Monday, April 26th 2010

An evening out with the girls

It was only a matter of time before I found a weakness in the security systems that were holding me prisoner in my own house. For weeks now I’ve been carefully monitoring the patrol patterns of my carers guards, looking for a loophole that would gain me my freedom. I’d made friends with a few of the guards who had taken sympathy on me and together we had meticulously planned my jailbreak! Tonight would be the night. Jan had cut the power to the perimeter fence, spiked the patrol dog’s Boneo, and had the wheelchair on standby, whilst Debbie and Ann quietly smuggled me down the stairs past the guard towers just as the searchlights were pointing the other way…

On a more serious note I am very pleased to say that after more than a quarter of a year I have finally managed to get out of the house! Debbie had kindly arranged for me to have a meal out at the Portsmouth Arms in the company of some of my carers. The idea was that it would not only serve to get me some fresh air and out of the house, but also to see how difficult it would be for a couple of competent carers to physically handle me on and off the stairlift and into the wheelchair.

I’d been both excited and a little apprehensive. Excited for obvious reasons but apprehensive because of how bad my legs were becoming and whether they would be of any use by the end of the evening. Even stepping back onto the stairlift at the top of the stairs for the first time in months was a little worrying for me because of the unpredictability of my balance and strength left in my legs. It was not something I would attempt to try anymore on my own; in fact even walking past the stairwell each day causes me concern. But with the reassurance of my carers standing close by and making sure I came to no harm I felt confident enough to attempt it on my own. Who would have thought there would come a day in my life when I would be frightened to go up and down the stairs!

Things are a bit more difficult at the bottom of the stairs because the stairlift seat doesn’t rotate like it does at the top of the landing and it’s a bit more cramped. But with the help of Jan and Debbie they were able to help me stand up, shuffle sideways, and lower me into the waiting wheelchair which had been brought as close as possible. Phew, down and safe! Once downstairs I took a quick glimpse round at the surroundings that had become strangely unfamiliar and then we were on our way down the ramp and into the fresh air.

It’s amazing you know what we take for granted. For any able-bodied person leaving the house and walking down the street is no big deal, but just imagine for a moment what it must feel like if you’ve been staring at plasterboard walls and computer screens since the start of the year. I felt like a sponge; I soaked in the sights and sounds around me. It was a beautiful sunny evening, the sun was bathing the garden in a beautiful golden light backlighting all the spring bulbs and shrubs. Birdsong was in the air and the sky was a beautiful shade of blue. It felt good to be out smelling fresh air and feeling the warmth of the sun on my face. It felt good to be alive.

The Portsmouth Arms is about a 30 minute walk from my house, or at least it was at the pace we were travelling, which was fine by me as I had more time to soak up the atmosphere around me. Jan became my trusty chauffeur whilst Ann and Debbie were the tail-end Charlies! The Portsmouth Arms, although not an old pub, has been built in a traditional style with a lovely thatched roof (and the next time we go I must remember to get someone to take some photos of it!). Inside it’s all stone floors and wooden beams. We found ourselves a nice little alcove and enjoyed a meal and drink around a candlelit table. Very nice.

Back home and all the transfer and handling went much smoother than I had anticipated. The girls worked well as a team and had the glide about chair parked up close to the top of the landing so as to minimise the amount of time I would need to stand up. In fact that was the one thing that really surprised me this evening. Despite sitting in the wheelchair for over three hours I was still able to bear my own weight and walk to the bathroom, something I had not been able to do back at the start of the year when I had been in the wheelchair for a similar amount of time.

I’d like to say a big thank you to Debbie for organising the evening, to Jan for being my wheelchair attendant, and to all the girls for taking such good care of me and for giving me the opportunity to enjoy a night out in good company. I really enjoyed all the laughs! Hopefully we’ll be able to organise another one before too long.

I’ll leave you with a few pictures that were taken shortly after our successful jailbreak smile_regular.

With Debbie and Ann

With Debbie and Ann

With Jan

With Jan


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The year is racing by! It’s springtime, we are approaching the end of April already, and another 100 day milestone arrives. I’ve now reached the 900th day since my diagnosis! smile_party In keeping with other recent D+ posts I’ll mark the occasion by taking a summarised look at my declining health since mid-January.

The last 100 days, probably more than any other, have had a significant and profound impact on my day-to-day quality of life. I have had to come to terms with living in a very restrictive environment which I have not been able to leave since the beginning of the year. This alone is hard on someone who was used to going walking and cycling during the evenings and weekends and driving the rest of the time. This year it really does feel like my world has contracted down to a tiny sphere consisting of just three rooms. With time a limited and precious commodity that I hate to see go to waste, I feel so very frustrated at times that I cannot get out, particularly now that springtime is here. There has been talk for some time now about having some ceiling tracking fitted at the top and bottom of the stairs that would enable me to be safely transferred between stairlift and wheelchair. Unfortunately things have stalled due to lack of funding and a reluctance now that my long-term situation looks more certain. My only hope for getting downstairs and out of the house in the foreseeable future is with the help of two carers instead of the usual one.

It can be a frightening thing experiencing the last of your strength ebb away and as the weeks passed my chances of being able to get off the bed at night unassisted to visit the bathroom diminished as my torso strength faded. The (reluctant) decision to use conveens was at first a way of eliminating the chance of having a serious fall in the night, but eventually became a necessity (unless I wished to have a stranger living in the house), as I am no longer able to leave the bed without help. It’s funny, in a strange way, how disease forces us to accept and adapt to change. There was a time much earlier on when this was first suggested, that I was completely against the idea, but now I just seem to have accepted (or at least resigned myself) that it is all part and parcel of living alone with MND.

This year has also seen me having to give up the last of my personal care. I tried to hang on to the last of my dignity for as long as I could but in the end the disease (of course) won out. It took a while to relax and feel comfortable with somebody else taking care of life’s most intimate and personal daily chores. At first I felt more than a little embarrassed that my body would betray me to this level denying me even this basic dignity but now it has just become part of my daily routine. I try not to think about it and instead concentrate on the day ahead.

My legs of course continue to weaken but amazingly I am still able to bear my own weight even if it is only for a few minutes. The real problem is standing up and for that I need the assistance of my carers otherwise I end up staying where I’m put. But once I am standing up and have my balance I can just about shuffle between the three rooms although there have been a couple of occasions now when it feels like my legs are just about to give way and I have to lean against the wall whilst my carer quickly gets the glide about chair so that I can sit in it and be pushed the rest of the way. I also have to be careful I don’t bump against anything whilst walking otherwise the impact will ricochet through my body upsetting my balance and threatening to topple me over, and it wouldn’t take much to do that these days. Nevertheless I continue to be surprised that I am still able to stand up at all. Back in January I thought I was on my last legs – literally!

My hands are for decoration only these days! The mere thought of wrapping my fingers around a pen, let alone writing my name is laughable. Making a fist of my hand is something I can no longer do myself. I have physiotherapy on my hands daily but it has become quite painful trying to fold the fingers at the joints. Strangely, I seem to fair better when I’m having a bath and my hands are submerged in water, I then seem to be able to flex the fingers more than I can in air. Perhaps my hands are turning into flippers! smile_regular

My neck muscles have weakened further. I lose track of the amount of times I have to say ‘head up’ each day as a reminder to my carers to lift my head up every time I go to sit on the bed, toilet, bath lift, perching stool etc. These days I can barely lift my head an inch or two above the pillow when I’m in bed and only then when it is slightly elevated. I wear my neck support for quite a few hours each day now.

The one surprise I’ve had to come to terms with this year has been a slowdown in my swallowing reflex. I’d been seeing a reduction in my appetite for some time and had put it down to reduced efficiency in my breathing system, but was still nonetheless surprised when I started to experience difficulty in eating certain kinds of food. It can be a bit distressing to find that food is building up at the back of your throat and not sliding down naturally but instead threatening to block off your breathing. I had visions that my days of eating normal food were drawing to a close and that I would be forced to eat everything in a semi-liquid form. But I’m pleased to say (he says touching the wood of his desk) that those early symptoms have so far not progressed any further and although it’s true to say that certain types of food do indeed present problems I have yet to find anything that is a complete no-no. My carers, bless them, have been coming up with some imaginative ways of allowing me to continue to eat the things that I enjoy, just in a different form.

My care package is about as stable as it can be at the moment which is an achievement in its own right I suppose, considering all the problems I’ve had in the past. The funny thing is it seems to have improved immeasurably since we significantly increased the hours. Now that I am on block hours it seems to suit everyone; the carers seem to prefer it as they are not being sent here, there and everywhere every hour, whilst I prefer it as I have more consistency in the people who are supporting me. Only the recent departure of Francesca as one of my main and regular carers has marred things.

And hanging over me like a dark cloud these past few months has been the uncertain outcome of my planning application and how long and drawn out an affair it turned out to be. What a relief it was when I was finally given the go-ahead! Now things are starting to move forward and I’m just hoping that I’ll be downstairs and able to make use of the garden this summer.

Fortunately the life critical stuff seems fairly stable at the moment. At least I’m not consciously aware of any further degradation in my breathing and for that I am very grateful. I do have to pause between sentences though when speaking and I cannot shout as loud as I used to. Also I can’t even sing along to the tunes on the radio any more, although some might say that’s no bad thing! smile_regular

So there we are, quite a few changes this time, but overall thanks to all the help and support I get I’ve been able to manage.


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Thursday, April 15th 2010

Itchy and scratchy

If it’s not one thing it’s another lately isn’t it? I seem to be suffering quite badly this week from skin irritation. I’ve no idea why but my skin keeps itching and it drives me up the wall when there is no one around to give me a scratch. The last few nights have been terrible with my lower legs almost continuously itching and all I’ve been able to do is wriggle them slightly against the bed sheet which to be honest probably does more to irritate them. But any relief it gives me is short lived. Other areas of my body such as my back and elbows are even less fortunate as I cannot move these when lying in bed. The funny thing is that there is no red rash visible (unless I scratch it) and the skin looks quite normal. So far we’ve been trying cold damp flannels pressed against the skin which do seem to work for awhile but of course are no use during the night, and E45 cream which hasn’t been very successful so far. I’ve been trying to think if anything has changed such as shampoos, shower gels, bath foam, cleaning agents etc that might cause a reaction with my skin but nothing springs to mind. I tried contacting the MND Connect service today to see if it was something related to MND or something entirely separate. Unfortunately they weren’t much help and just suggested that it might be down to a change of medication (which I haven’t done) and that I should speak to my GP. Searching through the Build UK MND forum reveals a different picture as a number of people have raised the subject of itchy skin although the remedies being suggested are wide and varied. I’ll keep an eye on it over the next few days and if it’s no better I’ll speak to my GP. In the meantime Alli has been out and bought some Eurax cream which is supposed to be good at combating itchy skin. I shall be trying it this evening.


I’ve been having a bit of a tidy up in some of the living room cupboards these past few days as a sort of prelude to rearranging the downstairs and making it more suitable for me to live and work in. Well actually it’s Ann who’s been doing all the work bringing piles of stuff upstairs for me to look at and to decide what to keep and what to put in a charity bag for the local hospice. The whole exercise has been tinged with more than a little sadness as I’ve parted company with part of my book collection, in this case my movie memorabilia collection (I have a fascination with the technical aspect of films and how they are made) which stretches back more than three decades and into my teenage years. Because I’ve had such a lifelong love of books and enjoy reading it feels a little like I’m dismantling part of my life. But then I realise and point out to myself that these particular books have been gathering dust unread for many years and are merely occupying valuable space. I suppose I could of course have somebody put them all up in the loft thus freeing up the space I need, but what would be the point? I then point out to myself that the reality of course is that I simply no longer have the physical ability or most likely the time left to read all these books anyway. I guess I just can’t bear giving things away like this irrespective of whether I would make use of them or not. I think it’s because the material things around us that form our hobbies and interests also partly define us especially if these things have been accumulated over a lifetime. Or maybe I’m just a hoarder; perhaps there are some magpie genes in the family tree! smile_regular

Update on extension

Sue at In Touch contacted me today to say that they would be sending the plans and specification for the extension out to tender today. So hopefully before too long I should be visited by some builders to do their quotes. I’m being told that the return date for the tenders will be 6th May. Finally things are starting to move forward.


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Tuesday, April 13th 2010

Moving to foot control

I had a visit from Marion early this afternoon. She brought Paul along from Possum to come and take a fresh look at ways of helping me to independently controlled things. At the moment I’m still heavily dependent on using my arms and hands to reach out and press buttons to operate such things as my telephone, intercom unit, and the little box of tricks that fires off infrared beams to operate the TV and lights etc. Of course I can only do this if my forearm is supported in the ergo rest and then have to rely on using my body to push the arm forward. But just lately this is becoming increasingly difficult as my upper body strength fades. So today we’ve been looking at bringing the Possum Primo environmental control unit upstairs and linking it up with a foot switch which could be used to cycle through the options on the Primo display. This would then enable me to access all the equipment which we would program into it thus giving me a ‘hands-free’ means of control. For me it is the next logical step as there is very little I can do now with my upper limbs. My legs on the other hand although not very strong in terms of keeping me standing up for long can at least be moved easily enough so pivoting on the ball of my foot to operate various switches presents no problem at the moment. In a similar fashion we plan to attach a large soft action switch to the foot board at the bottom of the profiling bed so that I can if necessary elevate or recline it myself. However, to be able to operate equipment in both the bedroom and the study will require moving the Possum Primo from room to room and then reconnecting the foot switches.


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Play the Game!

It’s all Alison’s fault!  smile_regular About a year ago when she was still taking care of me she introduced me to a game called Farm Town that was just starting to make its presence known on Facebook. Up to this point I’d mainly been using the social website as a means to keep in touch with family and friends. So when Alison sent me an invite to join her in Farm Town I wasn’t sure what to make of it. After all, the whole concept of working a computerised version of a farm hardly sounded gripping. Little did I realise then how addictive it would turn out to be and how it would spawn a whole host of imitators, one of which appears to have totally eclipsed it and gone on to become the biggest game on Facebook.

Farm Town is one of the new generation of social games built around the industry standard Adobe Flash technology and designed to run within a web browser such as Internet Explorer, although to be more specific in this particular case it is designed to run inside Facebook, another web application. Delivering games in this fashion offers some distinct advantages over conventional distribution methods such as CDs, DVDs and downloads. For instance there is no program to install, configure, update or patch. The games themselves generally load very quickly, do not consume gigabytes of hard disk space, and hardware requirements are no more than you would use to browse the web. When looked at in this way it is easy to see their appeal, at least for the casual gamer whose expectations will not be the same as those of the hard-core gaming fraternity.

So what is Farm Town? Well basically it’s a game that simulates the workings of a farm albeit in a dumbed down fashion. There are fields to plough, seeds to sow, crops to harvest, and fruit to gather from trees. By necessity (i.e. a desire to build as large a user base as possible) the basic game mechanics are kept simple. Like so many other games Farm Town is split up into a multitude of levels which you progress through by accumulating experience points. These points can be earned by ploughing fields, sowing seeds and purchasing various decorations such as buildings. Harvesting crops yields coins which enable you to buy more seeds, decorations and land with the objective of reaching the highest level and the biggest farm. And for the artistically inclined there is plenty of opportunity to embellish your farm with animals, trees, buildings, fences, and rivers etc.

Now if all this was done in isolation I suspect that you would soon grow tired of it but social games by their very nature have an ace up their sleeve which of course is the interaction with other people. When the game is built within the very fabric of a social networking site such as Facebook you potentially have a ready-made group of participants in your ‘friends list’ which you can invite to be your neighbours. This then opens up the possibility of hiring your neighbours to work on your farm at harvest time, something that Alison, Francesca and I would often do in the evenings (oh yes, Francesca became just as hooked as the rest of us!). It was often a case of let’s meet up by the scarecrow under a full moon! But Farm Town has another little trick up its sleeve which is to allow you to interact with other players worldwide either in an informal surrounding such as the inn where players can just socialise or in the market where players can hire one another to perform work on their farm. It’s this social aspect that has proved very popular with the Facebook community. Gifting is another idea designed to maintain interest in the game. Players can select from a variety of gifts such as trees and animals etc and give them as gifts to neighbours. This was something that proved very popular in the early stages of the game when Alison, Francesca and I were trying to develop our farms. In the later stages of course its usefulness diminishes as by this time farms are probably overflowing with decorations.

From humble beginnings... crops of potatoes, tomatoes and rice. Anybody familiar with the 70s sitcom 'The Good Life' will recognise the significance of my avatar's name.

The store is where you buy things, in this case seeds. Choose wisely! Crops ready to harvest in the shortest times tend to yield the least coins when sold at the market.

Oh look, Francesca has come to visit me! Reaching a new level increases your options on what can be bought from the store and what you can gift to your neighbours.

It's harvest time and Francesca has come to lend a hand!

The fruits of our labour (pun intended!)

Francesca , don't you have a home to go to? Things are starting to take shape. We have a nice variety of crops, a good selection of trees, some animals and a few decorations.

Reaching certain levels allows the purchase of more land which means you can grow more crops and earn more coins.

This is how things looked shortly before I stopped playing Farm Town.

Home sweet home! A new feature introduced some months after launch was the ability to plant flowers.

So for a few months Farm Town provided a bit of free entertainment that was fun to play for an hour or so each day and provided a nice diversion from other more serious stuff. Alison, Francesca and I got some real laughs out of it as we each tried to outdo each other so I guess in that sense it succeeded. But games that are structured in such a way that all the new and exciting stuff is in the early stages when you are busy building an environment often reach a point where interest begins to tail off once you have acquired everything. But a copycat game would soon appear that would take the best bits of Farm Town, add in lots of new features, and a big dollop of fun and wrap the whole thing up in a set of crisper, more vibrant graphics. That game was FarmVille and it quickly became the number one game application on Facebook.

Apart from the fact that this game looks a generation on from Farm Town in its presentation and slickness, I would say its key reason for success lies in the fact that it is being updated on a weekly basis so there is always something new to see. A popular addition are the themed releases where seeds, decorations, buildings and animals etc are released to coincide with a calendar event (Christmas, St Valentine’s Day, St Patrick’s Day etc) or connected with farms in some way (country fairs, autumn). And in FarmVille players can interact with animals by milking cows, collecting wool from sheep, collecting eggs from chickens etc which was something sadly lacking in Farm Town. There are lots of awards and incentives to make the players feel like they have achieved something, and there is a big emphasis on fun in the style of graphics and humorous animations. For instance in the run up to Halloween last year they launched some Halloween themed farm decorations and amongst these was a gravestone and if you watched it long enough then occasionally the ghost of a cow could be seen floating skywards! Another example is the hot air balloon complete with a black sheep in the wicker basket, a decoration that was issued to commemorate a milestone in the number of players they had. All of this is a far cry from the straitlaced Farm Town and judging by the amount of people now playing the game it’s clear they have a winning formula.

FarmVille is an excellent example of the rising popularity of social websites as gaming platforms. The advantages are many but chief among these is the fact that the basic game is always free. They don’t require you to devote many hours at a single time, and instead you can just dip into them as you feel, play a little and then come back another day. I’m sure that the hard-core gamers out there would laugh at such simplistic games but it is important to remember that not everybody has the time, the inclination, or the physical ability to play the latest PC and game console titles. Games such as FarmVille fulfil the needs of the casual gamer.

Where they tend to make their money is in all the extra enhancements and decorations for which real cash is required. Now the cynic in me might say that before the game became very popular practically everything was free and that now it has over 80 million people playing it most of the new enhancements cost real money. But at the end of the day the basic game is still free and there is no pressure to part with real cash and buy the extras so it is still possible to have an enjoyable game with family and friends. Also it’s important to remember that somewhere along the line somebody has to pay for the running costs i.e. the servers, bandwidth, artists, and programmers so we can’t begrudge them for trying to recover their costs.

Sadly the disease has been steadily chipping away at my enjoyment of this game for some months now. A year ago I could quite comfortably navigate my way around the play area just as long as my arm was supported in an ergo rest. Now it’s a different story as month by month I grow ever more tired of fighting against the encroaching paralysis. The repetitive nature of the finger and arm movements that are required to ‘work the land’ often means performing the same physical task several hundred times in a row (depending on the size of farm and how much land has been allocated to farming). No wonder then that at times my fingers have almost stop working and it becomes impossible to do anything. So to try and overcome this problem I’ve been experimenting with controlling the game using my speech recognition software. Now in theory you could play the game in this manner, however you would need the patience of a saint and you would have to ask yourself if the enjoyment you got out of it justified the huge amount of time invested. Another option I’ve been looking at is controlling the mouse pointer using my foot switches and trackball. This is certainly a lot quicker than issuing verbal commands but once again the repetitive nature of the physical actions required soon start to tire my feet. At the moment I’ve adopted something of a hybrid solution by using a combination of voice commands and foot movements. In the long run I can see myself devoting more and more of the land to decorations such as wooded areas, water features and buildings. In other words anything that doesn’t require constantly reworking in the form of plough, sow and harvest. My days of farming are slowly drawing to a close.

Anyway, you’ll have to excuse me. It’s time to milk the cows and feed the chickens and I need to be up early tomorrow to plough the South field smile_regular.

On-screen help and crops ready for harvest as soon as you begin draw you into the game very quickly.

Same function but different name. Everything is bought in the market.

Neighbours can send gifts to one another which are held in the gift box until required.

Frequent rewards via a series of ribbons provide continued incentive to play the game.

Various pests such as crows, foxes, and gophers as well as weeds and leaves can be cleared from neighbours farms. Removing these pests earns a few extra coins.

There are several features in this shot pioneered by FarmVille: 1) commemorative decorations - the hot air balloon was issued to commemorate a milestone in the number of active users playing the game; 2) farm vehicles which are capable of working large areas of land instead of one plot at a time; 3) animals that transform e.g. an ugly duckling that will become a swan.

Some of the many different ribbons that can be awarded when certain tasks have been accomplished

A few examples of Farmville style humour: alien abduction cows and crop circles!

Flowers can be grown as crops which periodically generate 'perfect bunches' which can either be sold to other players or used to decorate your own farm.

Winter comes to FarmVille. A nice touch is that the land can be switched from green pastures to snow blanket. During the run-up to Christmas players were able to send mystery gifts to their neighbours that were wrapped up and couldn't be opened until the holiday season. As the amount of gifts accumulated the Christmas tree with its pile of presents beneath would grow larger in stages until the maximum amount of presents allowed was reached.


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Thursday, April 8th 2010

Some very good news!

I’m in a really good mood today. I’ve finally received the news that I had been hoping and praying for ever since we started looking into extending the house and submitting planning applications. Last night shortly before 9 PM I received a phone call from Marion, my OT, who’d just come away from attending a planning committee meeting. She was calling to give me the good news that my second application to build a downstairs bedroom and bathroom on the side of the house had been granted! Actually it wasn’t me who took the call, but I could hear Debbie downstairs jumping for joy and running up the stairs with the phone and a big smile on her face. Instinctively I suspected who it could be as I was of course aware of the committee meeting and was secretly hoping that somebody would contact me that evening. Well I can tell you it was smiles all round last night and it felt like a great weight had been lifted. I’ve had this dark cloud of uncertainty hanging over me for months now. As the weeks and months have gone by and my health continued to deteriorate I began to worry ever more about the outcome and what it would mean if I should fail. I’ve spent so much time battling to overturn a decision made last year which I felt was unfair and without any real grounds that I felt I was getting to a point where I would just have to go with what I had even though I knew it would make me deeply unhappy. But I’m pleased to say that everything has turned out the way I had hoped in the end although the decision reached by the committee was by no means unanimous.

So today I’ve been busy writing e-mails thanking the various people such as my palliative care doctor, my OT, and my local councillor, who have all contributed either vocally or by writing letters of support that were read ahead of the committee meeting. Although it was my stubbornness and refusal to accept the original rejection it has been something of a team effort to overturn the original decision. However I’m still being told that personal circumstances play no part in the decision-making process of planning applications, but I would like to think that the weight of opinion by the various healthcare professionals played at least some part even if only subconsciously.

I’m hoping that things will start to move now as I’ve already been trapped upstairs for the first quarter of this year and I desperately want to get out into the fresh air and have a change of scenery. The next step will be to finalise the spec and send it out to tender. We will then have to wait for the various builders to put together their quotes so that the council can deliberate over them and award the contract. Considering the general state of the economy and the construction industry I’m hoping that once a builder has been identified they will be able to start quickly.

I am so happy about this news as I can now look forward to making the most of my available resources and maintaining the highest quality of life under the circumstances. Not only will all the transfers and handling be much easier but I can also continue to appreciate my garden and get fresh air via a level access patio which I’ll be able to make use of for meals and drinks. I’ll also have a light and airy dining/work area rather than an oppressive one, I’ll have the room to entertain guests and have easy access to the outside world so my carers will be able to take me out in a wheelchair very easily, and at the end of the day I’ll be able to sleep in a bedroom without the concern of a sewer inspection cover close by.

Looking out the window of my study and I can see the sun is still shining casting long shadows whilst all the nearby houses are bathed in evening light. The sky has been a beautiful blue all day although now the fluffy white clouds are tinged a shade of grey on their underside as they pass serenely by. Yes it has been a really good day for me. I woke feeling refreshed after a good night’s rest, Ann cooked me a delicious fried breakfast that left me feeling fit to burst, Gavin the Gardner has returned to tend my garden after a long winter break, my friends from Basingstoke Neighbour Care, Jim and Val, dropped by this afternoon to say hello, and Debbie is busy making me a delicious cheese and bacon omelette.

And on that note I think I’ll quit while I’m ahead! smile_regular


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Happy Easter

To all my family and friends, my fellow PALS (people with ALS), and those kind enough to visit my blog, may I wish you all a happy Easter. I hope the Easter Bunny brings you all plenty of chocolate!

I’d like to say a special thank you to my aunt and uncle and to my carers, Ann and Debbie, for the delicious looking Easter eggs. I haven’t started to tuck in yet… but it is only a matter of time smile_regular. At the moment I’ve placed the eggs below the radiators in an effort to help incubate them. Can’t wait to see what hatches! smile_regular


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