D+1000

Who’s the daddy now, Mr Neurone? smile_regular

And Mr Neurone replies “you can be as cocky as you like because I’m still going to get you in the end” smile_devil

Oh smile_sad

Today (3rd August) marks the 1000th day since I was diagnosed with Motor Neurone Disease smile_party. It is indeed cause for celebration because back when I was first diagnosed I was none too sure whether I would still be around even a year later as I knew so very little about the disease and nobody could give me a clear answer. But here I am still rolling along and singing a song (of sorts), a bit worse for wear these days, but generally happy to be alive and trying to make the best of an ever worsening situation.

But oh my, how my life has changed in those 1000 days. This awful disease has turned my world upside down and forced me to go from a life of independence to one of complete dependence. It’s been a hell of a ride so far and at times I struggle to keep up, let alone stay one step ahead. And on the few occasions when I have dwelt on what has happened to me I feel an overwhelming sense of sadness and heartbreak at all the physical skills that I have lost and what they enabled me to do. The human body is a remarkable product of evolution when it is working properly – if only it would stay that way. But now after 1000 days of muscle weakening, wasting and paralysis I have become disengaged from the material world around me. I don’t touch anything anymore. I have become a passive observer: I talk to my computer, I watch my TV, I listen to music, I read off a screen. One thing’s for sure, I wish I’d backed myself up a few years ago before all this started. I could have done a full restore back to my normal self, ha ha.

In the time I’ve had this disease I’ve had to say goodbye to so many of the things that gave my life meaning and enjoyment and now they are nothing more than a distant memory. But hey ho, life goes on, just in a different form. And it is this ‘different form’ that I am now trying to adapt to. In a sense my world has now contracted down to a chair that I cannot even control myself so I now have to wait until people appear in my field of view rather than turn to greet them. At times it is incredibly frustrating, and although people can sympathise, I don’t think they can truly understand, any more than I could, unless faced with a similar situation. The trouble is my mind is still working flat out at 100% even though my body (at the muscular and motor control level) has just about given up the ghost, and the technology I use simply cannot keep up with me, hence the frustration.

I think that to coexist with something as devastating as MND you have to constantly reinvent yourself to suit the changing situation. I also believe that it is imperative to keep the mind fully occupied, and for me this has become a sort of defence mechanism shielding me from dwelling too much on what has happened to me. I’m also extremely grateful that it has so far not affected my voice (except in volume), although I’m sure there are some people who might wish it had whenever I’ve had to battle my case to get things done. But although it might not have made me popular at times I’ve had to do it or risk having to accept what I’m given or how I’m treated which isn’t always what I want. Had I not intervened in the ways that I have done since being diagnosed then I’m certain that things would have been very different… and far worse.

By far more than anything else it has been my legs and their gradually weakening ability to support my weight that has dominated these past few months. During the weeks leading up to my hospital admission I was getting very stressed at the mere thought of trying to stand up and walk the short distance between bathroom, bedroom and study. Every time I attempted it I could feel my legs complaining at the stress I was putting them under and it would often feel like they were about to collapse from underneath me at any moment. In a sense it was a relief to finally move out of that dangerous intermediate phase in which I was neither fully mobile or fully disabled. At least now I am removed from the fear of taking a nasty fall and suffering a terrible head injury.

My recent five-week stay at St Michael’s Hospice has perhaps given me a taste of things to come and if I was under any apprehension about visiting a hospice before then those fears have now been dispersed. It has been quite an experience for me (in a very positive way).

The other thing that has caused me no end of stress these past few months has been the continuing saga of trying to get an extension built and what it has cost me in terms of restricted movement whilst I wait. I think if I could do anything different at all, or at least pass on some advice to those newly diagnosed, it would be to start planning for severe disability straightaway. Don’t wait until the legs start showing signs of weakening because it can take an incredible amount of time to go through all the grant approval, planning and construction stages. I started flagging my concerns regarding mobility early last year and here we are in high summer the following year and I still have yet to get a single brick laid. Of course on the flip side of this I’m not sure how easy it would have been to get the Disabled Facilities Grant a year earlier when my legs seemed perfectly normal and I was able to walk quite a few miles each day.

Moving on from where I am now though and I am under no illusions that it is going to be easy. MND is a very complex disease that places severe demands on all those who are and will be caring for me in one capacity or another. My respiratory system is already weak and a year ago I was told that it was on the bottom end of okay. My breathing definitely feels weaker than it did a year ago but thankfully I can still breathe unassisted although at times it does feel like somebody is tightening a belt around my chest one notch at a time with each passing month. And as time goes by I’m going to be more and more at risk of chest infections and this can be potentially fatal so I will need to be very careful, particularly with the people I come into contact with.

This D+1000 post is the last of the D+ series. I feel that they have now achieved their aim which was to document all the changes, from the very early stages of the disease when I still had all my abilities, to a time when I would be fully dependent on others. As I am now at that stage I feel that there would be little point in continuing as that part of my story has now been told and what comes next is really more a case of learning to live with severe disability on a day by day basis. I feel that my regular calendar entries can serve me better in that respect. However, if I should be so fortunate to live another 1000 days then I daresay that I might be tempted to write a D+2000 post! In the meantime I will still continue with the yearly anniversary posts.

I made it ! Me, today! (Thanks Alli for taking the photo)

Mark

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D+900

The year is racing by! It’s springtime, we are approaching the end of April already, and another 100 day milestone arrives. I’ve now reached the 900th day since my diagnosis! smile_party In keeping with other recent D+ posts I’ll mark the occasion by taking a summarised look at my declining health since mid-January.

The last 100 days, probably more than any other, have had a significant and profound impact on my day-to-day quality of life. I have had to come to terms with living in a very restrictive environment which I have not been able to leave since the beginning of the year. This alone is hard on someone who was used to going walking and cycling during the evenings and weekends and driving the rest of the time. This year it really does feel like my world has contracted down to a tiny sphere consisting of just three rooms. With time a limited and precious commodity that I hate to see go to waste, I feel so very frustrated at times that I cannot get out, particularly now that springtime is here. There has been talk for some time now about having some ceiling tracking fitted at the top and bottom of the stairs that would enable me to be safely transferred between stairlift and wheelchair. Unfortunately things have stalled due to lack of funding and a reluctance now that my long-term situation looks more certain. My only hope for getting downstairs and out of the house in the foreseeable future is with the help of two carers instead of the usual one.

It can be a frightening thing experiencing the last of your strength ebb away and as the weeks passed my chances of being able to get off the bed at night unassisted to visit the bathroom diminished as my torso strength faded. The (reluctant) decision to use conveens was at first a way of eliminating the chance of having a serious fall in the night, but eventually became a necessity (unless I wished to have a stranger living in the house), as I am no longer able to leave the bed without help. It’s funny, in a strange way, how disease forces us to accept and adapt to change. There was a time much earlier on when this was first suggested, that I was completely against the idea, but now I just seem to have accepted (or at least resigned myself) that it is all part and parcel of living alone with MND.

This year has also seen me having to give up the last of my personal care. I tried to hang on to the last of my dignity for as long as I could but in the end the disease (of course) won out. It took a while to relax and feel comfortable with somebody else taking care of life’s most intimate and personal daily chores. At first I felt more than a little embarrassed that my body would betray me to this level denying me even this basic dignity but now it has just become part of my daily routine. I try not to think about it and instead concentrate on the day ahead.

My legs of course continue to weaken but amazingly I am still able to bear my own weight even if it is only for a few minutes. The real problem is standing up and for that I need the assistance of my carers otherwise I end up staying where I’m put. But once I am standing up and have my balance I can just about shuffle between the three rooms although there have been a couple of occasions now when it feels like my legs are just about to give way and I have to lean against the wall whilst my carer quickly gets the glide about chair so that I can sit in it and be pushed the rest of the way. I also have to be careful I don’t bump against anything whilst walking otherwise the impact will ricochet through my body upsetting my balance and threatening to topple me over, and it wouldn’t take much to do that these days. Nevertheless I continue to be surprised that I am still able to stand up at all. Back in January I thought I was on my last legs – literally!

My hands are for decoration only these days! The mere thought of wrapping my fingers around a pen, let alone writing my name is laughable. Making a fist of my hand is something I can no longer do myself. I have physiotherapy on my hands daily but it has become quite painful trying to fold the fingers at the joints. Strangely, I seem to fair better when I’m having a bath and my hands are submerged in water, I then seem to be able to flex the fingers more than I can in air. Perhaps my hands are turning into flippers! smile_regular

My neck muscles have weakened further. I lose track of the amount of times I have to say ‘head up’ each day as a reminder to my carers to lift my head up every time I go to sit on the bed, toilet, bath lift, perching stool etc. These days I can barely lift my head an inch or two above the pillow when I’m in bed and only then when it is slightly elevated. I wear my neck support for quite a few hours each day now.

The one surprise I’ve had to come to terms with this year has been a slowdown in my swallowing reflex. I’d been seeing a reduction in my appetite for some time and had put it down to reduced efficiency in my breathing system, but was still nonetheless surprised when I started to experience difficulty in eating certain kinds of food. It can be a bit distressing to find that food is building up at the back of your throat and not sliding down naturally but instead threatening to block off your breathing. I had visions that my days of eating normal food were drawing to a close and that I would be forced to eat everything in a semi-liquid form. But I’m pleased to say (he says touching the wood of his desk) that those early symptoms have so far not progressed any further and although it’s true to say that certain types of food do indeed present problems I have yet to find anything that is a complete no-no. My carers, bless them, have been coming up with some imaginative ways of allowing me to continue to eat the things that I enjoy, just in a different form.

My care package is about as stable as it can be at the moment which is an achievement in its own right I suppose, considering all the problems I’ve had in the past. The funny thing is it seems to have improved immeasurably since we significantly increased the hours. Now that I am on block hours it seems to suit everyone; the carers seem to prefer it as they are not being sent here, there and everywhere every hour, whilst I prefer it as I have more consistency in the people who are supporting me. Only the recent departure of Francesca as one of my main and regular carers has marred things.

And hanging over me like a dark cloud these past few months has been the uncertain outcome of my planning application and how long and drawn out an affair it turned out to be. What a relief it was when I was finally given the go-ahead! Now things are starting to move forward and I’m just hoping that I’ll be downstairs and able to make use of the garden this summer.

Fortunately the life critical stuff seems fairly stable at the moment. At least I’m not consciously aware of any further degradation in my breathing and for that I am very grateful. I do have to pause between sentences though when speaking and I cannot shout as loud as I used to. Also I can’t even sing along to the tunes on the radio any more, although some might say that’s no bad thing! smile_regular

So there we are, quite a few changes this time, but overall thanks to all the help and support I get I’ve been able to manage.

Mark

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D+800

In what seems like the blink of an eye another 100 day milestone arrives and it is time to celebrate 800 days since my diagnosis smile_party. The day-to-day stuff is now fully covered in the regular calendar updates so I thought all I’d do to mark the occasion is to summarise my declining health since October.

Scanning through my D+700 post reveals a lot of similarities with what I am currently experiencing, only more so. Mobility continues to decline as the motor neurones that connect to my leg muscles slowly die. My legs are certainly getting thinner where they join my body and I am now teetering on the edge of not being able to support my own weight, a truly frightening experience. The simple act of standing up from a chair has become one that I have to approach with great caution and try as much as possible to only do when there is somebody else around just in case my legs give way at the knees. Of course I have my panic alarm strapped to my ankle and that of course gives me some peace of mind but I would still much sooner not have to use it. Movement is now confined to either walking from my bedroom to the bathroom or from my study to the bathroom, or at a push walking to and from the stairlift to gain access to the living room. I think my days of being able to walk out of the house and into the passenger seat of a car are also over and I’m now seeking help on alternative ways of getting transferred into a car as the thought of being trapped in the house forevermore is depressing.

My torso strength has also been slowly fading away these past few months. I know this for a fact because it is getting harder and harder to catapult myself into an upright position on the edge of the bed. There have been a few occasions when I have been fearful of not succeeding, the results of which would be unthinkable! So getting up in the night to answer a call of nature is becoming increasingly stressful, and in the absence of a live-in carer (my choice) I’m having to consider some other alternatives, none of which do much for my dignity. But then again being realistic even with somebody here there will come a time when I need full on help with my most personal care.

Muscular aches and pains have been increasing in recent months too, partly I suppose from sitting in one location for too long during the day, and partly from being left alone in bed for too many hours without the ability to turn. Because the motor nerves in my upper body are in a far worse state than those below my waist I find that the only way I can move my upper body in bed is to try and pivot from my lower spine. Of course trying to swing a heavy body in this manner is not going to do my spine any good at all but sometimes it’s the only way to relieve the pressure on one part of my body after lying there for so long.

Skin irritation and the inability to give yourself a good scratch drive me up the wall at times. Just imagine for a moment how many times we subconsciously scratch ourselves throughout the day to remove an irritation. Now imagine not being able to reach the irritation and how long you could tolerate it. During the day I can sometimes (depending on where it is) improvise by using an adjacent piece of furniture or doorframe to rub up against much like a cat would. I’m sure to an outsider I probably look silly but when there is no one around you just have to work with what you have.

Rotational movement in my arms is really getting bad now. At times when my arms and hands are resting on my lap, such as when I’m dictating into my computer via the microphone, I can end up struggling for ages trying to get my hands into a position so that I can reach out and answer the phone or intercom. So to all my family and friends who come knocking at my door please be patient when you ring the bell. I’m not ignoring you, just struggling to get my arms into a position to respond!

I’m having real difficulty with my grip. In fact thinking about it the only thing I try to hang on to these days in a vain effort to maintain some dignity is toilet tissue. But even that is a nightmare as my hands tremble so much and refuse to close properly that inevitably I sometimes drop the tissue before I even get to use it. Trying to clench my fists is a real effort and although I have physiotherapy which may keep the muscles from seizing up altogether, I am still losing independent control of my hands. Most of the time these days they just sit there lying in my lap or propped up in an arm support.

In recent months I’ve lost the ability to type letters, e-mails or indeed this blog. The sheer effort required to propel my right arm across the keyboard so that I can hit various keys leaves me breathless before I’ve typed more than a few words. Thank goodness then for word recognition software which despite its faults is the only thing currently enabling me to use my computer for any length of time.

I’ve now fully adapted to being fed by somebody else. In the months following the September accident I’ve had to get used to being spoon and fork fed by somebody else. It was something I fought long and hard against, desperate to retain at least some semblance of independence until the cold harsh light of reality forced me to accept that I was never going to be able to keep it up and that I was only wasting precious energy and looking rather foolish with my head bent down so near to the plate. Now I feel much more relaxed about it even when out in public. It has become just another part of the life that I now lead.

But despite all the horrible things that are taking place there are still some aspects of me that the disease has either not touched yet or has progressed at a slower rate than I thought it might. My breathing for instance, already on the bottom end of safety seems to have plateaued for the time being much to my relief. The thought of having to wear a face mask at night just to breathe really does send chills down my spine. And my speech, despite lacking the volume it once had is perfectly legible so thankfully I’m still able to socialise and make my wishes known. And lastly I’m still able to eat normally and enjoy the pleasure of food although my appetite has diminished.

So that’s where I am with it all at the moment. I’m definitely starting to feel like I’m trapped in a body whose warranty has run out and there are no spare parts. It’s been a bit hard getting going this year. For most people the start of a new year is a time filled with optimism for the future and the things to look forward to as the year unfolds. But for myself I’m just seeing a further deterioration in my condition that will make life even more difficult for me than it already is.

Mark

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D+700

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’.

Mark

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D+600

It’s now 600 days since I was diagnosed 😀 and this last 100 have simply flown by faster than any other.

Regular visitors to the blog will have noticed a change in format over the last few months brought about by the increased activity required to document all the goings on lately. The change wasn’t justified last year as disease progression appeared to be having the greatest impact on my upper limbs and leaving me mostly functional in other respects. But now that I’m weakening all over and events are posted much sooner it has had the effect of diminishing the importance of these D+ posts, so although they’ll continue I don’t expect them to be the major posts they started as. It’s funny really as I never set out to post as frequently as I am lately but as sitting at the computer pushing buttons is one of the few things I can still do I might as well make it mean something and continue to try and raise awareness of this truly awful disease whilst I still have the energy.

Without doubt the global effects of MND are starting to manifest themselves in some quite frightening ways and their implications for the future at times fill me with dread. There are two distinct areas where the disease is now causing me great concern. The first is the steady decline shown over recent months of my respiratory system. I certainly don’t feel like I have the huff and puff that I used to have and it doesn’t take much physical exertion to leave me slightly breathless. The only good thing I can say is that it doesn’t appear to have gotten any worse just lately. I can at least get a good night’s rest and don’t get many headaches – certainly none that I wake up to. So that’s a good sign.

You would think perhaps that the ability to breathe would be the biggest worry I have but at the moment it hasn’t reached the life critical stage or indeed the need for intervention. My biggest worry right now is that my legs are ‘dying’. The muscle tissue in my upper legs is wasting away as the nerves that connect to them start to die off. My legs look thinner, it hurts a little when I get up, I feel less certain of my balance, and my legs generally feel a lot weaker in trying to hold me up. I live with the fear of falling over and being trapped helpless on the floor…or worse, falling down the stairs and really hurting myself. I feel frustrated on sunny days when I can no longer simply go for a walk as I would tire too quickly. I’m worried about losing access to whole areas of my own house and I’m starting to wonder if this will be the last year I am able to stand up. It worries me that I live alone with a disease that won’t allow the luxury of independent living.

The increased difficulties I’m now experiencing have meant taking a closer look at the house and deciding on ways to adapt it. Stairs are becoming the biggest challenge but an order placed for a stairlift should buy me some time. Further ahead will be more significant adaptations but will at least enable me to stay in my own home.

As the disease has progressed so too has my care package grown to accommodate it but at least I now have the added reassurance of someone close to hand for more of the day. The big change recently has been the gradual transition and eventual surrender of all personal care. It really does take some getting used to having someone else wash you and attend to your needs but fortunately I had some time to get to know my lovely carers before we got to this point so I actually (amazingly) feel quite comfortable with them doing it. It also helped by gradually introducing one aspect of my care at a time. With all this care and attention I’m receiving I feel quite pampered at times. And despite all the gloom and doom lately I have to say how wonderful my carers are. They have made life so much more bearable for me. They all go that extra mile and really do look after me in so many ways. Thank you girls…for everything. Without you life would be quite unpleasant by now.

I hope I don’t put a hex on it by saying that the one area that remains completely unaffected is the bulbar area. My ability to talk is completely normal, thank goodness as communication and making your needs known is such a crucial human skill. Despite losing some weight my appetite in general remains healthy – my carers will back me up on that one! I’m still able to chew and swallow normally, and long may it continue.

Mark

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The downward spiral

Over the past few months my health has continued to decline to a point where collectively the effects of muscle wasting, weakness, fatigue, paralysis and various aches and pains have made life a lot more difficult. What started off localised is now gradually becoming global. What started off as minor difficulties are now becoming major hurdles.

My weight has dropped off a little bit again despite a generally healthy appetite. For the first time in many years (and possibly most of my adult life) I have dropped below 10 stone. Weight loss seems to go in fits and starts and for the most part the best I can hope for is to try and stabilise it. It is very difficult to actually put it back on and even if I should succeed all I’ll really achieve is to substitute muscle bulk for body fat. Not a particularly good idea as it just means that my diminishing strength and energy will be insufficient to carry around all that extra weight, although there is the psychological benefit of feeling good about holding onto your weight. Having a little extra ‘blubber’ would at least stop me from feeling like a bag of bones around my upper body. Unfortunately the deterioration going on around my shoulder girdle where the collar bone/shoulder joints are is all too prominent. Depressingly it is starting to look like skin pulled tight over bone.

But it’s not just my shoulders that are visibly wasting. I must be losing a little around the shoulder blades too as it often feels like they are digging into me when I’m lying in bed. Turning onto my side also presents problems as my body weight then presses down on the shoulder joint which can become uncomfortable in a very short time and there is a fear that I will end up damaging the joint. My hands too are sadly wasting away. There are dips and depressions appearing all over but most noticeable between thumb and forefinger and in particular when I turn my hands on their side where the profile is no longer as I remember it. Even my legs look a little thinner here and there and I’ve started to notice it is taking a lot more effort to get up from a crouching position. In fact it is easier to get up when I am resting on one knee and using a nearby flat surface to support my arms on. As the months go by I am becoming ever more concerned about bending down for fear of not being able to get up again.

As the muscles throughout my body weaken it is having a subtle but noticeable effect on my ability to quickly compensate for changes in balance. I’ve noticed myself on more than one occasion starting to lean over in one direction before I consciously realise it and then having to quickly try to compensate. So far I’ve been lucky and haven’t yet taken a tumble. I’ve also become more wary of moving surfaces such as escalators and will avoid them where possible. Wet or slippery surfaces are also an increased hazard to me now so during the snowfall we had a while back I made sure I stayed safely indoors.

The loss of strength is bad enough but the steadily encroaching paralysis is worse and brings with it a lot of frustration – and a degree of fear over its long term implications. I’m finding it increasingly difficult to rotate my arms so controls that feature dials such as the dimmer switch on my lounge table light are a real struggle to operate. Even something as simple as trying to read the time on my wristwatch is becoming difficult as my arm will need to be twisted into a position (or rested on a flat surface) that allows me to see the watch face. Bedtime is becoming fun (although not in a nice way) as moving my arms whilst in a horizontal position is extremely difficult. For instance if I rest my hands on my legs and they slide off onto the mattress it is a devil of a job to position them back onto my legs as I cannot even raise them as much as a centimetre. However, if I don’t do it and then try to turn onto my side my arms will simply fall behind my back and become trapped. If I want to move my arms away from my body I have to adopt a snake-like movement (you know, the sort of patterns you see in the sand) but even that is starting to slip away and I am left with trying to move my whole body and dragging the motionless arm along with it. Immobile arms are particularly frustrating when I have an itch that needs scratching or have a need to reposition the duvet which may have slid off me after all the wriggling I need to do with my legs and torso. Getting off the bed in the morning is also becoming ‘interesting’ as I need to do a half-roll in one direction before rolling in the opposite direction and using momentum to swing my legs over the side and standing up – all with using my arms. Unfortunately my torso strength is also weakening. Oh dear…

Because my arms are not used to the same degree anymore there is a danger of the muscle tissue losing its suppleness and becoming stiff. This is particularly apparent when I wake up in the morning after the arms have been lying motionless for hours. Ever since I had a meeting with the physiotherapist not long after I was diagnosed I’ve been regularly exercising my arms by folding them and interlocking the fingers behind my head whilst lying in bed. But lately the paralysis has got so bad that I have almost lost the ability to fold my arms in this way. Concerned that my arm muscles would seize up I arranged to see my physiotherapist this week in the hope that she could work some of her voodoo magic on me. After examining my shoulders she seemed satisfied that there was still a lot of flexibility in them and was pleased to hear that I had been following her tips on exercising them. Because of the difficulties I’m now experiencing performing these exercises by myself I shall be handing them over to my carers. My physiotherapist will be instructing them in techniques where appropriate.

Place your hands on a table with the palms facing upwards. Now turn them over. Easy isn’t it? Well I’ve very recently started to lose that ability too. I notice it sometimes when I’m typing on my laptop with my right hand and glance sideways and notice that my left hand is lying trapped on the table with the fingers pointing upwards like an upturned beetle waving its legs in the air. Without physically getting up from my chair and dragging it with me and then repositioning it all I can do is sit there and make it twitch.

The combination of weakness and paralysis is impacting an ever greater number of everyday tasks. Just getting dressed for example has become quite time consuming as I have almost no strength and very little movement in my arms to allow me to put trousers and jumper on and has required some creative thinking on my part in using various pieces of furniture as dressing aids. They say that necessity is the mother of invention: how true, it’s amazing what you can do when you need to. The paralysis is so bad now that I’ve lost the ability in both arms to send out signals to make them bend at the elbow which makes it something of a challenge to pull my jumper down or pull trousers up or the belt tight. Of course I could wait for my carers to arrive in the morning and indeed I will have no choice but to relinquish some of these tasks before too long but at the moment it is still my personal battle with the disease to try and remain as independent as possible. It can be a fine line however striking the right balance between preserving independence/self-worth/dignity and saving enough energy to help me through the day.

Meal times have become particularly tiresome for me recently as I struggle to position my arms at the table in such a way as to enable me to hold onto a fork and pivot my arm so that I can deliver food to my mouth. Even so movement is extremely restricted which means I have to bend my head down low to the table which results in back ache. When there is a need to actually pick something up with my hands such as toast or a sandwich it can be quite an adventure chasing food around the plate as I struggle to find a way to get my fingers to hold on to it. Consequently meal times are taking longer and leaving me worn out. I should also add however that there are times when my hands prove too troublesome to waste much energy on and in these cases my carers will pick the food up and pass it too me. At lunchtime when there is no one around I have had to start asking for my lunch to be left on the table under cling film as after several near misses and one actual drop I was getting to the stage of not being able to reach into the fridge/freezer and get the plate out.

And in the bathroom just about every task related to personal care from shaving & washing to trimming nails & brushing teeth, and things that I won’t even go into here, are to varying degrees becoming ever more difficult. Some of these are borderline now and I’ve just started asking for help with them.

I’m slowly loosing the ability to write with a pen and paper. The precision motor control required to hold a pen and form the characters is slipping away. Just putting a few short words together in a greetings card and on the envelope is about my limit and even that is with repeated breaks. My handwriting is starting to resemble a dead spider dragged across the page. How long I wonder before I cannot even write my own name? Thank goodness then for computers which are increasingly become essential and central to my life and my ability to organise it, but sad too that all my physical abilities are being condensed down to pushing buttons. But even my typing speed is much slower these days. It’s very frustrating to have my mind race ahead of my ability to hit the keys.

Fatigue is something else that is making itself increasingly felt. I only have to do a little physical activity and I am feeling tired and worn out. An example of that is in the morning after I have expended energy freshening up, dressing and eating, I will then feel the need to sit down on the sofa and rest for a while before I start the day. Half way through the afternoon and I’m feeling tired again and so take another rest on the sofa. I’m also finding that my walking distance is diminishing and about 20 minutes without a rest is about my limit these days and even then I can feel that my breathing is laboured. My energy reserves are very low. Perhaps it’s no surprise then when I say how much I look forward to bedtime these days. It’s one of the few times when I can truly relax.

I’ve started to get aches and pains around the shoulder girdle. No surprise really I suppose as I only have to look in a mirror to see how far my shoulders have dropped. When I’m walking around with my arms hanging limply by my side it can feel like they’re about to fall out of the sockets! It’s a very uncomfortable feeling. Also of concern is the fact that my arms are so rigid and unresponsive that should I ever take a fall then I would fall like a felled tree. I would not be able to raise my arms to protect my face (as I know only too well from last year’s bicycle accident. By the end of the day my neck can ache quite badly. I suspect that some of this may be down to posture and sitting at a computer for too many hours a day. Occasionally I suffer from cramp in my feet as well. I had an episode of this a few weeks ago when lying in bed. It started in the toes of my right foot (causing them to curl up tight) then spread to the arch of the foot before moving to my left foot. It was quite painful and kept me awake. My ability to cough is growing weaker too. I’ve had a few choking instances at breakfast recently and not had much power to really cough or shift food that has become trapped. A portent of things to come?

I had intended to post this blog entry over the past weekend but then realised that it was Easter and because of the downbeat nature of this entry I decided to withhold it. Life really is starting to become quite difficult now and I’ve never felt so constantly tired in all my life. I keep trying to think of new ways of doing things for myself but I am gradually running out of ideas. I’m starting to think in terms of having a certain energy budget to spend each day. I have to give careful thought now on how best to spend that energy to ensure I get the best return. I’m therefore really grateful that I have a good team of carers looking after me because to be honest I am now past the point where I could ever completely look after myself and the scales are slowly but surely shifting towards a life of dependence.

Mark

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D+500

It’s now 500 days after diagnosis! 😀 Phew, made it. I’m half way to the big one-thousand! Will I still be around then? You betcha! (he says with fingers and everything else crossed). Actually day 500 was last Saturday but I’ve deliberately held back publication of this blog entry so that I could include updates on my latest hospital visits. But as is usual I’ll start with a recap of events occurring over the past 100 days.

I am pleased to say that my homecare package continues to run smoothly. Back at the beginning of February, Alison & Francesca were joined by a third main carer, a lady by the name of Ann, who (like Alison) brings with her experience of caring for people with MND. Ann is my senior (in years) carer and I jokingly tell them that I now have three generations of carers; the grandmother, the mother & the daughter :-). Ann is a very friendly and sociable person and was a good ‘fit’ for my personality from the word go. She’s also a good worker too. So now I have a core team of three main carers and no longer do I have all my eggs in one basket which means I also have a degree of cover between them should any of them be unavailable for one reason or another. An example of that was during the recent snowfall when it became impossible for one of my carers to get out to me. Disease of course does not discriminate between good and bad weather but it’s reassuring to know that my care package was robust enough to ensure continuity of service. And since my team of three has been in place there has been no need to introduce further new faces. I’m very lucky that I have such a nice team of people looking after me. I am particularly indebted to Alison & Francesca who have done so much to lift my spirits and keep me happy. They’ve brought me gifts, taken me shopping, accompanied me to the cinema and been out for walks with me. Nothing seems to be too much trouble for them and they do so much running about for me which often means giving up their own time, so girls if you’re reading this thank you so much for everything. It really is appreciated.

I’ve already written at length in the previous blog entry of all the work that Marion, my Adult Services Occupational Therapist has been organising on my behalf. But Chris, my Primary Care NHS OT has also been busy looking after me. Back in January she made arrangements with the Hampshire Fire Brigade to have them pay me a safety visit on the grounds that I was an ‘at risk’ case because of my progressive disability and the fact that I was here alone. Not long afterwards three burly young firemen pulled up outside the house in their fire truck one evening. Two of the guys walked around the house assessing each room for fire risks whilst the guy in charge gave me a chat about fire risks in the home. By the time they left I had three new smoke detectors fitted and a pile of leaflets to read. I had also made them aware of the nature of my disease so they could keep a note of it on their database in case of emergencies.

Something else that Chris has arranged for me to try out is a reading table. With a surface about 24” x 18” it is large enough to accommodate most coffee table size books even when they are spread open wide. The table surface can be inclined at an angle to aid reading but I found it hard to handle the books in this position so keep it flat. Because it’s quite low down (and really designed to enable people to read in bed) the only place to rest my arms is on my legs so to turn a page requires me to support my right arm with my left, hold onto the page and pivot. Recently I’ve been trying to plough my way through a large format book of landscape photography that I received as a Christmas present. I must say that separating and turning pages is now an incredibly slow and tiring task. I manage about 50 pages (25 page turns) before I’ve grown too exhausted. It’s easier to read magazines with their lightweight paper because I can then use a dimpled rubber thimble which gives sufficient traction to flip the page. All of this however is only ever going to be a short term solution before I need to come up with something else. It’s a real pity that eBook technology isn’t further ahead. What would make life so much easier would be to have an A4 or larger eBook reader with a high resolution colour screen. That way I could view all my coffee table books on a lightweight device without straining my arms.

More successful has been the adaptation I’ve had to one of the Ergo Rests I use to enable me to type on my computer. I have Richard from an organisation called REMAP to thank for this. Basically the adaptation involved removing the old arm support and replacing it with a much longer purpose built one which is now capable of supporting my whole forearm. This has the effect of raising up my right shoulder and is far more comfortable over prolonged periods. With the old one the support was only large enough to support my hand which meant my arm dropped down at the wrist bringing my shoulder with it. By the end of the day my shoulder was killing me and it was starting to look like my right shoulder was developing a permanent droop. Of course the Ergo Rest is actually designed to support the forearm but I have to use it as a combined hand/arm support as my wrists are so weak that without support my hands would just drag across the keyboard.

It’s hard to believe but it’s been a year already since I last sat behind the wheel of a car. How I miss the freedom it represented. And in a few days it will be a year since I gave up work. Time sure is flying by. But even more significant is the fact that anytime now it will have been two years since my first symptoms presented. Had I been Mr Unlucky and had the very aggressive form of MND it could all very well have been over in six months. But I would guess from my own rate of disease progression that I’m probably following an average or (fingers crossed) slightly slower path. MND affects each person in very different ways and each will experience it at different rates. Statistically (if these things are to be believed) it is said that average life expectancy with the most common form of MND (which is the one I’m told I have) is 2-5 years from onset. Of course we all hope to be a Mr Lucky where 10% of people beat the odds and go on to live considerably longer. Only time will tell.

My health continues to decline as the disease maintains its relentless progression. I was going to put a few words together in this blog entry but the range of symptoms and their effects on me are sufficient to warrant a more comprehensive description so that will be the subject of the next blog entry. Suffice it to say for now that the cumulative effect of two years of nerve decay and muscle wasting is really starting to make life difficult for me and is causing me some concern as I know that things cannot stay as they are for too much longer and I will have no choice but to relinquish more tasks. I feel so very tired and weak all the time. That’s what I notice most, particularly these past couple of months. It sometimes feels like all the life energy is seeping away from me. Goodness knows what I’ll be like should I survive another 500 days – I dread to think.

Over the past week I’ve been taking the first tentative steps (quite literally) in getting back to my regular walks around the housing estate. I enjoy walking especially as it has been one of the last outdoor physical activities I could still do on my own. But after months of inactivity staying mostly indoors hibernating through the winter months I was starting to get curious as to what my physical limitations might be. Francesca, my friend and carer accompanied me on my first walk of the year, a 30 minute stroll around the neighbourhood. But I found myself struggling for breath a little when trying to chat whilst walking. Since then I’ve been out a small number of times by myself; the first couple of walks lasting an hour long but I soon cut this back when my legs started feeling very weak and I became concerned if I could even make it back home without collapsing. My confidence took a battering as I’ve always had good strong legs and have been capable of walking and cycling many miles. But rather than let it beat me I just cut the duration of my walks back and made sure I rested along the way. So at the moment I take a 20 minute walk through the nearby field, rest for 10 minutes on a footpath bench and then take the walk home which lasts another 20 minutes. So far that seems a little better but I still don’t have the confidence to tackle the longer walks (especially on my own). And to think that last autumn I was regularly walking a 2 hour 6-mile route.

So are my weakened legs purely down to disease progression or is it partly attributable to leading a sedentary lifestyle and not getting enough exercise? I suspect it is a combination of factors. My legs are certainly showing signs of wasting but sitting at a computer for hours is not helping either. Although I don’t believe that exercise will cure the problem completely I am keeping my fingers crossed that it will at least have some beneficial effect.

For the most part I’ve been cocooned in the house these past few months snuggled up in the warmth. There’s been little incentive to actually want to go out, although I did feel a tremendous sense of frustration when we suffered our worst snowfall in years last month and I was unable to take advantage of it by going out and taking some pictures with my camera. I might very well have been snuggled up in the warm but it didn’t stop me from meeting people as these days there is a regular stream of visits from Occupational Therapists, the MND Association Visitor, District Nurse, REMAP engineer, Council workers and of course my carers. So I hardly feel lonely! But there have also been a couple of opportunities to meet up with my friends from Eli Lilly for pub lunches; once in mid February at the Queens Arms – a favourite location for us in the run up to leaving (and one that still serves particularly good food); and once, earlier this month at the Portsmouth Arms. Bill, Carry, as always it was good to see you both. Kim, Jane, it was especially nice to see you both after a long absence. Thanks to all of you for coming. Robin, it was great to meet up with you too. I enjoyed our afternoon chat.

And that brings us almost up to date again. Before I sign off let me just say a few things about my two recent hospital appointments. A week ago I was up at the Basingstoke & North Hants hospital for my latest lung function test. I found it noticeably more difficult (particularly on the exhale) then the previous one and therefore didn’t have a particularly high expectation of the test results when I met with my Consultant Neurologist for our 4-monthly appointment yesterday. Mind you I’d said the same thing last time and been proved wrong when the test results showed no change. Unfortunately my fears this time were confirmed. The results came back showing a significant drop in respiratory performance indicating that the breathing muscles are now being affected. Be that as it may it hasn’t yet affected my sleep although it could be only a matter of time. It’s harder for a person to breath when lying horizontal as we don’t have the assistance of gravity and depend on the muscles around the shoulder girdle. As these are wasting away in my case it will eventually make it hard to get a good night’s rest. In addition to asking me questions about any sleeping difficulties my Neurologist asked if I was getting headaches and how I felt in the mornings. Well I do get the occasional headache but I’ve been putting that down to spending too many hours sat looking at a computer screen because pushing buttons is one of the few remaining things I can do. I feel lethargic when I wake up in the morning and it takes me a while to get going.

Because of the significance of these results my Neurologist wants to arrange for me to have some further and more comprehensive tests performed down in Southampton where they are better equipped to care for people with MND. Should these tests confirm the accuracy of my last test and show further deterioration then I will be presented with some choices to make regarding treatment and how we move forward. In my case what we’re looking at is the possibility of some form of assisted ventilation during the nights to help ensure I get a good night’s rest, as well as preparation for assisted feeding. With a complex disease like MND timely intervention is often required if each symptom is to be managed effectively. So although some of these things may not be used straight away they still need to be considered whilst my body has the strength. I must admit that I was taken back a bit by the things we were discussing as I hadn’t realised I had reached that stage already. It will take me some time to consider the ramifications of the choices and I’ll only be able to do that after I’ve had a chance to discuss it with some of my health care team.

We also talked a little about the walking exercises I’ve just started up again and I explained about the weakness and slight difficulty in breathing I was experiencing whilst walking. I asked if exercise had been shown to have any impact on the disease i.e. could walking accelerate or slow down the disease progression? I was told that it has no effect and that I should still try to exercise as there were other health benefits.

So there we are, I’ve survived another hundred days but the accumulation of symptoms is reaching a point where life is becoming very difficult as the disease becomes more intrusive. This latest visit to the Neurologist has given me cause for concern and plenty to think about. I feel that it won’t be long before I need to make further adjustments in my lifestyle.

Before I go I’d like to say a big thank you to both Alison & Francesca who gave up their time to accompany me yesterday. Thanks girls, it was very much appreciated – as always.

Mark

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