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.


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Late Autumn (November) – part 1

Calendar entries highlighted in yellow

3rd of November – Wrapping up the training / An emergency repair

I had the last of my scheduled phone-in remote training sessions with Karen from AbilityNet this afternoon. It was really a chance to look at some of the things I was experiencing difficulty with in the weeks that I’ve been using the voice recognition software. One particular problem I had was getting the software to recognise certain names instead of confusing them with like-sounding words such as Ann & and. I explained to her that I was finding it infuriating that no matter how many times I repeated the words or how many ways I tried to say it the software would still refuse to identify it correctly. The way I was shown that this particular problem can be overcome was to treat the word as a command as opposed to dictation. So Karen has been showing me how to create commands this afternoon for those extra stubborn words that simply refused to be identified. So now every time I want to say ‘ Ann’ I have to say ‘ Ann without’ (in other words Ann without an E on the end). For the software to interpret my speech as a command instead of dictation I have to add a pause after I have finished dictating but before I issue the command.

Another problem I’ve noticed lately with the software is that for some reason the accuracy of its recognition abilities seemed to be diminishing over time which was particularly puzzling especially as I regularly updated the user files which in theory means that the software is learning and improving the more I use it. Asked if it was possible to delete the user files but I was told the easiest option would be to simply create a new user account which is what we did and after I had trained the software again the accuracy improved dramatically.

And that just about wrapped up my training for the software. I wouldn’t say that I’m an expert by any stretch of the imagination but I have enough knowledge now to be able to use the software for what I need whilst at the same time being aware of its limitations. I still have some unspent training hours but I shall hold these in reserve for a later date when I may wish to delve into some of the more advanced features. In the meantime I still have full support from Karen so I can always e-mail or phone her with a question.

* * *

It was Remap to the rescue today! I’ve probably mentioned somewhere in the blog that I have a foot pedal to flush the loo because my arms are too weak to operate the flush and it became too dangerous for me to raise my leg up and kick it down without upsetting my balance. Yesterday the cord between the foot pedal and flush handle snapped leaving me with no way of flushing the loo. My brother, who had called round with my weekly shopping that evening managed to make a temporary repair that got me through the night. So today I contacted Terry, a Remap engineer, who turned up at my door less than an hour later to assess the problem. He then drove off to the local hardware store and returned a little bit later with a length of chain which appears to be far more robust than the original cord. So thanks to these wonderful people I am now able to perform one of life’s daily tasks independently once again.

5th of November – Care package upheavals

Where do I begin? How about ‘I spoke too soon’! In a recent blog article that I wrote summarising my first year of having care in the home I ended by saying that it takes only one person to pull out from my care package for it to be disrupted. Guess what, the care agency contacted me today with the news that Kim has left the agency. It’s another hammer blow as all my hopes for a stable care package after months of disruption had been pinned on her. Everything had been going so well and I counted my lucky stars that I had finally found someone with the right skill set, attitude to work and personality. I had begun to relax a little in the belief that everything would settle down. Surely everything would be okay this time as she’d been with the agency for a number of years? And now everything is in pieces again and I’m back to where I was early in the summer with large gaps in my care plan and no default carer in place. In fact I’m even worse off as recently Francesca has decided to cut her hours back because of her growing commitments elsewhere and I had been hoping that Kim would be able to step in and fill the vacant slots. It’s a double hammer blow that has left me reeling and feeling really down. I seem to be really unlucky with my carers. No sooner have I found someone with all the right qualities and got to know them so that I feel comfortable with them coming and going, and they are leaving. What is it with the care industry? It was with Kim that I had hoped to be spending my social hours during the week so that I would at last be able to get out of the house on a regular basis instead of being shut indoors most of the time. Some days I just feel like giving up.

8th of November – A day of learning / Locked out!

I’m struggling to use my computer quite badly at times. As my upper limbs slowly become nothing more than inanimate objects I am finding it increasingly difficult to interact with the one thing still left open to me. It doesn’t seem that long ago that I received my speech recognition software and yet here I am now becoming ever more dependent on it, not just to type e-mails or update this blog, but also to navigate my way around the whole of my computer system. Nowadays I can barely type a sentence using the keyboard without feeling exhausted because of the limitations in moving my arms far from my body. So to compensate I end up leaning my whole upper body in one direction or another so that my hands can reach the keys. Of course trying to operate a computer in this fashion soon starts to cause my muscles and back to ache.

Initially I saw speech recognition as a niche product that I would use to supplement my hands when they tired. But already I’m having to elevate it in importance because I simply cannot be productive anymore with my hands. I am very aware however that speech recognition software is not a universal solution for hands-free computing. In fact it was never designed for disabled people or for doing anything more than converting speech to text for the purpose of creating business documents.

Just lately I’ve become increasingly frustrated at how long it’s taking me to do things on the computer. Before I had MND I used to be able to work a computer very quickly but now my physical body is no longer capable of keeping up with my racing mind. So today I’ve been ploughing through the user guide (the electronic version of course) trying to memorise the various vocal commands to extend the versatility of my voice recognition software. It’s actually been quite an interesting exercise as I’ve learned quite a few new tricks. I didn’t know for instance that you can move the mouse cursor in any direction by issuing voice commands (albeit slowly), or that you can get it to perform single-click, double-click and right mouse click operations.

I keep setting myself targets to see how long I can operate my computer without touching the keyboard or trackpad. Admittedly it is not very long at the moment as I’m trying to fight against 30 years of keyboard use, but it is nevertheless improving as I get to grips with starting programs, moving between open windows and tabs, surfing the Internet and inputting text. And as I have already said before, voice recognition is not 100% reliable, suitable or fast in certain situations. But I am already dependent on it and can never go back to typing on a keyboard. The fear I have now is that I am dependent on my voice not degrading.

* * *

I had a bit of a panic this evening. The carer for today (not one of my regulars) had fully closed the bathroom door before she left. I only found out when I attempted to visit the bathroom and discovered that I could not operate the door handle with my paralysed arms. I was locked out and needing to get in! I had to make a quick emergency phone call to my next-door neighbour to ask him to come round and open my bathroom door which fortunately he did straightaway. I felt really embarrassed having to ask someone to do something so trivial, but not half as embarrassed as I was sitting in my study undressed!

10th of November – eBooks: take 2 / Audio blog experiments

Much earlier in the year I wrote a rather lengthy blog article on electronic books (eBooks) and the new Sony Reader which I had invested in the previous autumn. Although the whole concept of downloading books and storing whole libraries on a device no larger than a paperback which could be carried around with you had a certain appeal, I concluded that it was still early days for the technology and that the choice of books available was extremely limited. The Sony/Waterstones partnership has pretty much had the market to itself for the past year or so in this country and yet I feel they have done little to secure a strong foothold before the mighty Amazon juggernaut rolls in. Each week I pay a visit to the Waterstones website hoping to find some new releases of my favourite authors only to go away disappointed yet again. Consequently despite owning an eBook reader for over a year now I have read very few novels on it. In fact the disease has already moved the goalposts and I am no longer able to operate the device effectively. To overcome this I’ve been experimenting with reading directly off my laptop screen. This is possible because eBooks purchased are first downloaded to the PC’s hard disk. Using the Adobe Digital Editions software it is possible to view these files without first transferring them to a separate eBook reader.

This autumn Amazon launched the Kindle eBook reader in the UK along with a far larger choice of books for downloading. The Kindle works in a fundamentally different way and doesn’t require a computer to purchase and download books. Instead the device itself is able to connect to the Amazon store via wireless technology and download the books directly to the internal memory. I might have been very tempted to buy one of these devices simply because it would have opened up access to a far greater selection of books, had it not been for a piece of software that I’d heard Amazon was developing. Today Kindle for PC was released as a free download. Basically it’s a piece of software not dissimilar to Adobe Digital Editions which allows you to read and organise your eBook collection directly on a computer screen. So even without spending a couple of hundred pounds on hardware it is now possible to access several hundred thousand eBook’s available in the Amazon store.

There is one catch with all this and that is the Amazon Kindle uses its own proprietary file format whereas the Sony Reader uses the industry-standard EPUB format. Unfortunately neither device can read the other’s books. In a way it doesn’t really matter if you only plan to read your books on a computer screen as it just means loading up a different program. It would only become a problem if you wanted to read your books on the go and in this case you would need both sets of hardware. If my situation was different I would be concerned about competing formats but all I really care about now is having access to the books I like, not whether they can be read by any device in the future.

Anyway I’ve been dying to get my teeth into a good novel for a long time now. It’s so frustrating having a couple of shelves full of paperbacks that I can no longer read. I couldn’t download the software quick enough and within minutes had purchased and downloaded a couple of novels I was keen to read. I’ll probably return to this subject in a future blog entry as reading is something close to my heart. In the meantime I’ll be trialling the software and enjoying once again the thrill of a good novel.

This is the home screen which displays all the books that have been purchased and downloaded. Progress bar running along the bottom of each book icon gives an indication of how far through the book you have read. A shortcut menu presents various options such as start reading from the beginning or view a table of contents.

Here we can see the cover artwork in more detail as well as a list of bookmarks which can easily be navigated to.

This is the main reading screen which provides an uncluttered view. However, all that white space on a backlit LCD screen is not exactly restful on the eyes, which of course is where E ink scores points as it is a reflective technology.

* * *

Something else I’ve been experimenting with today is creating audio blogs using a free piece of software called Audacity Portable. There’s a couple of reasons why I’m looking into this. The first is a desire to preserve a little bit more of myself for when I am not here, a sort of legacy if you will and another attempt at reaching beyond my years. The other reason is to record my voice as it is now and then through successive recordings show how it might change as the disease affects my speech. In some ways I wish I had started this right back at the beginning of my blog as it would have given a more complete picture. Although I can still talk perfectly normally I do need to take more frequent pauses because of my diminished lung function. This was quite noticeable when I attempted to narrate the entire Second Anniversary blog article by the end of which I was feeling quite tired and a bit out of breath. This is something I’ve noticed more recently now I am becoming ever more dependent on voice recognition software. Anyway by the time you read this I should have uploaded the first recording. Just don’t expect anything too special. It’s not like I have a distinctive voice like say David Attenborough or Richard Burton!


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Second anniversary

Two years after being diagnosed with Motor Neurone Disease

Until recently I considered myself as one of the lucky ones. I went through my entire adult life with barely a cough or cold. I used to congratulate myself on my good health and give thanks that I was not like some other poor unfortunate people. But in the summer of 2007 it was becoming obvious that something peculiar was happening to me. What was happening to my strength? Why was it becoming increasingly difficult to hold my arms up for any length of time? Jobs around the home and garden that required extensive and repetitive movements were beginning to tire me out, whilst lifting boxes of office documents at work were starting to feel heavy. And yet in every other respect I felt fine. There was certainly no pain or any form of discomfort. It was a mystery. My doctor was as mystified as I was so in the early autumn of 2007 I was referred to a neurologist and thus began a series of tests over the next two months that would eventually, by elimination, rule everything else out leaving only the horror that is MND.

It was two years ago today that I received my diagnosis. At that time I didn’t really know anything at all about the disease so couldn’t totally comprehend what it meant or how I would live with it. Nevertheless being given a diagnosis of an illness that cannot be slowed down, stopped or reversed, and being told that my life would be significantly short was devastating enough. Just how do you cope with the knowledge that fate has dealt you a cruel blow and will rob you of decades of life? I wept for a future I would never see.

So here we are in late 2009 two years on from that terrible evening when I sat across from the neurologist in that bright but sterile consultation room listening to the worst news of my life. So do I still think I am one of the lucky ones? Actually yes, because I’m still here when other people diagnosed after me have sadly already lost the fight. Nevertheless the effect of more than two years of nerve degeneration and muscle wasting have taken their toll and have impacted so many aspects of my life. In the first year after diagnosis I lost two cornerstones of adult life: the ability to work and support myself financially, and the ability to drive a car and the freedom that brought me. I also had to say goodbye to cycling, something I really enjoyed during the warmer weather. It also meant giving up all hopes of being able to maintain and improve my house and garden myself. And in this past year it has become a lot more personal as I had to say goodbye to dressing and undressing, washing and shaving and even feeding myself. Hobbies and interests that I’ve had with me all my adult life such as reading a good book or the sheer enjoyment of composing and taking a good photograph are becoming nothing more than a memory. I can’t even hold a pen to write my name anymore.

To illustrate where the disease has taken me in the space of just two years just consider bedtime. A carer arrives at 9 PM to brush my teeth, undress me and tuck me into bed. There I lay barely able to wriggle or lift my head off the pillow, my arms almost helpless resting on my legs whilst an emergency lifeline call switch is strapped to my ankle. I cannot turn onto my side so have to lay on my back all night. My shoulder blades constantly feel like they are digging into my back making it very uncomfortable to rest in the same position. If I get an itch all I can do is try and ignore it. If the duvet slides off me then I’ll spend the rest of the night uncovered. If I need to visit the bathroom in the night I have to hope and pray that I can find enough energy to roll sideways and catapult myself off the bed. The simplest of life’s routines have become traumatic.

In the first year I lost all motor control for my arms so that they are now nothing more than dead weights. This was cruel enough as we use our upper limbs to interact with the world around us but at least I could take some consolation in the fact I could still get around easily enough. But it was short lived as I have had to come to terms this year with steadily diminishing mobility. I started the year being just about able to go for a one hour walk by myself. But as the months rolled by the distances and time that I could stay out gradually decreased to the point where I can do little more than walk around the house and even then only on one level. It often feels that the world around me is contracting as most of my time is spent indoors, a stark contrast to 2 years ago.

It would seem that once the disease has started to attack a particular area then loss of function can occur surprisingly quickly. But the disease is also unpredictable and nobody seems to be able to say where it will strike next or how quickly. Hanging over my head like a dark cloud all year has been my declining respiratory system. It took a big drop last winter which immediately started the alarm bells ringing forcing me to consider for the first time the twin options for having a PEG and NIV. All of a sudden it felt like I had turned a corner, that it was no longer just a disability, just an inconvenience to the way I lived, but instead was becoming something that would have an end date. At the time it was quite a shock but like the diagnosis itself I have steadily over time tried to come to terms with it. And so far, fingers crossed, I’ve not actually had need of either.

But despite all of the changes that are going on inside of me it is not all bad news, in fact there is still much to be grateful for. My breathing for example appears (at least to me) to be fairly stable at the moment judging from the fact that I can still get a good night’s rest and not wake up with a headache or feelings of nausea. My speech remains unaffected which is just as well as I depend on it not only to articulate my thoughts, feelings and wishes, but also to control (to some degree) my computer. Although I do have to say that the power of my voice is diminishing and I’m finding that I’m taking frequent pauses when talking to people, a sure sign of diminished lung function. But at least I’ve not yet experienced any problems swallowing so have not had to make any adjustments to my diet.

The care that I receive at home has become steadily more pervasive and time-consuming, and I have had to get used to a steady stream of unfamiliar faces coming through my door and learn to regulate the rhythms of my life to fit in with the care schedule. Slowly but surely being cared for has woven itself into the very fabric of my life. Of course I’m very grateful for it and indeed completely dependent on it but it is also increasingly difficult to find the time to do the things I want to do.

My need for equipment and adaptations to the home has been steadily growing throughout the year and if there is just one piece of advice that I could pass on to anybody reading this that has been newly diagnosed it would be ‘plan ahead’, especially if you are considering large structural changes to your house and hope to take advantage of a grant to fund it. I’m currently in the process of awaiting planning permission for an extension to the house, something which was instigated many months ago, but on hindsight it would have been much wiser to have started looking at it this time last year. But last year my legs were in a much better condition than they are now and so I was lulled into a false sense of security and caught a little off guard when they did begin to deteriorate. So the lesson to be learned is that with MND it is pretty much a given that you will lose the use of your arms and legs so it is best to be prepared for this well in advance. I should learn to take my own advice more often! Something else to appreciate is how transitory some equipment can be. As I’ve travelled through the past two years I’ve left a trail of discarded gadgets behind me as the disease slowly affects more and more of my body. I get very little use out of some of these items before paralysis and weakness consigns them to the scrapheap.

MND can present a real challenge for those wishing to carry on as normal a life as possible. There are some people in particular that I wish to thank for their tireless efforts in helping me maintain as much independence and dignity as possible. Firstly a big thank you to Marion, my OT with Adult Services who has done so much for me in acquiring equipment in a timely manner. I’m also indebted to Richard, my ever helpful Remap engineer who’s put together some wonderful little gadgets that have made such a big impact on my life. I would also like to say a big thank you to the MND Association for funding my new emergency lifeline as well as the voice recognition software which I use all the time now for this blog (in fact it would no longer be possible without it).

Because of the global nature of MND it could be all too easy to let it overwhelm you and that indeed would be a tragedy for it would waste the precious time left. Yes, in the space of two years it has completely transformed my life and at times things do indeed seem bleak. But with the right kind of care and support in place life can be made bearable. I am quite lucky in living where I am because it’s often been said that the care and support you get is a bit of a postcode lottery. Fortunately I have a very good support network that has sprung up around me without my having to ask. Surprisingly even the grant process for the extension wasn’t as traumatic as I had been led to believe from reading the stories of other people.

Remember the film Forrest Gump? There was a popular saying that went ‘life is like a box of chocolates, you never know what you’re going to get’. I’ve always liked that saying, I just never imagined that I would be lumbered with the coffee cream! smile_regular I figured out a long time ago that there would be only two ways I could approach this cruel disease: I could either let it all overwhelm me and spend each day feeling sorry for myself, or I could do what I have chosen to do which is to try and inject as much humour into my life as possible. Surely it is far better to be remembered as somebody who made other people happy? That is how I would wish to be remembered. I won’t pretend that it is easy, I’m only human after all, and there are days when it is hard to see the good in things especially when I know what is coming. The constant upheavals in my care package are not making things any easier. Thankfully I’ve so far always been able to pull myself back up, and long may it continue.

In the course of my journey I’ve met so many kind hearted and decent people; from the healthcare professionals monitoring my progress, to the carers looking after me on a daily basis. It has made a tremendous difference in how I get through each day. And on that note I would like to thank all my family for their continued help and support; to my brother Jason who continues to do my weekly shopping and help out with various little tasks that lie waiting for him each time he comes to visit; to my brother Chris who despite living at the other end of the country calls me every week for a chat; to my uncle Alan and aunt Joan who have been ferrying me around on hospital visits and generally taking care of me when I go to visit them. I’d also like to say thank you to Ann and Francesca, my ever loyal carers who have been with me throughout this year and have done so much to help lift my spirits. Thanks also go to Jim and Val, my friends from the neighbour care scheme who are my constant companions on the regular visits to see my doctor and in some cases to the hospital for tests. I’d also like to say thank you to Gavin the Gardner who’s done a wonderful job this year in keeping the outside of the house looking very presentable. In addition I would also like to say thanks to my friends who e-mail and phone me and who make me feel like I have not been forgotten. It is very much appreciated. I would also like to take the opportunity to thank all the people out there who have been kind enough to drop by and spare a few moments reading my blog, and especially those who have been kind enough to leave comments and messages of support in the guestbook. It really means a great deal to me and I hope you’ll continue to drop by for the journey ahead. I have no idea what the coming year will bring and I try not to dwell on it too much but I think I’m going to need all the help and support I can get.

And finally, talk about events conspiring against me again. I had hoped to make the most of the lovely autumnal sunny weather were having today and ask Francesca to take me out to one of the parks for a spot of fresh air and an opportunity to get some pictures of us together to mark my second anniversary. Unfortunately Francesca has not been feeling very well at all so we had to cut our time together down to the minimum as I didn’t want to see her suffer (or for me to catch anything). But before she left I did manage to get her to take at least one picture of me in my study to mark the occasion. Thank you Francesca, you’ve done your usual wonderful job! Get well soon.

Taken this morning in my study where I shall be based throughout the winter months. Peeking out from behind my shoulder is the Gooseneck microphone that I use for my blogging, and the new extended arm support can be seen in the foreground. Without these items I would now be helpless!


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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.


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