Tuesday, December 28th 2010

Normality returns

After the long drawn out run up to Christmas that seems to start before some people have even taken their summer holiday, the actual day always seems something of an anti-climax. It certainly flew by just like any other day now that care consumes such a large percentage of my waking hours. And with little of interest to punctuate it the day was soon forgotten. Christmas itself held little attraction for me this year and I am much more looking forward to being able to get out of the house on a regular basis and get much-needed fresh air. I am truly tired of living in an artificial environment. That for me will be like Christmas every day although I suppose you can only truly understand that if you were in a similar situation.

As for my furry little friend, well he did very well this year from Father Meerkat. Auntie Debbie gave him a full set of winter knitwear that she had specially made, which included a bobble hat, scarf, mittens on strings, little booties and even a tail warmer! He’s all set now for his first adventure out in the snow just as soon as we get some more! As for me, I got him a radio controlled locust! I was going to get him a clockwork beetle but I thought that he might be getting a little bit old for that kind of thing so a locust it was. You should have seen his eyes light up when he unwrapped it. For the rest of the afternoon I sat there watching him skitter around the carpet chasing it underneath the furniture. What it is to be young! And as a special treat I bought him a box of chocolate coated scorpions, yum yum!

On a more serious note I would like to thank my brother Chris for the superb top of the range hi-fi quality speakers that I can plug into my laptop. At long last I can listen to music more or less as it should be heard. Thanks also to Jason and Chery for the lovely warm looking fleece jacket that I will be able to wear when I start going out in my wheelchair during the colder months.

Before signing off I would like to say a big thank you to Suja and Debbie for providing the lion’s share of my care over the Christmas break and to Ann for helping out and cooking me a delicious Christmas meal. I really must have a word with her about portion sizes. With my pitiful appetite even I was surprised by how much I managed to eat… and that was even before I started tackling the sherry trifle!

I’ll leave you with a few pictures taken over the Christmas holiday.

With my furry little friend on Christmas day

With my little friend proudly showing off his winter collection that auntie Debbie knitted for him. Check out the tail warmer 🙂

With a very contented meerkat who has just eaten a whole box of chocolate coated scorpions 🙂

Father Meerkat has come to join the fun!

With my brother Jason and Chery on Boxing Day

With my brother Jason and Chery on Boxing Day, oh and a certain little someone!


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Friday, December 24th 2010


We’re just hours away from the man in red breaking into our houses and leaving a trail of muddy footprints, spilt milk, and half eaten cookies, and already I’ve received an early Christmas present. The builders who have been working feverishly all week have at last completed my house extension. A team of four guys have been working flat out this morning to add the finishing touches and at lunchtime today we said our farewells. So does that mean I shall be spending Christmas day downstairs? Alas, no. Until a few days ago we were still under the impression that certain key equipment wasn’t going to arrive until after Christmas. Consequently we’ve yet to make arrangements with the ambulance service and the joint equipment service so that I and my profiling bed can be moved downstairs. Whether that happens next week or at the start of the New Year remains to be seen. But to be honest I’m okay about it. I’ve been trapped upstairs all year so a few more days won’t hurt.

As the week progressed the changes to the extension were becoming visible on a daily basis. On Monday morning we had the X-Y axis ceiling track hoist fitted, whilst later in the day the carpet fitters turned up to fit a special close weave carpet suitable for high traffic and wheelchair use. It immediately transformed the room once the concrete base floor had been covered up. Vertical blinds for the bedroom and a special moisture proof roller blind in the bathroom came next. The back end of the week saw the special Clos-o-Mat toilet installed, shower panels and bathroom cabinet fitted and a curtain pole put up in the bedroom above the blinds (I shall be adding curtains for a more homely look). So now it is just waiting for me…

One thing that did cause a little bit of concern halfway through this week was waking up shortly before 6 AM with a terrible cough that persisted almost non-stop for the next couple of hours. By the time Ann had arrived it had stopped but I had been left feeling very weak. All the time I had been coughing I could feel these secretions on my chest and with my weakened respiratory system I just didn’t have the energy in my body to dislodge them. It felt very similar (although not as severe) to my coughing episode back in July at the hospice. And sure enough after the doctor had been called out to examine me, I was diagnosed with a mild chest infection and prescribed some antibiotics (Amoxicillin) to take in liquid form for the next week. Within a short space of time it seemed to be having a beneficial effect although I felt so weak on Wednesday that I spent the entire day in bed. Lying in bed all those hours was a terribly frustrating time for me as I was completely helpless and unable to do anything, other than listen to music on the bedside radio, to occupy my mind. It gave me a new appreciation of what it must feel like to be completely bedridden all the time as some people unfortunately are. It made me realise once again that there is always someone worse off. At least I was able to get back to my computer the following day. Once I’m downstairs I’ll be having a TV fitted in the bedroom so at least then I’ll have something to occupy my mind if I am ever unwell enough to get up. Another good thing about getting downstairs will be the ease of exiting the house in a medical emergency. If my chest infection had turned really nasty it would have been difficult getting me downstairs.

Okay that’s about it. Time to at least try and enjoy the Christmas festivities. My furry little friend seems far more excited than I am. He’s been jumping up and down all morning wondering what Father Meerkat will bring him this year. At the moment he’s got his eyes glued to the Internet trying to track him on Google Earth! Oh well I guess we were all that age once! As for me, I need to sit back and relax now and let the two hot mince pies and double cream that Ann made for me go down.

Enjoy your Christmas holiday. See you all after the break.


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Merry Christmas

One of my eco-friendly limited-edition e-cards. Only virtual trees were harmed in its manufacture! 🙂

To all my family, friends, fellow PALS (people with ALS), and those kind enough to drop by, I wish you all a very merry Christmas. And if you don’t happen to celebrate Christmas then I wish you a happy holiday!

Outside my study window the colour is predominantly white. Snow carpets the ground whilst overhead looms a white featureless sky from which snow is steadily falling. It is very cold out and the roads feeding into the housing estates are slippery and treacherous. But I am far removed from the elements here in my cosy study and so have lost all touch with what it’s like having to get about out there.

I would like to say a big thank you to my aunt Joan who was kind enough this year to take up secretarial duties and sort out all my Christmas cards. So to all of you out there who have received cards from me and cannot work out the writing (on the envelope) – now you know!

I would also like to thank those of you who have sent Christmas cards this year. They are very much appreciated and it is nice to know I’ve not been forgotten even by those I have not seen for a while. Thank you all. I’ve got a nice little collection here on my desk. And apologies to anyone who I have forgotten to send a card to this year or whose address I don’t have. Sandra, if you’re reading this, I did send you a card but it has gone to your old house and I’ve just discovered you’ve moved.

And so before I sign off will you join me in a traditional Christmas song that was written by Irving Berlin Way back in 1942 and updated for the 21st century by me a couple of years ago! Okay, to the tune of White Christmas


I’m dreaming of some new neurones

Just like the ones I used to know

May your days be merry and bright.

And may all your neurones work right!


Now go and enjoy yourselves… Eat, drink and be merry. Enjoy the festive season and cherish the moment because life is precious at the best of times!


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Sunday, December 19th 2010

Taking shape

As you can see from below I’ve finally got some new photos to share with you of the progress being made on the new extension. And as you will also note from the dates they range from three to one week old, so they are not exactly a true representation of where we are at this moment. But hey, it’s better than nothing! It had been my intention to post these earlier in the week but the workmen have been in just about every day, and all the noise from their drilling, banging and sawing which is transmitted through the house plays havoc with my speech recognition software and effectively shuts it down. On top of that I’ve been feeling really poorly this week, worse in fact than last week and I’ve simply not felt up to doing much. I hope I feel a bit better for Christmas.

But the consolation for all the noise emanating from below is the considerable progress which has been made over the past week. On Monday afternoon for instance we had the electricians in and by the end of that day we had working lights and power to all the sockets. A couple of days later saw the radiators plumbed in and working, adding much-needed warmth not only to the extension but also to the living room. By the end of the week the bathroom sliding door had been fitted and painted, the electric shower installed, a wash basin fitted, the level access patio completed and an exterior proximity sensing nightlight installed. And as you can see from the photos it certainly looks a lot more ‘homely’ now that the walls have been painted. I believe the builders are hoping to complete their work next week which will then leave the specialist installation of a ceiling track hoist to another company. It is unlikely to be completed before Christmas and I have resigned myself to spending this Christmas trapped upstairs. But we are close now, very close.

Once again I’d like to say a big thank you to Debbie for taking all the photos (and keeping me as well as yourselves up-to-date). These were the first pictures I’ve run through my new Photoshop Elements 9. What a relief it is to finally get a version that I can control using my speech recognition software. Just as well really as my feet tire very quickly these days.

Newly painted bathroom and fitted tiles. 28th November 2010

New French doors and level access patio under construction. 28th November 2010

Newly painted walls and fitted door in bedroom. 11th December 2010

Newly painted walls in bedroom. 11th December 2010

Newly painted walls and fitted door in bedroom. 11th December 2010

View from bedroom looking towards bathroom (with unfitted sliding door). 11th December 2010

Looking into bedroom and front of house. 11th December 2010


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Sunday, December 12th 2010

End of the week roundup

Not too much to write about at the moment which is probably just as well as I’ve not been feeling too good lately. My appetite is very poor at the moment and today for instance I’ve hardly eaten anything so far, which means I’ll probably be relying on high calorie protein drinks to boost my nutrition this evening. My legs have been giving me some trouble this week as well and this is making it increasingly difficult to operate my computer which only adds to my frustration. At times I just sit there staring at the screen unable to move the mouse cursor. It’s such a simple thing and yet it is slowly slipping away from me. To compensate I’ve been trying to do less ‘interface intensive’ tasks such as reading or listening to music. The blog has been given a bit of a rest although I did try and spend a little bit of time yesterday trying to create a Christmas e-card but gave up when it became too difficult to move the objects around the screen. I’ll try again next week!

I’ve had a couple of visits this week. The first was from Chris, my OT with the PCT. She’d dropped by to collect some of the equipment that I can no longer use. The past three years are littered with a trail of equipment that is issued one month and then discarded a few months or a year later. Such is the nature of a disease with a progressive disability: things don’t wear out, MND just moves the goalposts! This week I said goodbye to a glideabout chair that served me well for some time last year whilst I was still able to sit at the dining table and feed myself, a custom-made mobile arm support that was supposed to make eating easier but proved less than satisfactory and ultimately got used very little, a kettle tipper that for a brief time enabled me to continue making my own hot drinks (provided that the carers left it filled with water), and a pair of Ergo Rest Mobile Arm Supports (with customised extra long arm supports) that get the award for being the most useful piece of kit I was issued. It was only thanks to these that I was able to keep using my computer for so long before voice recognition software became a necessity. Now however my only hope is that they prove helpful to someone else in a similar situation. Far better that than have them all gathering dust here.

My second visit this week was from Sheila, a complimentary therapist at St Michaels Hospice. I’m in the process of having a series of about six complimentary therapy sessions here in my home, and today I was being given some head and shoulder massage whilst listening to some very soothing music, preceded by having mandarin and sandalwood oil worked into my hands and arms. All very relaxing and thoroughly enjoyable. I just sat there purring. It’s nice to be pampered!

In the latter half of the week there has been a carpenter downstairs busy in the extension fitting skirting boards in the new bedroom and (finally) a door into the extension. At least now the living room should keep warm. But the constant noise from all the drilling, sawing, and banging that drifted upstairs made it virtually impossible to operate my computer by voice. The background noise scrambled all my attempts at communicating with my computer, and at times it would seem to go haywire, opening windows at random. I gave up trying to get anything done and waited until they had finished for the day. Anyway at least we’re making progress so I mustn’t complain too much. Debbie has kindly taken a whole new batch of photos this weekend but I have yet to find the energy to run them through Photoshop to do all the tweaks. I’ll try and make them the subject of the next post.


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Friday, December 3rd 2010

Winter arrives early

It may not officially start until December 21st but it sure feels like winter this week, with temperatures plummeting south of zero bringing with it cold winds, freezing fog, snow and ice. For the past few days the ground outside has been carpeted in ankle deep snow much to the amusement of children or frustration of adults, depending which way you look. I’ve swapped my autumn duvet for a heavier winter one, started eating hot breakfast cereals, and am now wearing fleece sweaters in an effort to stay warm. The central heating system is struggling to keep the house warm especially as we still have a large opening in the living room leading into the extension. I’ve had to roll out my oil filled portable radiators as a supplementary source of heat.

For me this kind of weather always brings with it the concern about how my carers are going to cope with reaching me. I can remember back at the beginning of this year when we had terrible weather how difficult it was for people to get to the house. Fortunately it’s not as bad as that yet and the main roads are being kept clear. However it is the housing estate roads that present a problem and this of course is where everyone lives! I have to say though that so far reliability has not been an issue, and although on a few occasions I’ve needed to go to bed slightly earlier so that people can get home safely, that’s been the only (minor) ‘inconvenience’ the weather has caused me.

No sign of the builders this week although we have managed to get the bathroom floor laid by one of their contractors. As soon as I get some pictures I’ll upload them. Apparently the bathroom is looking rather nice so I’ve been told. Overall though we seem to be slipping behind as originally I was being told that it should all be finished by the end of November. The way things are going it will be a close thing if I get in before Christmas.

New computermabob!

Most of my spare time this week has been tied up installing and configuring software. Pretty much all the software is new as I took the opportunity to update to the latest versions so that I could take advantage of new features and also be assured that everything would work under Windows 7. Now in the days before I became disabled I would have been eagerly looking forward to learning the ins and outs of all these software packages, but nowadays though I prefer a bit of familiarity so that I can at least be reasonably productive. It takes a while to discover/create ways to voice control software so it is very frustrating when you discover that features you knew how to control in one version have now been modified/moved/removed in the latest version. But there have been some pleasant surprises too. Upgrading to Photoshop Elements 9 for instance has at last meant being able to use it with my Dragon voice recognition software. Previously with version 5 I had to unload Dragon from memory as Elements would not even load. I was also pleased to discover that even my six year old Microsoft Money 2004 seems to work perfectly with Windows 7.

One area I did have concern about was my e-book collection purchased through the Amazon Kindle store. These are heavily protected by DRM (digital rights management) software (to prevent piracy) and are keyed to a user’s account and hardware. As my hardware was completely different would I still be able to read my books? Well the easiest way around this was simply to register my new computer as a new device in my Kindle account. As soon as I had done this and downloaded the latest version of the Kindle for PC software all my purchased books appeared in the archive section. It was a simple matter to click on each book and re-download it to my PC.

The computer, a Sony VAIO ‘E’ series is quite a nice little machine considering its pretty much at the bottom of their product line. As a general workhorse (and ultimately a backup machine) it should serve me well. It may not be as high spec as my old machine but three years of hardware development means that even this little machine is faster in some respects to my old one. Having 4 gigabytes of memory (instead of 2) certainly makes the machine seem a little more responsive, and memory hogs like my speech recognition software no longer swallow up all the resources. The larger hard drive will also allow me to store more media files effectively making it a very large jukebox. It will certainly be nice having instant access to a large part of my media collection. Now all I need is a way of getting my DVD collection onto an external drive so that I can access them all through a few mouse clicks. Anyone know if that’s possible?

My new Sony VAIO E series laptop

So as we close out the week I can finally look forward to actually getting some proper work done. All my regular programs, utilities and services have been set up and configured. I’m looking forward to seeing how stable and reliable Windows 7 actually is. It’s had a lot of good reviews so expectations are high. But to be honest, despite generally negative views, I never actually had any real issues with Windows Vista and found it to be very reliable over the course of three years. It was the hardware that eventually failed on my old machine.

One thing that did occur to me the other day as I sat looking at it was this: it will be the first computer I’ve bought that I will never touch!


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