Friday, July 30th 2010


I’m into my last few days here at St Michael’s Hospice and preparations for my departure have been taking place throughout this week. The stairlift has been permanently removed from my house so that it will be easier for an ambulance crew to get me back upstairs (and out of the house if my health declines sharply). It will also be easier to take bulky equipment upstairs. Yes, after only about four months of use the stairlift has been decommissioned! It was something that was always seen as a temporary measure until the extension was built but even I was surprised that I got so little use out of it. This is a shining example of how disease progression can soon make things obsolete.

Yesterday my shower/commode chair and soft form mattress were removed from my room here at the hospice and taken home. I really wish I was allowed to have one of the alternating pressure mattresses I have been sleeping on for the past few weeks. It really is a notch or two above what I sleep on at home and I have been able to get some very deep sleep with no pressure sore problems because of it, but unfortunately they are very expensive and not available in the community.

The folks from equipment services also paid a visit to my house yesterday and removed all the redundant equipment that I will no longer have a need for, such as the bath lift, toilet seat riser, glide about chair and perching stool. So now we have some space we can start filling it up with new equipment!

This morning Chris (my OT with the PCT) dropped by to trial a new sling that will be used at home to hoist me when doing all my transfers. The difference compared to the ones I have been using here at the hospice is that it uses loops of material to attach to the hoist instead of plastic clips. It was also another chance to check out the techniques that will be used when dressing me on the bed. Everyone has sort of come to the conclusion that the best way to go about it is to roll me slowly from one side to the other. Only problem is that it can be very uncomfortable for me with the weight of my body pressing down on the shoulder joints and shoulder blades. We’ve been experimenting with taking Paracetamol ahead of the actual moving and handling but so far I’ve not found it to be that effective.

Richard (from Remap) called in this morning to show us what he had been working on so far as a means for me to be able to take a drink without assistance whilst sitting in my wheelchair. He came armed with a small toolbox, a portable vice and a junior hacksaw, proceeded to cut some tube to length, made some marks on others, took some final measurements, and went away again saying that he would contact me next week when it was finished!

I had to say goodbye to my new wheelchair early this afternoon as that to was being taken to my home ahead of me. So in its place I’m back to the oversized blue reclining armchair which starts to get uncomfortable on my shoulders and bottom after a few hours. Also being big and cumbersome and heavy to push means that I am now limited to staying inside my bedroom or conservatory, which is probably no bad thing at the moment as it has been raining here this evening.

The laptop computer that AbilityNet kindly loaned me whilst mine was being repaired was collected by the Courier and sent back this afternoon so fingers crossed that my one behaves itself. Once I get home I really need to start looking at getting a second computer because I literally cannot afford to be without one.

But the hardest thing this week has been saying goodbye to all my newfound friends as they gradually go off shift or go on holiday.

So now it’s just a waiting game. I’m sure the next couple of days will just fly by and before you know it I’ll be back home.


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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!


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The month of October – part 1

Calendar entries highlighted in yellow

1st October – Remap to the rescue

Richard, from Remap called round this afternoon to take a look at the ergo rest arm support I have been struggling with since being based upstairs. He has taken it away with him so that he can fashion another extended arm support gutter similar to the one I have downstairs fixed to my dining table. In the meantime he has removed the one from downstairs and adapted the clamp so that it can be attached to my desk upstairs. This has made a terrific difference to my comfort as for the last few days my right shoulder has been drooping because the arm support I was using only supported my hand.

2nd October – Care package review / The return of the stairlift track / Further equipment loans

I had a meeting at midday with Rachel, my social care manager, to discuss what alterations would be needed to my care package in light of my accident, diminishing strength and stability. I feel that I am definitely at the stage now where I need to have someone around me for more hours of the day, not just to provide care, but supervision in case I run into difficulties. In recent weeks certain tasks have become progressively more difficult and it was only a matter of time anyway before I would have had to relinquish them. So I have asked for an additional 30 minutes on my morning calls and the same for my evening calls. I have also asked to have a 30 minute night call added as I can no longer undress myself or brush my teeth. Even getting into bed by myself is becoming a problem because of the difficulty in positioning the duvet over me. Rachel will now go back to her contact at the NHS Continuing Care review board to seek approval for the additional funding.

Liftech have returned this afternoon as promised and have installed the new extended piece of stairlift track. The additional 350mm of track has made a significant difference and has enabled the chair to come onto the landing so that when the chair rotates it feels a lot safer getting on and off. No longer is my body still in the stairwell with my feet hanging off the edge of the landing which gave me no confidence at all and which I felt was an accident waiting to happen. I did have some concerns about how far into the doorway to my study would the new track protrude, whether it will be a trip hazard, and how much of the doorway would be blocked if the chair was parked on the landing. I’m pleased to say that for now at least I can safely navigate past the parked chair into my study. In fact with the chair parked at the top the landing it obscures the track and removes the danger of tripping over it plus as an additional benefit it acts as a partial barrier to the stairwell. So when Kim came round to do my dinner this evening we gave it a try out and for the first time in a week I was able to revisit my own dining room and have dinner downstairs. Getting on and off the chair isn’t too bad although I would feel a whole lot more confident with someone around especially at the top where I have to walk backwards to sit on the chair. I could still seriously hurt myself if I were to misjudge it or if my balance went. At the moment I couldn’t operate it myself even if I wanted to as they have yet to come up with a ‘hands-free’ control mechanism. That is what they are hoping to sort out next week. But at least in the meantime I have access to the downstairs again as well as being able to go out and socialise.

Hampshire county council’s equipment service called round this afternoon with a couple of pieces of new equipment. The first is an AquaJoy bath lift which I’m really looking forward to trying out. I’ve been making do with a slatted bath board for the past year or so which was okay if I just wanted to sit down whilst having a shower, but what I really miss is being immersed in hot water with lots of bubbles so this is going to seem luxurious after a year going without. Time to dust off those rubber ducks and battleships! smile_regular

The other piece of equipment is a glideabout chair/commode which will be kept in the bedroom. As a glide about it may allow me to move from room to room upstairs whilst remaining seated and thus minimise the risk of falls. I believe it may also be rolled over the toilet to give greater height. At the moment though I’ll just be using it as a simple chair albeit higher than the one I had previously.

3rd October – Boys Toys

I’ve been having problems with my electric kettle lately. It’s one of those Breville Lightning’s where the whole water chamber lights up blue. I’ve had it a few years but lately it has caused one of the house circuits to trip out twice resulting in my carers having to go out to the garage to reset the fuse box. Today it died altogether in a spectacular flash which startled poor Francesca. Time for a new one! So after browsing the Argos website (we have one of their stores up the road) I settled on an even more gimmicky kettle, the Breville Spectra. This one doesn’t just glow blue it glows all the colours of the rainbow as the water gradually heats up, a true boy’s toy! Francesca and I stood there in a darkened kitchen mesmerised watching it cycle through all the colours. Sure it’s expensive and considering I’ve just had a Breville that’s blown up probably not the wisest choice but I couldn’t resist having something a little snazzy in the kitchen to liven things up. And besides I don’t buy many things these days. Mind you if this one dies I’m going back to the real basic kettles; the ones with whistles.

4th October – Bliss!

I had a real treat this morning. Francesca called early so she could set up my new AquaJoy bath lift and leave me to luxuriate in a hot bath whilst she got on with some housework. Oh how lovely it felt to be immersed in hot water once again rather than being sprayed. I can’t even remember the last time I had a bath. The bath lift is simple to use and gently lowers you into the bath almost silently. It doesn’t quite get you down to the bath floor level but gets pretty close. On this particular model the back support doesn’t recline as I was told by my OT that those models take up more room in the bath. Even so it is a massive improvement over what I had and improves my quality of life.

5th October – Approved! / Stairlift woes / Nuisance calls

I had some good news this morning. Rachel, my social care manager phoned to say that funding approval had been granted for an additional 1 1/2 hours each day which is exactly what we had requested. So my care package will grow from 28 hours per week to 38 1/2 hours per week (5 1/2 hours per day), a clear indicator of my escalating needs. But the good thing about it is not just having the extra care but also having someone around for more hours of the day in case I run into difficulties, a comforting reassurance when living alone.

My stairlift has been giving me problems… already! It has become very temperamental in deciding whether it wishes to move or not when a carer uses the joystick control on the armrest. We first noticed the problem last Friday when we couldn’t get it to take me back upstairs straightaway and it only worked after much messing around with the joystick and me wriggling around on the seat. The problem persisted all weekend but today it has begun stopping one step before ground level and failing to move when in the parked position at the top of the landing. Fortunately I have the folks from Liftech calling on Wednesday so I’ll get them to look at it then.

I seem to be plagued with nuisance phone calls the past few days which makes me wonder if I have a big neon sign stuck on my roof saying ‘please phone me’. These things are an irritation at the best of times but as each call requires me to stand up so that I can swing my arms and grapple the phone they are costing me valuable energy. Standing up is getting harder and harder so you can imagine how happy I am when after all the effort of picking up the receiver all I hear is a recorded message.

6th October – Dropping like flies / Measuring up / Remap does it again!

My care package is starting to creak and groan as my main carers succumb to colds, chest and throat infections, and the flu. Kim pulled out after doing my personal care yesterday morning and is still off. Francesca is really quite poorly and has had to pull out of all her commitments this week and is laid up in bed. Only Ann remains unaffected at the moment and she is due to go on holiday later this week. So at the moment the care agency is struggling to fill my calls, which is not made any easier by the fact that other carers are also off sick. Even the home care manager is off sick!

Roger, the craft technician working for the OT services, called round this afternoon to do so measuring up outside my front door. The intention is to do away with the timber platform that was fabricated about a year ago which enabled me at that time to gain access to the lock on the front door by raising me up about 8 inches or so. Now however that platform is becoming dangerous as stepping on or off it plays havoc with my balance. In its place I am going to have a ramp that will be wheelchair friendly. I’m told that it will be ready in about 10 days.

Richard (my friendly contact with Remap) has saved the day again. For quite some time now I’ve had to stand up and position myself directly over the cordless phone so that I can operate it. I would then have to use one hand to steady the phone with my other pressing the buttons. My phone has a curved underside which sits neatly in the palm of your hand, except of course I can no longer hold it, which means if I place the phone on the table and then just use one hand to press down on the buttons the whole phone will rock side to side and slide about. The other day it occurred to me that all I really needed was some kind of cradle that will support the telephone and be of sufficient mass not to slide about the table. I sent an e-mail to Richard a few days ago explaining my thoughts and asked him what he could do to help. This afternoon he dropped in with a neat looking cradle fashioned out of a piece of oak wood. The base was covered in nonslip rubber so the whole thing would stay in one place, and the wood had been scooped out of the middle and profiled in the approximate dimensions of my phone. Again there was some rubbery material on the inside to act as padding and to prevent slippage. It worked straightaway! Now when I’m sitting at the computer with my arm in the ergo rest support all I need to do is pivot in the opposite direction and I can reach out and activate the phone. No more do I have to stand up to pick up the receiver, sit down to listen, stand up to end the call, and sit down again to carry on working. What an energy saver! And like all the best ideas it is simple but efficient.


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