Towards year end (December)

Calendar entries highlighted in yellow

5th of December – Christmas shopping

Here we are a little under three weeks from Christmas and I’ve only just got around to doing anything about it. To be honest I just can’t get into the Christmas mood this year and all I’m looking forward to is lighter evenings and warmer weather. Anyway, today with Francesca’s kind help, I managed to get all the cards, gift wrap, vouchers and most of the presents in one fell swoop. Predictably Festival Place, our shopping mall, was heaving with people and there were queues everywhere. It’s so much more frustrating trying to navigate around people when you are in a wheelchair! At least being all undercover we were kept warm from the bitter cold outside.

6th of December – New chair

At last I have a new chair for my study! I did what I said I wasn’t going to do; I ordered one online from Staples as I was limited for choice in the shops around here. Fortunately all the chairs featured on the website included dimensions so I was able to ensure that I picked one that I could raise the seat up nice and high as well as making sure that the back was able to support my neck. So thanks to Francesca and my brother Jason for putting it together. It really is making a big difference to my comfort level as I am now able to lie back and have my head supported so I can relax a little again. Also the seat on this chair can be raised up a bit higher than my old one which makes it easier for me to stand up.

8th of December – Another one bites the dust!

I’m beginning to think my care package is cursed! Recently we’ve been introducing another new girl, Lorraine, to my package. The idea was that she would be sharing the evening meal and put to bed calls with Ali, another fairly recent addition. Everything seemed to be going in the right direction until last week when she started missing calls. Now I’ve been told that she has left the agency because she has decided that care work is not for her. So I’m back to square one with gaps in my care plan which the agency are struggling to fill. Tonight was a typical example of that, with the carer turning up an hour late and me not being notified of who was coming.

9th of December – Padded comfort / A pleasant surprise

As nice as my bath lift is the rigid plastic seat is becoming uncomfortable on my wasting back. I mentioned it recently to Marion, my OT, who placed an order with AquaJoy for a padded cover which arrived yesterday and was fitted this morning. The padding isn’t as thick as I imagined it would be but at least does offer some additional comfort and is a lot warmer on my back than cold plastic. The design fully encloses both the back support and seat. Marion tells me that AquaJoy are currently working on designing a pressure relief cushion which would probably be of more use to people like me.

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I had one of those nice out of the blue visits this afternoon from Jim and Val, my friends from Basingstoke Neighbour Care. They had some free time between calls and popped round to say hello and to catch up on recent events. Because my GP is now making house calls and my hospital visits have dried up I have not had as much need to be ferried around. Nevertheless over the past year we have become friends and it was nice just to be able to socialise and enjoy good company. Being trapped in the house so much nowadays tends to isolate you from people other than your carers so it is always nice to receive guests.

13th of December – A nice treat / Organic page turner!

I got a surprise phone call from Ann halfway through this morning asking if she could call round and redo all the flower containers at the front of the house! So a little while later she turned up with potted shrubs and trays of bedding plants and proceeded to replace the remnants of the summer flowers with some winter colour. So now I have a lovely display of dwarf conifers and violas in each of the terracotta coloured tubs. Ann says it’s a Christmas treat! What a nice thing to do, I’m so lucky to have such a nice carer. Thank you, Ann.

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Ali has now started doing some social hours for me. The weather has not been particularly nice lately so I had no great inclination to go out in the cold and damp, but I do have a wonderful library of large format coffee table style books I’ve not been able to look at in a long time. So this afternoon I’ve been enjoying the delights of world-class wildlife photography in last year’s Wildlife Photographer of the Year portfolio, a Christmas present from last year which I had still not managed to read until now. Any form of physically handling a book is now beyond me of course which is where the extra pair of hands comes in, well ‘handy’. So Ali sat by my side turning pages as and when required whilst she kept herself entertained doing word search puzzles.

16th of December – A meeting with Lara and Rachel / MND website / Something for the bed

I had one of my regular meetings with my palliative care doctor and social care manager today. We reviewed my declining state of health and I expressed my concerns about my weakening leg and torso muscles and how it was making it difficult for me to get up from the bed or a chair. We also discussed the disappointment of having the planning application refused and again I expressed my concerns about the disease progressing to a point where I am trapped upstairs in an unadapted house long before I ever get anything built. Finally we discussed the latest ups and downs with my care package although we’ll have a more formal care package review in January.

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I’ve made it onto the MND Association’s website! They are always on the lookout for people to write a little about their experiences of MND so I thought it was high time I added my own contribution, and of course a link to my blog! For those interested you can find it here.

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I received a pillow lift from Equipment Services this afternoon which I’m hoping will extend the amount of time that I can independently get out of bed. Unfortunately I cannot use it at the moment as my OT has still to work out a method for me to control it in a ‘hands-free’ fashion. Frustratingly my OT finishes work today and will not be back until after Christmas so I’ve still got quite a wait ahead of me. I only hope my strength holds out.

17th of December – An uncomfortable chat with the district nurse

Anita, the district nurse dropped by this morning for my regular monthly visit. And what did we discuss? Toileting issues of all things! Well not the actual ‘going’ but more my concerns about being able to get to a loo at certain times of the day. I had real difficulty early this morning trying to get up from the bed and fell back repeatedly each time feeling more weak until desperation gave me the extra burst of energy I needed and I was able to catapult myself into an upright sitting position on the edge of the bed. Sooner or later my strength will fall to a level where it will simply not be possible to get off the bed without assistance. And of course living here alone and not being able to call out for help in the middle of the night means I am forced to look at alternatives. So the dreaded C words (conveen and catheter) are starting to appear on the horizon. Enough said I think. If you want to find out any more about it you can Google it yourself! Today was just a discussion about what my options would be if it came to it. I’ve still got my hopes pinned on the pillow lift but even if that should work and elevate me into an upright position there will come a time, and probably not that far off, when my legs will simply not have the strength to support my body any longer and I’ll have to revisit this subject. You know I was just thinking that MND really does bring life down to its most basics: how to get food into the body and how to expel the wastes? And of course the same could be said of breathing: how to get oxygen in and CO2 out?

20th of December – 1 today

This time last year Francesca turned up at my door for the very first time. It was a Saturday and my care package as it was at the time was in disarray after my main carer had decided to leave. Various people were being sent to me with varying degrees of ability and personality. I was beginning to despair but as soon as I met Francesca I knew instinctively that things would start to get better. We got along so well and I admired her ability to work on her own initiative and to show real keenness. Of course what really won me over was her lovely bright and cheerful personality, something which I feel is really important as you come to depend more and more on someone. Having all the necessary skills to care for someone is of course important but so too is the ability to feel comfortable and at ease with somebody. My instincts have paid off and here we are a year later and Francesca is still with me. In fact she is now the longest serving carer I’ve had. In the time we’ve known each other Francesca continues to demonstrate her loyalty and concern for me for which I am forever grateful. As luck would have it today coincided with the weekend that she was supporting me. We had hoped to celebrate and mark the occasion but sadly Francesca has been feeling really ill all weekend. In fact truthfully she should have been home resting but the care agency are short staffed so Francesca’s conscience would not allow her to leave me unattended. Thank you so much for all the care you have given me over the past year, Francesca, and for staying with me.

21st of December – Let it snow, let it snow, let it snow (let’s not!)

We’ve had heavy snow all day and it has brought utter chaos to the roads. Cars are being left abandoned by the roadside, roundabouts are gridlocked and journeys that would take minutes are taking hours. Being so heavily dependent on my carers has brought a new level of frustration today as I have a house full of food and drink and yet I cannot reach any of it. It might just as well be miles away. Instead I’ve had to wait hours for anyone to turn up, growing ever hungrier and thirstier and wondering if anybody would be able to make it through the treacherous conditions. All my main carers were unavailable to do my dinner this evening and the person who was supposed to come out gave up after two hours of trying to get out of the hospital car park. In the end another of my semi-frequent carers managed to battle through the snow but not before having to abandon her car some distance from the house after a 2 1/2 hour drive and then having to walk the rest of the way. By the time she turned up at my door it was getting on for 11 PM and I was feeling very weak but at the same time extremely grateful that somebody cared enough to ensure that I was fed, watered and helped into bed.

All I can say about today’s weather is never underestimate the power of water!

22nd of December – Battling through the snow / We are on the news!

Woke up to a winter wonderland and was half expecting a phone call from the agency to forewarn me that I may have to wait some time before somebody arrived. But I was really surprised when Ann turned up on time as usual. I was even more surprised to hear that she had walked the entire distance from her own home to mine in the snow which had taken over an hour. Trying to get a car anywhere near where I live is not practical at the moment. In fact all I heard this morning whilst lying in bed was the frantic spinning of wheels as cars went nowhere fast. The rest of my care calls today were uneventful although we did have to make adjustments to the times to make life easy for everyone.

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My hometown has made it onto the national news. Basingstoke has been the worst hit town in the country for snowfall. In fact we’ve had the BBC and Sky News filming a stone’s throw from the back of the house where a line of abandoned cars litters the side of the road. If they had tilted their cameras up a little more they would have caught the back of my house on film.

25th of December – Christmas day

Ann turned up this morning wearing a tinsel tiara to help get me into the festive spirit! Actually I was already in Christmas mode as last night just before Ali left I asked her to leave a saucer of milk and a plate of biscuits and carrots by the back door so that Santa and the reindeer would have something to eat. He’d obviously stopped by during the night as all the milk had gone and there was nothing but crumbs and a half eaten piece of carrot left with a bite radius that looked suspiciously like Ali’s smile_regular. In return some presents had been left on the dining table, but not the one I really wanted above all others – some new motor neurones! smile_sad

After a delicious cooked breakfast that left me feeling very full, Ann did the honours and opened my presents. Amongst the gifts that brought a smile to my face were a Wallace and Gromit perfect cuppa mug for my tea (thank you Francesca), a traditional piggy bank that I can store all my loose change in, and a family of rubber ducks (thank you Ann) – bath time is never going to be the same again!

Ann, bless her, called in briefly during late afternoon with a beautifully prepared Christmas dinner and a delicious looking trifle that looked big enough to feed a family of four! By the time I got around to eating the dinner later in the evening I was feeling very tired and struggling to do justice to all the effort that went into preparing it. I must say though it really did taste delicious. Thank you so much, Ann, for spoiling me!

26th of December – A day with family

I had a very enjoyable day spent in the company of Jason, my youngest brother, and his lovely wife, Chery. My brother cooked a delicious turkey dinner with all the trimmings that was soon devoured and left all of us feeling rather full. It was a rather novel experience sitting between them both and being fed alternately by one or the other, each trying to outdo the other by seeing who could pack the most tasty morsels on to the fork!

Dinner was followed by the opening of the presents. Highlight for me and a complete surprise was the Sony digital photo frame that Jason and Chery had bought me. What a lovely thoughtful present. I shall look forward to loading it up with pictures of the family. I’m sure it will soon be a talking point with all the people who call to see me. Thank you so much. Thanks to you both for the lovely book of landscape photographs you also gave me. I shall really enjoy admiring the photos once I can commandeer Ali to turn the pages for me. And thank you Chris for the wildlife Blu-ray disc set. I missed Life when it was broadcast so can now enjoy it at my leisure.

Oh, and Ann, thanks ever so much for the delicious fruit trifle you made for me. I was too full up to eat it last night so decided to save it for when I had company today. It was absolutely delicious. Jason paid you a real compliment and said it tasted as good as a Marks & Spencer’s one!

The present master!

Enjoying a perfect cuppa!

With my lovely sister-in-law, Chery

With my brother, Jason. Cook for the day!

28th of December – Not a good start to the week

No one turned up to do my care this morning. I lay in bed patiently waiting and as 9 AM came and went I began to wonder what had happened. At 9:20 AM I got a phone call from the care agency to say that my carer for this morning had just received bad news and had pulled out of all her calls today. They were in the process of trying to contact all my other carers and would get back to me as soon as possible. After another hour or so I got another phone call to say that they were all either unavailable or busy but one of them, Debbie, would pop in briefly after she had finished all her calls for the morning. So it wasn’t until around 11:30 AM that I received any care and even then it had to be abbreviated to the basics of getting dressed and having some breakfast. I had barely finished dressing when my brother arrived, and had only just started eating my breakfast when my niece and nephew called in to spend a few hours with me. My evening meal was just as problematic with all my main carers unavailable at the same time. Just as well then my brother was home and able to call round and cook me a dinner. Thanks Jason.

29th of December – Pillow lift

Marion, my OT, called round this morning with Hayley, an OT student. They had come to fix up the pillow lift and to see how useful it might be. I was pinning a lot of my hopes on this working as I was finding it increasingly difficult to get out of bed on my own. Unfortunately it’s been a complete failure. Firstly with the device lying on top of my deep mattress it is simply too high for me to comfortably get on. Also as it is not the same width as the bed you end up first sitting on the mattress and then having to try and raise yourself up again onto the pillow lift. From a comfort point of view it is also unsatisfactory and indeed where it splits so that the head portion can elevate it aggravates my lower spine which I am increasingly starting to suffer with pain. Trying to control the elevation was very hit and miss as the corded control unit had flush fitting switches which I had to somehow work out their positions by touch alone using my toes hidden under the duvet. But the real problem was trying to get off the bed with the headboard elevated. I just couldn’t seem to do it and became trapped. So back to the drawing board! I’m really starting to worry now about what’s going to happen in the coming weeks.

31st of December – End of the decade

And so here we are on the last day of the first decade of the 21st century. Talk about time passing faster the older you get. It doesn’t feel like 10 years have passed since we were all celebrating the turn of the millennium. Ordinarily I would be staying up to see the New Year in but alas I shall be on my own this time round and have to fall in line with the schedules of my carers. So it will be an early night for me and I’ll have to save all my phone calls and well wishes until the morning. But for those of you who are planning to stay up and celebrate the New Year in let me wish you all a very enjoyable evening. To all my family, friends and carers let me offer my heartfelt gratitude for everything that you have done for me this year.

Normal service will resume in the New Year smile_regular.

Tick-tock , tick-tock , tick-tock . . .


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Merry Christmas

One of my highly sought-after limited edition personalised Christmas e-cards! 🙂

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 health and happiness in the coming year.

As I write this the ground outside the house is covered in a blanket of crisp snow and the sun is shining down from a clear blue sky, thus adding to the seasonal atmosphere. Children are throwing snowballs, the adults are busy clearing driveways, whilst I can only look on with envy. It’s such a nice day out there at the moment; I really wish I could go out for a walk with my camera and capture some shots of the nearby farm fields. Well I suppose we could always take the wheels of my wheelchair and replace them with skids then hook it up to a team of large dogs and hey presto I’ve got my own sleigh! smile_regular

Soon daylight will fade and some of the houses around here will start to resemble carnival attractions or Blackpool illuminations. With my central heating running continuously and keeping me at a cosy 20° C I’m losing track of what the weather is really like out there although apparently it’s COLD. Actually having snow in December down here in the South is rather unusual these days (compared to my childhood). Normally Christmas is mild and dry… and nothing like Christmas should be, so it’s nice to see the white stuff just as long as you don’t have to go out driving in it. Personally I blame our upside down seasons on the greenfly affect! smile_regular

I would like to say a big thank you to Ann and Francesca who have done so much to help me prepare for Christmas. They have both literally been my hands these past couple of weeks. So to all my friends who have received a card from me and can’t work out the handwriting – you have Ann to thank for it. And to those of you who have received gifts this year a special thank you goes to Francesca who spent a lot of time yesterday wrapping them up despite feeling really ill herself.

I would also like to thank those of you who have sent me some really nice 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. And apologies to anyone who I have forgotten to send a card to this year or whose address I don’t have.

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 last year! 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 none of us know how long we have!


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