The month of October – part 2

Calendar entries highlighted in yellow

8th October – Fixed! / Toileting woes

Tim from Liftech called early this afternoon to fix the glitch with the stairlift. It turned out to be a problem with the way the swivel seat microswitch was set up. He’s also reprogrammed the upstairs and downstairs wall controls that can be used to summon the stairlift. They stopped working when the stairlift track was extended which forced them to replace the electronics card because of the increased amount of teeth on the rack and pinion. So now I have a reliable stairlift that my carers can operate to bring me down stairs. The only thing outstanding is the ‘hands-free’ control mechanism which they are currently working on.

As my legs continue to weaken answering a call of nature is becoming quite stressful. Although I already have a raised toilet seat which I haven’t had that long I am already finding it difficult to stand up after sitting on it. The latest idea is to supply me with a Mowbray toilet seat and frame. This is basically a tubular metal frame with telescopic legs that is placed directly over the toilet. Sitting on top of that is a plastic toilet seat. Because it is height adjustable it can be raised up further than a simple clip on seat. Unfortunately it has not proved that successful for somebody like me with upper limb paralysis as the design of the frame and seat is too restricting on my arms and legs. This came to light this evening and resulted in a rather embarrassing moment for me as I was forced to call for help from my carer. This disease destroys all your dignity!

9th October – Planning submission under way

I had a guy from the planning department call on me this morning to take some photos of the side of the house where the proposed extension will be built. So far so good as it was only about a week ago that the planning application was submitted. Let’s hope the rest of the process is as quick.

11th October – I give up with some people!

My care agency were struggling to find anyone to do my care this evening as all my main carers were either off sick, on holiday, or out-of-town. And for various reasons all my backups were also unavailable or out-of-town. Things became so desperate that the out of hours on call woman had to come out and do my care herself! Later that evening and shortly before she left I took special care in describing how to operate the power doors in the living room and hall way as for some reason people still continuously get confused in which switch does what despite the fact that there are only three. I also stressed the importance of making sure that the front door was shut before leaving. So what happens? I’m upstairs at my desk as she walked out of the house. Immediately I notice something is wrong as usually I hear the sound of the lock on the front door engaging except this time everything is quiet. I immediately call the out of hours number hoping to catch her before she leaves but there is no response. After a couple of failed attempts I phone my next-door neighbour (who fortunately has just arrived home) to ask him if he can check my front door as I am unable to come downstairs on my own anymore. A couple of minutes later he notifies me that both the front door and hallway door are wide open! So thanks to my neighbour the house is secured again. After another hour or so I finally get through to the woman on the out of hours service who called earlier. When I ask her if she checked to make sure that the door was locked before leaving my house she admits that she was in a rush to get away. So basically she failed to comprehend which switch to operate and simply walked out of the house without looking back. I am completely stunned at the stupidity of this person. I am terminally ill, progressively paralysed and trapped upstairs unless helped. I depend on these people not just for my care but also when they leave to ensure that I am safe and secure. To walk away from such a person’s house without having the commonsense to make sure that the house was secure is bordering on criminal negligence. I could have been burgled or attacked in the night or one of the neighbouring cats could have found its way into my house as they like to do given the chance. Until my recent accident when I was still able to walk upstairs by myself at night I used to do a final security and safety check just to make sure that everything in the kitchen was switched off, that all the lights were off, and that the front door was shut. Now I am dependent on others to do this for me and as soon as somebody new comes to my house it all goes wrong. Needless to say I shall be having a quiet little word with the care agency tomorrow.

12th October – An afternoon at Birdworld

Fresh air at last! After three weeks of being confined to the house I’ve finally been able to get a change of scenery, the first since my accident, thanks to Kim who kindly donated her time. But the days of just grabbing a jacket, putting my shoes on, and jumping in the car are gone. Getting ready to go out is becoming a bit of an adventure in its own right. The wheelchair, sponge seat and detachable foot rests have to be packed away in the boot of the car. I then need help getting shoes, jacket and glasses on. We need to make sure that I have my blue badge, drinking straws and radar key (for disabled toilets) with me. I then need to be helped into the car, buckled in and my arms positioned for comfort. At the moment I am at least able to walk out of the house into the car but there will come a time when I will need to transfer from a wheelchair to the seat of the car and that is going to be interesting. The only part that caused me apprehension today was stepping out of the house because of the high platform outside the front door that was erected last year to make it easier for me to reach the lock. Nowadays stepping off the platform onto the driveway plays havoc with my balance and as this was the first time I had need to do it since my accident I was even more worried that my legs might collapse beneath me. Fortunately Kim, being the good carer that she is did everything she could to help steady me as I gingerly stepped off the platform. Silly isn’t it? Even a year ago I could not have imagined that stepping outside my own front door would be so traumatic.

We spent the day at Birdworld which is within about half an hour of where I live. We were very fortunate with the weather. The sun was shining and it was a beautiful clear blue sky although it was a little chilly in the shade so I was glad that I had my jacket with me. Being a weekday and out of season the place was pretty empty so we often found ourselves walking (or in my case being pushed) along pathways with no one in sight. From a disabled visitors point of view there are plenty of level pathways so it is easy to push someone around in a wheelchair. However there were a number of doors to attractions that needed to be pulled open which is difficult to do when you’re also trying to handle a wheelchair.

As the name would suggest there were birds, big and small, from all over the world. I’m hardly an expert in remembering the names of all the birds, but the more familiar ones such as flamingos, ostriches, kookaburras, vultures, parrots and my favourite, the snowy owl, stick in my mind. In addition to walking around 26 acres of aviaries and landscaped garden there is also an underwater world, basically a building housing a multitude of tropical and freshwater aquariums depicting ecosystems from around the world. And for the children there is the Jenny Wren farm where chickens, turkeys, goats, sheep, rabbits etc can be seen.

Halfway through the afternoon we stopped for lunch in their restaurant where we were the only visitors. Kim and I enjoyed delicious hot jacket potatoes with lashings of hot butter and a mountain of grated cheese. Yummy!

It had been an enjoyable way to spend an afternoon and I would like to thank Kim for sparing the time and for taking such good care of me.

Just a few photos this time unfortunately. We’ll try harder next time!

The birds at Birdworld!

At Birdworld

Mister Snowy Owl just didn't want to look our way!

13th October – I could have done with this yesterday / Planning application

Roger, the technician with social services called round this morning and set about building a ramp outside the front door. Originally the ramp was to be part of the house extension project but disease progression i.e. weakening of my legs and an unpredictable balancing system, necessitated a more rapid response so my OT made arrangements for it to be built using their own resources. It’s fully wheelchair ready so has a fairly gentle slope which of course means that it extends out from the door quite a long way. The surface is covered in the same nonslip material as was the platform and on one side there is a full length guard rail. In fact the whole thing looks a bit like a wooden bridge. Kim has suggested that we hang flower baskets along its length but I’ve got a much better idea, hehe. I was thinking we could paint the driveway beneath it and to either side a nice shade of blue, then I could get Remap to fashion some plastic dorsal fins which could be liberally sprinkled around the imitation moat. A nice little sign with the words ‘beware of the sharks’ would add the finishing touch and provide the ultimate double glazing salesman deterrent smile_regular. All joking aside I’m pleased with the outcome as it will make it a lot less traumatic to walk out my front door. There is also a ramp on the other side of the door in my hallway so that when the time comes it will be possible to leave or enter the house by wheelchair. The only downside is that my double width drive can now only hold one car.

I received a planning application notice this morning which needs to be displayed outside the house for about 21 days notifying the general public of my intention to build a single-storey side extension to my house. Kim has attached it to the tree at the end of my front garden. Fingers crossed I don’t get any objections. I’ve also been given a reference number which enables me to visit the council’s planning application register website and view the status of my application. A quick check reveals that it is at stage two of six ‘consultation’.

15th October – A visit from Lara

I had a visit this morning from the folks at St Michael’s Hospice. It was my regular checkup visit to see how everything was going. We talked about my slight loss of appetite, which is particularly noticeable in the mornings but can also manifest itself in the evenings. Lara is going to arrange for a dietician to come and see me although she feels from what I have described that I am already eating quite well. She’s suggested that I might like to try some Ensure drinks which are nutritional drinks high in calories for people who cannot take in all the calories they need from food alone each day.


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The month of October – part 1

Calendar entries highlighted in yellow

1st October – Remap to the rescue

Richard, from Remap called round this afternoon to take a look at the ergo rest arm support I have been struggling with since being based upstairs. He has taken it away with him so that he can fashion another extended arm support gutter similar to the one I have downstairs fixed to my dining table. In the meantime he has removed the one from downstairs and adapted the clamp so that it can be attached to my desk upstairs. This has made a terrific difference to my comfort as for the last few days my right shoulder has been drooping because the arm support I was using only supported my hand.

2nd October – Care package review / The return of the stairlift track / Further equipment loans

I had a meeting at midday with Rachel, my social care manager, to discuss what alterations would be needed to my care package in light of my accident, diminishing strength and stability. I feel that I am definitely at the stage now where I need to have someone around me for more hours of the day, not just to provide care, but supervision in case I run into difficulties. In recent weeks certain tasks have become progressively more difficult and it was only a matter of time anyway before I would have had to relinquish them. So I have asked for an additional 30 minutes on my morning calls and the same for my evening calls. I have also asked to have a 30 minute night call added as I can no longer undress myself or brush my teeth. Even getting into bed by myself is becoming a problem because of the difficulty in positioning the duvet over me. Rachel will now go back to her contact at the NHS Continuing Care review board to seek approval for the additional funding.

Liftech have returned this afternoon as promised and have installed the new extended piece of stairlift track. The additional 350mm of track has made a significant difference and has enabled the chair to come onto the landing so that when the chair rotates it feels a lot safer getting on and off. No longer is my body still in the stairwell with my feet hanging off the edge of the landing which gave me no confidence at all and which I felt was an accident waiting to happen. I did have some concerns about how far into the doorway to my study would the new track protrude, whether it will be a trip hazard, and how much of the doorway would be blocked if the chair was parked on the landing. I’m pleased to say that for now at least I can safely navigate past the parked chair into my study. In fact with the chair parked at the top the landing it obscures the track and removes the danger of tripping over it plus as an additional benefit it acts as a partial barrier to the stairwell. So when Kim came round to do my dinner this evening we gave it a try out and for the first time in a week I was able to revisit my own dining room and have dinner downstairs. Getting on and off the chair isn’t too bad although I would feel a whole lot more confident with someone around especially at the top where I have to walk backwards to sit on the chair. I could still seriously hurt myself if I were to misjudge it or if my balance went. At the moment I couldn’t operate it myself even if I wanted to as they have yet to come up with a ‘hands-free’ control mechanism. That is what they are hoping to sort out next week. But at least in the meantime I have access to the downstairs again as well as being able to go out and socialise.

Hampshire county council’s equipment service called round this afternoon with a couple of pieces of new equipment. The first is an AquaJoy bath lift which I’m really looking forward to trying out. I’ve been making do with a slatted bath board for the past year or so which was okay if I just wanted to sit down whilst having a shower, but what I really miss is being immersed in hot water with lots of bubbles so this is going to seem luxurious after a year going without. Time to dust off those rubber ducks and battleships! smile_regular

The other piece of equipment is a glideabout chair/commode which will be kept in the bedroom. As a glide about it may allow me to move from room to room upstairs whilst remaining seated and thus minimise the risk of falls. I believe it may also be rolled over the toilet to give greater height. At the moment though I’ll just be using it as a simple chair albeit higher than the one I had previously.

3rd October – Boys Toys

I’ve been having problems with my electric kettle lately. It’s one of those Breville Lightning’s where the whole water chamber lights up blue. I’ve had it a few years but lately it has caused one of the house circuits to trip out twice resulting in my carers having to go out to the garage to reset the fuse box. Today it died altogether in a spectacular flash which startled poor Francesca. Time for a new one! So after browsing the Argos website (we have one of their stores up the road) I settled on an even more gimmicky kettle, the Breville Spectra. This one doesn’t just glow blue it glows all the colours of the rainbow as the water gradually heats up, a true boy’s toy! Francesca and I stood there in a darkened kitchen mesmerised watching it cycle through all the colours. Sure it’s expensive and considering I’ve just had a Breville that’s blown up probably not the wisest choice but I couldn’t resist having something a little snazzy in the kitchen to liven things up. And besides I don’t buy many things these days. Mind you if this one dies I’m going back to the real basic kettles; the ones with whistles.

4th October – Bliss!

I had a real treat this morning. Francesca called early so she could set up my new AquaJoy bath lift and leave me to luxuriate in a hot bath whilst she got on with some housework. Oh how lovely it felt to be immersed in hot water once again rather than being sprayed. I can’t even remember the last time I had a bath. The bath lift is simple to use and gently lowers you into the bath almost silently. It doesn’t quite get you down to the bath floor level but gets pretty close. On this particular model the back support doesn’t recline as I was told by my OT that those models take up more room in the bath. Even so it is a massive improvement over what I had and improves my quality of life.

5th October – Approved! / Stairlift woes / Nuisance calls

I had some good news this morning. Rachel, my social care manager phoned to say that funding approval had been granted for an additional 1 1/2 hours each day which is exactly what we had requested. So my care package will grow from 28 hours per week to 38 1/2 hours per week (5 1/2 hours per day), a clear indicator of my escalating needs. But the good thing about it is not just having the extra care but also having someone around for more hours of the day in case I run into difficulties, a comforting reassurance when living alone.

My stairlift has been giving me problems… already! It has become very temperamental in deciding whether it wishes to move or not when a carer uses the joystick control on the armrest. We first noticed the problem last Friday when we couldn’t get it to take me back upstairs straightaway and it only worked after much messing around with the joystick and me wriggling around on the seat. The problem persisted all weekend but today it has begun stopping one step before ground level and failing to move when in the parked position at the top of the landing. Fortunately I have the folks from Liftech calling on Wednesday so I’ll get them to look at it then.

I seem to be plagued with nuisance phone calls the past few days which makes me wonder if I have a big neon sign stuck on my roof saying ‘please phone me’. These things are an irritation at the best of times but as each call requires me to stand up so that I can swing my arms and grapple the phone they are costing me valuable energy. Standing up is getting harder and harder so you can imagine how happy I am when after all the effort of picking up the receiver all I hear is a recorded message.

6th October – Dropping like flies / Measuring up / Remap does it again!

My care package is starting to creak and groan as my main carers succumb to colds, chest and throat infections, and the flu. Kim pulled out after doing my personal care yesterday morning and is still off. Francesca is really quite poorly and has had to pull out of all her commitments this week and is laid up in bed. Only Ann remains unaffected at the moment and she is due to go on holiday later this week. So at the moment the care agency is struggling to fill my calls, which is not made any easier by the fact that other carers are also off sick. Even the home care manager is off sick!

Roger, the craft technician working for the OT services, called round this afternoon to do so measuring up outside my front door. The intention is to do away with the timber platform that was fabricated about a year ago which enabled me at that time to gain access to the lock on the front door by raising me up about 8 inches or so. Now however that platform is becoming dangerous as stepping on or off it plays havoc with my balance. In its place I am going to have a ramp that will be wheelchair friendly. I’m told that it will be ready in about 10 days.

Richard (my friendly contact with Remap) has saved the day again. For quite some time now I’ve had to stand up and position myself directly over the cordless phone so that I can operate it. I would then have to use one hand to steady the phone with my other pressing the buttons. My phone has a curved underside which sits neatly in the palm of your hand, except of course I can no longer hold it, which means if I place the phone on the table and then just use one hand to press down on the buttons the whole phone will rock side to side and slide about. The other day it occurred to me that all I really needed was some kind of cradle that will support the telephone and be of sufficient mass not to slide about the table. I sent an e-mail to Richard a few days ago explaining my thoughts and asked him what he could do to help. This afternoon he dropped in with a neat looking cradle fashioned out of a piece of oak wood. The base was covered in nonslip rubber so the whole thing would stay in one place, and the wood had been scooped out of the middle and profiled in the approximate dimensions of my phone. Again there was some rubbery material on the inside to act as padding and to prevent slippage. It worked straightaway! Now when I’m sitting at the computer with my arm in the ergo rest support all I need to do is pivot in the opposite direction and I can reach out and activate the phone. No more do I have to stand up to pick up the receiver, sit down to listen, stand up to end the call, and sit down again to carry on working. What an energy saver! And like all the best ideas it is simple but efficient.


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Homecare – the first year

A year ago last week the life of independence that I had always known began to draw to a close. The disease had reached a point where performing physical tasks such as cooking a meal for myself, or keeping the house clean, had become too difficult and energy consuming to continue. A care manager was assigned to me, my needs identified, and a care agency was called in to look after me. In the space of just one year my needs have considerably escalated to the point where there is little I can still do for myself. In those 12 months I have lost the ability to prepare any kind of food for myself, to wash and shave, dress and undress, or even to feed myself. Consequently my care package has grown from 14 hours/week to 38 1/2 hours/week, and from two calls a day to four calls a day, to keep up with it.

This first year has been a bit of a rollercoaster ride with its ups and downs of one moment perfect stability and the next complete chaos. I was checking back through my records the other day and I was perhaps little surprised to find that I have so far had a total of 25 carers looking after me. So much for the stability and continuity I was promised back at the beginning when in my naiveté I assumed that the people I had would always be with me. To some degree that is of course true as Francesca followed shortly afterwards by Ann have remained completely loyal to me and have gone on to become good friends as well.

The care industry can be a strange beast though. People don’t seem to stay in one place for very long and will swap and change agencies depending on where the work and money lies. Not so different from any other you might think. However carers can often work with zero hour contracts which enables agencies to dispense with staff at a moment’s notice if the work dries up. Of course it goes the other way as well meaning that a carer can just walk out if they find a better deal. So an environment is created which instils little in the way of loyalty. For the people like me on the receiving end of care it can be very disruptive. Just as you get to know a carer and develop a good working relationship and start to feel comfortable with them, they leave. It’s happened to me twice now, the first time was less than three months after I started having care when I lost my main carer when she decided to change over to nights. That was bad enough and a little upsetting but not the disaster it could have been as I had yet to transition to having my personal care done. The second time it happened was in June this year when I lost Alison. That was a real hammer blow that took about three months before it started showing signs of improvement. Alison had a wealth of experience, a good range of skills, experience of caring for people with MND, and a really friendly personality that I warmed to instantly. I still miss her even now and it has been my experience that finding such people that tick all the boxes are very rare indeed. Fortunately in recent weeks I have come across one such person, and Kim, like my other lovely carers, is proving invaluable with her wide range of skills and friendly nature.

Ann and Francesca have been simply amazing. Time and again they have gone out of their way to do nice things for me; special little treats that go beyond what is expected of a carer. Ann for instance is always treating me to cakes, collects my prescription every month and planted flowers in the containers by the front door so that there was a lovely splash of colour all through the summer. Francesca is very thoughtful and creative when preparing my meals and has been of tremendous help when it comes to people’s birthdays and there has been a need to shop for gifts and cards and have everything wrapped up and written out. And of course it has been Francesca that has been taking me out regularly since the spring. Like I say these are people that I treat as friends or even extended family. For instance at the weekends Francesca and I will often have breakfast together and chat away merrily. For me it is a chance to socialise and not feel so isolated which is what can happen now that I am removed from the workplace. I cannot stress too much the importance of having the right type of carers, particularly when living alone. MND is a terrible disease, no doubt about that, but even so it is possible to have a reasonable quality of life if you have a good support network.

In the year I’ve been having care I’ve got pretty good at spotting a good carer from a mediocre one fairly quickly. Fortunately I’ve not had any truly bad ones although I’ve had my fair share of mediocre ones; those who can’t cook, do a wet shave, make a bed properly, keep the kitchen clean, brush teeth or wash a person properly. There have also been those who seem to be short on common sense i.e. trying to light gas hobs through a glass plate cover, those who are dangerous i.e. hitting me in the teeth with a shower head, and those who are negligent i.e. leaving the front door wide open at night! By contrast the outstanding carers shine from the moment you meet them. These are the people that are capable of using their initiative and their common sense, of keeping a careful eye on their client and knowing when and how to intervene, they are thoughtful and considerate, have a wealth of experience which enables them to work without constant intervention so that you can just sit back and relax safe in the knowledge that things are getting done properly.

In one respect though I am lucky because I do have some say in who my carers are. This is not so with all agencies of course and sometimes you have to have who you’re given whether you like them or not. The agency I am with does to some degree try to accommodate me, so to ensure things run the way I want them to I work closely with the home care manager and at times have had a fair degree of input into shaping the care package. This has been how I’ve got all my best carers – by badgering the staff until they give in! If I didn’t I’d be surrounded by people who perhaps would not be suitable and feeling quite unhappy.

MND is a very complex disease and as such can place great demands on those who are caring for you. My care package had grown to a point where the three main carers I have are simply inadequate to cover the hours required or to provide cover in times of sickness or holidays. That much has been painfully obvious for the past few months so there is a pressing need to identify at least two more main carers so that we can lighten the load for the others and smooth out any disruptions. MND is also, thankfully, not that common so it’s no surprise really when a lot of the carers who come to me don’t even know what it is or even how it affects me. For this reason I think there is a real need for an MND awareness day course for carers, something which my own local hospice has hinted at doing.

So we end the first year of homecare with a care package that is showing signs of recovery after a bumpy four months. There are still a few problems to sort out particularly now that I have just gained a fourth call at the end of the day to put me to bed, which at the time of writing is still not in place as the agency is struggling to find people with enough availability. But hopefully we’ll have these problems ironed out soon. In the past year I have learnt how fragile my care package can be and how easily it is for things to go bad if even just one main carer is lost. As my needs continue to escalate, stability and consistency become ever more important. Fingers crossed that things continue to improve all the way down to Christmas.


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So here we are again. It’s been 700 days since diagnosis and it’s time to celebrate another 100 day milestone smile_party. Because the various day-to-day events and meetings are covered comprehensively in my calendar updates I thought I’d take this opportunity to focus more on the effects that the disease has had on my health over the past three months.

As I’ve written in previous entries the disease is affecting me on various levels now. The one that is causing me the most concern lately is my decreased mobility. Most of my time these days is spent sitting in one seat or another, either at my desk, at the dining table, or on the sofa. Anything more than a short walk nowadays is becoming a distant memory. My weakening leg muscles and unpredictable balancing system have meant that standing up and moving about have become risky ventures. These days I only have to bump into something with my foot and it will cause havoc with my balance threatening to topple me over. I also now have to be very careful when leaning or bending too far in one direction or another in case I reach the point of no return. Even swinging my arms and using momentum to reach things now carries a risk as the weight of a swinging arm upsets my balance. Navigating stairways has become very traumatic too especially when looking down. My own staircase goes through a U-turn and it was only this that enabled me to tolerate being able to walk up and down it for so long. Had it been a straight and steep staircase than I would have lost that ability a long time ago. Of course since the accident I have not walked down my staircase once. Another one of my abilities consigned to the history books.

Lately I feel like I’m trapped between a rock and a hard place. On one hand I am fearful of standing up for very long in case my legs give way on me, whilst on the other hand I am worried when I’m sitting down in case I cannot get up again. But sitting down all day means that my leg muscles aren’t getting exercised so when I do have a need to stand up my legs feel even weaker. It’s a vicious circle. The problem at the moment is that I am at that awkward in between stage; neither fully mobile or fully immobilised. Every time I go to stand up or walk around I introduce risks.

Something else that has become noticeable in recent times is that I’m slowly losing the ability to shrug my shoulders which can be pretty annoying when you’re trying to reposition clothing that is causing an irritation. I’m worried about losing this ability for another reason: I use what little strength there is left in my shoulders to help pivot my ergo rest which I use when typing at my computer. If the motor nerves in my shoulders completely die it’s going to make life very difficult indeed.

And another recent addition to my list of woes is that the muscle tissue in my hands is stiffening, most particularly in my left hand. I’d become so paranoid over the fear that my hands might start to claw inwards making it difficult or painful to stretch the fingers out again, that I made a conscious effort to keep my hands stretched out flat. So for example when I went to bed I would lay my hands on my legs with fingers stretched out, or when I was using a computer my left hand would be resting flat-out on the table. So now I am experiencing the opposite effect and it is getting very hard to draw my fingers inwards. Another side-effect of an inactive left-arm which is hanging by my side or resting on my leg most of the time is that the hand is starting to show signs of puffiness in the skin. My right hand is in much better shape because it is getting a lot more exercise as I use it to control my computer.

The physical act of eating and drinking (as opposed to the muscular actions of chewing and swallowing), are becoming ever more difficult. As my hands weaken it is becoming harder to hold onto things such as a fork, and trying to position my hands and arms at mealtimes takes a lot of my energy. The continual act of bending down low over my plate to compensate for arms that I can no longer lift makes my lower spine ache. It is for these reasons and the fact that eating in general is becoming a more tiring activity for me, that I am transitioning to having my carers feed me. It’s something I’ve fought hard to avoid but of course knew that it would happen one day. At least this way I can sit up straight whilst avoiding back ache and reducing the chances of choking.

Drinking brings its own problems now. If I try to stretch my head too far to reach a straw I find that the muscles at the back of the neck are too weak to support my head for very long in that position and I feel my head quickly falling towards my chest. I have a weak cough these days too and that brings its own hazards when eating because if dry crumbly foods get stuck at the back of my throat I don’t have enough cough to easily dislodge them so I have to rely on washing them down.

Another task I have just had to give up is undressing myself because I no longer have enough strength or range of motion in my arms to get clothes off my shoulders, unbuckle belts or remove underwear. So until the funding approval comes through for additional hours I am having to get my last carer of the day to undress me before she leaves. But as this is nowhere near the time I go to bed it means that I have to continue working at my computer wearing little more than a smile. Memo to myself: make sure the web cam is switched off smile_teeth.

And embarrassing as it is to mention (so don’t expect too much in terms of detail) even toileting is becoming very stressful because my arms are becoming so badly paralysed I’m having difficulty fumbling with clothing and wiping myself. On top of this my upper leg muscles have wasted to the point where I’m having difficulty lifting myself off the toilet. In fact I recently got trapped there for a short while as my first attempt to stand up failed and I fell back down. It wouldn’t be so bad if I had some strength left in my arms as I would then be able to have a frame around the toilet and pull myself up but sadly I depend totally on my thin legs and will need help with this soon.

The one area that doesn’t seem to have significantly degraded since earlier in the year is surprisingly my respiratory system. Sure it’s dropped a few percent in some of the tests I’ve had recently but nowhere near the dramatic drop I experienced over the winter months. I’m pleased to say that I still get a good night’s rest and don’t wake up with terrible headaches or nausea. Having said all that I’ve just started to experience a diminishing appetite, particularly in the morning. From what I’ve read I understand that this could be linked to a weakened diaphragm so I’ll have to keep an eye on it and hope that it picks up soon otherwise I shall be seeking nutritional advice.

And perhaps a worrying sign of things to come… I’ve noticed lately when I pull faces in the mirror that my cheeks are showing signs of depressions. A portent?

So there we are, my current state of health. When it’s all written down like this it does seem very worrying doesn’t it? I’m fast approaching a point where I will need help with the most intimate of life’s daily functions. The recent accident I experienced reinforced how helpless I am becoming as I lay on the floor twitching like a fish stranded on a beach, utterly powerless to do anything to help myself. Am I worried? Of course I am; I wouldn’t be human otherwise. But ultimately there is nothing I can do about it and the best I can hope for is to make each day count and to try and keep the mind occupied; the one part of me that is still ‘me’.


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