Friday, October 1st 2010

Computer assessment

A little while ago I was listening to the soft melodious tones of flute music drifting into my room accompanied by the delicate voice of a young girl singing and playing to her unconscious mother in the room opposite mine – a deeply touching experience. I’ve heard it said that you’re hearing is the last thing to go so I do hope that this alternative attempt for a daughter to reach out to her mother is successful.

Now I’m sitting at my makeshift desk (basically an over bed table) in my room here at St Michaels Hospice with a feeling of contentment. The new air conditioning system is pumping out enough heat to make me feel like I’ve taken up residence inside an oven, whilst outside it is cold, dark and damp. I’ve just finished eating a rather large portion of delicious strawberry cheesecake which was washed down with a nice cuppa, and now I’m just casting my mind back over the day’s events before I settle down and watch some catch up TV documentaries courtesy of the BBC iPlayer.

* * *

I had a meeting with Peter from AbilityNet this morning to discuss my ongoing difficulties with using a computer and to perform an assessment of needs. For the past couple of months or so my legs have been steadily growing weaker and even the simple act of using my feet to operate a trackball and mouse buttons can soon tire them out if I repeat these functions too frequently. In fact I have had a few situations where my feet become so tired that they simply paralyse and all I can do is look at them in frustration. This is indeed quite frightening and very stressful and so consequently the more stressed I get the more they refuse to cooperate. It’s a vicious circle.

Why use foot controls at all when I have speech recognition software you might ask? After all this post you are reading is being put together entirely using the Dragon NaturallySpeaking software. Part of the answer is that I am an advanced computer user with more than 30 years experience and therefore my computer needs are greater than those of a casual user who may only need to write e-mails and surf the Web. If that’s all I wanted to do I too could probably get by using just speech recognition software. But that is not the case and in fact for me the computer is the gateway to many things and sadly speech recognition alone is never going to allow me to fully access and interact with the many different software packages and web applications that I use. For instance my version of Photoshop Elements which I use for all the pictures in this blog flatly refuses to even load if I am running Dragon. In other instances Dragon fails to identify various options, menus and text boxes which make up a program interface or webpage. This is where an alternative means of pointing to something becomes necessary and how I have arrived at a speech recognition/foot control hybrid solution to all my computing needs. To be effective and reasonably productive I rely heavily on both of these technologies but unfortunately one of them is now under threat and I’m starting to get worried about the consequences.

So before we reach crisis point I have asked AbilityNet to start thinking about the problem now whilst we still have a little bit of time left. I of course had already done a little bit of research myself on the Internet trying to find out what sort of hardware and software solutions were available. Now it was time to seek out the advice of the experts in the field of computing for the disabled in the hope that they can come up with some much better ideas than I have found.

So what’s out there? Well there are various tracking systems that use cameras. The simpler ones follow the movement of a dot placed on the forehead or a cap and then replicate that movement on-screen using the cursor. Mouse buttons are replaced by switches which can be ‘bumped’ with the head. Apparently they take some getting used to and not everybody likes them. The more advanced systems use eye tracking software in combination with the camera to monitor where you are looking on-screen which in turn tells the software where to place the mouse cursor. The systems are generally expensive.

Unfortunately I’ve come away from the meeting without learning anything I didn’t already know and I’m slowly coming to the conclusion that when I am forced to move to the next level of technology my ability to interact with the computer in the many ways that I do now will be compromised. For someone who depends so heavily on computers it is a depressing thought. Fortunately the legibility of my voice remains good although volume at times isn’t what I would wish it to be, nevertheless it is good enough to use voice recognition software and so for the foreseeable future the blog (at least in a textual sense) is safe. Creating graphics and performing photo edits may eventually be beyond me and I think if that ever happens I will be an unhappy bunny. But it’s not the end of the world yet. Peter has left saying that he will talk with his colleagues and do some research on the Internet to see what other options are available.

Before I leave this subject let’s just open it up to the audience. Is there anyone out there reading this that has experience of or knows of someone using hardware or software to control the mouse cursor without using their limbs? I’d love to hear your thoughts on how effective the solutions you are using are. The comment field at the bottom of this post is waiting…

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Staying on the subject of technology, Bernie, the hospice’s very friendly and extremely helpful IT manager dropped by this afternoon to set up a new version of his high-tech call system. You may remember from my last visit to the hospice how Bernie came up with the idea of using my laptop computer to access a PowerPoint presentation on another laptop computer in the room where the nurses are based. The idea is that I can click on various icons to activate a variety of messages that I have recorded in my own voice. So for example if I became thirsty I could click on an icon that would say “Hello this is Mark in the Stratfield room, please may I have a drink?” Well I’m pleased to say it’s back up and running again although I did have to re-record all my messages as the originals got deleted. At least now I have a means of summoning help during the day when I work. One less thing to worry about.

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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Heading for Autumn (September) – part 3

Calendar entries highlighted in yellow

14th September 2009 – Training day

Karen from AbilityNet phoned this afternoon to begin my remote access training for the speech recognition software they recently supplied me with. As part of the support package I am entitled to 6 one-hour lessons. I had the choice of either having somebody call at my house to deliver the training or to do it over the phone with my computer logged into their system so they could watch what I was doing. I chose the remote training partly because I was being told that it would take longer to arrange for somebody to come out to the house and I was keen to make a start as soon as possible. I’ve actually been playing around with the software on my own for some weeks now so have managed to work out some of the basics by myself but I’d be the first to admit that I’m only using a small amount of its features; just enough really to write this blog and to send e-mails.

We began this first lesson with me explaining some of the problems I’ve been experiencing getting the Dragon NaturallySpeaking software to work with a webmail account. For some reason it just does not seem to be able to work inside the mail application, so as a workaround I’ve been writing all my e-mails within Microsoft Word and then copying and pasting them into the webmail application. My tutor and I played around for quite a while trying different things but all to no avail so she’s going to speak to the software publishers. One option I was given was to use a desktop e-mail client such as Windows Mail or Outlook Express which would work much better with the speech recognition software. The problem with this however is that all my e-mails and contacts are then stored locally on my own PC’s hard disk. There are several disadvantages to this; the first is that I then need to remember to back up these files regularly in case of data corruption, hard disk failure or even theft. The second is that I could no longer access my mail or contact details on another computer which could be a problem if I were ever to leave the house for any length of time.

Leaving webmail aside (because we were spending too much time on it and not getting anywhere) we turned our attention to accessing by voice the various options available in Microsoft Word 2007. Here we fared a lot better and I was able to see that once I understood the various voice commands I could create documents with a variety of formatting options. I’ll play around with this bit over the coming week ahead of my next lesson and make a note of any questions I have. I think my biggest concern at the moment would be how effective the software is in being able to control web-based applications. This seems to be the way things are developing so there is definitely a need for people in a similar situation to myself to be able to control these applications by voice. It will be interesting to see what the software publishers have to say.

17th September 2009 – Shadowing / A meeting with Lara / Update on house extension

I woke up this morning to find two women smiling down at me! Not a bad way to wake up and start the day I thought :-). Kim had come along to shadow Ann so she could familiarise herself with my morning routine. At the moment I don’t really have an ideal backup to Ann so we are trying to get somebody else that I feel comfortable with to do my personal care when Ann is on holiday. Kim would be ideal as we already get on well together despite only knowing each other a short time, plus she has plenty of experience. I must say I felt even more pampered than usual this morning having two lovely ladies attend to my needs. I thought to myself I could really get used to this! It was also the first time that they had met each other and I found it encouraging that they both seemed to like each other and worked well together – something they might need to do later on when lifting and handling me will require a double up i.e. two carers.

Lara called round this afternoon; that’s my palliative care doctor, not the explorer on the computer game series! 🙂 Just thought I’d make that clear. We had quite a long meeting today as we’ve not seen each other for some time and covered a whole range of topics including my respiratory tests, planned adaptations to the house, physical and mental well-being, and the current state of my care package.

Looks like things are starting to move again on the proposed extension to the house. In Touch, the company overseeing the project are now going to prepare the drawings for planning application. We’ve settled on building an extension on the side of the house as opposed to the rear of the house. In studying both sets of drawings and weighing up the pros and cons I chose this option for the following reasons:

  • It will make use of dead ground at the side of the house that I cannot see anyway when sitting in the living room
  • Having an extension running the length of the house should provide some additional insulation for my living room which gets cold in the winter as I am on a corner
  • It will preserve my back garden and I will still have something nice to look out at when sitting at the dining table near the patio doors
  • My dining room will continue to receive plenty of light as there will not be an extension blocking off the light from the patio doors
  • It will avoid the problems of having an inspection hatch in the wet room for the sewer which runs through my back garden (there is a drain cover next to my patio)

The only thing that concerns me is that I’m being told that it may take a bit longer to get the planning approval. Up till now I’ve been told that it can take up to 12 weeks to gain planning approval so I wonder how much longer it will take. Either way it looks like being a winter construction project with completion due in the early spring. I’ll breathe a sigh of relief when it’s complete as I’ll finally have a downstairs bedroom and bathroom so could effectively live on the ground floor like in a bungalow. The upstairs rooms would then be available for guests or carers.

18th September 2009 – An afternoon at Milestones

Sometimes we can travel far and wide in search of interesting places to visit and yet miss those rights on our own doorstep. Such is the case with the Milestones Museum, Hampshire’s living history museum which was where Kim and I spent the best part of four hours of my social time this afternoon. Kim had suggested yesterday I might like to visit Virginia Water and I jumped at the chance, but when I woke up this morning it was a very dull and overcast day which showed no signs of improving by the time Kim arrived just after midday. So we quickly altered our plans to an indoor venue and Milestones immediately sprang to mind as it had been somewhere that I had been saying to myself ‘I must pay it a visit’ ever since it opened around 2000.

The museum is housed in a modern, spacious and purpose-built building on the Basingstoke Leisure Park. From the outside it can look a bit deceptive but inside the whole display area is sunk below ground level and it’s surprising how much they have managed to pack in. It is laid out in a series of cobbled streets, tramways, full scale buildings and vintage vehicles from the Victorian age onwards. In fact it’s a little bit like Flambards down in Cornwall. The focus of the museum is to show how people lived and worked in the Hampshire area over the past 200 years or so.

Kim and I were each given audio handsets and a map of the museum. The idea of course is to key in the number adjacent to an exhibit and then listen to the commentary. I of course couldn’t do that because my arms don’t work so Kim not only had to push me around in my wheelchair, but also had to fiddle around with the two handsets which was quite a juggling act at times. Our tour of the museum started in a mock-up of a Taskers Ironworks from the 18th century where a film was projected onto a screen depicting an actor in a period costume telling the story of how they made steam engines. From here we made our way to a sawmill where a (non-working) stationary steam engine powered various tools via a series of pulleys and drive belts.

The main street, which was cobbled, played havoc with the wheelchair. I really did get shaken to bits and it can’t have been easy for Kim either. To make matters worse (or more authentic if you wish to look at it that way) the street was inlaid with tram tracks so those with mobility problems need to take special care. I didn’t mind though as it all added to the atmosphere. The streets were lined with the typical sort of shops that you might find in any town at the end of the 19th or beginning of the 20th century such as a greengrocers, a tobacconists and even a pub which apparently serves real ale. We followed the cobbled street past a tram car, a gypsy caravan and an assortment of steam engines to a railway station ticket office inside which was a beautiful replica model railway of Winchester Station. Opposite the ticket office a coal wagon sitting in a siding complete with authentic looking weeds growing between the sleepers, was being unloaded and bagged up and placed on the back of a horse and cart ready for delivery.

Passing through a tunnel ‘transports’ the visitor to the 1930s or 40s. Again there is a selection of shops including a music shop where you can listen to popular tunes of the day on old 1930s gramophone players. Just outside there’s a lovely fire engine and one of the old familiar but fast disappearing red telephone boxes with a very old Bakelite phone. Across the street there is a little green with a bandstand and adjacent to this are a series of authentic posters one of which I couldn’t resist having my picture taken next to. It had nothing to do with the fact that she was a pretty girl :-).

The final part of the museum tells the story of Thorneycroft, a major employer of the area in days gone by. There’s a small selection of their vehicles on display too. In addition to the main exhibits were various displays and set pieces. One for instance shows home life through the decades through a series of decorated rooms such as a kitchen from the 1960s and a living room from the 1970s. There was even an old Commodore PET computer on display, already looking antiquated in these fast changing times of ours. What really caught my eye was a fascinating collection of old cameras dating from way way back. Sitting on the shelf was an old Bakelite Kodak Cresta just like the one my mum passed on to me when I was a child, and close by was a pack of expendable flashbulbs the size of hen’s eggs. Further along the display and moving forward in time I could see examples of cameras that in their day I had dreamed of owning and in some cases had.

Time passed quickly (no pun intended) whilst we were in the museum and I could easily have spent a few hours longer enjoying everything that was on offer (I have a fondness for history) but already the afternoon was drawing to a close so we made our way back up to ground level for a coffee and biscuits in the restaurant overlooking the cobbled streets and houses. It had been a really enjoyable afternoon and I would like to say a big thank you to Kim for taking me and looking after me so well and for taking the photos. I’m already looking forward to our next outing together.

Interior view of the Milestones Museum

At the Milestones Museum

Ahh here we are in the 60s kitchen and you can see behind me one of my carers preparing my evening meal. She's not as good as Ann, Francesca or Kim though. To be honest she's a bit of a dummy! The kid doesn't say much either 🙂

Posing!

With Kim, my lovely new carer

This one is interesting. I found it in the museum' s archives proving that at some point in the future I must 'borrow' that DeLorean from Beaulieu and travel back to 1895 where presumably I have met Kim's great-great-grandmother! There is an uncanny resemblance between them don't you think? 🙂

19-20th September 2009 – Treats / A surprise invite

I had a couple of food treats this weekend, simple things to be sure but lovely when you haven’t had them for a long time. Earlier in the week Francesca was asking me what foods did I miss and I told her how much I used to enjoy crispy baguette bread which I used to buy every weekend and stuff with various fillings. Unfortunately as my strength faded I lost the ability to use a bread knife to cut it. Eventually my hands became so weak I could not even hold the bread. So it was a real treat on Saturday morning when Francesca was making my breakfast that she surprised me with a delicious crispy bacon and fried egg baguette – delicious! I still couldn’t hold it of course so Francesca did the honours whilst I took bites out of it like a hungry alligator!

On Sunday I had another food treat for breakfast when Kim, who was standing in for Francesca, cooked me a delicious bacon and cheese omelette. It brought back pleasant memories from a few months ago when Alison used to make them for me on a regular basis. But what really made them special was the fact that Allison kept chickens and would often bring over a bucket of fresh eggs. Omelettes made from these eggs were both delicious and bright yellow and a world away from the eggs bought in a supermarket.

I had another surprise on Sunday when Val (my friend from Basingstoke neighbour care) phoned to ask if I would like to join her and Jim on a trip out into the countryside that afternoon. They were off to visit a private garden just west of Stockbridge near Broughton that was being opened to the public for the day in aid of charity. I jumped at the chance, both eager to get out of the house for some fresh air and also having a chance to socialise with friends. To be honest the gardens were nothing outstanding and it looked like most of the flowers had peaked some time ago, but it was still a pleasant break from the monotonous routine of daily life and be in the company of good friends.

With Val at a private garden open day

With Jim at a private garden open day

With Val at a private garden open day

With Jim at a private garden open day

So all in all not a bad weekend. I’d like to thank Francesca and Kim for the delicious breakfast treats they cooked me, and a big thank you to Jim and Val for the kind invite to take me out and for also having the patience to learn how to use my camera.

22nd September 2009 – Further training

Karen from AbilityNet phoned this afternoon to deliver my second training session on the Dragon NaturallySpeaking speech recognition software. Over the past week I’d been playing around in Microsoft Word 2007 familiarising myself with some of the things that we’d discussed in the first lesson such as accessing various tools on the ribbon bar. I’d also been making a mental note of things that I wanted to touch on this week such as problems with certain programs coexisting with Dragon NaturallySpeaking. I had found for instance I could not load Adobe Photoshop Elements 5 into memory if the speech recognition software was already loaded. I had also discovered that I could not access the various menu options, toolbar buttons or dialogue boxes for this program either. After spending considerable time looking at the problem Karen had to concede defeat as well so it looks like I will be relying on the laptop’s trackpad and my foot controls when editing digital photos. I was kind of hoping that I might be able to use my voice to navigate around the menus and to specify numeric values when applying a tool or effect to the image.

We also looked at basic web navigation this afternoon and here the programme seemed to fare a little bit better in terms of accessing Web addresses and hyperlinks. However the program struggled to access my website bookmarks in the favourites menu called up from the toolbar and required some rearranging of the screen furniture to get this to work. Another area where the program struggled was accessing my online calendar which I use for organising all of my medical appointments and meetings.

At the moment I’m left with the feeling that outside of its comfort zone of dictating letters and e-mails the program is of limited use. I’m really disappointed in its poor control over web-based applications. To me this seems extremely short sighted as more and more applications are becoming web-based and this is an area which I feel software developers need to concentrate on. So for the foreseeable future it looks like I’ll be using a hybrid selection of input devices to enable me to continue working on a computer. I’m still entitled to a few more remote training sessions but have not scheduled another one until the week after next so that I have time to digest what I have learnt.

25th September 2009 – A night in A&E

It had to happen sooner or later, the writing has been on the wall for some time now and I’ve been saying to people that using the stairs was an accident waiting to happen because of the weakness in my legs and the unpredictable nature of keeping myself balanced. Descending the stairs has become traumatic, and with the (currently useless) stairlift track occupying the widest part of each stair tread, I have to be extra vigilant. For this reason I try to minimise the amount of times I use the stairs each day (to use the bathroom) by regulating my liquid intake to certain times of the day. But inevitably there are occasions when I simply have to use the stairs outside of the times when there are carers here. This afternoon at just after 4 PM was one such occasion. As I stepped off the landing to begin my descent I suddenly lost confidence in my ability to keep myself balanced as it started to feel I was going to fall forward. I quickly stepped backwards onto the safety of the landing but I was already too late and continued to lose my balance only this time I fell backwards rapidly and smashed my head into the panelled door of my study before falling in a crumpled heap on the carpet. I didn’t lose consciousness but really did hit the door hard as it made a terrific noise. Lying helpless on the floor all I could do was twitch my arms, but as I moved my head from side to side I could hear the carpet squelch as if I was running my head over a wet sponge. I realised with a sickening feeling that I had cut my head open. The question was how serious? Unable to move and inspect it myself all I could do was lie there helpless and try not to move my head too much for fear of making it worse.

Frustratingly I had no idea who was going to do my care that evening as despite the lateness of the hour the care agency had not yet allocated somebody to do it and were struggling to find someone. I lay there wondering who it would be and how competent they would be. If it was somebody new or with little experience would they be intelligent enough to investigate when I didn’t answer the door or would they just assume I was not home? The thought of lying on the floor all night with my head bleeding, was to say the least rather frightening. When you have nothing more to do than to look up the ceiling time passes incredibly slowly and I became increasingly worried as the light started to fade and there was still no sign of a carer. Eventually I heard a car pull up on my driveway and the familiar jingle jangle of Ann’s bunch of keys. I breathed a sigh of relief. The bell rang and all I could do was gaze helplessly at the intercom unit just a few feet away on my desk. I shouted as loud as I could ‘help me’ but there was no response as she couldn’t hear me. Fortunately Ann is an experienced carer and used her own key to gain access. I called out to warn her that I had taken a fall so that it was not such a shock when she found me sprawled out on the blood-soaked carpet. She immediately contacted the emergency services and within a few minutes the first responders arrived to assess the situation. The guy who inspected my wound said I had lacerated the back of my head and it would need stitches or gluing. He said that he would try to keep me out of A&E by trying to arrange for somebody to come to my home but unfortunately there was nobody available. A call was put out for an ambulance. In the meantime the first responders got me to my (unsteady) feet and helped me to the bathroom as by this time I was really desperate to use the loo. It was quite an experience I can tell you standing at the loo being held up and supported from behind by someone whilst Ann fumbled with my clothing, all the time being watched by another woman who had turned up to assist. Under these circumstances it is hard to ‘go’.

The next hurdle was getting me down the stairs. Fortunately I have a stairlift and although it’s not much use by myself is usable if there are a couple of people around to assist me into it and control it. Within a couple of minutes of placing the call an ambulance arrived outside the door and the paramedics took over. They supported me under my arms and helped me walk gingerly to the front door where I was loaded onto a stretcher and then placed in the back of the ambulance and taken to the A&E Department of the Basingstoke Hospital. So far everything had worked quickly and smoothly but once we were in the A&E department things ground to a halt. It was Friday night and the department was very busy. They found a cubicle for me and transferred me to a bed. Ann, bless her, had followed us up in her car and sat by my bed for hours holding my hand and offering comfort. She also very kindly contacted my brother to let him know the situation and advised the care agency of what had happened to me.

Hours passed with no progress. My right shoulder blade was starting to feel very uncomfortable and a little bit painful so we asked the nurse for some pillows to rest it on. I took the opportunity to ask where we were in the queue and explained my situation. She went away to find out and came back saying that she had arranged to have me looked at next. I was then wheeled into another room where a Oriental doctor took a look at my laceration after cleaning the wound. My eyes bulged wide when I saw him take out a staple gun! I became rather worried at this point as I knew from painful previous experience how much it hurt just getting a staple in your finger. Goodness knows what it would feel like having them in your head. I expressed my concern to him but he told me that if he anaesthetised that part of my head it would still require several needles which would hurt about the same so I might just as well have the staples straight away – gulp! Well it did hurt but surprisingly not as much as I had imagined. He put three staples in my head.

Whilst we were seeing the doctor, Di, a member from the All Care management team dropped in on her way home from working late at the office to see how I was and what could be done to help me. She suggested that because I lived alone that it would be a good idea that I didn’t go home this evening as there would be nobody there to care for me if a problem arose. As it was close to midnight and I was still feeling very weak I readily accepted the suggestion. Di negotiated with the hospital staff for me to have a bed that night then she and Ann went home whilst I lay on the bed waiting for them to organise things. Eventually at around 12:45 AM I was wheeled through the corridors into the short stay ward where I was given my own room. After taking my blood pressure and temperature and asking me what I wanted for breakfast I was finally able to get some much needed sleep.

26th September 2009 – A day in A&E

Trying to get to sleep in unfamiliar surroundings can sometimes be difficult and so it was with me that night as the various noises of staff going about their business, doors slamming and plumbing & heating systems switching on and off intruded into my sleep. I was finding it very difficult to get comfortable; my right shoulder was really starting to ache and I was suffering with painful cramp in the toes of both feet. So when the night nurse dropped by to see how I was I asked her for some painkillers. For a while it did help and I was able to get some light sleep. I woke up at 7 AM to find a nurse in my room wanting to take my blood pressure and temperature again. At 8 AM a (student) nurse came in and introduced herself as Helen and said that she was there to help feed me. I had only taken a few mouthfuls of cereal when the familiar and very welcome face of Francesca appeared. She had just been notified of my situation by the care agency and had dropped everything to rush to the hospital to be with me. I was deeply touched by her concern for me and I felt so happy to see her. Francesca had not only come to pay me a visit but also to participate in my personal care and liaise with the nurse.

After breakfast a doctor came along to examine my head wound. They were ready to discharge me when Francesca voiced her concerns about sending me home so soon to an empty home. She argued that it would be better to leave it until later in the day when she would be there with me to cook my dinner. This was agreed on so for the remainder of the day I just lay on the bed and the chair adjacent to it and relaxed. After lunch my brother Jason dropped by to see how I was and to keep me company for a while and then I was alone again for what seemed like ages until my brother returned to take me home. I’d been off my feet practically an entire day so felt particularly weak in my legs and lacking in confidence to walk very far. I wasn’t going to attempt to walk all the way through the hospital anyway and was transported out to my brother’s car in a hospital wheelchair. In the meantime Francesca had gone back to my house and had cleaned the blood off the carpet, made a start on my dinner, and was ready to help assist my brother get me out of the car and safely upstairs using the stairlift.

It felt good to be home but the accident will change things forever. I no longer have the confidence to tackle the stairs using my own legs. My ability to keep myself balanced when climbing or descending steps is getting worse all the time and I just don’t want to take the risk. This time I was very fortunate because I fell backwards instead of forwards. It could easily have been so much worse had I tumbled down the stairs. The problem I have now is that I just cannot use the stairlift on my own because of the previously mentioned problems. To complicate matters further Liftech are coming in on Monday to remove the top section of track and take it away with them so that they can extend it. That means I shall be trapped upstairs until they return with the new piece. So for the next week I shall be living on the upper floor of my house where I will have access to my bedroom, bathroom and study. Just as well I don’t have any appointments that require me to leave the house.

Over the past 24 hours I’ve been fortunate to meet some really kind and caring people, the true unsung heroes of this world. I can’t possibly remember all their names but would like to thank Steve (the paramedic who took care of me in the back of the ambulance) and Helen (the student nurse who cared for me Saturday). These people work hard and tirelessly for all our benefit. Some people may knock the NHS but I for one am very grateful that we have it. All the people I dealt with were kind, caring and keen to please.

I would also like to express my gratitude to Ann and Francesca for all that they’ve done for me. They are without doubt both very good carers but this weekend their loyalty and devotion to me was amazing and reinforced my belief that I am truly lucky that I have such kind and caring people looking after me.

And finally, what about those staples in the back of my head? Well the hospital will be contacting the district nurse who will be coming out to my home around the middle of next week to remove them. I am so looking forward to that – not!

27th September 2009 – Settling in

My brother came around mid-morning and has re-situated the laptop computer and plug-in USB peripherals (Gooseneck microphone, foot switches and external speakers) so that they are now located on my desk in the study upstairs. At least now I have access to the outside world again. I am truly lost without my computer. Thank goodness then for portables and wireless Internet connections. These technologies really do make life easier for people like me. Back online I was able to start catching up on e-mails and writing some of my own to inform my healthcare professionals of my accident.

A couple of problems with being based upstairs have come to light straight away. The first is that at mealtimes there is limited legroom under my desk. So although there is room for food and drink I just cannot get close enough to the edge of the table for my arms to reach it. Consequently I will have to rely on my carers to feed me. This isn’t so bad though as I have been gradually moving in this direction for some time anyway. In fact there is a significant advantage because it saves me from having to constantly bend down towards the plate so my lower spine does not ache so much.

The other problem is that I cannot undress myself upstairs as there is nothing of suitable height for me to lean against. This will leave me with no other choice than to have my last carer of the day help undress me even though I’m not ready that early for bed. But again to be honest I was not far off this point anyway. I’ll need to discuss this soon with my care manager.

28th September 2009 – Life upstairs

And so it begins, my week of confinement to the upper floor of my house. In truth it probably won’t be so bad because most of the day I’m just sat at the computer anyway so I suppose it doesn’t really matter that much whether I do this at the dining table downstairs or in my study upstairs. It becomes a little bit more of a problem when I have appointments at the house but we’ll just have to manage.

Starting today Kim is taking over the two-hour Monday morning call from Ann, an arrangement that I think will please everyone. Ann will regain her Mondays which she only picked up as a favour to me when Alison left, Kim will benefit from more hours with my care package, and I’ll benefit by having three main carers familiar with my morning routines. And it was a nice relaxing morning too with both of us singing along and playing spot the intro to music streaming off the Internet whilst Kim busied herself around the house.

Liftech called this morning to remove the top section of the stairlift track. They have taken it away so that they can extend it. I hope to have it all back by this Friday and I have stressed the importance of this by telling them that I had an accident last Friday and that I am now confined to the upstairs.

29th September 2009 – Training for the girls… or at least some! / Another update on the house extension / Chatting to my OT

My care agency has let me down again. I had gone to all the trouble of liaising with Margaret, the community physiotherapist to have some further training for my existing carers and have some new carers trained up, and what happens? The only people that turned up were my ever loyal Ann and Francesca who had come along to learn the additional techniques I have requested for my hands which are becoming difficult to clench – the opposite to what is normally expected for people with MND. I had really hoped to be able to get some of these other people trained up so that when Ann goes on holiday soon I will have someone else who can step in. The last time I had to go all week without my passive arm movements I knew about it the following week.

I’ve been sent the elevation plans and modified floor layout of the proposed house extension. It all looks quite nice with sufficient room for my needs even with a large hospital size bed. They are ready now to submit the drawings for planning approval which I’m being told they expect to have within 8 to 10 weeks. I’ve written back granting my approval so now it is just a waiting game. Assuming all goes well we are on track for completion of the entire project by the end of winter/early spring. That’s still a long way off of course and a lot can happen to me in that time.

I had a 90 minute chat on the phone with my OT this evening bringing her up to date on events over the past few days and making further requests for equipment. For example I’ve asked for a modification to the front doorstep as it is too big a drop now. Every time I step off it onto the tarmac driveway it affects my balance and I’m in danger of toppling over. I’ve also asked her to take another look at emergency lifelines as I could surely have done with one of these last Friday instead of having to lie on a blood soaked carpet for three hours. I’ve mentioned telephones too as my cordless phone is hard to operate at times and requires me to stand up to get my arms into position as I cannot simply just reach out.

30th September 2009 – Duvet wars! / The District Nurse calls

A sure sign that my legs are getting really weak is the fact that I’m struggling now to lift a duvet cover with them whilst lying in bed. I had need early this morning to visit the bathroom so I used my legs as I always do to kick the duvet away. When I came back and fell back into bed (quite literally these days) I had a devil of a job trying to reposition the duvet so it covered me again. When I had kicked it off the bulk of it had fallen off the end of the bed and the sheer weight of that much duvet was too much for my legs to lift. So once again I rolled out of bed and tried grabbing each side of the duvet in turn with both hands and tried to give it a good tug. Unfortunately I have so little strength that I barely made an impact so went back to bed feeling resigned to the fact that I was probably going to have to spend the rest of the night with no duvet covering me and gradually getting colder. Eventually driven on by feeling cold I made another attempt at trying to pull sections of the duvet onto the bed and after much thrashing about I was successful. Of course by this time I was completely worn out and feeling very hot. In fact the last thing I wanted at that moment was a duvet covering me!

I’ve had my staples removed. The district nurse dropped in late this afternoon and pulled them out with the staple extractor I was given on Saturday. To be honest it didn’t really hurt at all. I do have a headache this afternoon but it is nothing to do with the staples. The frustrating thing is I am here upstairs alone and I cannot even get to my paracetamol which are downstairs. I’ll have to wait until Kim arrives this evening. Memo to myself: leave some paracetamol on my desk just in case!

Mark

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Heading into summer (June) – part 3

Calendar entries highlighted in yellow

16th June 2009 – Sad and unexpected news

 

Yesterday, all my troubles seemed so far away

Now it looks as though they’re here to stay

Oh, I believe in yesterday

 

Suddenly, I’m not half the man I used to be

There’s a shadow hanging over me

Oh, yesterday came suddenly

 

Why she had to go I don’t know, she wouldn’t say

I said something wrong, now I long for yesterday

 

The Beatles, 1965

Alison, one of my three main carers has had to pull out of my care package completely, for personal reasons. The news has left me reeling as I had come to depend on her so much and we had grown to become good friends. In my naivety I had assumed that she would be with me for the remainder of my journey. This was a comforting thought as having consistency and stability in a care package, particularly in a terminal illness case such as this where I am totally dependent on professional care is paramount. Perhaps the lesson to be learnt here is not to become too dependent or too close to the people caring for me. But that is far easier said than done as dying from MND can be a very lonely experience, one that can make you quite vulnerable, and one that I am coming to understand more as the months go by as I become steadily more dependent on others. At the moment I’m feeling very down.

My care package is in disarray once again as even with Alison gaps were appearing that were difficult to fill thanks to the doubling of care hours that took place recently. I’m already maxed out on what Francesca can offer and probably close with Ann too. I’m due to have a meeting soon with my social care manager and of course this will now be high on the agenda. The depressing part is that whatever happens it will take time to get to know someone and feel comfortable with them. In fact it will probably need to be two people. Alison, with her background in palliative care and experience of MND was really starting to come into her own as my needs began to increase. Aside from that of course Alison and I just seemed to hit it off from the word go and experience has shown me that doesn’t happen often (although again I was extremely lucky with Francesca). It will be very difficult to find a suitable replacement. My dream team of 3 is now 2.

Before I sign off today let me say thank you so much Alison for all the extra-special care you gave me, the thoughtful little treats, being my companion on appointments, and for bringing some happiness into my life at a time when I needed it most. I have some wonderful memories to look back on and cherish and I hope you do too. Thank you for all the laughs we shared, I shall really miss those…and I will miss you even more. I hope everything works out for you. Please try and keep in touch.

17th June 2009 – Final measure up / Visit to my GP

Didn’t get much sleep last night and woke up feeling distinctly under the weather and worried about what will happen to my care package now. Not looking forward to all these strangers coming into my house and having to start building relationships from scratch again. It started this evening with a girl turning up who’d been here once before but it felt so strange without my regulars. Come back, Alison, I miss you already!

I had a guy called Jeff (from Freelift) call this morning to do the final measure up for the stairlift. Our discussion brought up several issues that had not been picked up or fully understood during the quotation process. One of the problems is actually being able to operate the stairlift. By default it comes equipped with a little joystick mounted on the arm rest but my arms are paralysed so I wouldn’t be able to position them properly. The next solution is a two-button remote control but when I was given one today I found that I had insufficient strength left in my fingers to press the buttons. In use it would be even worse as you need to press and hold down the button all the time the lift is moving. The only other option is an older wall mounted rocker switch similar to my door openers which apparently could be adapted as a hand held unit.

Another problem that’s come to light is ease of getting on/off at the bottom of the stairs because the stairlift chair cannot swivel in both directions if it’s powered. We practised with a dining chair and it looks like the clearance between my feet and the opposite wall might be a bit tight so they are now talking about extending the stairlift rail by fitting an overrun. I’m also a bit annoyed that they will probably have to remove all the staircase handrail. Because of my concerns on usage I have been in contact with my OT to see if I can visit a demo one so that I can confirm that I can actually use it. That’s now been arranged for next Tuesday.

I had my monthly appointment with my GP this afternoon and have given her a copy of my completed living will. That’s one less legal document to worry about. I plan to review it about every 3 months. A big thanks goes to Francesca for being my hands and writing it out, and to my brother, Jason, for running off the copies.

Reviewed the test results from my latest liver function blood test which have come back normal – phew! My doctor has also confirmed that she’s signed off on the wheelchair assessment so I should be contacted before too long by the wheelchair service.

18th June 2009 – Talking to my computer / Pre-assessment

It’s come to that; I’m talking to inanimate objects. That’s what happens I guess when you’re left on your own all day! On a more serious note I’ve made the first tentative steps into the world of speech recognition software. My hands are getting so bad lately that it is becoming difficult (and even impossible at times) to use my computer. As I depend totally on it for so many things I just cannot afford to lose the ability to control one. Fortunately Windows Vista comes complete with built in speech recognition software so before buying an off the shelf product I thought I’d take a look at it to see how useful it is. After running through a wizard driven microphone set up there is a lengthy tutorial which gives instruction on basic commands required for dictation and controlling Windows. Whilst you’re running through this the software is attempting to get to know your voice. So how accurate is it after this initial training session? Judge for yourself…

I said “Using speech recognition software is very frustrating. It is certainly not as easy as they make out.”

Vista read this as “Using speech recognition software is very frustrating. He is certainly not as easy as they reached out.”

Exactly! In fairness it may need further training to get to know my voice. At the moment though it’s more frustrating than useful, although it seems to fare better when surfing the Web rather than dictating text. One thing I have noticed is how dry all that speaking makes your throat.

Received an email from AbilityNet with a form to fill in as a precursor to having a computer usage assessment. This was something I have Rachel, my Social Care Manager to thank for instigating. And the way my hands are behaving lately it couldn’t come at a better time.

19th June 2009 – Care package review

I had a lengthy meeting with my social care manager this afternoon to discuss how we are going to move forward now that Alison has pulled out. One suggestion that’s raised its head again is the move to a live-in carer. I don’t feel that I’m ready to make that leap just yet but do understand that as the disease progresses I will need more help and supervision. I’m hoping that I can at least get through the remainder of this year although if my respiratory muscles weaken much further it may hasten things along. For now the care agency are in the process of talking to several carers who have some spare capacity and they’ll be shadowing my regulars to determine suitability.

20-21st June 2009 – Feeling low

I’ve not had a good weekend. My hands have been giving me a lot of problems and I’m struggling to pick up anything. My hands tremble and shake and I drop things and anything small is out of the question. It’s been a nightmare this weekend chasing food around my plate, and trying to pick up pieces of toast or bread roll almost defeated me. It’s taken me hours spread over the weekend to flick through half the pages of my latest magazine subscription and the whole thing has left me feeling weak. Looking at my hands is becoming depressing as they slowly change shape and waste away.

Francesca’s away on business this weekend so there’s been a steady stream of new faces to do my care which has made me feel even more unsettled after the recent upheaval with my care package.

Memo to myself: Must try and get out next weekend when Francesca’s back. With Alison gone and Francesca so busy lately I’ve not had a chance to use any of my social hours. I’ve been mostly stuck indoors for a couple of weeks now and that can’t be helping. I need a pick-me-up!

Today (21st) is the longest day – already! Where is this year going?

23rd June 2009 – A visit to Liftech / property viewing

It’s been a really hot day with temperatures around 28 deg C. Just as well then that I had a couple of opportunities to get out of my rather stuffy house thanks to Marion, my Occupational Therapist, who called round this morning to drive me down to the Liftech Factory at Totton. The purpose of our visit was to see for myself whether I would in fact be able to get on/off and operate a stairlift without the use of my arms. Since having the final measure up there have been a few concerns and before we were committed to manufacture I wanted reassurance that it would be useable and to do that we were going to have a play around with the demo unit. The default control is an arm mounted joystick which as suspected proved impossible for me to move with my weakened hands let alone maintain a constant pressure. The hand held remote proved equally difficult. The solution we eventually settled on was adapting a wireless feather touch rocker switch (which would normally be mounted on the wall) and using it as a foot switch. Result! And from measurements we took before setting off today we were able to simulate the space available at the bottom of the stairs and confirmed I was able to get on and off.

Late this afternoon Marion called round again and took me to view a bungalow that had appeared on the market which had been fully adapted for wheelchair disability. It was on the old Berg estate built in the late fifties. The semi-detached bungalow had been extended at the back where extensive decking around the well maintained and mature garden had been laid down. There was a standalone garage with remote operated door and an intercom system. Inside the bungalow there was a large kitchen with lowered work surfaces, a central heating system with a remote control unit, remote operated window and blinds, widened doorways and a bathroom with level access shower. I said I’d keep an open mind on it but deep down I would feel happier in my own house with all its memories rather then move into a property that just feels like I’ve come to the end of the line. I am happy where I live; I just need some conversions to make it more disabled-friendly. Still, visiting the bungalow was an interesting experience as it enabled me to see what could be done.

I had a very pleasant male carer from Zimbabwe tonight, the latest person brought in at short notice to cover my evening call. I must admit that I was surprised when the care agency phoned to say a male carer was coming as I had stipulated all along that I wanted female. But as it turned out we got along very well from the moment he walked through the door and were able to strike up a good conversation.

24th June 2009 – A bad night / New wheels / Another goodbye

I had two extremely painful episodes of cramp in the early hours of this morning. The first was around 1:30am when both calf muscles exploded into pain. It was so bad I couldn’t even stand up and just lay there writhing in agony. Unusual too in that it should affect both legs whereas in the past it has been one or the other. A few hours later I was gritting my teeth in agony again because of severe cramp in all my toes. So not a good night!

My new wheels have arrived! Yup, I’m now the proud owner of my own little chariot, or to be more accurate a Sunrise Medical Lomax Uni 9 Transit Wheelchair. Phew what a mouthful! Its arrival was a bit of a surprise as I had assumed that I would be having an assessment with the Wheelchair Service first. Obviously not. Anyway I’m pleased to say it’s a brand new model and not a reconditioned one and can be folded down into quite a compact form for ease of transport. Not as lightweight as the one that Alison brought round for me to try a little while ago but then again that was a very expensive model. Between you and me I think Francesca has been looking forward to its arrival more then I have. She has all these plans to ‘pimp my wheelchair’. I must ask her to take a few photos before she adorns it with go faster stripes, neon running lights, chrome exhausts and a snow plough on the front – oh and tinsel at Christmas she tells me :-).

It seems to be all change lately. Had a monthly meeting with Ruth, my MNDA visitor, and was told that she is relocating to America and that this would be the last time I would see her. Oh dear, that’s two people gone this month.

25th June 2009 – Catching up with the District Nurse

Anita, the cheerful young District Nurse who pops in on a regular basis dropped by this morning accompanied by Emma, a student nurse in her final year. Just a bit of a chat really filling her in on all the goings on lately. I’m not really getting much out of these meetings at the moment. Perhaps they’ll be of more benefit further down the line.

27th June 2009 – Shopping on wheels / Out and about on my chariot!

I’ve had a couple of chances to put my new wheels to the test today. I’d made a promise to Francesca that she could be the first to push me around. So this morning we bundled the fully collapsible transit wheelchair into the boot of her car and took a drive into town. I then spent the next couple of hours being pushed around from one ladies fashion shop to another as Francesca went looking for a dress to wear for an upcoming wedding. Highlight (if you can call it that) was turning a corner between aisles and almost being suffocated by a forest of Bras hanging from a low display rack – obviously below Francesca’s line of sight. What a way to go, every man’s dream :-).

For someone used to walking at a brisk pace through the town it took some getting used to being pushed around and viewing the surroundings from much lower to the ground, although I was really grateful to have the chair as my legs would not have held me up for very long. It’s funny how you notice things you’ve never paid much attention to before either. Surfaces for instance; out by the car park it was slopping tarmac so a bit of an effort for Francesca to push me up. In the shopping mall it was all polished floors so much easier and quieter. And it was goodbye to escalators and hello to lifts although within the confines of the modern shopping mall they were in abundance.

After lunch Tholani, my Zimbabwe male carer was kind enough (actually, eager is a more accurate word) to offer to push me around the housing estate which unfortunately for him is on hilly ground. All I could hear behind me was slightly laboured breathing as he pushed me up the slopes, hehe. Of course I had it easy just sitting there although I could feel my skin burning under the hot afternoon sky with temperatures near 30 deg C. Just as well I wore a hat.

So there we are my first real experiences of life as a wheelchair user. Looks like I’ll be finishing my life the same way I started – on wheels. No intermediate stages for me; because I’ve already lost so much upper body strength I knew I’d never go from walking to walking stick to crutches to wheelchair. Instead it was always going to be straight to a wheelchair – and for the same reason not a self-propelled one.

Mark

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