up-to-date with what was happening to me. Because I knew that I was heading for major disability and may not even be around for very long I didn’t want anything too difficult to use or administer. So I chose Windows Live Spaces as I figured I wouldn’t go too far wrong choosing a known company like Microsoft.

And so for a while everything was rosy. But as the scope of the blog began to expand I started to notice the limitations of the software I was using. I found myself increasingly having to compromise on what I wanted to achieve compared to what the software would allow me to do. My front page started to look very cluttered as I was forced to work within the design constraints of a single page layout. On top of this it was starting to look like Microsoft were already losing interest in the product as no new features were being introduced. It was beginning to look like I had backed the wrong horse!

Earlier this year my brother showed me what he had achieved on his own relaunched blog using WordPress software and immediately I was impressed by the range of features and control it offered. I wanted to do something like that myself but common sense was telling me that I had 2 1/2 years of blog material tied to Windows Live Spaces and that there was no magic button that I could press which would automatically export my blog completely intact to a new site. If I wanted to do it I would have to completely start all over again. Did I really want to do this considering the state of my health, the level of disability I now face compared to when I started, and the amount of time I probably have left? The answer was of course no. I still had other projects that I had started and wanted to spend more time on. I didn’t really want to tie myself up for goodness knows how long recreating one blog whilst trying to maintain another.

I probably would have left things as they were, no longer completely happy, but also not really willing to invest a large amount of time in correcting it, had it not been for Microsoft updating Windows Live once again, and to the detriment of Spaces! The Wave 4 upgrade seems to have relegated Spaces to the sidelines, almost as if they are positioning it ready to be phased out. What leads me to this belief are the following clues:

  • The statistics feature which kept me informed of traffic to the site has now been removed. The loss of this feature meant that I had absolutely no idea if anybody was visiting the site.
  • All my guestbook entries since day one completely disappeared at one point although they were able to successfully recover them. I believe however that there is still a bug present limiting the number on display.
  • People have also commented to me that there appears to be a limitation on how much you can write in a blog comment. This is a limitation imposed by Microsoft not me! It is also well nigh impossible to contact anyone in Spaces now as the internal messaging system has mysteriously disappeared.
  • Microsoft are no longer allowing add-ins to Spaces which allowed for increased functionality. They say it is to maintain a level of consistency across the platform, but I thought the whole idea of blogging was to express individuality not fall into line with some corporate identity?
  • The Windows Live Spaces team have been disbanded and their blog closed. There was a time when if I experienced problems with Spaces I would be able to contact someone directly and receive an e-mail back. Now however there is just a community forum and its potluck if a Microsoft employee decides to answer your question.
  • There seems to be a greater emphasis on aggregating data from other sources such as Facebook and MySpace rather than being a home for original content.
  • On top of all this I’ve started to notice problems with the links in my posts. Although they were created correctly (I check each one before publishing) something seems to have corrupted some of them. I’ve also noticed some missing pictures that were there when I created them.

Cumulatively the problems faced by this latest upgrade, the stripping out of features, and a big question mark hanging over the future of a product that hadn’t seen any real development in quite some time, was enough to convince me that it was indeed time to move on. So I started looking around for alternatives and settled on WordPress, a true dedicated blogging platform that only does one thing but does it very well indeed compared to say Windows Live that tries to be many things to many people. WordPress offers great support (which I’ve tested already), an active forum and a continually evolving list of features.

After playing around with the software for a little while and familiarising myself with its features I took a deep breath and began the long and arduous task of recreating the entire blog. As I say, there is no easy way of doing this, especially when you factor in pictures, emoticons, comments and guestbook entries, all of which have to be recreated with their correct links. I started the project around the middle of June and have now just completed bringing the blog up to date. I’ve still got some work to do on the additional resources and news stories but these are a lower priority and will hopefully be recreated in the coming week or two.

Whilst setting up the site I took the opportunity to implement some much-needed search features. When I first started blogging I didn’t give any real thought to how I or anybody else would be able to find posts on a particular topic. It wasn’t a problem at first but now there are almost 150 posts it is getting difficult to locate anything. So now you will see that I have incorporated categories and tags. So for instance if you want to find out what I’m writing about equipment I use then just click on the ‘disability equipment’ category to call up all those posts. Tags allow you to drill down further so if you were interested in say voice recognition you could click on the ‘speech recognition software’ tag. To be honest I’m still tweaking the tags and categories as I’ve come up with some more ideas I want to build into my posts that might be helpful to people interested in plotting disease progression.

Now it is all up and running I take a particular pride in being able to say that the entire site you are looking at was created using the sound of my voice! That’s right, I didn’t touch the computer once! Where would I be without Dragon NaturallySpeaking? So never let it be said that just because a person is extensively paralysed, that they are incapable of creating anything! My body is certainly a shadow of its former self but my mind is still working fine, and together with the ability to harness modern technology I am still able to express myself, thank goodness.

Oh and before anyone asks why the calendar entry banner is still green when my theme colour has changed to blue, the answer is ‘because I forgot to make a new one in blue’. I only noticed the obvious when I was recreating the last couple of posts. I’m just a great big silly old Hector! Now there, that’s aged me! But just for you, and because I’m nice, we’ll have a different colour each year starting with blue in January. Deal? Trouble is I don’t think we’re going to get through many colours smile_sad.

So before I sign off let me once again welcome you. I hope you enjoy exploring my new site and the improved viewing experience it offers. Please be kind and leave me a comment and let me know what you think of the new site. Let me feel the love! The comments and guestbook system works a lot better now so I’m hoping that I’ll start receiving a bit more feedback than was previously the case. I think the problem with Spaces was that you needed to register just to leave a comment. I know that some people feel uncomfortable having to register with a website so hopefully now that’s no longer the case there might be a bit more participation. Let’s see how this flies!

Mark

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Monday, August 9th 2010

Settling back in

It’s been a week already since I left St Michael’s Hospice and returned home. On my last day there I was rather apprehensive about returning home as the situation I would find myself in was not that far from the one I had left, only more so. I would still be trapped upstairs for the foreseeable future, and because of my lack of mobility would now find life even more difficult as certain bodily needs could only be fulfilled when there were sufficient carers to hand. Also I would need to get used to having carers work in teams of two at certain times of the day – a further sign of care, despite being absolutely necessary, is steadily becoming ever more pervasive and time-consuming. I sometimes wonder how I ever manage to achieve anything these days as the amount of ‘me’ time decreases each time the care package increases. It is a constant frustration that I face: my mind is the same as it always was and just wants to get on and make the most of each day. Unfortunately, my body, much like an old machine needs a lot of maintenance these days. Time for a new one, I think. I wonder if The Body Shop would do a brain swap out? smile_regular

So how has it been this past week? To be honest a lot better than I imagined. Considering they’ve only had a week of handling me so far my carers have done rather well, and together we have already managed to identify and iron out a lot of the problems we first faced regarding hoisting and manual handling. Although they will already have had experience in these things, every client will have different physical needs and will thus need to be treated and handled differently. In my case the difficulty is in handling my upper body because of all the wasting that has occurred over the past 3 1/2 years. This means that extra special care is needed when rolling my body from one side to the other on the bed as I am dressed. For instance carers need to keep a constant lookout for what my arms, fingers and neck are doing so that they don’t become trapped or bent too far in one direction. We’ve managed to minimise the discomfort as much as possible but it can still be a painful experience. And despite the fact that I am merely lying there whilst others do all the work I still feel exhausted by the time it is all over.

I’m missing my baths already. Being submerged in hot soapy water was a lovely way to start the day and very soothing on my aching muscles. Having a bed bath just doesn’t compare although it does of course keep me clean. Having a hair wash now is an interesting experience as this too needs to be performed whilst I am in bed. Basically we’ve been given what looks like a scaled down inflatable children’s paddling pool with a drainage tube. Actually having my hair washed is now a two-person job and between them they need to support my head and neck, pour water from a jug over my hair, apply the shampoo, and keep an eye on the level of water in the drainage bucket by the side of the bed. Nevertheless despite all this palaver Alli and Debbie (who were the first to try out my mini paddling pool) managed the whole operation without a problem.

Inevitably as my care needs have escalated so too has the need for more people in the team. To be honest this is nothing new and I’ve been saying for months now that we need another carer who is flexible enough to fill in a few problematical areas we have so as to lighten the load on everyone else. We also need someone who can fill in when anyone else in the team is off for whatever reason. So since coming home we’ve added two new people: Linda, who will be assisting with many of the double ups, and Emma, the youngest person in my care team, who spent this evening shadowing Alli.

Because of the complexity of my care package now Debbie and I have been spending some time over the past weekend rewriting the care plan. It’s only when you write it all down and look at how many pages it takes up do you realise how involved it has become. But perhaps not everybody writes them to the level of detail that we have but I feel that it’s important to be very precise in how I wish to be cared for. Also I then don’t have to rely on my own memory to instruct new people. It must seem rather daunting to new people though.

Before I sign off today I would like to express my sincere gratitude to Richard, my very friendly contact with the Remap charity, who has once again saved the day for me (twice) this week. On my first full day back at home he turned up in the morning with a drink holder that he had fabricated and which could be attached to my wheelchair. This marvellous little device holds a standard sports bottle and the screw on top has been opened up to allow for a straw to be fitted. Now I am able to drink unassisted at any time of the day. The second thing that Richard has done for me this week is to produce a set of nicely shaped wooden extension blocks that have raised my desk off the ground by about 3 inches (7.5 cm). So now I can get my legs underneath the desk again which means I can get closer to the screen and actually see what I’m typing! Well done Richard, two small enhancements that have had a big impact!

Mark

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D+1000

Who’s the daddy now, Mr Neurone? smile_regular

And Mr Neurone replies “you can be as cocky as you like because I’m still going to get you in the end” smile_devil

Oh smile_sad

Today (3rd August) marks the 1000th day since I was diagnosed with Motor Neurone Disease smile_party. It is indeed cause for celebration because back when I was first diagnosed I was none too sure whether I would still be around even a year later as I knew so very little about the disease and nobody could give me a clear answer. But here I am still rolling along and singing a song (of sorts), a bit worse for wear these days, but generally happy to be alive and trying to make the best of an ever worsening situation.

But oh my, how my life has changed in those 1000 days. This awful disease has turned my world upside down and forced me to go from a life of independence to one of complete dependence. It’s been a hell of a ride so far and at times I struggle to keep up, let alone stay one step ahead. And on the few occasions when I have dwelt on what has happened to me I feel an overwhelming sense of sadness and heartbreak at all the physical skills that I have lost and what they enabled me to do. The human body is a remarkable product of evolution when it is working properly – if only it would stay that way. But now after 1000 days of muscle weakening, wasting and paralysis I have become disengaged from the material world around me. I don’t touch anything anymore. I have become a passive observer: I talk to my computer, I watch my TV, I listen to music, I read off a screen. One thing’s for sure, I wish I’d backed myself up a few years ago before all this started. I could have done a full restore back to my normal self, ha ha.

In the time I’ve had this disease I’ve had to say goodbye to so many of the things that gave my life meaning and enjoyment and now they are nothing more than a distant memory. But hey ho, life goes on, just in a different form. And it is this ‘different form’ that I am now trying to adapt to. In a sense my world has now contracted down to a chair that I cannot even control myself so I now have to wait until people appear in my field of view rather than turn to greet them. At times it is incredibly frustrating, and although people can sympathise, I don’t think they can truly understand, any more than I could, unless faced with a similar situation. The trouble is my mind is still working flat out at 100% even though my body (at the muscular and motor control level) has just about given up the ghost, and the technology I use simply cannot keep up with me, hence the frustration.

I think that to coexist with something as devastating as MND you have to constantly reinvent yourself to suit the changing situation. I also believe that it is imperative to keep the mind fully occupied, and for me this has become a sort of defence mechanism shielding me from dwelling too much on what has happened to me. I’m also extremely grateful that it has so far not affected my voice (except in volume), although I’m sure there are some people who might wish it had whenever I’ve had to battle my case to get things done. But although it might not have made me popular at times I’ve had to do it or risk having to accept what I’m given or how I’m treated which isn’t always what I want. Had I not intervened in the ways that I have done since being diagnosed then I’m certain that things would have been very different… and far worse.

By far more than anything else it has been my legs and their gradually weakening ability to support my weight that has dominated these past few months. During the weeks leading up to my hospital admission I was getting very stressed at the mere thought of trying to stand up and walk the short distance between bathroom, bedroom and study. Every time I attempted it I could feel my legs complaining at the stress I was putting them under and it would often feel like they were about to collapse from underneath me at any moment. In a sense it was a relief to finally move out of that dangerous intermediate phase in which I was neither fully mobile or fully disabled. At least now I am removed from the fear of taking a nasty fall and suffering a terrible head injury.

My recent five-week stay at St Michael’s Hospice has perhaps given me a taste of things to come and if I was under any apprehension about visiting a hospice before then those fears have now been dispersed. It has been quite an experience for me (in a very positive way).

The other thing that has caused me no end of stress these past few months has been the continuing saga of trying to get an extension built and what it has cost me in terms of restricted movement whilst I wait. I think if I could do anything different at all, or at least pass on some advice to those newly diagnosed, it would be to start planning for severe disability straightaway. Don’t wait until the legs start showing signs of weakening because it can take an incredible amount of time to go through all the grant approval, planning and construction stages. I started flagging my concerns regarding mobility early last year and here we are in high summer the following year and I still have yet to get a single brick laid. Of course on the flip side of this I’m not sure how easy it would have been to get the Disabled Facilities Grant a year earlier when my legs seemed perfectly normal and I was able to walk quite a few miles each day.

Moving on from where I am now though and I am under no illusions that it is going to be easy. MND is a very complex disease that places severe demands on all those who are and will be caring for me in one capacity or another. My respiratory system is already weak and a year ago I was told that it was on the bottom end of okay. My breathing definitely feels weaker than it did a year ago but thankfully I can still breathe unassisted although at times it does feel like somebody is tightening a belt around my chest one notch at a time with each passing month. And as time goes by I’m going to be more and more at risk of chest infections and this can be potentially fatal so I will need to be very careful, particularly with the people I come into contact with.

This D+1000 post is the last of the D+ series. I feel that they have now achieved their aim which was to document all the changes, from the very early stages of the disease when I still had all my abilities, to a time when I would be fully dependent on others. As I am now at that stage I feel that there would be little point in continuing as that part of my story has now been told and what comes next is really more a case of learning to live with severe disability on a day by day basis. I feel that my regular calendar entries can serve me better in that respect. However, if I should be so fortunate to live another 1000 days then I daresay that I might be tempted to write a D+2000 post! In the meantime I will still continue with the yearly anniversary posts.

I made it ! Me, today! (Thanks Alli for taking the photo)

Mark

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