Reduced functionality

The signs had been there for some time…a portent of things to come. The weakening of my shoulders, the difficulty in raising my arms, the twitching of my fingers, and the sometimes conscious effort of breathing. My strength is slowly fading away and my energy reserves are starting to resemble those of an old battery with its limited ability to hold a charge. With every passing month I have less energy in reserve and I find myself tiring quicker and taking longer to replenish my energy. If my physical abilities were measured using a colour-coded traffic light system mine would now be flashing amber. Over the past couple of months my upper limb strength has continued to fall to the point where what I term as my ‘core’ abilities i.e. washing, dressing and eating are now under threat and I fear that it may not be too long before my independence begins to turn towards dependence.

Back in July I got my first inkling as to how weak my shoulders had become in recent months when I found that I had terrible trouble just trying to stand up from sitting in the bath. Most of the time I’ll take a shower but now and again it’s nice to just relax in a hot Radox ‘muscle soak’ bath. But every time I tried to push down with my hands so that I could raise myself up I would find that my arms would fold and collapse as soon as they started to take up my body weight, and I would slump back down into the bath. After several failed attempts things were starting to look serious. I was there alone and trapped in the bath. If I couldn’t get out then I would have to break all records and quickly devolve into an amphibian…or a baby Alligator :D, anything to survive long enough for someone to come and rescue me. Needless to say that I did eventually get out (unless of course you think I’m still stuck there typing these blog entries on a waterproof floating laptop, hehe) but I overloaded my weakened leg muscles to do it as I was forcing them, out of desperation, to compensate for my arms and to do all the work. I had pain in my legs for the next couple of hours. It was my first example of being in a situation in which I may find myself helpless to get out of – and with potentially fatal results.

My Occupational Therapist from Adult Services was quick to respond to my change of circumstances and within about a week had called round to demonstrate a bath lift – basically a seat that can be lowered and raised electrically – don’t worry, the battery remains outside the bath. Don’t want to do a Goldfinger :D. Eventually though I decided through my own experimentation that a simpler solution would suffice at this stage because I still had full use of my legs and so only need to raise myself a few inches higher then my legs to be able to stand up even without the use of my arms (I’d practised this on the lowest tread of my staircase). So eventually we settled on two simpler pieces of equipment: 1) a small platform about six inches high that sits inside the bath and remains in place by suction feet; 2) a slatted bench that straddles the width of the bath and allows the user to remain seated whilst having a shower. The latter has proved very useful and has made washing my hair a less risky task as previously I had to crouch down in the bath and balance on my feet whilst trying to rest my elbows on my knees. There was always the possibility that I would rock backwards and fall into the bath and with my weakened arms could end up stuck there. So with my fleet of yellow rubber ducks and plastic battleships – bath time is fun again! 🙂

Another example of bathing related problems brought on by wasting shoulder muscles is trying to dry your own back when you cannot easily reach. It started to become a problem early in the year but I was able to just about struggle and get my arms up high enough to throw the towel over each shoulder and to drag the towel forward whilst bending down. But recently that became all but impossible as my shoulders have weakened so much. For a moment, standing there dripping wet, I couldn’t think how to overcome the problem and all I could think of on the spur of the moment was to throw the towel over my high back computer chair and sit in it whilst wriggling around and trying to dry my back. Another solution (which I got from the internet) is to slip into a lightweight fleece dressing gown. But why go for something so low tech when you can do what I’ve just done which is to buy about 20 hairdryers and stick them on the walls using Blu Tack. I just stand in front of them and twirl around – job done. Only trouble is I get a hell of a heat rash! 😀

A recent development with my weakening shoulders has been the gradual loss of being able to drink normally and I am now teetering on the edge of not being able to lift a mug of coffee to my lips. Very soon now I suspect I’ll loose that ability altogether – never to return. Thank goodness then for drinking straws which are starting to become a permanent fixture with my drinks. Of course there is this silly childish urge to blow bubbles hehe…But the good thing about them is that they are saving me so much energy as it is far easier, more comfortable and safer drinking in this fashion. It has been getting so bad lately that my shoulders have been shaking with the effort of trying to lift and hold a mug. As my energy fades I have to think of ways to try and conserve it. Drinking straws are helping me do that. In fact I was thinking of taking an idea from pet care and basically just scaling it up a bit. I was wondering how feasible it would be to have a large bottle mounted upside down on the living room wall with a long tube hanging from it then I could take a sip whenever I felt like it just like a hamster drinking in it’s cage :D.

Sadly though I’m loosing the ability to support my arms – but then again I don’t see why I should have to, they’re old enough to look after themselves! About time they got a job, slackers! I keep saying to my left arm (the weakest) “stop hanging around and help your brother” :D.

When I sit down my arms are even less effective and the further I lean back the worse it gets. It has made eating quite difficult particularly as my left arm is now so weak that I cannot raise it up at all when resting on a table (I use swinging motions when standing up). So I have gradually lost the ability to coordinate the activities of both a knife and fork and I am slowly trying to master the art of eating with just my right arm. I’m actually getting quite adept at it now although it took some getting used to. Anything needing cutting up, like meat, is performed before I sit down to eat as that is the only way I can get the leverage. It’s also starting to become risky just carrying a plate full of food into the dining area as I cannot hold things for very long and my grip is growing weaker all the time. I’m just waiting for the day when my dinner decides it wants to take a close up look of the carpet. When I’m eating out I’m more conscious of the problems but I’ve been very fortunate to have good family and friends who are understanding and there to help. Nevertheless I cannot help but sit there with a combination of embarrassment and gratitude when people cut my food up.

Lying down is even worse and my arms are all but useless in this position which makes it very difficult to pull the duvet up or reposition myself. Lying on my side for any length of time is no longer a good idea as the weight of my body pushing down on wasted arms and shoulders soon causes them to ache. And should I start itching then it can take quite a while to manoeuvre my arms into position by finger walking. And these days my arms are of no use in helping me get out of bed either; all that effort is now being transferred to my legs and torso – my last refuge.

I’ve lost so much muscle tissue off my shoulders now – over a stone. Where has it gone I often wonder? I’m normally good and never loose things but this escapes me – literally! So if you happen to see a slab of what looks like bacon it probably belongs to me so please return it – there’s a reward!

Not being able to fold my arms at the elbows anymore when standing up means I have terrible trouble just putting trousers on in the morning. I know it sounds funny but I can assure you it isn’t (at least not at the time and especially if you have an appointment). But by applying my Wallace & Grommet mindset I think I may have solved the problem. Here’s what I do… Every night just before going to bed I place a pair of trousers in the deep freeze and leave them there overnight. In the morning when they’re solid I take them out and straighten them up and place them standing upright at the bottom of the stairs. I then run upstairs and jump off the top of the banisters straight into my perfectly formed trousers. Sounds risky I know but I’ve only missed once!! Just kidding, you know I’m joking, right? 😉

Failing that I have one other idea that may solve my dressing problems. I was thinking why even bother with clothes? Why not just wear body paint that looks like clothes? I could have a nice black suit painted on and that way I’ll always look smart and it won’t show up the dirt! Plus I’ll do away with all the washing and ironing. Don’t know why I never thought of that a long time ago, hehe…

For months now I’ve been able to get by in lightweight summer clothes i.e. shorts and short sleeved shirts but with autumn upon us I’ll have to start wearing heavier full length clothing and this is going to present all sorts of difficulties for me. I had an occasion to walk to the doctor’s surgery a few weeks ago and because it was early in the morning it was quite chilly out. So for the first time in months I put a jacket on. Only trouble was my arms are now so weak that I just don’t have the strength to pull the two halves together whilst I zip it up. Consequently I had to take the 40 minute walk with my jacket completely unbuttoned.

I started looking on the Internet for easy to wear clothing that would be suitable for disabled people living alone. Trouble is there isn’t much out there and when you do find something you have a limited choice of styles, colours and sizes all with large price tags. Fortunately, Linda, one of my two contacts with the MND Association called round recently and very kindly modified one of my new shirts so that it can now be done up using Velcro patches. But you would never know to look at it because the buttons have been cleverly sewn back onto the front. Thanks Linda!

I’ve already written quite a bit recently about the problems I’ve been having with my hands but in the past couple of weeks they have taken a turn for the worse. It seems that they are now starting to exhibit the same symptoms that my arms did earlier in the year which forced me to give up driving. They tend to paralyse when tired and can take a while to ‘recharge’. I had my first experience of this quite recently when trying to button up a shirt. My hands were so tired from taking a shower and drying myself that they just stopped working and I just could not force them to perform the intricate task of buttoning up my shirt. For the next couple of hours I had to walk around the house with my shirt completely unbuttoned. I thought I would try using a button hook but soon found that I just don’t have the energy or dexterity to manoeuvre it. For a while I was trying to get by using shirts that you put on like a pullover but my arms are so weak these days that I just cannot put one on over my head by myself.

The intermittent paralysis episodes I now experience are causing all sorts of problems. I have trouble holding a knife to butter bread for instance. To combat this I bought some large handled cutlery. I’m even loosing the ability to participate in that finest of English traditions: dunking a biscuit. Yup, my grip is so weak that I cannot even hold onto a biscuit for long before it slides between my fingers in its haste to become a submarine! And the same is true when I try to pick up a full box of cereals in the morning – I just cannot seem to get a firm grip anymore. I’ve now started to ask for all my weekly groceries, most particularly, bottles of milk and fruit juice cartons, to have their foil seals and plastic pull rings broken when delivered so that I don’t have to struggle and expend all my energy. Thank you, Jason!

A couple of weeks ago I got trapped outside my house! I had just come back from a walk around the estate when I found that I didn’t have the energy to raise my arm up to the lock on the front door. After several attempts I just about managed to reach it but the paralysis in my hands made holding and positioning the door key in the lock a difficult and time consuming operation. By the time I had managed this my hand was so weak I had no energy left to turn the key – not one iota! Unfortunately there was no one around to ask for help (being the middle of the afternoon and everyone at work) but five minutes or so later enough energy flowed back for me to just about turn the key while pressing up against the door. I’ve been experiencing similar problems these past couple of weeks standing on the other side of the door. I just don’t have the energy to reach the latch handle, grab hold of it, turn it and pull the door open. It has been very frustrating when people have called and I’ve had to keep them waiting several minutes whilst I struggle to open the door. Fortunately I have just had a visit from Adult Services who have fitted a new lock much lower down. Opening the door is much easier now. And to make turning the key easier I have bought a key turner which attaches to the key and offers a lot more leverage. In fact it can be pivoted so as to act like a crank handle. Like all the best ideas it is simple but very efficient.

As you will have noticed I’ve injected quite a few more then usual smiley emoticons this time round to lighten the mood. Don’t know why I’m smiling so much though as it’s all becoming quite worrying, but I’m still determined to enjoy life as much as possible because life is so precious…and so brief even at the best of times. But there’s no getting away from the fact that the paralysis is starting to cut deep into my daily activities and causing me to waste ever larger amounts of precious time performing them. And it cannot go on for too much longer before it becomes all but impossible. For these reasons I have recently made a request for NHS continuing care. It will require an assessment but that is based on health needs and is not financially means tested. The eligibility criteria I am told though are quite stringent so I have no idea at this stage if I will even qualify.

The trouble with this disease is that it is constantly evolving and moving the goal posts. No sooner have I thought of ways to overcome one problem then I am faced with new challenges as more nerve cells die or muscles waste, robbing me of strength and movement. I must admit that I am feeling rather tired lately and more then a little frustrated at not being able to do the things I’ve always done. Now that the disease is starting to affect my core abilities it is making life even more unpleasant. But no one said that this was going to be easy and all I can hope to do is manage it as best I can to try and preserve a reasonable quality of life.


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Here we go again. Another 100 days have passed and I have reached the next milestone! Phew! :-). It is now 300 days since I was diagnosed :D. As is the format I’ve chosen I shall recap on the previous 100 days first and finish up on some of the more recent news that didn’t fit into the flow of the last five blog entries.

Because of the nature of the disease I suspect that every 100 days will be filled with its own highs and lows, and that’s certainly true of these past few months. I’ve sort of come to terms now with being out of work and have started to focus my energies on some of the things that I never seemed to have time for. I’m also trying to prioritise things to match my dwindling abilities so that the things that require more upper or lower limb movement are completed first. Some of these are forward planning and solely for myself which I hope to reap the rewards of further down the line, whilst others are things I’ll bequeath when my time is through. I’ll write about these more in future blog entries. But the important point I’ve realised is in keeping yourself busy and to not allow your mind to dwell on negative thoughts, although I’m not entirely immune from that of course. For me the days simply fly by and it’s hard to believe that we are heading into autumn already.

Back in late June I had my second lung function test, my first being last October and a month before diagnosis. As weakening of the breathing muscles is a key factor in determining life expectancy, it is understandable that the doctors would want to keep a close eye on this and so regular monitoring is performed. In fact I have another appointment already scheduled for around November time. The test itself is basically a set of three inhale/exhales from which they take the best set of readings. The whole thing is over in a matter of minutes compared with the almost 1 hour of travel time by bus to the hospital (it used to take about 15 minutes by car). Of course the trouble with having repeat tests is the fear that the new results will not be as good as the previous set. When I asked the nurse/technician if my results looked okay she replied that they were the best set of results she’d seen all day. Of course I was the only person she’d seen all day, hehe… In truth they won’t discuss the details of the test; that is left to the Consultant Neurologist who I saw a couple of weeks later.

My four-monthly appointment with the Neurologist in early July was rather uneventful, thank goodness. He reviewed the findings of the lung function test and commented that although performance had deteriorated it was still impressive that I could shift over 4 litres of air through my lungs, particularly with all the weakness around my shoulders. He also reviewed all the blood test results I’d been having and commented that I seemed to have a high tolerance for Riluzole. We then talked about how the disease had so far been progressing in me and how it had remained predominantly in the upper limbs. What cheered me up a little was being told that the disease pattern which I was exhibiting was one which they (MND specialists) recognised (through historical observation) as progressing at a slower rate. Indeed I was told that in cases similar to my own the disease had been shown to stay in one area of the body for some time before moving on. This sort of rings true with what I’d been experiencing. My weight loss had plateaued during the spring and for most of the summer and although upper body strength continued to diminish it seemed to be contained within that area. So good news all round. Oh, one other thing. Just before leaving I took the opportunity to ask him about the Italian Lithium clinical trial that I had brought to his attention the last time we met. His answer was that he had discussed it with colleagues and that it was felt that the way in which the trial had been conducted was not good science. There was also a reluctance to proscribe something that can have undesirable side affects. I guess the answer came as little surprise as I’d discovered from reading about other people who had begun a course of treatment using both Lithium and Riluzole that there had not been any demonstrable improvement. In fact some people had come off the lithium because of side affects. It’s been rather quiet on the lithium front of late.

Having just said how tolerant I seem to be regarding Riluzole I’m now going to contradict myself. At the most recent monthly visit with my GP last month we reviewed the results of the latest 3-monthly liver function test. Two of the three tests performed on the blood sample came back okay but the Bilirubin test came back higher then expected. Elevated levels of Bilirubin are a consequence of taking Riluzole but you don’t want them to be too high. I’ve noticed lately that bruises I get from having needles stuck in me or from accidents are taking longer to heal. The skin stays yellow far longer then I can ever recall. I suspect that it may be due to the higher then normal levels of Bilirubin in my system. I’ll have to ask my GP. I am scheduled for a re-test next week. This is not the first time I’ve had elevated Bilirubin levels. It happened early in the year but a re-test came back normal so I’m hoping the same will be true this time and that it was just a blip on the radar. Fingers crossed. The blood test is scheduled to coincide with the next visit to my doctor later the same week. So when I see my doctor the first thing I’ll ask her is “how’s Billy?” “Who’s Billy?” she’ll say. “You know, that guy you went to medical school with – Billy Rhubin” :D.

I’ve sold my car! Well actually I sold it back at the beginning of July. Initially I had tried selling it a few weeks after I stopped driving but got no response. For a while I just lost interest and as the weeks rolled by the car started to become a permanent fixture of the driveway. One day when I was trying to wash it (no easy thing when even the act of lifting a sponge soaked in water is a struggle) reality kicked in and I thought ‘why am I still doing this when I’ll never be able to drive it again?’ I guess it’s sometimes hard to let go of a part of your life that has been with you for so long. And that’s what MND is all about…a constant series of losses and how we deal with them. Shortly afterwards I re-advertised the car and sold it on the day the advert expired! I felt a bit upset seeing my car pull away from the house with it’s new owner – silly really as it’s only a piece of metal, glass and plastic. But it is what it represents more then anything…closure.

Being able to keep in touch with family and friends, to participate in social events, and to not feel isolated and alone is an important part of maintaining your will to survive when sometimes all else seems to be heading in a downwards spiral. Over the summer months I’ve been fortunate to have friends call round for coffee afternoons, take me out for launch and to allow me at least the illusion of a normal life by taking me out for the day so that I can take a few pictures. I am truly grateful for all the kindness that has been shown to me so I would like to offer my special thanks to Robin, Susie, Carry and Kim. I really do appreciate having the extra pair(s) of hands around to help me when I need it the most and I thank you all for your patience. Although there is nothing to stop me from jumping on a train and visiting places by myself I would struggle a lot now. I really need a personal assistant ;-).

I miss cycling a lot. On many occasions when we’ve had lovely sunny days I’ve found myself wishing so hard that I could get back in the saddle and go cycling down the country lanes enjoying the fresh air and to just feel as free as a bird. But taking one bad fall off the bike was enough for me. I now make do with walking but feel rather restricted in how far I can go. I’ve not attempted any more 12 mile treks but can still manage the 6 mile strolls without too much effort.

It was my birthday late last month and an opportunity for some family to get together for an enjoyable meal out :-). I’ve included a photo from my birthday and will upload some more at a later stage. My thanks go to those who sent cards and well-wishes. For those who didn’t – see me after class :D.

Opening a birthday card

Those storm clouds gathering on the horizon that I mentioned a hundred days ago are now hovering over my head. After months of being able to stabilise my weight I have recently started to loose weight again – not huge amounts but gradually. And this time it appears to be coming off my upper legs. In the days when I would do a lot of cycling and walking my upper leg muscles would be quite firm but now they are starting to become softer and their profile is showing signs of change. My legs do not feel quite so strong anymore although as I’ve already remarked I am still quite able to go for long walks and can lift myself up from a crouching position using just my legs. Nevertheless I believe that the muscles have started to atrophy and all I can hope is that it is a very slow progression. I’ve tried so hard to maintain my independence with weakened upper limbs but am a little worried how I’ll manage when I start to loose functionality in my legs. Scary stuff.

Before I sign off I’ll leave with a ray of hope and what promises to be an interesting new development in the fight against MND. I think I may have mentioned before that I have a Google alert in place to notify me of any news stories breaking around the globe. A day never seems to pass without at least one story somewhere in the world coming to my attention. Most of the time it is just local online newspapers covering stories of charity events in aid of the disease, obituaries, or so and so knew someone who had the disease or is living with it. Now and again though it is something far more interesting to those of us battling the disease, and at the end of July one such news story broke and for the next few days I was bombarded with Google notifications as the announcement ricocheted around the world and the various news and scientific journals published their articles. Now I don’t usually comment on such stories here because the focus of this blog is just to record my own personal experiences of living with a life-limiting and little understood disease. There are plenty of other sites out there far better suited for scientific discussion and I’m hardly qualified anyway. There are already far too many amateur doctors on the internet. But I did just want to raise awareness of the announcement to all my family and friends because even the MND Association reported it as a huge advance.

For the fist time America scientists were able to take ordinary skin cells from people living with MND and transform them into motor neurone nerve cells. This will pave the way for developing new drugs that can be tested on human motor neurone nerve cells in the laboratory. Up until now animal models were I believe the only way to initially test new drug designs. Of course it will still be years away before anyone starts to see real benefits but nevertheless it sounds like a large piece of the jigsaw puzzle has just been flipped over. To a person like me being able to reprogram skin cells seems like the stuff of science fiction. We truly live in an age of wonders. For anyone interested I’ve included a link to the news story and the MND Association’s response at the bottom of this blog entry.


Links to research breakthrough

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