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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