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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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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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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Friday, March 12th 2010

Painful mornings

I’ve been having a terrible time this past week with pain in my lower spine and the consequences of taking medication to alleviate it. In my previous post I mentioned I was about to try something called Tramadol, a slow release painkiller that would hopefully bring some relief in the early hours of the morning and until my carer arrived. Unfortunately it does not appear to have brought any benefit as I still wake up around 5 AM with pain in and around my lower spine and can do nothing but lie there patiently for the next three hours until I’m ‘rescued’. We tried varying the dosage starting initially with one tablet and progressing up to three tablets just before going to bed but there doesn’t appear to be any discernible difference no matter what quantity I take. So I may not be reaping any of the benefits from these tablets but I am most certainly suffering from a couple of their side effects. I’ve been waking up every day with a very dry mouth and it seems to persist through most of the day despite drinking lots of fluids. But far more uncomfortable has been the terrible constipation that has plagued me all week. These tablets just seem to slow everything down to the point where it is difficult to pass anything, a most uncomfortable feeling. So today I made the decision to stop using Tramadol as it only seemed to be bringing new problems and not curing old ones. I had a telephone consultation with my GP today to see if there was any other painkiller but she was reluctant to prescribe any opiates as they would only make the constipation worse. Instead she is going to chase up the district nurses and I guess the OT people to see what can be done about getting a pressure relieving mattress for my bed.

Sad day

I suppose the writing has been on the wall for some time but I just didn’t want to believe it. (Selfishly) I kept hoping that things would change and everything would be back the way it used to be. But unfortunately it was not to be. Francesca has pulled out of my care package because of the escalating workload she has with her main job. For some time now Francesca has been performing a bit of juggling act trying to keep everyone happy, but the scope and responsibilities of her main weekday job have in recent months began to encroach on the weekends which of course is when I depend on her part-time care skills. This weekend was to be Francesca’s time with me but the demands of her full-time job currently have her working in Europe. Clearly with a care package like mine that is becoming ever more complex it is absolutely imperative that we have a team of carers that are reliable, flexible and willing to cover for each other. Francesca feels that with her current level of work she would not be able to commit to my care on a regular basis. Of course I was very upset to hear the news as Francesca was my longest serving carer and (perhaps naïvely) it had been my hope that she would be looking after me for the remainder of my journey. It’s also particularly frustrating that it should happen now when my needs are increasing by the month. Not only that of course but we had become good friends and I always look forward to the weekends and my time with her. But of course everyone has their lives to lead and Francesca certainly seems to be doing well in her full-time job so in that I wish her continued success. I would also like to thank Francesca for everything that she has done for me in the time that we have known each other. Although it was not her choice as a main career there was no doubt that she was a naturally gifted carer. I will miss having her around. However we shall continue to be friends and keep in contact so I daresay that she will continue to pop up on the blog from time to time.

Ann now becomes my longest serving carer and the last member of my original team.

100

Here’s a bit of blog trivia. Today’s post is the 100th unique post. That’s 100 separate updates to my blog in just over two years. I would have reached this figure a long time ago if last year’s daily events were posted individually (like they are now) instead of being grouped together several times a month. Anyway here’s to the next 100!

Mark

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2 Years of Blogging!

Celebrating two years of publishing to the web!

I’m in a bit of a celebratory mood today (Monday 15th). My blog is two years old! smile_party Wow, has it really been that long since I started writing about my experiences? I guess so judging by the volume of posts that have accumulated. Revisiting that first post again did make me chuckle a bit when I stated that it was not my intention to write in a journal-like day-by-day fashion because of course that is exactly what has happened as the blog has gradually transformed itself over the past two years. In fact thinking about it further the blog postings have increased as the disease itself has progressed, which consequently led to more to write about.

Looking back I can now see that setting up the blog was one of the best things I did. It has become a surrogate for work allowing me to keep my mind active and to give me an outlet to be creative and in control of something. Why? Because it is important to appreciate that MND affects the body and not the mind so ultimately it will only be my mind that I have left. I therefore want to make sure that this part of me continues to get used. Perish the thought that my mind would ever lay idle alongside my body!

I’ve tried to keep the blog fresh looking by continually introducing new elements and looking to see what can be improved. What started out as a text-only blog with a gallery of photos has evolved into something with a higher degree of pictorial content; some taken direct from a digital camera, whilst others have been created by myself using a variety of clipart and graphical tools. It’s these kind of things that I enjoy doing although I have to admit that in recent months they are becoming increasingly difficult to do. Adding the sidebar with links to various resources was another attempt at expanding the scope of the blog and offering further information to those interested in delving deeper.

But the biggest change to the blog took place last summer, in fact without it I could not have continued posting in its current form. But it is also the most transparent change I’ve made as you can’t actually see it directly. I am of course referring to the transition from typing to dictation using speech recognition software. I started to get really worried halfway through last year about how I was going to control my computer. My hands and arms were becoming increasingly difficult to move and as the weeks went by I was able to type less and less sentences without feeling out of breath through the sheer effort of trying to fight against paralysis. In a bizarre way it was mimicking what had been happening to my legs i.e. as the weeks went by I was able to travel a shorter distance from the house. The Dragon Naturally Speaking software supplied by AbilityNet and kindly funded by the MND Association has enabled me to continue using my computer but now for about 95% of the time using only my voice (I’ve got my fingers firmly crossed that I don’t lose my voice!).

Last November to coincide with my second anniversary since diagnosis I launched my audio blog designed to run alongside the main one. These are basically audio versions of my text postings and will serve the purpose of highlighting any deterioration in my voice over time. And purely from a vanity point of view they’ll preserve a little part of me that hasn’t so far been affected by MND.

One immediate change that you will have noticed from early in the month is the inclusion of an introductory welcome piece, something which the blog has been sadly missing. I’ve also taken the opportunity to write a short piece on what motor neurone disease actually is. Both of these new pieces will sit directly ahead of the blog and will thus introduce myself and the aims of the blog, followed by an overview of the disease.

Hindsight of course is a wonderful thing and looking back over the blog in its entirety there are a few things which I wish I had done differently, started earlier or even added which I didn’t. For instance I really wish that I could have added photos of all the people I have met along the way. But the problem was always not having anyone around to take the pictures. Even now most of my carers are not very comfortable using my camera (apart from Francesca) so I’m still limited in terms of illustrating the blog. I also regret not starting the audio blog right back at the beginning. Even though my voice as such has not changed it would have shown that I didn’t take frequent pauses for breath in mid sentence as I’m now forced to do. One thing I never got round to doing but thought about a couple of years ago was buying a video camera. I had the idea of using it to document physical changes such as difficulty eating, drinking, writing, walking etc. It’s a pity I never followed up on this one really as nothing would illustrate these difficulties better than seeing a moving image.

As for the future the blog will continue for as long as I am able to control a computer in some fashion. There are other technologies out there which I have no need of for the moment but am aware of. As the disease continues to progress I shall be looking into these as I try to stay one step ahead.

And finally, I would like to thank everyone who comes to visit the blog, especially those who have been kind enough to offer feedback, advice and compliments. It really is very much appreciated so thank you very much.

Mark

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Late Autumn (November) – part 1

Calendar entries highlighted in yellow

3rd of November – Wrapping up the training / An emergency repair

I had the last of my scheduled phone-in remote training sessions with Karen from AbilityNet this afternoon. It was really a chance to look at some of the things I was experiencing difficulty with in the weeks that I’ve been using the voice recognition software. One particular problem I had was getting the software to recognise certain names instead of confusing them with like-sounding words such as Ann & and. I explained to her that I was finding it infuriating that no matter how many times I repeated the words or how many ways I tried to say it the software would still refuse to identify it correctly. The way I was shown that this particular problem can be overcome was to treat the word as a command as opposed to dictation. So Karen has been showing me how to create commands this afternoon for those extra stubborn words that simply refused to be identified. So now every time I want to say ‘ Ann’ I have to say ‘ Ann without’ (in other words Ann without an E on the end). For the software to interpret my speech as a command instead of dictation I have to add a pause after I have finished dictating but before I issue the command.

Another problem I’ve noticed lately with the software is that for some reason the accuracy of its recognition abilities seemed to be diminishing over time which was particularly puzzling especially as I regularly updated the user files which in theory means that the software is learning and improving the more I use it. Asked if it was possible to delete the user files but I was told the easiest option would be to simply create a new user account which is what we did and after I had trained the software again the accuracy improved dramatically.

And that just about wrapped up my training for the software. I wouldn’t say that I’m an expert by any stretch of the imagination but I have enough knowledge now to be able to use the software for what I need whilst at the same time being aware of its limitations. I still have some unspent training hours but I shall hold these in reserve for a later date when I may wish to delve into some of the more advanced features. In the meantime I still have full support from Karen so I can always e-mail or phone her with a question.

* * *

It was Remap to the rescue today! I’ve probably mentioned somewhere in the blog that I have a foot pedal to flush the loo because my arms are too weak to operate the flush and it became too dangerous for me to raise my leg up and kick it down without upsetting my balance. Yesterday the cord between the foot pedal and flush handle snapped leaving me with no way of flushing the loo. My brother, who had called round with my weekly shopping that evening managed to make a temporary repair that got me through the night. So today I contacted Terry, a Remap engineer, who turned up at my door less than an hour later to assess the problem. He then drove off to the local hardware store and returned a little bit later with a length of chain which appears to be far more robust than the original cord. So thanks to these wonderful people I am now able to perform one of life’s daily tasks independently once again.

5th of November – Care package upheavals

Where do I begin? How about ‘I spoke too soon’! In a recent blog article that I wrote summarising my first year of having care in the home I ended by saying that it takes only one person to pull out from my care package for it to be disrupted. Guess what, the care agency contacted me today with the news that Kim has left the agency. It’s another hammer blow as all my hopes for a stable care package after months of disruption had been pinned on her. Everything had been going so well and I counted my lucky stars that I had finally found someone with the right skill set, attitude to work and personality. I had begun to relax a little in the belief that everything would settle down. Surely everything would be okay this time as she’d been with the agency for a number of years? And now everything is in pieces again and I’m back to where I was early in the summer with large gaps in my care plan and no default carer in place. In fact I’m even worse off as recently Francesca has decided to cut her hours back because of her growing commitments elsewhere and I had been hoping that Kim would be able to step in and fill the vacant slots. It’s a double hammer blow that has left me reeling and feeling really down. I seem to be really unlucky with my carers. No sooner have I found someone with all the right qualities and got to know them so that I feel comfortable with them coming and going, and they are leaving. What is it with the care industry? It was with Kim that I had hoped to be spending my social hours during the week so that I would at last be able to get out of the house on a regular basis instead of being shut indoors most of the time. Some days I just feel like giving up.

8th of November – A day of learning / Locked out!

I’m struggling to use my computer quite badly at times. As my upper limbs slowly become nothing more than inanimate objects I am finding it increasingly difficult to interact with the one thing still left open to me. It doesn’t seem that long ago that I received my speech recognition software and yet here I am now becoming ever more dependent on it, not just to type e-mails or update this blog, but also to navigate my way around the whole of my computer system. Nowadays I can barely type a sentence using the keyboard without feeling exhausted because of the limitations in moving my arms far from my body. So to compensate I end up leaning my whole upper body in one direction or another so that my hands can reach the keys. Of course trying to operate a computer in this fashion soon starts to cause my muscles and back to ache.

Initially I saw speech recognition as a niche product that I would use to supplement my hands when they tired. But already I’m having to elevate it in importance because I simply cannot be productive anymore with my hands. I am very aware however that speech recognition software is not a universal solution for hands-free computing. In fact it was never designed for disabled people or for doing anything more than converting speech to text for the purpose of creating business documents.

Just lately I’ve become increasingly frustrated at how long it’s taking me to do things on the computer. Before I had MND I used to be able to work a computer very quickly but now my physical body is no longer capable of keeping up with my racing mind. So today I’ve been ploughing through the user guide (the electronic version of course) trying to memorise the various vocal commands to extend the versatility of my voice recognition software. It’s actually been quite an interesting exercise as I’ve learned quite a few new tricks. I didn’t know for instance that you can move the mouse cursor in any direction by issuing voice commands (albeit slowly), or that you can get it to perform single-click, double-click and right mouse click operations.

I keep setting myself targets to see how long I can operate my computer without touching the keyboard or trackpad. Admittedly it is not very long at the moment as I’m trying to fight against 30 years of keyboard use, but it is nevertheless improving as I get to grips with starting programs, moving between open windows and tabs, surfing the Internet and inputting text. And as I have already said before, voice recognition is not 100% reliable, suitable or fast in certain situations. But I am already dependent on it and can never go back to typing on a keyboard. The fear I have now is that I am dependent on my voice not degrading.

* * *

I had a bit of a panic this evening. The carer for today (not one of my regulars) had fully closed the bathroom door before she left. I only found out when I attempted to visit the bathroom and discovered that I could not operate the door handle with my paralysed arms. I was locked out and needing to get in! I had to make a quick emergency phone call to my next-door neighbour to ask him to come round and open my bathroom door which fortunately he did straightaway. I felt really embarrassed having to ask someone to do something so trivial, but not half as embarrassed as I was sitting in my study undressed!

10th of November – eBooks: take 2 / Audio blog experiments

Much earlier in the year I wrote a rather lengthy blog article on electronic books (eBooks) and the new Sony Reader which I had invested in the previous autumn. Although the whole concept of downloading books and storing whole libraries on a device no larger than a paperback which could be carried around with you had a certain appeal, I concluded that it was still early days for the technology and that the choice of books available was extremely limited. The Sony/Waterstones partnership has pretty much had the market to itself for the past year or so in this country and yet I feel they have done little to secure a strong foothold before the mighty Amazon juggernaut rolls in. Each week I pay a visit to the Waterstones website hoping to find some new releases of my favourite authors only to go away disappointed yet again. Consequently despite owning an eBook reader for over a year now I have read very few novels on it. In fact the disease has already moved the goalposts and I am no longer able to operate the device effectively. To overcome this I’ve been experimenting with reading directly off my laptop screen. This is possible because eBooks purchased are first downloaded to the PC’s hard disk. Using the Adobe Digital Editions software it is possible to view these files without first transferring them to a separate eBook reader.

This autumn Amazon launched the Kindle eBook reader in the UK along with a far larger choice of books for downloading. The Kindle works in a fundamentally different way and doesn’t require a computer to purchase and download books. Instead the device itself is able to connect to the Amazon store via wireless technology and download the books directly to the internal memory. I might have been very tempted to buy one of these devices simply because it would have opened up access to a far greater selection of books, had it not been for a piece of software that I’d heard Amazon was developing. Today Kindle for PC was released as a free download. Basically it’s a piece of software not dissimilar to Adobe Digital Editions which allows you to read and organise your eBook collection directly on a computer screen. So even without spending a couple of hundred pounds on hardware it is now possible to access several hundred thousand eBook’s available in the Amazon store.

There is one catch with all this and that is the Amazon Kindle uses its own proprietary file format whereas the Sony Reader uses the industry-standard EPUB format. Unfortunately neither device can read the other’s books. In a way it doesn’t really matter if you only plan to read your books on a computer screen as it just means loading up a different program. It would only become a problem if you wanted to read your books on the go and in this case you would need both sets of hardware. If my situation was different I would be concerned about competing formats but all I really care about now is having access to the books I like, not whether they can be read by any device in the future.

Anyway I’ve been dying to get my teeth into a good novel for a long time now. It’s so frustrating having a couple of shelves full of paperbacks that I can no longer read. I couldn’t download the software quick enough and within minutes had purchased and downloaded a couple of novels I was keen to read. I’ll probably return to this subject in a future blog entry as reading is something close to my heart. In the meantime I’ll be trialling the software and enjoying once again the thrill of a good novel.

This is the home screen which displays all the books that have been purchased and downloaded. Progress bar running along the bottom of each book icon gives an indication of how far through the book you have read. A shortcut menu presents various options such as start reading from the beginning or view a table of contents.

Here we can see the cover artwork in more detail as well as a list of bookmarks which can easily be navigated to.

This is the main reading screen which provides an uncluttered view. However, all that white space on a backlit LCD screen is not exactly restful on the eyes, which of course is where E ink scores points as it is a reflective technology.

* * *

Something else I’ve been experimenting with today is creating audio blogs using a free piece of software called Audacity Portable. There’s a couple of reasons why I’m looking into this. The first is a desire to preserve a little bit more of myself for when I am not here, a sort of legacy if you will and another attempt at reaching beyond my years. The other reason is to record my voice as it is now and then through successive recordings show how it might change as the disease affects my speech. In some ways I wish I had started this right back at the beginning of my blog as it would have given a more complete picture. Although I can still talk perfectly normally I do need to take more frequent pauses because of my diminished lung function. This was quite noticeable when I attempted to narrate the entire Second Anniversary blog article by the end of which I was feeling quite tired and a bit out of breath. This is something I’ve noticed more recently now I am becoming ever more dependent on voice recognition software. Anyway by the time you read this I should have uploaded the first recording. Just don’t expect anything too special. It’s not like I have a distinctive voice like say David Attenborough or Richard Burton!

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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