Thursday, March 25th 2010

Pain-free!

What a difference a bed and mattress make. Two days ago I was waking up in the early hours with terrible pain in the lower back, but since having the profiling bed delivered with a foam mattress things have taken a turn for the better. The profiling bed I was given is a high spec one so can be configured in a variety of ways which I’ll probably make use of more as time goes by. But for now all we’ve had to do is elevate the top end so that my chest and head are slightly inclined away from the horizontal. With just this one manoeuvre I was able to start feeling the benefit on my spine straight away as the panel began to elevate. This in combination with a mattress that offered a higher degree of comfort than the pressure relieving mattress helped ensure a much better sleep. In fact even when I woke up in the morning there was still no pain and I felt a lot more refreshed than I had been lately. So based on the evidence so far it certainly looks like the problem was a positional one.

Two nights with a waking nurse

It was more coincidence than anything as we’d not expected the profiling bed to be delivered on Tuesday, but for the past two nights I’ve had the company of Marion, a very pleasant Macmillan trained nurse now working with the Hospice at Home team for St Michael’s Hospice. Lara, my palliative care doctor was becoming concerned about my lack of sleep and wanted to ensure that I got some much needed rest as by this time I was really starting to feel fatigued. So she’d made available a waking nurse who would be on hand to help alleviate any pain or reposition me in the night if required. So on Tuesday night Marion turned up at 10 PM and stayed with me until 7 AM the following morning. Had I still been sleeping on my old bed then I suspect there would have been more for her to do. Nevertheless on that first night I did wake up a couple of times, the first shortly before 4 AM when I was feeling unusually hot and, strangely for me, had a bad chest cough. Marion was on hand to prop me up further in bed and give me some water. I woke up again around 6:30 AM but on both occasions was pleased to note that I was not in any pain. Last night was even less eventful and I managed to sleep all the way through from 11 PM to gone 6 AM. So although I barely tapped into her nursing skills it was comforting and reassuring to know that she was on hand if I ran into difficulties. One thing I would add is that on both nights I had taken a Diclofenac tablet shortly before going to bed so there is still the question of how much impact the slow-release medication is having. For this reason I have asked Marion if she can liaise with her superiors and come back one night soon so that I can try an experiment. I want to come off the medication as I don’t want to spend the rest of my life on painkillers if I can help it but would like the reassurance of knowing that I have someone on hand for the first night just in case I do wake up in pain.

Catching up

So what else has been happening over the past couple of days? Quite a lot actually. On Wednesday morning I had a visit from Marion, my OT, and Stuart from Liftech, who’d been brought round to do a quote on some ceiling tracks for the top and bottom of the stairs. These are really something of a stopgap solution as it is still the intention of course to build an extension on the house but that is woefully behind schedule. The short run ceiling tracks will make it easy for my carers to get me downstairs and out of the house, something I’ve not been able to do since the start of the year. Whilst she was here, Marion took down some details from the profiling bed so that she can contact Possum to see how easy it will be to interface their environmental control systems with the bed’s electronics. We’re hoping that it will give me some independent control of the bed’s profiling abilities so if I do become a bit uncomfortable in the night I may be able to raise or lower parts of the bed myself.

In addition to a house visit from my GP late Wednesday morning I’ve also had my first telephone consultation with my neurologist. I was due to see him next Monday at the hospital but getting there at the moment is rather difficult and as there are no tests to conduct it seems pointless having all the hassle of trying to arrange transport just so I can end up sitting in a waiting room for 30 minutes or more (despite being on time) and then spending roughly the same time chatting in a consultation room before leaving. So I contacted his secretary recently and asked if I could switch it to a telephone conversation. So today, completely out of the blue, he phoned me up and we discussed everything that had been happening over the past four months since I had last spoken to him in November. We’ve agreed (because I still want to maintain the link with my neurologist) that in future all I need do is contact his secretary and request a phone consultation and he will get back to me within a day or two.

This morning I had a visit from Mark, the Building Control Manager with the local council. He’d called round to do a feasibility study on whether it would be possible to relocate the drain inspection cover in the back garden. At the moment it would be slap bang in the middle of the proposed extension (assuming we have no choice but to build at the back of the house) and I certainly don’t want to spend my remaining days in a room with a sewer inspection cover close by!

Mark

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Monday, February 8th 2010

Busy day

I had one appointment after another today. First up was Sharon, a urology specialist with a company called Fittleworth who specialise in the home delivery of continence products. Some weeks ago I flagged up as a priority to my visiting district nurse that it was getting increasingly difficult to get up from the bed in the middle of the night if I needed to visit the bathroom. In the early hours of this morning for instance it took several attempts before I was finally able to sit upright on the edge of my bed. With each successive failed attempt essential energy is lost and I start to worry about the embarrassment and consequences should I fail to get up. The way my strength is draining away lately it’s not going to be long before getting off the bed unassisted becomes impossible. So the purpose of today’s meeting was to discuss a continence product that would remove what has become a very traumatic experience (and replace it with one that chips away at my dignity even further). I suppose some people might say just have a live-in carer or have somebody doing waking nights but I am very uncomfortable having strangers in my house all night long whilst I am asleep. Besides, it seems overkill at this time to have someone in the house all night long if I’m only going to call on their help only once or maybe twice. Of course if my breathing drops dangerously low and I choose to have non-invasive ventilation then I would have no choice but to have somebody on hand all through the night. But for now I’m just looking for a solution to a particular problem so today we looked at something called a Conveen Optima urisheath. Basically it’s a two part system: a transparent sheath that slips over the end of a man’s you-know-what, and a collection bag with an attached tube that connects to the nozzle on the end of the sheath. And that’s really all there is to it. Because the system is non-invasive (unlike a catheter) there is no chance of infection. I’ve agreed to give it a go so Sharon has left enough supplies for a one-week night trial. I say ‘night’ because if it was worn during the day (and it can be for up to 24 hours) then a smaller collection bag is required. But for now the main problem to overcome is night time. The things you have to go through with this disease!

Lara, my palliative care doctor dropped in at short notice this afternoon in response to my e-mailing her about my reduced appetite, and the fact that she’d heard about my difficulties swallowing last week. The subject of PEG was discussed and whether I would want to have some suitability tests done. PEG as I’ve mentioned before is time sensitive and dependent on respiratory performance which is one of the reasons why lung function tests are carried out at regular intervals early on in the disease so that it can be determined when the best time for intervention is. I was already at the bottom end of safety for this procedure back in September last year and since then my breathing has deteriorated slightly so it would probably be risky or inadvisable. To be honest it’s a near impossible decision to make. PEG is a solution but it is not necessarily the right one for everyone and it doesn’t come without its own problems. Infections can be a real problem as it is an invasive procedure and just because food is bypassing the throat it is not a guarantee of being able to maintain your weight. People can and do still lose weight even with a PEG. Of course the advantages are that it can make mealtimes less traumatic and remove the fear of choking or indeed of starving to death. It can also be a way of delivering medication. But the flipside is that the longer a PEG keeps the body going, the more time MND has to spread throughout your muscular systems. I think for me the real horror of this disease would be lying on a bed totally paralysed and unable to speak, communicating only by blinking, and being dependent on the various tubes attached to me for air, food and waste. Like I say it’s a very difficult decision and each person who has to make this journey will have to reach their own decision based on their own particular circumstances. There is no correct answer.

Dan, my local councillor, dropped in late this afternoon to give me an update after his meeting with the planning case officer. I’ve now been presented with a couple of options with a far greater chance of success than I had previously been told. The most promising seems to be to resubmit the first application for the side extension as this could then be processed under delegated powers of authority with a committee. Unfortunately time is still an issue but I’m currently drafting a letter to my OT with some suggestions on how we can run a few things in parallel. I also got confirmation today via my own investigations that at the time of the first application the planning department were not made aware that there was a progressive disability with a real health need driving the request. It staggers me that the company supposedly set up to handle adaptations for disabled people would not communicate this information and stress its importance.

Steve from Possum called lunchtime to do a one-year service on my environmental control system. Whilst he was here I took the liberty to ask him if he could add my new digital photo frame to the little black box of tricks I have on my desk by capturing the infrared code of the remote control unit. So thanks once again Jason and Chery for the lovely Christmas present which I can now enjoy more frequently and not have to keep asking someone to switch on for me. The pictures on it look great by the way.

Mark

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Friday, January 22nd 2010

Further preparations

Oxford Midi 170 electric hoist

I had another delivery from Equipment Services this morning. Today they delivered a mobile hoist for the study (see photo below). The purpose of this piece of kit will be to help transfer me into my office chair from my glide about chair if my legs fail altogether. At the moment it’s just sitting in the corner of my study behind me and out of the way, but it’s nice to know that Marion, my OT, has done her usual good job and arranged for equipment to be delivered in a timely fashion ahead of actual need. My carers are relieved that it is an electric hoist and not a manual one as it will make life easier for them. So that’s two down and one to go. Just waiting now to see what happens with regards to the ceiling track in the bathroom which will allow access to the bath lift. I’ve been told by my OT that the equipment stores are not going to fund it so she is looking elsewhere for help. I was just thinking… With all this hoisting equipment my house is going to start resembling a loading bay!

A long chat with my GP

I had the first meeting of the year with my GP today. Quite a lot has been happening in recent weeks so predictably there was a lot to talk about to bring her up to speed and to seek her advice on. We touched on a whole range of subjects from muscular aches and pains, dwindling appetite, skin condition, and intermittent constipation (of all things!) which I suspect is being brought on by reduced mobility. And at the request of my senior carer she is now going to start prescribing E45 cream and Sudocrem to protect the skin.

Approval!

Received a letter from the council today and guess what it contained? Yup, approval has been granted on my planning application! But just to be clear on this, it’s the second application, the one to the rear of the house. I must admit (and this might seem ungrateful) that I read the letter with mixed feelings. Why? Because of all the disadvantages associated with it such as losing most of the back garden, reducing the light in the dining/living room and removing the view I have at the moment out onto my garden, as well as ending up with an inspection cover in the wet room for the drain which lies beneath. But beggars can’t be choosers and the main thing is that I at least now have permission to build a ground floor bedroom and bathroom which will eventually make life a lot easier (although having no garden to enjoy). I’m just slightly annoyed that all the help given by the healthcare professionals to add their weight to the second planning application couldn’t have done so the first time round. Given the time constraints we’re under it seems unlikely that we would now spend further time and money on an appeal with an uncertain outcome when we already have what we need. Anyway the next step will be to contact a number of builders on the approved register and have them tender bids and then it will be a case of waiting on the council to determine who will get the contract based on price and availability to start.

Mark

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Thursday, January 14th 2010

Preparations for reduced mobility

A sure sign that the holiday season is well and truly over is my increasing involvement via e-mails, phone calls and meetings with the healthcare professionals supporting me. Over the past few days for example I’ve been discussing hoisting equipment, looking at increasing hours on my care package, and discussing toileting issues with the district nurse!

I’m getting weaker as the weeks go by so we are trying to put things into place to prepare for the eventuality of not being able to stand up and support my own weight. I’m okay at the moment provided I don’t try to stand up for very long but I know from past experience how quickly things can suddenly change with MND. We need to make sure that we have both the right equipment and level of care in place.

I’ve been in some discussions this week with my OT and Debbie, a senior member of my care team regarding lifting and handling equipment. What’s complicated the issue is that I still don’t have my ground floor extension built with its purpose-built tracking installed in the ceiling. The disease is moving ahead regardless and I now face being more or less trapped upstairs for some months to come. What this is going to mean is that I will need special hoisting equipment in all of the rooms I’m using and that equipment will vary from room to room. So far example in the bedroom I’m being told I need a goalpost hoist which will be used to lift me out of bed and into the glide about chair. This wheeled chair will then be moved into the bathroom. A ceiling track will then be used to transfer me to my bath lift (I was quite forceful in not giving up my right to have a bath as it’s one of the few luxuries I have left). After dressing I would be moved to the study in the glide about chair and then transferred to my high-back office chair using a mobile hoist. Phew, that’s a lot of transfers! And that doesn’t even include transferring me onto the stairlift should I need/want to leave the house. And all this because the nerves controlling my leg muscles are dying. At times I really hate this disease! Anyway I’ve now been informed that the goalpost hoist and mobile hoist have been ordered so they may even arrive next week. As for the ceiling hoist in the bathroom my OT needs to speak to the grant officer to see if the cost can be added to my DFG (Disabled Facilities Grant).

I’ve had to put some words together recently in the form of an e-mail to Rachel my social care manager as a kind of justification for why I am requesting additional hours. It’s a bit unusual because I normally just have a care package review and then after describing my current state of health and level of difficulties my social care manager and I agree on what extra hours are needed and then she approaches a representative on the Continuing Care review board. What has made it even stranger this time is that the whole idea of block hours was hers. In fact at first I wasn’t too keen on it but it was only after chewing on it for a few days and then discussing it with Debbie that I slowly came round to the idea. Anyway as of today Rachel is waiting to hear back on whether funding is available. Hopefully we should know in the next few days.

I had a visit from Anita, my very cheerful district nurse this morning. It was rather timely really as I had found it very difficult to get myself into an upright position on the edge of the bed this morning whilst I was on my own and needing to visit the bathroom. Inevitably then the topic of conversation soon turned to issues around the difficulty of getting up in the night and going to the loo. She is going to arrange for me to speak to a specialist on that kind of thing so that I can be presented with the various options. Enough said! Actually today’s meeting was a bit sad as Anita has told me that she is leaving and going into teaching so this will be her last call. People don’t seem to stay in their job roles very long these days. Just as soon as you start to feel comfortable with somebody they move on.

Mark

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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.

* * *

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.

* * *

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.

* * *

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.

* * *

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.

* * *

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 . . .

Mark

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Late Autumn (November) – part 2

Calendar entries highlighted in yellow

11th of November – Stinging eyes / Back relief

One of the strange things I’ve noticed since having MND is that my eyes sting really badly when they water. I started noticing it sometime last year but at the time it was rather infrequent. Now however it seems to be a recurring problem and there is more than an even chance that my eyes will start to water at least once during the night, either before I go to sleep or like today when I wake up in the morning. Once my eyes start to well up with tears the pain can be quite excruciating, like getting shampoo in your eyes, and I’m forced to hold my eyes tightly closed for about 10 minutes. If it happens when I’m in bed then I’m powerless to do anything about it because I cannot raise my arms up to wipe away the excess water so all I can do is lie there with my eyes tightly shut waiting for the stinging to go away. If it happens when I’m standing up then I have to find a way of quickly sitting down because my balance is unpredictable when I close my eyes. Curious, and wondering if it was a separate issue to MND, or whether other people in my situation had experienced something similar, I searched for and found a post on this very subject on the Build UK website (this is a forum set up by King’s College in London specifically for people who have or are caring for people with MND). I was surprised to see a number of people there who were experiencing the same problem. The most recent explanation suggests that that is due to dry eyes and the body trying to compensate. There was also mention of something being prescribed called artificial tears which apparently is available at any chemist. I’ll mention this to my GP when I see her next week.

* * *

I’ve been having a lot of discomfort in my upper back recently with the shoulder blades feeling like they are digging into my back whenever I lay back in a chair. So I sent an e-mail to my OT asking her if she could supply any kind of pressure relief cushion. She turned up this morning with Lauren, an OT student doing placement work in the first year of her three-year university course. They had brought with them an inflatable cushion seat which apparently could also be used as a back support. They inflated it with what looked like an overgrown balloon pump and placed it between my back and the office chair. It wasn’t a great success though and lacked any kind of stability. In fact it felt like resting up against a vertical waterbed. Being made of some kind of plastic it was also disconcerting to hear it constantly crinkle. We were more successful later in the morning when Marion returned with some kind of foam sponge cushion which offered better stability, comfort and a certain amount of ‘give’ which allowed my shoulder blades to sink in. I shall be trialling it over the coming week to see if it is of benefit.

12th of November – Physiotherapy training

Margaret, the community physiotherapist called round this lunchtime to deliver some training for Ali and Vanessa, two carers who have started to support me on a regular basis. For months now we’ve had to struggle on with just Ann and Francesca qualified to perform the passive movements. But with holidays, sickness and a reduction in hours it has meant that my physiotherapy exercises have suffered and are just not being done as regularly as they should be. Because of this neglect my arms have got stiffer and I have lost some range of movement. Concerned that if left unchecked I would start to find it painful to get dressed I contacted Margaret and set up the meeting myself, liaising with the care agency to make sure that the right people were notified. Well if you want anything done, do it yourself!

15th of November – Struggling a bit

I’ve not had a particularly good week. Apart from the previously mentioned aches and pains in my back, and the problem with my stinging eyes, I’ve also had to contend with weakening neck muscles which is making it difficult at times to support my head without resting on a high backed chair which unfortunately I don’t have in my study but will have to do something about real soon. On top of all this my hands have been playing me up quite badly this week to the point where I am now really struggling to tear off and hold sheets of toilet tissue! My hands tremble too much to get a decent grip on anything. I’ve also been finding it virtually impossible to type a complete sentence using the keyboard of my computer. All that pivoting motion of the arm support is tiring me out. I am now really dependent on the voice recognition software and for this reason have devoted quite a lot of my time this week in trying to master it. I’m certainly getting better, no doubt about that, but it’s still painfully slow compared to normal typing. Still, I shudder to think what I would be doing now if I didn’t have it!

18th of November – Red tape

A couple of days ago I had a home visit from my GP. One of the things we discussed was the problem I’m having with my stinging eyes. I told her that I’d already mentioned it to the district nurse and that she’d mentioned something called artificial tears. We agreed to give them a trial so my doctor wrote out a prescription for Viscotears and made arrangements to have them delivered to my home. They arrived yesterday and in the evening Ali applied the eyedrops just before I went to bed. Today I got a surprise when I switched on my computer to find an e-mail from the care agency to say that they had contacted the district nurse who would then be in touch with me to arrange a suitable time for the eyedrops to be applied. Sure enough this afternoon I got a call from a district nurse but when I explained that I would need 2 to 3 applications a day I was told that they did not have the resources to do this and could only come out during normal working hours. This of course did not surprise me so I contacted the care agency and told them unless they had any serious objections I planned to continue asking my carers to apply the eyedrops. Ann and Ali have 40 years care experience between them so I felt completely safe with them applying the eyedrops. The care agency responded by telling me that their company procedures and insurance prevented them from administering anything which required measuring or pouring. So at the moment I have something which may alleviate the stinging in my eyes but cannot use it because my carers are not allowed. This is another one of those examples of rules and regulations, policies and procedures and legislation that have got a stranglehold on this country. I could get my brother or my next-door neighbour to apply the eyedrops but I cannot get the care agency whose job it is to provide professional care to do it.

19th of November – Green light

I had an e-mail today from the care agency to say that they had consulted with their RGN (Registered General Nurse) adviser who has agreed to sign off on my carers so that they can administer my eyedrops. Thank goodness commonsense prevailed. So for the time being I shall be having one application in the morning after breakfast and one application shortly before going to bed. We’ll see how we get on with this.

21st of November – Shopping for a chair

Francesca took me shopping this morning. It was my first time out of the house in almost a month and I was starting to climb the walls desperate for a change of scenery! I was on a mission – to find a decent chair for my study. So it was off to Staples, our local office supplies superstore, and about the only place in town that I could think of who would sell office chairs. I had a good idea of the sort of thing that I was looking for i.e. something with a high back that would fully support my neck – fast becoming essential, good lumbar support, a high degree of comfort for prolonged usage, full-length armrests that would act as barriers to prevent me falling off the side if my balance and torso strength weaken further, and height adjustable to make it as easy as possible for standing up. Unfortunately Staples in-store selection of chairs was somewhat lacking. There were only a few high backed chairs, most of which failed to support my neck properly, whilst the remainder could not be adjusted high enough. So I left the store empty-handed and frustrated. The Staples website offers a far greater selection but I do feel that with something as important as a chair that I will be sitting in all day that I really do need to try it out first. Back to square one! I’ll need to give this some further thought.

22nd of November – Uncomfortable

I’m starting to feel trapped. The muscle wasting going on throughout my body is making so many everyday tasks difficult that I am constantly feeling tired and uncomfortable. I’m finding it really difficult to find somewhere to relax during the day. For most of the day I sit in my swivel chair in the study doing one thing or another on the computer. But there are times when all want to do is lie back, close my eyes and relax for 30 minutes or so. Unfortunately my options are limited. The office chair as already mentioned doesn’t support my neck so is not really a viable all-day solution. I could lie down on the bed but I’m a bit reluctant to do so because it is getting very difficult for me to get off of it on my own. And if I sit on the sofa and lie back I no longer have the upper body strength to pull myself forward so I become trapped. It’s all a consequence of living alone. If I had somebody here all the time then I wouldn’t worry about lying on the bed or on the sofa and getting trapped because there would be somebody here to help me. Today has been one of those days; I’ve had a bad headache, a pain behind my eyes, backache, neck ache and a general feeling of weakness. All I’ve wanted to do is lie back and relax but I’ve not been able to so I end up becoming frustrated and counting the hours until a carer arrives. Tonight I am really looking forward to my bed and the bliss of oblivion. At least in bed I can close my eyes in a darkened room and not have to fight gravity (even though it does mean staying in practically the same position all night). And so far, fingers crossed, the MND has not chased me into my sleep. Goodnight!

23rd of November – Cold / Appointment with the Neurologist / Bad news

The duvet slid halfway down the bed again in the early hours of the morning leaving me shivering until my carer arrived at 9 am. My legs are getting so weak now that their ‘lifting ability’ is not up to the job of supporting the weight of the duvet and carrying it forward. If I try to do it I get a pain running through my leg. Ali, one of my carers suggested we try anchoring the duvet to the mattress using some elasticated straps which she ordered for me and which we’ve been trialling for the last couple of days. But so far we’ve not had a great deal of success with them although we’ll continue to experiment with different anchoring points.

* * *

I had my four-monthly appointment with the neurologist this morning. And what a morning it was too, with torrential downpours and high winds. Certainly not the sort of weather you’d want to go out in, especially in a wheelchair or with precarious balance. My aunt and uncle had very kindly stepped in at short notice to take me up to the hospital now that Kim has left. Getting in and out of the car continues to be a bit of a problem. The worst part for me is lifting one leg into the car, while supporting my entire weight on the other and trying to maintain my balance as I gradually lower myself into the car – all without using my arms.

The appointment itself yielded nothing new or interesting other than the fact that it was the first time I had gone to see him in my wheelchair. It was mainly a review of events over the past few months. I was asked if I had any discomfort and I told him about how uncomfortable it was becoming whenever I rested my back against a firm surface no thanks to all the wasting going on around my back. We talked a little about breathing and I asked him why I had not had a lung function test ahead of this appointment like I normally do. Apparently it’s because I had one down in Southampton back in September and as the results have been fairly stable lately and I have had no reason to contact the folks at the Respiratory Centre, it was felt that a test at this time was not necessary. I could have one scheduled if I wanted or simply wait until the next appointment or until the situation changes. I decided that this is the best course of action as I believe it is more important how you feel rather than what the numbers say. The neurologist seems to agree with my opinion. He’s scheduled another appointment for March next year but has told me that he realises that it is getting increasingly difficult for me to get to the hospital and that I may feel that they are only worth continuing if I get something out of them. He’s got a point I suppose as I certainly felt that I had come away from this meeting with nothing useful. But for now I shall continue on as long as I am able.

* * *

I’ve received an e-mail at last from In Touch, the people managing my home improvements. Unfortunately it’s not good news. I’m being told that my planning application for a single-storey side extension to the house is going to be refused! Frustratingly they have not told me why so the first thing I’ve done is to write back asking for clarification and whether we can appeal and how long it would take. Failing that we’ll have to submit a fresh planning application for a rear extension. I went to bed this evening feeling very low.

24th of November – A flurry of e-mails

It was a bit like being back at work today as I seemed to spend half my time writing and responding to e-mails between In Touch and my OT in response to yesterday’s bad news. It started with a response from In Touch who said the reason the planning department are refusing my application is because my house is on the corner and the extension would not be in keeping with the rest of the estate. If they allowed it then it would set a precedent for all the corner houses. I replied by pointing out that the large house on the corner opposite was up against a public footpath, and that my proposed extension was only a single-storey that didn’t block anyone’s view or cast a shadow over anyone’s property. Also it would be running in line with the back garden brick wall already in place that was up against a public footpath. I also pointed out that there had not been a single objection raised from all the people living nearby who had been notified. Sue, my contact at In Touch was sympathetic and has offered to speak to the planning official dealing with my case raising the points in my e-mail. If this fails then I have two choices: 1) I can choose to appeal but it will have to wait until the end of next week and then it may take up to 6 months for a decision; 2) submit a fresh application, this time for an extension on the rear of the house. If we take the second route we are hoping to take advantage of a letter from my palliative care doctor in the hope that it might add some weight and sense of urgency to the application. We can only try! Clearly I cannot afford to wait six months for a decision which could still be unfavourable. If I didn’t have a progressive disability and more energy to fight it then I would but unfortunately time is not on my side. At the moment I’m awaiting the outcome of Sue’s discussion with the planning official. Fingers crossed!

26th of November – Start again?

I received an e-mail from Sue this morning who tells me that the issue that the planners have is keeping the open spaces on the estate. They have however said that we can appeal and that the time is down to about eight weeks. I’ve instructed In Touch to do this whilst at the same time submit a fresh planning application for an extension to be built on the rear of the house. This would not be the ideal situation though as it would darken the dining area, destroy the back garden, and will end up having to be built over a drain (assuming we got permission). So it’s now going to be a bit of a race against time. Which will come through first; the appeal or the second planning application? Unfortunately we cannot appeal until next week when it is formally refused. Again I’ve asked In Touch if we can use a letter from my palliative care doctor to help expedite things. Anyway whatever happens I’ll have lost about two months so my hopes of having the extension ready by early spring will have to be revised. Meanwhile my condition worsens…

29th of November – Uncomfortable again / Clear out

I’ve not had a particularly good weekend. I woke up a few hours too early this morning with an aching lower back. No matter how I tried to wriggle in bed I just couldn’t get comfortable or get back to sleep, in fact doing so only made it hurt even more. Because of all the wasting going on up and down my back I’m becoming ever more sensitive to hard or uneven surfaces. I’ve also had to start asking my carers to tear off strips of toilet tissue and leave them hanging on the towel rails as it is getting dangerous for me to bend down and try to do it myself without the fear of toppling over. Also my hands are getting so bad that I am struggling to even hold paper and my strength is so poor that I’m embarrassed to say I struggle even to tear sheets off along the perforation. My neck has also been acting up quite badly these past few days and is becoming increasingly difficult, particularly towards the end of the day, to keep my head in an upright position. At times when my head falls forward I have a devil of a job bringing it back up and level again and trying to throw my head back upsets my balance. Tonight was the last straw; I got stuck on the toilet and couldn’t raise my head up which affected my balance so badly that I was unable to stand up. I had to call for help from Ali. Not my most dignified moment! As much as I hate the idea I’m going to have to take a fresh look at neck supports – and soon!

* * *

We have one of those regular collections for charity this coming Tuesday morning; you know the kind, where they leave a plastic bag hanging out of your letterbox. This time it’s the turn of the British Heart Foundation, a worthy cause indeed and one that is close to my own heart (no pun intended) as I have lost family to heart disease. So I’ve taken the opportunity, with Ali’s help, to sort through one of my cabinets full of books I’ve read but clung onto. I’m a bit of a terror when it comes to books. I read them with great care so that even when I have finished with them they still look pristine. And because they look so good I am loathe to dispose of them so I end up amassing shelves full of paperbacks that I know I will never read again but in a strange way still give me comfort knowing that they are there. But now it really is time to start clearing the decks of things that I have no further use of. Although I know deep down that it makes perfect sense to do so the exercise was tinged with sadness as it felt like I was dismantling part of my life. I have had a lifelong love of books so saying goodbye to novels that gave me a great deal of enjoyment at the time just didn’t feel right. Sadly I couldn’t even hold my books let alone turn the pages!

30th of November – Neck support

The first thing I did this morning once I was up was to make a phone call to Chris, my OT with the NHS, to explain the situation with my weakening neck muscles. Fortunately I was able to arrange a home visit at short notice. So this afternoon Chris showed up with a selection of neck supports for me to try. One was my old friend from months earlier that made me resemble a Michelin man! Apart from the fear of endorsing tyres and not getting paid for it I decided to give it another go. It’s basically a series of three fabric tubes filled with some kind of beads. It’s quite bulky and because it completely surrounds the neck felt very warm even after a few minutes which would be no bad thing outside on a winters day, but could be too hot indoors. More importantly though was the fact that I felt it didn’t offer enough support. The weight of my head could end up compressing the beads instead of holding it in position. The next option we looked at, and the one I’m currently trialling as I write this blog entry, is what is called a headmaster’s collar. It’s a fabric covered tubular affair that rests on the collarbone and supports the lower jaw. It offers far more support of the head in an up-and-down motion but is ineffective in stopping the head falling to the side. Anyway I’m going to try it over the coming week and see how I get on.

Mark

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The month of October – part 3

Calendar entries highlighted in yellow

19th October – The duvet won… this time / Care plan rewritten / The fourth calls start

Half the duvet slid off the end of the bed during the night and my legs have grown so weak that I was unable to raise them up whilst lifting the duvet back onto the bed. In fact when I tried to do so I experienced pain in my leg muscles. I did try getting out of bed (no easy thing these days) and pulling the duvet back onto the bed with my hands but my grip and strength is so poor that it had no effect and only increased my chances of falling over. I ended up having to sleep for the rest of the night on an open bed and feeling a bit chilly.

There was a bit of a déjà vu feeling about today’s meeting with Debbie, the home care manager for the care agency looking after me. Not so long ago we both sat around my dining table thrashing out the details of a new care plan, basically a document which details the care activities required to support me for each of the various calls throughout the day. And yet here we were again doing exactly the same thing. Why? Because the agency had taken so long to get the last one typed up and ready for publication that by the time they did my care package had increased in hours and number of calls. So this morning we’ve been adding additional tasks to the existing calls that have come to light in recent weeks and adding instructions for the final put to bed call at the end of the day.

Tonight saw the start of my put to bed calls with Francesca volunteering to do several a week. These are happening somewhat earlier than I would like at around 9 PM but of course have to fit in with the availability of the carers. It means that I will effectively be in bed for half the day as my morning call isn’t until 9 AM. It will also force me to reorganise the way I do things or indeed watch TV as I will no longer be able to watch a movie at night. It is certainly more than a little frustrating as time is very precious to me and I hate the thought of wasting 50% of each day just lying in bed.

20th October – A visit from Possum / Try again

I had a visit this afternoon from Marion, my OT, and Paul, one of the folks from Possum to discuss automation and lifelines. The highest priority is to find a reliable means of calling for help if I should take another fall at a time when I’m on my own in the house so this was top of the agenda today. The demonstration I’d previously received on call alarms proved unsuitable for my particular type of disability and indeed would have been totally ineffective at the time of my accident. So Marion had asked Possum what options they could offer. But once we started to discuss my particular needs I could see that he was going to be struggling to find a solution that would be suitable for all the situations I’d described. I needed something I could use during the day when I had a need to leave my desk but also be usable if I had a need to get out of bed at night to visit the bathroom. Fall alarms would not be suitable when lying horizontally in bed and indeed may not even activate if I gradually slid down to floor level instead of falling hard.

We looked at chin switches which were basically rather large plastic circular discs mounted on a plastic tube that encircles the neck. It looked big and cumbersome and although I could probably tolerate it whilst working at my desk I couldn’t for one moment imagine having one around my neck when lying in bed especially as it would need to be connected to a portable battery pack/transmitter. I then suggested having mats with pressure activated switches by my bedside and office chair. The idea being that I would step on these mats when getting out of bed or leaving my study. That would in turn start a clock so for example if I was not back and stepping on the mat within 15 minutes an alarm would be set off. The beauty of this particular idea is that if I took a fall and became unconscious the system would still work and call for help. However there were some concerns about inadvertently activating the pressure mats. Another idea suggested and one which is going to be pursued further is a variation on the wrist bracelet that CommuniCare demonstrated to me. So instead of having a call button on my arm it would be strapped to an ankle and to activate it I could either push that leg against something or bring my legs together.

The other topic of discussion was automation. During the autumn and winter I plan to base myself in the study upstairs as this is a relatively small room and easy to keep warm, plus it is near the bathroom and bedroom should I need either of these. Another big advantage is that it will be the farthest point away from any construction work that gets approved to build an extension. To reduce to a minimum the number of times I need to get up from the office chair and thereby reduce the risks of falling, I was looking for ways in which I could control the equipment around me. At the moment thanks to the pivot radius of my arm support I can operate my laptop computer, my cordless phone, and the intercom system, all without having to move from my chair. The next step is to be able to control the overhead ceiling light, a desk light and a TV. The solution to this is a small black box capable of capturing the infrared codes of electrical equipment as well as operating by remote some special light switches and wall sockets fitted with infrared receivers. I also wanted to have some electric blinds or curtains but because my staying upstairs is seen only as a temporary measure it was an almost certainty that I would not get funding. As for the rest a quote is being put together which should go through approval easy enough especially as the equipment being ordered is portable and could be utilised elsewhere in the house at a later date.

Equipment services have delivered a 6 inch raised toilet seat to try. As previously mentioned the toilet seat and frame idea was a no-go and my current 4 inch raised toilet seat is no longer high enough so it is becoming a real struggle to stand up after sitting on it. This new seat certainly makes standing up much easier but the aperture is slightly smaller than the 4 inch model so once again it is not as easy to wipe yourself. That’s more than enough detail!

21st October – Duvet = 2 me = 0 / Slowly getting there

I woke up feeling a little cold as half the duvet had slid off the bottom of the bed during the night again. I tried pulling it back with my legs but it only seemed to make matters worse. I struggled out of bed and tried to lift some of it back onto the bed but I could hardly shift it. I went back to bed with barely my lower legs covered and waited the remaining couple of hours for my carer to arrive. I need to think of some way of anchoring the bottom of the duvet to the mattress. Well it’s either that or sleep in a fully zipped up sleeping bag with a couple of air holes smile_regular.

Richard from Remap called this afternoon with some brackets that he’d made for my stair lift chair. These have been mounted on either side of the chair adjacent to the fold down arms and will each hold a switch at shoulder height that can be easily activated with minimal pressure. The idea is that by leaning very slightly to the left or right when seated in the chair I will be able to control it myself by sending it upstairs or downstairs. The next step is to get Liftech back so they can program the switches to the frequency of my equipment.

Richard also came bearing another gift: my new improved Ergo Rest arm support. This one is slightly longer so that my elbow and forearm are completely supported as opposed to slightly hanging over the edge. It also features slightly more padding so is a little bit more comfortable for prolonged periods working at the computer.

23rd October – At last!

Tim from Liftech called round this afternoon to program the shoulder height switches on my stair lift chair so that I can operate it ‘hands-free’. It was the second day in a row he’d called at my house as yesterday he was here sorting out a problem with the front door as it had stopped responding to commands and would no longer open or close. The switches work very well and I only need to lean slightly to my left or right to activate them. I asked Tim if he had ever come across anyone else using a stair lift in a ‘hands-free’ fashion and he said I was unique in all of Hampshire! Well, now we’ve worked out a solution (which I take particular pride in as the basic idea was mine and Remap just tweaked it) hopefully other people with a similar need will benefit.

So now I’ve finally got a stairlift installed and working as intended but in the months that it took to spec, quote, deliver, and rectify, the disease has moved on. What started out as a piece of equipment that would not only give me stress free access between the upper and lower floors, but would also preserve my independence a little bit longer, has been relegated to something that I only feel safe using with help and assistance from one of my carers. But don’t get me wrong I’m still very grateful to have it as at least I still have access to the whole house, just not when I’m on my own unless it was absolutely necessary. A stairlift is never going to be a long-term solution for people with MND and I never expected mind to be, although I did hope to get some independent use out of it. The best I can hope for now is that it buys me enough time for the house extension to be built, but with my legs weakening all the time it is going to be close.

It was a double ‘at last’ today as I also finally received an up-to-date care plan and risk assessment that for once actually resembles my current situation.

24-25th October – Catching up on outstanding jobs / Weakening further

It felt so good having Francesca back to do my care at the weekends after a couple of weeks absence due to sickness. In fact right at this moment Francesca is my only main carer available as the other three are on holiday so it felt lovely to have a friendly face around. And as usual with Francesca she spoilt me with delicious breakfast and dinner. As she is also the only technically minded carer I have I was able to give her some of the little technical jobs that had been building up such as programming my phones with additional contacts. Oh yes and resuming her job as resident blog photographer!

The wheelchair is becoming a constant companion now whenever I leave the house. On Saturday for instance it was bundled in the back of Francesca’s car for a trip to the hairdressers. It was the first time I had left the house in almost 2 weeks and the very first time that I had walked down the ramp that extends from my front door. Thank goodness the surface was treated with a nonslip material as it was raining out and I was worried about losing my balance. I’m starting to notice that getting in a car is becoming a little bit more difficult. I no longer feel so sure of myself when I lift one leg to get into the car whilst balancing on the other. It’s also taking more effort from Francesca to haul me out of the car. Actually travelling by car is starting to concern me as I become ever more dependent on the wheelchair. I need to find ways of easily transferring from a wheelchair to a car seat. To make matters more challenging it’s not just one carer’s car that I use so can’t look at adapting the car itself.

Another indicator that I’m losing strength in both my torso and legs is the fact that I am starting to struggle to get out of bed by myself. On Sunday it took several attempts to catapult myself off the bed so that I could get to the bathroom. My OT is looking into pillow and mattress elevators which like a lot of things these days will probably come along just in the nick of time.

I asked Francesca nicely this morning to take some pictures around the house of recent adaptations and equipment that I’ve been blogging about so you have an idea of what these things actually look like. Thank you Francesca, you did a nice job as usual.

Here we are at the top of the landing with the newly extended stairlift track that now allows to chair to reach onto the landing as opposed to adjacent to it. This is also where I had my recent accident, falling backwards and hitting my head on the door you see behind me.

Moving in slightly and you can see the 'hands-free' switches and brackets that Remap fitted.

And down we go… let's hope this thing has brakes!

Made it in one piece!

Here's the AquaJoy bath lift I took delivery of a recently. It really has made a tremendous difference.

My new wheelchair friendly ramp that social services built for me. You can also just about see me standing on a similar but smaller ramp on the inside of the hallway so that I can be wheeled directly into the living room.

I've included this one just to show you how the house currently looks. You can just about see part of the planning application notice pinned to the tree on the right of the picture. If all goes well then the single-storey extension will be built alongside the house where the shrubs are currently situated. The window you can see halfway along the brickwork would be transformed into a doorway.

28th October – More stairlift woes / Feeling a bit safer

I was just about to be taken downstairs this morning for my breakfast when I noticed a 2 inch black bolt lying on the carpet adjacent to the stairlift. Immediately my suspicions were raised as such a large bolt would most likely be structural in nature. I couldn’t bend down to take a look to see where it might have come from so that left giving Liftech a phone call, especially as whatever had happened had caused the stairlift to stop functioning. Until it was fixed I was once again trapped upstairs, so you can guess where I had my breakfast this morning. Fortunately Liftech were able to get an engineer out to me within the hour but even before he arrived a couple of other parts had fallen off the stairlift chair as my carer brushed past it on her way downstairs. The engineer arrived and after several phone calls to the manufacturer had identified the problem. Apparently there is an emergency pull release underneath the seat. The idea behind this is that if the chair had been fully rotated and was blocking a doorway and there was a need to quickly exit the house, say because of a fire, then it would be possible to pull this quick release and to be able to freely rotate the chair even without power. Well obviously neither I nor any of my carers would willingly pull it out of its recess. In fact nobody knew it was there. After further investigation the engineer discovered the root cause which appears to have been a cable catching on it so that as the chair rotates it most likely pulled it out. The cable has since been repositioned and the chair appears to be working fine again but it looks like the problem was there since day one. Whilst he was here the engineer noted that the new piece of extended track that was recently fitted was already showing signs of significant wear. In fact in one place it was already down to bare metal which explains all the white dust flecks we’ve been seeing on the carpet. He took a photo on his camera phone to add to his report and said that he will advise me in a few days time of what Liftech will do to rectify it. It’s looking like the powder coat paint job was not applied properly and the rollers on the stairlift are causing it to flake and peel off. I don’t have any problems with the remainder of the track as this was manufactured in Holland. Only the extended piece was fabricated in this country and obviously the paint treatment was not up to spec. It’s never a dull moment with my stairlift!

Lynn from CommuniCare called this afternoon to demonstrate another idea for a lifeline. Unfortunately there had been some confusion over what I actually needed as CommuniCare had in fact received two referrals: one from Linda, my contact with the MND Association, and one from Marion, my OT. But the paperwork and hardware that Lynn had brought with her only covered Linda’s referral which was for a belt mounted fall alarm. But Marion and I had already discussed and discarded this kind of device as unsuitable because I needed to be able to wear something in bed in case I needed to get up in the night. The fall alarm would be activated as soon as I was lying horizontally in bed so not much use. Fortunately Lynn had some other equipment with her in the car and so we were able to experiment with the idea we had last week which was to wear the call button on an elasticated strap around my ankle. Because the button itself is flush with the housing it wouldn’t be possible for me to just bring my ankles together to activate it. The solution was to use the big toe on my other foot to depress the switch and this seemed to work fine, or at least it does when I’m sitting in a chair. I guess the real acid test will be when I’m lying flat on the floor. It’s certainly unobtrusive as my trouser leg covers it up. In fact I don’t even know that I am wearing it. Apart from the ankle strap and button the only other hardware is the speaker box connected to the phone point and mains socket. It is just about sensitive enough to pick up my voice upstairs even though the box itself is downstairs in the living room (because I don’t have an upstairs phone point). So now after nearly 3 months since we last looked at lifelines I have something that seems to work reasonably well. It certainly gives me a feeling of added security and safety knowing that should I take a fall then just like Dorothy in the Wizard of Oz all I need do is click my heels three times and say there is no place like home! I would at this stage like to thank the North Hants branch of the MND Association for funding my lifeline.

29th October – The district nurse calls

I had my regular monthly visit from the district nurse or community nurse as I believe they’re called nowadays. We talked a little about pressure sores. I don’t have any at the moment and my regular carers keep a close eye on my skin to make sure that I don’t. Nevertheless I’m spending an increasing amount of time immobilised either lying on the bed or sitting at my desk so I need to be aware of it. But the one that could be a problem before too long is the thumb joint on my right hand which is constantly resting and being pressed up against the padding on my arm support. As I am using the computer for most of the day it doesn’t get much rest and lately I’ve started to notice that the skin around that joint is starting to look swollen. After discussing this with the district nurse she has decided to place an order for some kind of padding to go around the joint. Hopefully this may alleviate the problem.

30th October – My GP pays a home visit

It’s becoming difficult to get down to the surgery each month for my regular appointments. I’ve mentioned this to my doctor before and she had said she was quite prepared to come out and see me if it became too much of a struggle. So this month I took her up on her offer although I must say that she caught me out completely this morning when she turned up at my door completely unannounced. I’ve not seen her for a couple of months as she’s been off sick and then on holiday so there was a lot to catch up on. One of the things we were discussing was the current difficulty in obtaining the Riluzole medication I need each month. I used to be able to get it within about 15 minutes of presenting the prescription. Now it takes at least a week. Apparently the shortages appear to be across the country and indeed it has been mentioned on the MND Association website. The reason for the shortage is due to the fall in the value of the pound against the euro so high value drugs such as Riluzole can be sold in Europe for greater profit. My own supply of this drug runs out next Thursday morning so my doctor is liaising with the chemist to sort out a supply.

I was just thinking actually that it’s interesting to note that for each year I have had regular appointments with my GP I have used different means to see her. All through the first year I walked to the surgery which was about 30 minutes away. All through the second year I have been using Basingstoke Neighbour Care to transport me by car. Now as we enter the third year will it be regular house visits I wonder? It’s looking that way as my doctor has said that she will call back in a couple of weeks.

Mark

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