R.I.P. Mark Glover: 1960 – 2011

Mark Glover

On Tuesday 30th August 2011, my dear brother Mark passed away after four years of battling MND.

I’m Mark’s youngest brother, Jason, and it was only at the end of July that he sent me an email asking me to look after his blog ‘when his time came’, making sure it was never deleted, approving any guest comments and writing the final post to tell people what had happened. He wanted me to be the custodian of this site he’d devoted so much of his time to over more than three years and which many people had expressed their gratitude to for being such a great MND resource.  I don’t know if Mark had a foreshadowing at the time that he would pass away just a few weeks later but I accepted his request, even though it saddened me greatly to think there would be a time he was no longer here. I thought at least that it wouldn’t be until next year or beyond but I was wrong.

I’m sure it will come as a surprise to many of you that follow this blog that Mark has now passed away, especially as it was just two days after his final blog post on August 28th when he suggested readers come back in a week to see more pictures of the period before, including his 51st birthday on August 24th. It came as a shocking surprise to all of us as well – his family, friends and carers – but a day after Mark wrote his final blog post, he contracted a chest infection which, in his weakened condition, proved fatal just a day later.

Mark died peacefully in his sleep at home, one final ounce of mercy after four years of battling the cruelty of MND.

Apart from Mark himself, I may have been the first person to notice the early effects of his MND early in 2007, although I never could have guessed then what the cause was. I lived with Mark for 13 years in the house where he’d pass away, a house familiar now I’m sure to those of you who follow this blog. Even after I moved out at the end of 2004, I only moved up the hill a couple of minutes drive away. Mark and I would continue to see each other very regularly, inviting each other round our homes for dinner and a DVD every few weeks.

It was during one of those evenings in 2007 when I first noticed something wasn’t quite right. Mark was sitting opposite me having dinner and I could see his hand shaking. I pretended I didn’t see it but I’m sure he knew I had. Neither of us said anything and I thought little of it at the time, thinking maybe it was just a muscle spasm or, at worse, arthritis. His hand got weaker over the following months and when, Chery, my then fiancee (now wife) and I took Mark out for dinner on his 47th birthday at the end of August, he told us he was worried about the muscle problem, which was affecting his arms as well.

I was naturally worried for my brother but I still didn’t think it would turn out to be anything bad. In our family we have a history of cancer on our mother’s side and heart disease on our father’s. It’s those things I always fear so I would never think that any other disease could strike us. Even after Mark was diagnosed, he still said it may not be MND that eventually killed him. He had always been the healthiest one in our family, rarely even getting a cold and hardly ever having a day off sick in all his decades of work.

Further tests followed and still Mark didn’t know by the end of September 2007 what was wrong with him. The specialist at the local hospital booked him in for three further tests and Mark remained very worried. And I was starting to worry more as well. At the end of October, I drove him to Southampton hospital for the last of his tests and by now his arms were very weak, although it would still be five months before he’d have to give up driving and work.

Mark was relieved to get all his tests out of the way and he had a meal at my apartment with Chery and I that evening. But then everything changed on 7th November, a cold dark day for more than one reason. I was home alone that day and he came round to see me that evening to tell me he’d just been to the hospital to get the results of his tests and he’d been diagnosed with motor neurone disease, Progressive Muscular Atrophy to be exact. It still wasn’t completely conclusive at this stage but, just able to fight back his tears, he explained to me how the disease worked, how it would spread from his arms to his legs and eventually his lungs. And he told me there was no cure and he’d eventually end up in a wheelchair and die before his time.

Of course, I was devastated! I had never heard of MND before but after Mark left I looked it up online and was shocked to find out what it meant. I could never believe that something like this would happen to someone so close to me. Mark was my big brother. He was always there for me when I needed him and I knew I had to do the same for him.

The following day, I found it so difficult to concentrate at work and had to tell my boss by email because I was too upset to tell him face-to-face. Mark called me that evening and seemed to be coping better than I was, such was his strength. We said we’d talk more and even then he was planning for what was to come by telling me I should have a key to his house in case I needed it.

Soon after, a whole support network sprung up around Mark and he was constantly reminded that right now MND had only affected his arms and it may be a long time before it progressed any further. He was told that even in Basingstoke there were were people with MND who’d lived with the disease for 10, 15 and even 20 years and that gave him a lot of strength. But just a couple of weeks later he started to notice his other arm get weaker as well and soon after I started to do his weekly food shopping for him.

During the years that followed, even with MND dismantling his life bit by bit, I was inspired by how positive Mark remained. At first, it was partly because he believed it would take many years for the disease to run its course, but even later when he knew the end may be in sight, he never stopped being the person I always knew. MND can take away many things but with strength of mind it can’t take away the person you are.

And when the end did arrive, despite me knowing the day would one day come, I still wasn’t ready for it. Just a week before it had been his birthday and I’d seen him last just two days before he passed away. I got a call at work from Debbie, Mark’s main carer, Tuesday morning to say Mark wasn’t good and as the time progressed he became unresponsive. I made arrangements to come home but just as I was leaving I got another call to say he had passed away.

Mark’s funeral took place on Monday 12th September and was well attended by family and friends. He was cremated according to his wishes and his casket with his ashes was buried the following day beside our mothers in a nearby church.

My brother Mark was the bravest person I’ve ever met. From the day he told us he’d been diagnosed with MND, he lived each day with so much courage and determination and with a smile and a joke never far away. I know from the many comments left on his blog how much his story inspired others, including those battling MND themselves and those caring for them. And I want to pay tribute to all the carers who looked after Mark over the years, many of whome are here with us today, and who showed both compassion and friendship to him and gave him another reason to cherish each day.

I will always be proud knowing that I was Mark’s little brother, or junior as he sometimes called me.

I remember movie nights when we’d take it in turns to pick what to watch and then sit in front of the TV, each with a cat on our lap. I remember countless trips to the cinema and waking up every Sunday to the smell of Mark cooking our  dinner. And I remember holidays together, including Florida, where I dragged him onto every rollercoaster I could find even though he always closed his eyes.

These memories and many more will always be with me. And I will always miss my brother.

Thank you for reading this blog.

Here is a video featuring Mark’s life from a child, right up to his final picture, accompanied by music played at his funeral, including a track from Queen that he specifically asked for.

3 Years of Blogging!

Celebrating three years of publishing to the web!

It’s time to break out the bubbly folks because today (15 February) I celebrate my blog’s third birthday. And what a year it has been too with so much to write about as I continued to document the changes brought on both in lifestyle and physical abilities by this horrendous disease.

For the blog itself the biggest change this past year has been in relocating it to a new home here at WordPress, something which was spurred on by the lack of development and limited feature set of my old blog’s home. I’d initially balked at the thought of recreating something like 2 1/2 years of content, and yes it did take a long time, but now that it is done I must say that I take considerable pride in being able to say that the whole of the new site has been created without touching the computer once! Everything you see here on this site is created and assembled using voice recognition software with the occasional movement of my foot controls to operate the screen cursor.

Moving the blog to WordPress has been one of my better decisions. Visitor traffic to the site has substantially improved; in fact it received more hits in its first six months here at WordPress than it did in its first 2 1/2 years in its previous home. There has also been a dramatic improvement in the number of people who have been kind enough to leave a comment or message in the guestbook (including a few nice surprises from people I’d thought had dropped off the radar – you know who you are), and it has been feedback like this that has fuelled my determination to continue developing the blog.

When I re-launched the blog last summer I started experimenting a little with raising its profile and trying to direct traffic to the site, an idea I got from my brother Jason who is very adept at this kind of thing. I won’t pretend for a moment that I’ve started to optimise the site using keywords and repetitive word usage (at the expense of readability) but I did dabble for a while in making use of blog search engines such as Technorati, and social websites like Twitter to try and increase the blog’s chances of being found and by the right kind of people. After all, there’s not much point in writing about motor neurone disease if the people who wish to find out about the disease aren’t aware of the blog’s existence. Surprisingly perhaps it was a subject that initially I had never given any thought to. All my energy had always been spent on creating content. I’d not made any effort to advertise it! So raising awareness of the blog so that I can in turn raise awareness of MND has been something I’ve devoted some of my time and effort to during the second half of last year.

Now as I mentioned last summer in my D+1000 post I feel that I have now reached the point where the story of my descent into quadriplegia has now been told. In addition I’ve also now completed the saga of getting a house extension built as well as documenting the ups and downs of dealing with care agencies. And so after all the turmoil of the past few years I have at last (he says with fingers firmly crossed) reached a point of relative stability. For how long, who can say? But now that I am living downstairs my options on how I wish to spend my time have been considerably increased. It is for this reason that the blog is going to receive less attention than it did last year. With time in short supply I want to spend some of it doing other things that bring happiness to me. I have quite a backlog of things to do which are going to demand quite a lot of my time. I’m also hoping to be able to get out and enjoy the fresh air on a regular basis. I’ve been cooped up inside too long and I want to make up for it. But there is no need to worry because the blog will definitely carry on; in fact for me it’s hard to imagine my life without it as it’s now become a part of me. I will continue to document anything significant that happens and intersperse this with special topics from time to time.

As time marches on I will become increasingly dependent on technology to allow me to communicate with the computer. Speech recognition software is now central to everything I do and that in turn is dependent on my voice. Although I can still talk clearly, and there is currently no indication that this is going to change any time soon, my ability to talk continuously and in an unbroken fashion for more than a sentence or so is diminishing as the months go by. I notice this now not only when I have a conversation but also when I dictate into my microphone continuously for any length of time. Consequently working the computer for a few hours with my voice is becoming quite tiring and it is now quite common for me to write these posts over several days so that I don’t feel exhausted. In more recent months I’ve found it increasingly difficult to use my feet to operate the mouse controls as they gradually succumb to the paralysis. For this reason I am now looking at alternative methods of controlling this aspect of the computer. At the time of writing this post my AbilityNet contact has placed an order for a head tracking system which they have asked me to try. They have also supplied me with a modified game console controller on a swivel arm which may also prove suitable. So yes there are solutions out there, it is just a case of finding the right one for me. The trouble with this disease is that you have to continuously be one or two steps ahead in terms of accessibility technology or risk being locked out.

Before I sign off I would like to express my gratitude to my carers, most of whom at some time or another have been kind enough to take up photographic duties for me so that I can continue to illustrate the blog. I would also like to thank all of you out there who have been kind enough to drop by and stay a while, especially those who took the time to leave a message. They are always very much appreciated.

Mark

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Tuesday, September 28th 2010

Emergency measures

I’ve been inundated with worry lately and generally feeling very low. As mentioned previously my care package as it is now will no longer be supported after this week. Obviously because of the extent of my disabilities I cannot be left on my own, and as my care manager has not had sufficient time to make alternative arrangements we are having to resort to emergency measures.

Yesterday afternoon my care manager and a member of St Michaels Hospice called round to discuss re-admitting me to the hospice on a short-term basis whilst they try to figure out what to do with me. The hospice is normally only really geared for short-term stays of around 2 to 3 weeks unless health needs deteriorate. So this appears to be roughly the time scale we are looking at to get things sorted out. For now though the immediate plan is to admit me tomorrow (Wednesday) morning.

As much as I like the hospice (and it is indeed a wonderful place) I would much rather stay in my own home at this time as I have only just recently left the hospice. Unfortunately they do not have the resources in their Hospice at Home team to offer me the level of support I would need to be able to stay in my own home. But of course the hospice is an excellent second choice, and I know without a shadow of a doubt that I will be well looked after so at least it is a worry off my mind, although what happens afterwards is anyone’s guess at the moment.

Did you notice in the first paragraph I mentioned my care package ‘as it is now’? The reason for that is because my care agency has agreed to continue to support me in the mornings whilst I am at the hospice. The reasons are twofold: the first is to lighten the load on the hospice staff, and the second is to aid in my transition to a new package. So the good news here is that my regular morning carers will continue to take care of me at least for a few more weeks. Unfortunately for everyone else it will soon be time to say goodbye.

This time I shall be going to the hospice more prepared than I was last time and fortunately I shall be taking my new wheelchair so at least I’ll have something comfortable to sit in all day. Unfortunately however I may not get it straight away as NHS ambulance staff are not allowed to move wheelchairs down flights of stairs, apparently. I may have to wait until the following day. Oh yes, I’m also taking my laptop computer again so hopefully I’ll be able to post frequent updates as the situation changes.

So for now I’ll sign off but just before I do I’ll leave you with a few photos that were taken over the weekend. The first few are with Suja, the delightful young Nepalese girl who created a big impression with me recently with her pleasant personality and hard-working proactive approach to care. As for the last picture it is somehow fitting that it should be of ever-loyal ever-reliable Ann. Tell you something, if I’d had a few more people like her in my care package we would never have had a problem. Sigh…

With the lovely Suja. 25th September 2010

With Suja. 26th September 2010

With Suja and one of the guards who has muscled in on the action! :-). 26th September 2010

With ever-loyal ever-reliable Ann. 26th September 2010

Mark

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Tuesday, September 14th 2010

It never rains…

I had a meeting with my care manager this morning as I quite often do. Like usual I assumed it would be to discuss the care package, talk about any problems and concerns I had, and to update me on any changes coming my way. But instead she opened with the line “I’m afraid I’ve got some very bad news”…

My care agency are pulling out of my care package at the end of the month! I now have just over two weeks to make alternative arrangements! For a moment I was left stunned at the completely unexpected hammer blow. Why are they doing this? Because they say they can no longer support it. Why? Apparently it’s because they are unable to provide the right people. I’m hearing, through other channels, that it’s because all the new people that are being sent to work with me lately are proving unsuitable (and that’s being kind), and all the people I have identified (and there are at least half a dozen) as suitable and competent either don’t want to work with me (because they don’t like the hours being offered) or are unable to because the office won’t move them from existing clients or they don’t have enough spare capacity. Hence we’ve arrived at the situation we are in now.

The above is of course a simplification of a situation that has been steadily brewing for the past two years. When I first had a need for professional care in October 2008 I was already thinking ahead to a time when I would be heavily disabled and therefore completely dependent on others. So one of the main objectives was to try and build a care package consisting of a group of reliable, competent and loyal carers who would stay with me throughout the course of the disease. I also wanted people who would work well with each other and as a team so that they would be prepared to cover each other in times of holiday or sickness. What I was trying to avoid was having major upheavals in the care team supporting me during the later stages of the disease. By this time I was hoping that all the problems would have been ironed out and everything related to my care would run smoothly. How naive I was to think that there was stability in the care sector!

To be honest I’ve been under a lot of stress lately even before today because I was aware that one of my main carers was leaving soon and it was hard to see how we would replace her because of her range of skills. She also had a willingness to work not only her own hours but to fill in and do any hours that nobody else was available for. In fact it is because of her that the package has been kept running relatively smoothly all year otherwise we would have reached this point many months ago. She is a key and critical member of the team. In fact I have often remarked to my care manager that there are essentially three pillars holding my care package in place. If any of those pillars were removed we would be in serious danger of the whole package collapsing. The fact that this is exactly what appears to have happened shows how deficient the management of the care agency have been in allowing the situation to develop.

The trouble is for every person like Ann, Debbie, Francesca, Alison, Kim and Alli that have looked after me, there have been a dozen or more that have come through my door that are either clueless, incompetent, lazy, dangerous, lacking in imagination or seemingly only able to work to a predefined script and hopeless when circumstances change. It certainly feels at times that there is something of a lottery in terms of who turns up: will it be someone experienced, palliative care trained, or will it be someone that has just finished working in a department store? That may not sound a particularly nice thing to say but if you were in my shoes you would understand.

We’ve been trying to get more skilled people into the package for months without success. Even more frustrating is when we do identify them and nothing gets done. For example early in the year Debbie identified a young Nepalese girl as being absolutely perfect for this package. She’d just started with them and was already getting good feedback from clients but for some reason was never put into this package until a few weeks ago as emergency cover. She was the girl that I previously commented on, and like Debbie I immediately saw her potential as an excellent carer. Since then I’ve tried and failed to get her added to the team. I am convinced that had the agency taken this and other requests about personnel more seriously we could have easily averted the situation I am now in.

What concerns me now is that I am being told that because of the cost and complexity of my package it is very unlikely that Continuing Care would fund another one like it. I am being told in quite strong terms that we need to start looking at live-in care which is something that I have fought long and hard against all along. It doesn’t work for everybody and I feel certain that it wouldn’t work for me because of the private nature of the person that I am. We cannot just push people together and expect them to get on, and I never want to feel uncomfortable or unhappy in my own home as that is all I have left me. It also fails to give me the continuity I desire as live-in carers rotate regularly.

The problem with having Continuing Care (which is care paid for by the NHS and is not means tested, but is only awarded if the need is health-related) is that your care has to be delivered by an approved agency. In other words the client has very little say in who provides their care. This is different to having something like Direct Payments in which you get a pot of money from the local council (who will means test you and is not relevant in my case anyway as my needs are health-related) to go out and buy your own care. So in other words I will have very little say in what is going to happen next and to make matters worse I am being told by my care manager that even if we could get funding for a similar package to what I have now I would be looking at about eight new people. On top of this she is telling me that she is having lots of problems just getting three calls a day covered regularly for other clients with the two agencies on the approved list.

I feel like I am caught between a rock and a hard place. On one hand I hate the idea of having an endless stream of live-in carers (plus additional staff from local agencies to handle the double ups) who come from foreign lands, stay for a few months and are then replaced with another one, whilst on the other hand I am fearful of going to another agency for day care and getting exactly the same kind of problems as I’m getting now. I feel like I’m trapped in a care system that neither cares nor works properly.

When something like this happens it will affect people in different ways depending on their own personal circumstances. If I was not living on my own then sudden changes in my care package would not have such a deep impact as I would be cushioned to some extent by those around me. But of course I’m not in that situation and so I’m absolutely dreading losing all my regular carers in a couple of week’s time who have by now grown to anticipate my needs to such an extent that everything just works very smoothly. In the time that we have known each other we have all become friends and I think some of this can be witnessed in the photos that I have posted of our evening meals out together. Although it is true that we’ve not been fully up to strength and could have done with at least one more fully versatile team member, those that have been here have given me a degree of stability that I need. It’s going to be heartbreaking saying goodbye and right now I don’t even want to think about it.

At the moment I’m feeling completely crushed and seriously depressed. What else can go wrong for goodness sake? I can’t actually print what I think about an agency that would leave a terminally ill, highly disabled and completely vulnerable person in this terrible situation and at such a late stage in the disease because I’m not like that. But I’m sure you can imagine for yourselves! Can you imagine a hospice saying ‘we don’t want to do your care anymore’? All the worry and stress this has brought on has caused my appetite to collapse. Everything I had set out to achieve two years ago is now in ruins and it is starting to feel like my premonition of spending my last days in the company of near strangers is starting to come true. On days like this I just feel like giving up.

Mark

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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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1 year old today! – A year of blogging

1 year of blogging

Hello everyone.

It’s a bit of a special day for me today and one that I feel like celebrating :-D. A year ago I began publishing articles to my very own web space and made the first tentative steps into the world of blogging. Yes, my baby is one year old!

I used to think that blogging was a very strange activity. Why write about deeply personal things for the whole world to see which were really only relevant to family and friends anyway? And who on Earth would be bothered to read it? I know we have this obsession in modern day Western society to obsess over the lifestyles of the rich and famous but I am neither. What could I possibly contribute that would be interesting or informative?

Well it’s probably fair to say that had my life not headed off in the direction I find myself then I might never have bothered. But of course it was a diagnosis of MND that provided the catalyst and within a few months I found myself with a strong desire to document in some detail all the things I would experience. I did this partly for the benefit of my family & friends, but also because I wanted to share the experiences with a broader audience in the hope that they might prove useful to people in a similar situation as well as wanting to do my bit for raising awareness of what it means to have MND. Since doing so I’ve discovered that other people in similar situations are also telling their own stories and sharing experiences through their own blogs (a selection of those that I have come across can be found within the Favourites section of this blog’s front page). Such is the power of the Web these days that any individual can reach out and touch a vast number of people with minimal expenditure (compared to broadcasting or publishing). This sharing of information can often prove more useful then the cold hard facts presented in medical text books because it is written by people experiencing the disease so you get a much better understanding of what it might be like to actually live with it on a daily basis. It’s one thing to learn that dying nerve cells lead to paralysis and muscle wasting but for the non-medically trained amongst us it can be better understood I feel if described in the context of what it means to lose abilities and how we cope. And that is what my aim has been; not to elicit sympathy, but to put a human face on the cold harsh facts.

So here I am a year on from when it all started and I look back over what I have published so far feeling, dare I say it, rather ‘proud’. I just wish the subject could have been more light-hearted and fun although of course I’ve tried my best to inject some humour along the way. I suppose that in a different reality I would have found it enjoyable to combine my interests in travel, photography and writing into a blog as others have done. Nevertheless, as the months have passed so the blog has evolved with articles becoming more ambitious in size and scope. Those of you visiting on a regular basis will have noticed that all the latest blog articles are now preceded by an intro graphic to add visual interest and a splash of colour to what would otherwise be quite ‘text heavy’ articles. And I have to say I have great fun in creating them too!

In working on the blog I have gained an appreciation for how challenging it can be to constantly come up with new material and to try and write it in a readable and interesting fashion – and sometimes to a deadline too! I have tried to strike a balance between articles that focus on my deteriorating health and those that describe some of the things I get up to, because at the end of the day it is my family & friends, my hobbies and interests, and my hopes, fears & beliefs that define me as a person. MND just happens to be the medical condition that is trying to derail everything.

I know that my prose will never scale the literary heights and I dare say that those of you with a greater command of English Grammar probably shudder at some of the things I get up to. You would have thought that after living on this ball of rock for 48 revolutions that I would have gotten the knack of it by now, but oh no, it still eludes me. I’m always getting confused about when to use a colon vs. semi-colon, where to place comma’s, when to use numbers instead of words etc. I just use a scatter-gun approach and hope that some hit the target, hehe. I used to be the same at school; I would get top marks for story writing and ideas but terrible marks for spelling and grammar. But ultimately it is the content that is more important and as long as I can get my message across then I’ll be satisfied.

Over the past year I’ve read other people’s MND blogs, studied their style and update frequency and compared them with my own. I’ve concluded that the format I’ve adopted in which I only write articles on specific subjects as and when the need arises is the one that works best for me. Some folks update at far more regular intervals but I feel that the rate of disease progression in my particular case does not warrant it and so I shall continue for the time being updating approximately twice a month.

The Eagle eyed amongst you will have noticed that I have made a slight name change to the blog. ‘Fighting Motor Neurone Disease – One Day at a Time’ now becomes ‘Living with Motor Neurone Disease – One Day at a Time’. The reason for the change is that I felt the need to emphasise more the ‘living’ aspect rather than the stubbornness of fighting what is ultimately a futile battle anyway. Sorry, I know that sounds defeatist but don’t worry; I’m not giving in to the disease just realigning my priorities. Yes I can be stubborn and life is indeed worth fighting for, but at any cost? Well perhaps that’s for discussion in some far future article should my quality of life ever go through the floor. For now though I just feel very tired of constantly ‘fighting’ and yet still seeing my health continually decline. I just want to find ways to co-exist with the disease as much as I can and therefore I want my blog to reflect this. ‘Living with’ (MND) is still optimistic! And yes the web address remains the same.

I have much to thank this blog for. It has enabled me to channel my creative energies into something that not only keeps my mind active rather than just sitting around and stagnating, but also to provide a resource that will hopefully prove beneficial to others like myself. In fact in some ways it has become a surrogate for work as I’ve certainly not got to a point where I want to stop learning or contributing – I still have a keen interest in technology for example. I just want to do it on my own terms and at my own speed. More recently the addition of the ‘home-grown’ graphic elements preceding each article has to some small extent eased the pain of giving up on photography. So once again my blog has come to the rescue by providing an alternative!

There is one other reason why I continue on with the blog and that is a strong desire to ‘reach beyond my years’. I’ve been thinking lately about where computer technology might take us as a society, how it will shape and change us. People are now uploading more and more of their lives to the Internet through photo sites such as Flickr, social websites such as Facebook, and blog sites such as this one. Fast forward a hundred years for example and future generations will have a good idea of how their relatives lived through their photos, home movies and blogs. The Internet becomes the ultimate multimedia family tree! Just imagine if we could do that for our ancestors: “oh look, there’s a photo of my great-great-great-great…grandfather at Agincourt. He’s the guy at the back with his head down low dodging the arrows” :-D. So in a sense this blog will become my digital legacy and will continue to exist as invisible, non-tangible code buried deep inside silicon on a server somewhere in the world when I am but a distant memory. Yes, I write it to prove I was here. Even when all the people who knew me are also long gone, this blog will prove that I existed, and that I once lived on planet Earth.

Anyway, it keeps me out of mischief :-).

And finally (for now) I would like to take this opportunity to thank all my friends and family who have given positive encouragement and feedback on my blog. All the kind words have been very much appreciated. Thank you all so much for taking the time to visit me here. It means more then I can express in words.

Mark

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First tumble

Well I suppose it had to happen sooner or later but this was not how I imagined it would be or indeed this soon. But then I only have myself to blame…

I’ve been quite a keen cyclist for the past seven years. I’m not what you would call a racing or mountain bike enthusiast, just an evenings and weekends fair weather cyclist. You know, the typical office worker trying to keep the weight down and the circulation up. And I guess that is why I got into it originally – as a way to try and keep fit and to combat the effects that a fairly sedentary lifestyle can bring. The ominous spectre of middle age was looming…

But what started out as something that I felt sort of compelled to do gradually over time turned into something that I really enjoyed and would look forward to. At one point I bought a little trip computer so I could see how many miles I was clocking up each week, trip etc. In the first summer I had it I managed to clock up just over a thousand miles! Back then I seemed to be out on my bike just about every day. In the evenings after work I would change into shorts and T-shirt and play ‘beat the clock’. I used to have a 12 mile circuit that would take me around the housing estate and out into the countryside past Manydown farm to the neighbouring village of Oakley. I would constantly try to shave a few seconds off each time until it got to the point where I felt fit to collapse when I arrived home. On the occasions that I wasn’t trying to beat my own record I would adopt a more leisurely pace. There is a riding school out by Oakley and whenever I cycled through the village I would pull over and stop just past the old traditional stone church and lean over the gate to the field where the horses grazed and wait for them to walk over and say hello. Well sometimes I would be there for ages. You know what it’s like yourself; once you get chatting to a horse you just can’t get away, they just have to tell you their life story. That or complain about the ever rising price of hay :-).

At the weekends I would set off with a full bottle of water and head off towards one of the nearby towns such as Alton, Alresford or Andover. We don’t have any mountains here in Hampshire but we have plenty of hills and although it might look fairly flat on a contour map I can assure you that when you are on a bike you know about it! Each year I would try and stretch myself that much further by increasing the number of miles cycled in a day. I eventually ‘maxed out’ at 70 miles which was a full day’s cycling and left me completely exhausted by the time I crawled home that hot summer’s day. It had been the only time when my energy levels had completely collapsed at one point and I had to take a long rest before carrying on. And boy did I sleep well that night!

More recently I tended to do it purely for the pleasure of being out in the fresh air and the joy of passing through charming little villages full of thatched cottages, duck ponds and stone bridges. What a wonderful stress-free way to spend a day in relative peace and quiet away from the traffic congested ‘A’ roads. And on a summer’s day there is nothing better then to be out cycling down the country lanes with the sun on my back, wind in my hair and a big silly grin on my face as I hurtle down the hills!

So here we are in May and fast approaching June. With driving becoming a distant memory and walking rather limiting in range I was starting to get the itch to get back in the saddle. I hadn’t been cycling since last summer and I was curious to see if I could still do it. I felt fairly confident because walking wasn’t really presenting any problems and if I could start cycling then it might provide indicators of how the disease is progressing – in fact very much like I do with my walking. The indicators that I would look at most would be how my legs were performing; whether I felt weak or whether I felt that they were about to stop working altogether, my overall stamina level and also how I was breathing; whether I was struggling to breath cycling up steep inclines, or whether I just felt extremely tired at the end of a ride. So I would carefully keep a watchful eye for these early indicators so that if anything did start to develop I would be able to alert my GP.

Another reason for wanting to push myself physically is that I believe it is good to keep the limbs moving to help combat the stiffness that can set in. Sure it’s tiring but better that then have muscle tissue that has grown so stiff that moving the limb even with help becomes either difficult or painful. And hopefully by trying to keep the muscle tissue supple I will be able to keep the cramp at bay. And I suppose another very real reason for doing it is because one day I may not be able to so and I want to make the most of the here and now as some day all I’ll have will be these memories of mobility to feed off.

So a week ago today after first struggling to get the garage door open (not easy when you cannot raise your arms very high), I dusted down the frame and pumped the tyres up on my trusty Saracen Traverse. I clipped the trip computer to its cradle on the handlebars and set off. With a clear blue sky, the sun shining and a gentle breeze blowing it felt good to be back in the saddle on such a wonderful day and without a care in the world. I started singing ‘two wheels on my wagon, and I’m still rolling along…’

To be on the safe side I decided that until I felt confident and safe enough I would stay off the roads and just stick to the cycle paths that thread their way through the housing estate. All was going well until I approached the field (not far from my home) which is on a steep incline and I made a fatal mistake but one which had become intuitive to me since I started cycling. I stood up to gain extra leverage and as I did so I leaned forward to remain in an upright vertical position – BIG mistake! My centre of gravity shifted and suddenly my arms bore the full weight of my body. Immediately my arms collapsed under the load and the bike and I parted company as gravity took over. I hit the ground hard but cannot remember exactly how because it all happened so fast. The first thing I was aware of was a pain in my chest and struggling for a few seconds to breath. I had hit my chin against the pathway too and in those first few seconds I just lay there trying to collect my thoughts as all sorts of horrible scenarios flashed through my mind. Had I broken any ribs, had I punctured a lung, had I lost any teeth? I nervously ran my tongue over my teeth – everything seemed okay, nothing missing and no taste of blood. I ran my hands across my ribs but there were no sudden pains and nothing felt abnormal. I looked around for evidence of blood but there was none. So nothing immediately visible except for some grazing on both knees, hands, chin and left cheek although I still had some pain in my chest from hitting the deck so hard. Phew!

So that brought my first cycle ride of the year to a very abrupt halt. All the walking I’d been doing lately had lulled me into a false sense of security. And although it hurt quite a bit at the time I had been fortunate that I had suffered no major damage. I had managed to walk away with superficial grazing and some bruising which is now slowly fading. I had some slight pain in my chest for a couple of days perhaps from some pulled muscles but everything is gradually getting back to normal – whatever that is these days. One thing’s for certain, it sure hurts hitting the ground! As children we seem to be forever taking tumbles and yet we just seem to bounce right back as if made of rubber. But the older we get the more ‘rigid’ and frail we become. Ouch! Wouldn’t want to repeat that again! Naughty arms!

So I took a tumble and no doubt it won’t be the last. With muscle wastage comes unpredictability: hands can suddenly loose their grip, arms can fail to remain in an upright position, feet can drop causing a person to trip, and legs can suddenly fail to support, leaving a person crumbled on the floor. I think when my legs start to show signs of failing I’ll have to go round the house and bubble-wrap all the hard edges :-).

Apart from the physical hurt I’m feeling a bit down because I really had hoped that the bike would allow me to extend my travel radius and get out into the countryside a bit more, at least long enough to be able to enjoy some of the summer. I was so looking forward to it but it doesn’t look very likely now as the risks involved are too high should my weight shift suddenly in a way that I cannot compensate for quickly enough such as going down a steep hill with all my weight leaning forward. If my arms collapsed then…well it doesn’t bear thinking about. At least this time I had the sense to keep to the cycle paths. I suppose I could fit extended reach stabilisers like some bizarre form of land-based catamaran :-).

And just think, had everything gone smoothly then in a month or two I would have been publishing a blog entry called ‘saddle up!’ instead of this one. Oh well such is life…

So it looks like I’ll live to fight another day or as James Bond said in one of the recent movies ‘Die Another Day’ ;-).

Mark