Spring conference

MNDA Spring Conference 2008 Brochure (cover)

 Yesterday I had the opportunity to attend a conference hosted by the Motor Neurone Disease Association (of Great Britain). Every year the Association hosts a series of spring conferences that are designed to provide people living with MND (and their carers) an opportunity to learn more about care and research whilst also enabling people to share their experiences of the disease and make new friends. 

Having personally been living with a diagnosis of MND for six months now and still busy gathering as much information as I can to build up a clearer picture in my own mind, I was keen to experience first hand what such a conference would be like. I have a fairly inquisitive mind and therefore I am not the sort of person who believes that ignorance is bliss. I am more of the opinion that knowledge is power and therefore I felt that I owe it to myself to find out as much as I possibly can so that I am in a better position to make informed choices as the disease progresses. Having said that I have no wish to make MND my life. I already have plenty of hobbies and interests to keep my mind and body active (as can be seen in my profile) and that is where I will devote the time I have remaining (along with my family) as I want to spend that time doing things that make me happy not sad. MND is just the disease that I am forced to live with. Nevertheless it is still my intention to keep a finger on the pulse of research and so that was the main driver for me today. It was also my first real opportunity to see the face of the MND Association and to meet face-to-face with some of the people actually out there at the coal face researching to eradicate this terrible disease. 

Our Venue: Crowne Plaza at Marlow

So yesterday morning at shortly after 9am I was collected from my home by two committee members from the North East Hants branch of the MNDA and driven to the Crowne Plaza hotel at Marlow. It’s just under an hour’s drive and we arrived in plenty of time to go through registration and be given our delegate packs and badges and to grab a drink before the conference started. As I sat there sipping my tea I was left in no doubt that this was a conference for MND. Scanning around the hallway I could see people moving about in their powered wheel chairs or walking on crutches, carers by their side. It’s always a bit distressing when you see someone who is further along the journey then yourself and in days gone by before I knew I had it myself I would see wheelchair bound people and feel sorry for them but now whenever I see such people I see a glimpse of my own probable future, one which I cannot walk away from. And at times it sends a shiver down the spine. 

Our Venue's Reception: Crowne Plaza at Marlow

The conference kicked off with an introduction by Dr Kevin Talbot of the University of Oxford on the recent Welcome Trust ‘Masterclass in Clinical Neuroscience’ which had been running on the three days prior to the Spring Conference. Apparently the format and structure of this special meeting had been designed in an unconventional way to deliberately stimulate discussion amongst the intentionally kept small number of researchers and clinicians. As the talk proceeded I found myself wishing I could take a few notes. I certainly had the opportunity as each table had plenty of writing materials, but I have difficulty writing and holding a pen for any length of time these days (which is why I prefer to use a computer). Unfortunately my memory isn’t so hot on remembering lots of medicals facts and figures either but in summary I think the conclusion to the talk was that if we are to make real progress in defeating this disease then more collaboration (between countries, the pharmaceutical industry, and the research establishment) will be required and that the focus should be on biomarkers, genetics and model systems. 

I found Dr Talbot to be a very articulate talker but also one who has that ability to talk at a level that we ordinary folk can understand. After the introductory talk there was an informal question & answer session in which a group of experts split up and worked their way around the tables thus giving everyone an opportunity to raise any questions they might have regarding the talk or research in general. We were fortunate to have Dr Talbot at our table and I took the opportunity to raise a question regarding the results of the Italian Clinical trial in which Riluzole and Lithium Carbonate were proscribed. Back in January there had been a lot of activity (and hope) on the Internet that the drug combination had dramatically decreased the disease progression. In fact some people were going as far as claiming that it had stopped it dead in its tracks. I had already brought all this to the attention of my own Neurologist who had said that he would look into it. But because I was not due another appointment for some time I was curious to find out what other people in the field thought. Dr Talbot’s opinion was that the science was flawed but nevertheless said that a clinical trial with a larger sample size was being put forward for consideration late this year. 

To round off the first half of the conference there was an Ask the Expert Panel discussion in which anyone could raise questions that a member of the panel would attempt to ask. One interesting thing I did learn about that I had not heard of before was a form of hardware-assisted diaphragm stimulation. Not sure exactly what it was called now but basically I think the principle was a bit like that of a heart pacemaker but instead it would help to keep the diaphragm working through electrical stimulation. I’m not in need of anything like that at the moment as I am not aware of any breathing problems; in fact the results of my last lung efficiency test suggested that performance was above average. However it is something to be aware of as it is the weakening of the breathing muscles which often dictate life expectancy. So if a technology is being developed that can prolong life by stimulating the diaphragm muscle then that is something to keep in mind for when the time comes. From early test results that have been published it would seem that diaphragm stimulation is beneficial although it is important to understand that it does not prevent disease progression. 

One person raised the interesting question of whether or not MND was a modern day disease, perhaps a combination of lifestyle and environmental factors. The general thinking is that it has probably been with mankind a very long time but because human life spans were typically much shorter in olden times then they are today (and MND is far more prevalent in the 50-70 year age range) people never lived long enough to get it. They were too busy trying to avoid being eaten by Sabre-tooth Tigers or trampled to death by Woolly Mammoths :-). 

One thing I could have mentioned myself but it only occurred to me today when I was writing this blog entry is the fact that in the ‘Google alerts’ I have set up to monitor stories on MND it is quite common to see stories about people with the disease who lead quite an athletic lifestyle – football being quite a common one. So I guess this raises the question of whether lifestyle and strenuous physical activity heighten your chances of getting the disease. Well I used to cycle a lot… 

MNDA Spring Conference 2008 Brochure

After a three-course lunch there was a ‘Care – Hints and Tips’ session in which everyone had an opportunity to share anything they had discovered that made living with MND that bit easier. The final session of the day was supposed to be a presentation on care but this was conspicuous by its absence. Instead there was a talk by Dr Brian Dickie, the MNDA’s own Director of Research Development who talked about research into care – words which are not normally used together. Like Dr Talbot I would say that he was a ‘people person’ and a natural speaker who explained things in non-technical terms. 

And that brought to a conclusion my first conference on MND. To think, if someone had told me a year ago that I would be attending a medical conference I would never have believed them. How strange life can be at times… So was it a good experience? Yes I’m glad that I went as it gave me a real opportunity to listen first hand to people who are genuinely trying to make a difference to people’s lives. I’m just grateful that there are such people out there. All neurological disorders are tough nuts to crack and with motor neurone disease you’re looking at tiny microscopic structures. A nerve cell is just 1/30 000th metre in diameter. This is biology on a different scale and is a far cry from being able to see and hold one of the major organs in your hand. No wonder why we cannot cure MND – we cannot even find the little blighters, they’re just too small!  

MNDA Spring Conference 2008 Brochure

The way I personally look at MND research and the way in which we are progressing is to use the analogy of a big 5000 piece puzzle. Now over the years some very dedicated men and women throughout the world have been able to turn over a few of the pieces and we’ve been able to see their colour and glimpse a fragment of the image but we still have no idea what the big picture is or how all the pieces lock together. Dr Brian Dickie used the analogy of trying to climb a huge mountain, whilst not being able to see the top because it was shrouded in mist, and having no idea of how to get up there. I guess either one works but the point remains the same – we still have a long way to go, but thankfully research activity in recent years has started to accelerate. Let’s just hope that trend not only continues but yields ‘real world’ results. We desperately need a major breakthrough. 

One thing I did notice whilst at the conference and ‘people watching’ was an absence of people who looked unhappy, distressed or depressed despite the severity of some of their disabilities. And that sort of bears out what I have read in the past that MND is not known for being responsible for depression unlike some other neurological diseases. Interesting! 

Before I sign off let me just say thank you to Coral and Linda for taking me to the conference and looking after me throughout the day! Very much appreciated ladies! 

Mark

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D+200

I have reached another milestone! It is now 200 days since I was diagnosed :D. Well actually it was yesterday, today is D+201. Unfortunately I’m a bit behind with my writing as yesterday I was struggling to catch up with an account of my experiences at the previous day’s MND conference. Writing is starting to consume quite a bit of my time but that’s only partly due to disease progression. The rest is down to being just plain fastidious and never happy with what I write so I am constantly editing and shaping it – that or I am just plain out of words and seeking inspiration! So here we are again and in a sense this is where it all started with my blog back at D+100 in February. Recently there was also a 6 month milestone but that was a special case. It is my intention to mark my progress with the ‘100 days’ series and see how far we can take it. So today we’ll have a 100 day stock take and I’ll round it off with some of the recent things that have occurred.

Those of you kind enough to have been following this blog from the beginning will know that the last 100 days have seen some quite significant changes in my life. I have given up driving as my arms have become so weak that I simply cannot turn the steering wheel (and by now probably the ignition key too). I have stopped work too, in part because of the growing disability and collapsing energy levels, but I choose to look at it as ‘early retirement’ – to make up for the one I’ll probably miss!

I’ve been slowly trying to come to terms with the loss of these two corner stones of adult life – and it’s not easy at times. I certainly miss the social interaction that working with a good group of people can bring. It can feel a bit isolated at times… Life without the car is also taking some adjustment. I really miss not being able to just jump in and drive off for the day with a coolbox and my camera. Now I have to plan ahead with any journeys I make and am at the mercy of public transport schedules and with fading strength I am limited in how much I can carry with me.

To combat these losses I have tried to constantly keep my mind and body active. I think the worst thing you can do is just give up and sit in an armchair brooding because all that will achieve is to waste the precious time that is left. So my mind is kept stimulated by working at my computer where a whole range of options are open to me, by reading (both fiction and non-fiction), and of course by writing. And whenever possible I’m out walking around the housing estate and local countryside getting some fresh air and exercise and just hoping that it will keep my muscle tissue as healthy as possible. The upshot of keeping myself totally absorbed in as many things as I can is that I don’t have time to dwell on my situation. And that’s one of the ways I fight this disease.

But there is no doubt that the disease is slowly creeping forward. I can no longer raise my left arm at all when sitting down and rely on my right arm to pick it up. And even when I am standing up I am unable to bend my left arm at the elbow, instead all that happens if I try is that my left shoulder rises up. The elbow joint is still very flexible as I exercise it everyday, but unfortunately the nerve cells that gave me the ability to move that arm in certain ways have died (although I can still swing the arm and use momentum). It’s just a dead weight half the time but only from the point of being unable to move it, not from the point of lack of feeling because MND does not really affect the senses. So I depend more and more on my right arm to perform everyday tasks but the big worry for me now is that arm too is slowly becoming harder to control. It can be quite a frightening experience at times if I overwork them and both arms become tired and sluggish. All I can do is take some small comfort in the fact that it does not appear to be too aggressive. From time to time I hear stories of people who pass away and yet were only diagnosed six or seven months earlier. So I have something to be grateful for I guess. Also (and trying to be a bit optimistic) I’ve learnt from a new book on the disease I’ve been reading (which I’ve just realised is written by Dr Talbot who I was talking to yesterday!) that it is believed that the rate of disease progression remains fairly stable throughout the illness. If that’s true then my current rate of progression is a good indicator of how quickly the disease will spread in my own case. I think this is something I’ll have to discuss with my Neurologist when I see him next.

I sometimes feel that all my abilities are gradually being peeled away like the layers of an onion and I wonder how much strength, how much movement and how much functionality I can loose before quality of life and my independence are significantly compromised. At least my weight is fairly stable at the moment although tiredness is a problem if I start to physically exert myself by using my arms too much, so general housework and looking after the garden are really becoming quite a challenge.

I’m still having monthly appointments with my GP and I’ve just had my first three-monthly liver function blood test which is required to monitor the effects that Riluzole may be having. I certainly haven’t been aware of any side effects in all the time I’ve been on it so I feel fairly confident of the results. After two more of these three-monthly tests I’ll be moving to a yearly test.

I’ve had a couple of specialist visits recently. The first was from a couple of folks from the Oxford Centre of Enablement who had been asked by my Adult Services contact to come and give me a couple of assessments; one for a mobile arm support (MAS) and another for using the computer (called an Assistive Technology Assessment). The mobile arm support is not mobile in the sense of being permanently attached to your arm but in the sense that you can detach it from one table and move it to another which could prove useful if you go out to eat although after seeing what looked like something that had come from the Wallace and Gromit school of engineering, perhaps not. It’s just too cumbersome although if you went to visit family then perhaps it would be okay – but not in a restaurant. Well after having this contraption bolted to the dining table, the counterbalance adjusted, and my arm waving around in the support cradle like a cork in the water as I tried to simulate eating a meal or using a keyboard (all of which felt really unnatural) it was decided that it was a bit premature for me to have a MAS. Apparently I’ve still got a lot more movement in my arms then they normally see so that is on hold until things worsen. The Assistive Technology Assessment didn’t prove too useful either as I had already come up with some solutions of my own that would enable me to continue to use a computer (at least in the short term). What I was looking for were ideas that would enable me to maintain a high level of productivity i.e. speed, but I saw nothing that would improve on what I was already using. I did see a lot of clever gadgets but they would all be very slow to use and take some getting used to. I suppose there will come a time when even having the ability to use a computer very slowly will be infinitely more preferable then not at all so I will no doubt have to revisit this again later on (much later please). I’ll document my own short term solutions to computer access in an upcoming blog entry next month.

The most recent visit I’ve had has been from a doctor who is a consultant in palliative care for the St Michael’s Hospice. She was made aware of my situation by my GP at one of the regular meetings they have at the surgery. The purpose of this visit was really just to meet up and get to know each other, have a chat about how I am coping, and for her to talk a little about the range of services and help that the hospice can provide which can be anything from a short stay at the hospice (symptom control), a day visit (day care) or a home visit by one of the community nurses. At the moment though she felt (as I do) that I already have an adequate care network in place and there was nothing extra that she could offer but of course that won’t always be the case and one day I may need their services if things get seriously bad. It’s certainly good to know that they are there for when I need them and that they are local too. She plans to contact me at regular monthly intervals so she can monitor my progress. I do feel quite lucky really in that I have a good care network in place without me having to do much but at the same time I guess that the real test will be how effective the care system is when I truly have need of physical help. At the moment it is mostly confined to monthly chats.

I’ve pretty much recovered now from my little bike accident; the bruises have almost faded away and the grazing too. At least one part of my body’s ability to repair itself works – if only the same were true for motor neurones. Unfortunately you only get the one set.

As for my mental wellbeing, well I still feel okay really. I can still have a laugh and a joke and not feel like I’m drowning in a sea of depression, but I am becoming consciously aware of the dark, brooding storm clouds that are starting to gather on the horizon. I need one of those giant land-based windmills to blow them away :-).

Mark

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First tumble

Well I suppose it had to happen sooner or later but this was not how I imagined it would be or indeed this soon. But then I only have myself to blame…

I’ve been quite a keen cyclist for the past seven years. I’m not what you would call a racing or mountain bike enthusiast, just an evenings and weekends fair weather cyclist. You know, the typical office worker trying to keep the weight down and the circulation up. And I guess that is why I got into it originally – as a way to try and keep fit and to combat the effects that a fairly sedentary lifestyle can bring. The ominous spectre of middle age was looming…

But what started out as something that I felt sort of compelled to do gradually over time turned into something that I really enjoyed and would look forward to. At one point I bought a little trip computer so I could see how many miles I was clocking up each week, trip etc. In the first summer I had it I managed to clock up just over a thousand miles! Back then I seemed to be out on my bike just about every day. In the evenings after work I would change into shorts and T-shirt and play ‘beat the clock’. I used to have a 12 mile circuit that would take me around the housing estate and out into the countryside past Manydown farm to the neighbouring village of Oakley. I would constantly try to shave a few seconds off each time until it got to the point where I felt fit to collapse when I arrived home. On the occasions that I wasn’t trying to beat my own record I would adopt a more leisurely pace. There is a riding school out by Oakley and whenever I cycled through the village I would pull over and stop just past the old traditional stone church and lean over the gate to the field where the horses grazed and wait for them to walk over and say hello. Well sometimes I would be there for ages. You know what it’s like yourself; once you get chatting to a horse you just can’t get away, they just have to tell you their life story. That or complain about the ever rising price of hay :-).

At the weekends I would set off with a full bottle of water and head off towards one of the nearby towns such as Alton, Alresford or Andover. We don’t have any mountains here in Hampshire but we have plenty of hills and although it might look fairly flat on a contour map I can assure you that when you are on a bike you know about it! Each year I would try and stretch myself that much further by increasing the number of miles cycled in a day. I eventually ‘maxed out’ at 70 miles which was a full day’s cycling and left me completely exhausted by the time I crawled home that hot summer’s day. It had been the only time when my energy levels had completely collapsed at one point and I had to take a long rest before carrying on. And boy did I sleep well that night!

More recently I tended to do it purely for the pleasure of being out in the fresh air and the joy of passing through charming little villages full of thatched cottages, duck ponds and stone bridges. What a wonderful stress-free way to spend a day in relative peace and quiet away from the traffic congested ‘A’ roads. And on a summer’s day there is nothing better then to be out cycling down the country lanes with the sun on my back, wind in my hair and a big silly grin on my face as I hurtle down the hills!

So here we are in May and fast approaching June. With driving becoming a distant memory and walking rather limiting in range I was starting to get the itch to get back in the saddle. I hadn’t been cycling since last summer and I was curious to see if I could still do it. I felt fairly confident because walking wasn’t really presenting any problems and if I could start cycling then it might provide indicators of how the disease is progressing – in fact very much like I do with my walking. The indicators that I would look at most would be how my legs were performing; whether I felt weak or whether I felt that they were about to stop working altogether, my overall stamina level and also how I was breathing; whether I was struggling to breath cycling up steep inclines, or whether I just felt extremely tired at the end of a ride. So I would carefully keep a watchful eye for these early indicators so that if anything did start to develop I would be able to alert my GP.

Another reason for wanting to push myself physically is that I believe it is good to keep the limbs moving to help combat the stiffness that can set in. Sure it’s tiring but better that then have muscle tissue that has grown so stiff that moving the limb even with help becomes either difficult or painful. And hopefully by trying to keep the muscle tissue supple I will be able to keep the cramp at bay. And I suppose another very real reason for doing it is because one day I may not be able to so and I want to make the most of the here and now as some day all I’ll have will be these memories of mobility to feed off.

So a week ago today after first struggling to get the garage door open (not easy when you cannot raise your arms very high), I dusted down the frame and pumped the tyres up on my trusty Saracen Traverse. I clipped the trip computer to its cradle on the handlebars and set off. With a clear blue sky, the sun shining and a gentle breeze blowing it felt good to be back in the saddle on such a wonderful day and without a care in the world. I started singing ‘two wheels on my wagon, and I’m still rolling along…’

To be on the safe side I decided that until I felt confident and safe enough I would stay off the roads and just stick to the cycle paths that thread their way through the housing estate. All was going well until I approached the field (not far from my home) which is on a steep incline and I made a fatal mistake but one which had become intuitive to me since I started cycling. I stood up to gain extra leverage and as I did so I leaned forward to remain in an upright vertical position – BIG mistake! My centre of gravity shifted and suddenly my arms bore the full weight of my body. Immediately my arms collapsed under the load and the bike and I parted company as gravity took over. I hit the ground hard but cannot remember exactly how because it all happened so fast. The first thing I was aware of was a pain in my chest and struggling for a few seconds to breath. I had hit my chin against the pathway too and in those first few seconds I just lay there trying to collect my thoughts as all sorts of horrible scenarios flashed through my mind. Had I broken any ribs, had I punctured a lung, had I lost any teeth? I nervously ran my tongue over my teeth – everything seemed okay, nothing missing and no taste of blood. I ran my hands across my ribs but there were no sudden pains and nothing felt abnormal. I looked around for evidence of blood but there was none. So nothing immediately visible except for some grazing on both knees, hands, chin and left cheek although I still had some pain in my chest from hitting the deck so hard. Phew!

So that brought my first cycle ride of the year to a very abrupt halt. All the walking I’d been doing lately had lulled me into a false sense of security. And although it hurt quite a bit at the time I had been fortunate that I had suffered no major damage. I had managed to walk away with superficial grazing and some bruising which is now slowly fading. I had some slight pain in my chest for a couple of days perhaps from some pulled muscles but everything is gradually getting back to normal – whatever that is these days. One thing’s for certain, it sure hurts hitting the ground! As children we seem to be forever taking tumbles and yet we just seem to bounce right back as if made of rubber. But the older we get the more ‘rigid’ and frail we become. Ouch! Wouldn’t want to repeat that again! Naughty arms!

So I took a tumble and no doubt it won’t be the last. With muscle wastage comes unpredictability: hands can suddenly loose their grip, arms can fail to remain in an upright position, feet can drop causing a person to trip, and legs can suddenly fail to support, leaving a person crumbled on the floor. I think when my legs start to show signs of failing I’ll have to go round the house and bubble-wrap all the hard edges :-).

Apart from the physical hurt I’m feeling a bit down because I really had hoped that the bike would allow me to extend my travel radius and get out into the countryside a bit more, at least long enough to be able to enjoy some of the summer. I was so looking forward to it but it doesn’t look very likely now as the risks involved are too high should my weight shift suddenly in a way that I cannot compensate for quickly enough such as going down a steep hill with all my weight leaning forward. If my arms collapsed then…well it doesn’t bear thinking about. At least this time I had the sense to keep to the cycle paths. I suppose I could fit extended reach stabilisers like some bizarre form of land-based catamaran :-).

And just think, had everything gone smoothly then in a month or two I would have been publishing a blog entry called ‘saddle up!’ instead of this one. Oh well such is life…

So it looks like I’ll live to fight another day or as James Bond said in one of the recent movies ‘Die Another Day’ ;-).

Mark

Keep on snapping! – A day in London

Back at the beginning of the week I had an opportunity to spend a day up in the Capital with a fellow ex-Lilly employee. Robin and I had discussed the idea a few weeks back at Bill’s retirement get-together and were both keen to spend some time devoted just to the pleasure of taking some pictures. I’d not spent any time purely on taking photographs since last August when I visited RHS Wisley and so with the weather generally improving each week I welcomed the idea. Indeed any opportunity to get away from the house these days now that I am unable to drive myself is to be grabbed with both hands so a date was set.

As I mentioned in my last weblog entry I have recently reached the half-year milestone. As a way of celebrating the occasion (and because I like treating myself occasionally and will use any excuse!) I decided to take advantage of a bank holiday special offer in my local photographic store and bought a new camera! Well I figured that just because I have a terminal illness doesn’t mean I should stop living :-). Anyway it was good timing really because Canon had just released the 450D (click here for a tour), a new entry-level digital single lens reflex (DSLR) camera that was a fourth generation successor to the 300D I had bought a couple of months prior to a holiday in Florida back in 2003. Now as we all know a lot can happen in the world of consumer electronics in just a few years and digital photography is no exception. But because of my growing disability I now find myself looking at a camera’s specification list from a different angle. So for instance the doubling of pixels (from 6 to 12 million in my case) will to some extent obviate the need to carry long telephoto lenses around as I’ll be able to selectively crop the image afterwards whilst still ending up with enough pixels should I wish to make a print. This is an over simplification and any serious photographers reading this may shake their head but for my needs it will have to suffice. Anyway by minimizing the need to carry long telephoto lenses around immediately gives me three important advantages: one is a reduction in the overall weight I have to carry around on my shoulder all day; the second is the combined camera body/lens weight becomes more manageable for my weakened arms; thirdly by reducing the number of lens changes out in the field I reduce the chances of actually dropping an expensive piece of glass!

Several other features that lend themselves to physical disabilities also had a strong influence on the purchasing decision: The camera body is extremely light (475g) and compact and quite nicely balanced. The 3 inch LCD monitor screen is now large enough to see a lot more detail without squinting – very useful if your eyesight is starting to deteriorate like mine. The standard zoom lens supplied is also very light and compact and has an image stabilisation feature built in which is invaluable if you cannot hold a camera steady for long.

So a 450D it was then and with my local camera store offering a nice price reduction plus a free camera bag that offered plenty of room for expansion it made it a hard offer to refuse. In fact it became even more enticing when I was able to use the vouchers I had been given as a leaving gift from Eli Lilly. So it became my present to myself, and a very nice one too! I think the salesperson was amazed at how quickly he’d made a sale. I mean basically I just asked if they had any left in stock and said okay I’ll have one! Normally people ponder over these things at the counter as they push every button and turn every dial but I tend to do all my research well in advance so by the time I get to a shop I already know what I want. Besides I’ve been using Canon equipment for something like 30 years.

Armed with a new camera Robin and I caught a 10am fast train to London on Monday which was packed with commuters. I sat there thinking how modern times had changed even a simple journey like this. Back when I was younger (and not so many years ago) people would sit quietly and perhaps just read a newspaper or paperback. Today however it is a bit like sitting in a busy office. Laptop computers are perched on the tables whilst people participate in online conferences, mobile phones are everywhere as people are engaged in group discussions, others are marking up reports whilst the ubiquitous iPods seem to be all part of the commuter dress code these days. Yes’ technology is changing us into an ‘online’ and ‘always on’ society. I wonder what it will be like in a few more decades?

Well I didn’t get too long to ponder the question as we arrived in London in less then an hour. Waterloo station is ideally placed to take advantage of a number of attractions almost straight away. So after leaving the station it was only a short walk to the London Eye situated on the very edge of the River Thames right next to County Hall. Out came the cameras and like a couple of dogs let off the lead we were off and running! Well I would have been except that my arms are becoming so weak and limited in their movement that it was a struggle just to get the camera out of it’s protective bag and place the strap around my neck (there was no way I was going to trust my hands to just hold a new camera, I wanted a safety net). Eventually after much struggling and some help I was good to go. So off we both went trying to acquire shots that probably just about everyone else had already captured since the day the London Eye was erected. I sometimes wonder how many millions of duplicate shots of the world’s tourist attractions there are and if they were laid out on a (very) large table would we be able to recognise our own? Why do we even bother attempting that which has already been achieved? Perhaps it is just a desire to say ‘I did it’ and to have our own personal memory. Of course if the shot includes family, friends or a loved one then the photo is already unique. But our shots (or at least mine) were pretty much standard fare but it still felt good to be out in the open and away from the confining walls of the house enjoying the fresh air and experiencing the moment.

Being as the London Eye is quite a tourist magnet it is therefore no surprise to see street entertainers congregate along the Embankment, some of which are quite entertaining and colourful. But I have no idea how some can pretend to be statues for so long. I couldn’t stand still for five minutes. I’m a fidget! Well one good thing I suppose is that you don’t need a fast shutter speed to capture them :-). Anyway we next headed off towards Westminster Bridge where I found it impossible to resist the clichéd shot of a London bus and Parliament in the background. Now I wonder how many times that one’s been done, hehe. Over on the other side of the Thames we grabbed some shots of Big Ben before making our way to a local supermarket to buy some food and drink and then sitting down on a stone wall over looking Parliament whilst we had our lunch. Again I struggled a bit here as I found it almost impossible to lift the bottle of drink to my lips without assistance. My arms are becoming so weak that even such tasks are starting to slip away from me. At home I wouldn’t have this problem as I can drink out of a smaller mug. I made a mental note to myself to always carry a drinking straw in future!

After lunch we took a walk over to Westminster Cathedral for a few outside shots before catching a tube train to Tower Hill where we spent an enjoyable time photographing Tower Bridge before walking across it and taking shots of some of the more recent buildings of architectural interest as well as the wonderful Hay’s Galleria. Time sure passes quickly in London and already it was late in the afternoon when we arrived at St. Paul’s Cathedral. Another tube train back to Westminster and we finished off the day taking photos of County Hall bathed in evening light. As I looked all around there were people in large numbers making the most of the lovely evening, happy children riding piggyback on their dad’s shoulders, passenger ferries doing a brisk trade along the Thames, pigeons in large flocks congregating around bins eager to gain any scraps. It was a lovely way to end the day. In fact we’d been blessed throughout the day with beautiful sunny weather and I was glad that I had decided to dress light in just a short sleeve shirt and shorts plus a cap to keep the sun off my face as I tend to burn easily. I suppose if I was being super critical I would say that we could have done with some nice fluffy white clouds to add interest to what was a blank featureless blue sky. But I was just grateful for a nice warm day.

A quick stroll back to Waterloo station and we were shortly on our way home again with flash cards full of pictures. I’d been up on my feet practically all day without any noticeable problems. My arms might be steadily getting worse but so far (touch wood) my legs still seem strong – surely a good sign.

As enjoyable as it was taking photographs I would also have to admit that it was far from easy. Just putting the strap over my head would often require help as I cannot lift my arms up very high. Hoisting the camera up to my eye required me to fall back on the tricks I’d learnt around the home by throwing or swinging my arms and using momentum and then bracing my arms against my chest for added support. Even when I did have the camera against my eye I would not be able to keep my arms upright for very long so didn’t have the luxury of spending long on compositions for fear of dropping the camera – and if it wasn’t for the strap I would have done on several occasions. And as for vertical photos, well I just couldn’t manage to get my arms to work holding the camera like that so all my photos are in the horizontal format. So in a place like London which is full of tall structures I really struggled to get the tops of the buildings in the frame and when my arms would run out of lifting ability I would end up bending backwards as far as I could without toppling over. The effect of this was that by the end of the day my lower spine was aching. One way to overcome all this bending backwards is to use something called an angle finder which is attached to the camera’s rear (optical) viewfinder and which bends the light path through 90 degrees. They’re often used in close up work where it is difficult to get your eye close to the ground. Maybe this is what I need.

So how did my new toy perform? Marvellous actually. For a camera that is at the bottom of the range it sure has a lot of features, most of which have yet to be explored – and I will have fun doing so. Two features really stand out for me and make me glad I bought it. The first is the excellent image stabilisation feature built into the lens which made it possible for me to obtain sharp pictures despite my unsteady hands at times. The second impressive feature is the lovely 3 inch view screen which made it so much easier to evaluate pictures without waiting to get home.

I have no idea how long I will be able to continue to take photos or how much use I’ll actually get out of this investment but the way I see it you cannot put a price on happiness and even if I only get a few months of joy it will still be more then I would have got without it.

So before I sign off let me just say thank you, Robin, for your companionship and for all your help throughout the day. I really appreciate it and hope that you enjoyed it as much as I did and hope that we can do something else before too long. My new photo-buddy :-).

And just like that the day was over. Sure, I ended up with a lot of shots very little different to every other tourist I suppose, but I still had an enjoyable day and that I think is the most important thing. But perhaps even more important than that is…keep on snapping!

I’ll upload a companion gallery of photos fairly soon.

Mark

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The first six months

I’ve reached the half-year milestone! 😀 It was six months ago today that I was diagnosed. I’ve been told that in some forms of the disease where it is particularly aggressive six months is about all you can expect. But here I am still feeling generally okay in myself apart from all the upper limb problems I’ve previously written about. I feel lucky that I am not one of those poor unfortunate people with an aggressive form of the disease. But six months ago I had no idea what shape I would be in today because at the time it had felt like my world had caved in and whatever future I had would be brief.

Of course a lot has happened. I’ve seen the disease start to spread into my hands, my energy levels begin to dwindle and my weight steadily fall to a point where I have now lost just over a stone in muscle tissue. I’ve also given up two of the corner stones of adult life: driving and work, both of which I miss. But I am lucky too because I have a care network in place for when I need it and get regular visits from the health care professionals so I am not alone with this.

And I still have a lot to be grateful for too. I still have my mobility for example and I’ve not yet become imprisoned in my own home. Okay, I’ve got a lot of problems in the upper limb area which are making life (and you can choose your own word) ‘difficult’, ‘interesting’ or ‘challenging’ for me, but I think that if you are resourceful and determined enough you can overcome some of the daily problems either by yourself and your own ingenuity or by acquiring suitable gadgets or getting help from the experts who’ve been dealing with these sorts of problems the longest.

The thing about this disease is that everybody’s experience, or journey if you like, is different. A health care professional who came to visit me this week told me of a man she knew of who had MND for 10 years and was still able to stand and move about. I’d not heard of that before so it gave me some hope that maybe I might also be lucky in this way. Well there is no harm in hoping and without hope what is there left?

After sitting here and reflecting back on these past months I realise that things could have been so much worse and that life is not so bad for me at the moment after all. I am slowly adjusting to this new way of living and am of the belief that it is imperative to keep both mind and body active and not to let yourself stagnate and just give up.

And on the subject of ‘active’ how did I celebrate today? By doing a spot of gardening! I’ve been looking out my front bay window for weeks now watching the grass grow ever taller and saying to myself that I really need to do something about it. A couple of weeks ago I attempted to cut the back lawn and tidy up the borders a little but that alone really exhausted me and left me with no energy to do anything else for a while. So I was in no hurry to tackle the front lawn which after months of neglect through the winter had started to show signs of weeds beginning to gain a foothold. So today with the sun shining in a clear blue sky and being lovely and warm I decided I could put it off no longer. Of course the first hurdle I have to overcome these days is trying to get the garage door open wide enough so I can get in and roll the lawnmower out. With limited strength and movement that is quite a struggle. Pushing the lawnmower doesn’t present too much difficulty at this stage – just point your legs in the right direction and use body weight to move forward. Where it does get difficult is emptying the grass box which I had to do about half a dozen times.

A neighbour’s Siamese cat befriended me a few months ago and now often trots over to see me and have his belly rubbed and his fur stroked. I can always hear him coming because he has a little bell affixed to his collar which he’s probably not too keen on as it makes stalking the birds hard! He’s quite a friendly cat once we got to know each other but at first he was a bit shy and would run away when he saw me. Well when he trotted over his afternoon I thought he was actually going to help me for once. I said ‘come on now, you pull up the weeds and I’ll mow the lawn’! But he wasn’t having any of it was he? He just wanted to sit there under a shrub and out of the sun and just watch all the work being down. Typical! Thousands of years of pandering to these four-legged fur balls and that’s what we get. I blame the Egyptians, they started it thousands of years ago by worshiping to them. Of course they got a taste of something they like and now they won’t let go. Lazy little devils! 🙂

And now here in the evening it is very calm and peaceful outside. Just birdsong. No traffic. The lawn is looking a lot tidier (for five minutes) but I kind of miss the long meadow grass that was starting to resemble a field of wheat blowing in the breeze. My little house on the prairie! I feel tired but take consolation in the fact that once again I didn’t let the disease beat me or dictate how I lead my life. And I’m going to go on fighting it because life is precious and worth fighting for. Lets see what the next six months bring.

Mark

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Out of reach

I stare up in frustration at the magazine perched on the shelf so tantalisingly close and yet so far out of reach. It might as well be on the other side of the world for all the difference it would make. Shopping like so many activities that form part of our normal everyday rituals has become something fraught with frustration as my upper limbs gradually succumb to the disease. Until fairly recently I would think nothing of raising an arm up to pick a book or a magazine off a shelf but now these tasks are beyond me and I’m either faced with having to continually ask people for help or just go without. Browsing is now becoming a thing of the past because it is just too much effort to keep asking people to pass something to me and then ask them to put it back if I’m not happy with it. It has given me a whole new appreciation of what it must be like if you are not very tall – how everything must seem so far out of reach because the world is designed to work best for people of average height and abilities. It is only when we don’t have or loose these attributes that we realise how ill equipped we are to deal with the world the way it is.

I was in a gift card shop recently looking for a birthday card. After scanning along the racks I realised that only about a third of the cards were accessible to me so straight away my choices were limited. The same thing is true when I go shopping for clothes. I find that quite often the racks are now at a height that prevents me from lifting the clothes hangers off the rack or even if I did manage to, knowing full well that it would be even harder to put them back. Part of the problem is an inability to move my arms far from my body, but coupled with that is the problem of muscle atrophy which means that as I steadily loose muscle bulk my strength fades away. I therefore have to be very careful what I take down from a shelf or risk dropping it as my arms are starting to become unpredictable in their ability to support a weight.

I often make a joke of the fact that because I am sometimes better at taking things down from a shelf then putting them back (especially books because they feel quite heavy to me now) it would be easy for someone to trace my steps through the town centre. All they would need to do is just follow the little pile of goods neatly piled on the floor by the shelves I’ve been browsing…just like a breadcrumb trail :-).

But it isn’t just stretching up but reaching out that causes problems. Until a few months ago when I reluctantly had to give up getting my own grocery shopping I would find it to be a real effort stretching across freezer cabinets to reach items stacked on the shelves at the back. And holding my arms out whilst reading a magazine is no longer possible because the strength has faded to such a degree that I need to crouch down in a newsagents when browsing a magazine so that I can rest it on my knees.

And of course the problems aren’t confined to shopping trips either. Most of the stretching and reaching actions are performed around the home. A simple task like hanging the washing out is now beyond me as I can neither pull the plastic sheath off the rotary line arms (which requires a lifting action) or raise the centre column to erect it (which requires strength) – and all that is before I even think about reaching up to peg the laundry on the line. The last time I was able to do this was last August so now clothes are dried indoors. And the list goes on of course. Just think of all the normal everyday activities we do without a single thought: reaching into a tall fridge/freezer, opening kitchen cupboards above work surfaces, reaching into a bathroom cabinet or standing by the kitchen sink and stretching over to operate the taps which now seem too far away from my body and require me to lean forward. Slowly I am becoming unable to interact with my own home.

A few weeks ago a light bulb blew on the landing at the top of the stairs and I was powerless to reach up and change it. I had to wait until someone called round to change it for me later in the day. I felt so helpless watching them effortlessly raise their arms up and replace the old bulb. It wasn’t so very long ago when I would have done the same but now all I can do is look on in frustration.

Personal care is another area that is increasingly becoming a challenge: washing and combing hair require me to crouch down lower into positions that help reduce the travel distance for my arms. Showering is made difficult by arms that are loosing their flexibility and thus their ability to reach into areas behind me. Pulling a jumper over my head requires me to either bend over the bed so I can drag it along the surface of the bed or bend down low to the floor. And so on…

Of course some of these tasks can be made simpler with the appropriate disability aid and I’ve started to take advantage of these as the need arises. For instance I’ve just bought (in my local Keep Able disability shop) a long reach bath sponge – basically a soft sponge on a long flexible plastic arm which is designed to make it easier to clean your back when you have limited flexibility in your arms. Adult Services (formally Social Services) have also kindly provided me with a one-step platform that I can kick around the kitchen floor which has given me another six inches of height – very useful when performing just about any activity around the kitchen that would normally require me to bend my arms (a function which is becoming increasingly difficult due to muscle stiffness).

Despite what seem to be trivial tasks to most other people all of these upper limb actions quickly wear me out as I am constantly fighting against muscles that don’t seem to want to move anymore and are growing progressively stiffer. It is a consequence of the upper motor neurones (literally up there in the brain) failing and it’s called spasticity. It’s when there is increased resistance by the muscle against normal movement. My experience of this has been steadily increasing over the months as my brain is gradually loosing the ability to ‘talk’ or send signals to certain muscle groups. Even now, right this minute, if I try to stretch my right arm outwards as if to take hold of the computer mouse I can feel this invisible force holding me back, keeping my arm close to the body. The more energy I pour into the effort the more it seems to resist. In the end other muscle groups come into play as my body compensates by moving forwards instead. But it is a most uncomfortable sensation fighting against muscles that refuse to ‘loosen up’ and to be honest quite scary at times if I stop to think about the paralysis that is slowly creeping forward. So I try not to think about it!!

One way in which I cope with reaching up to things and which I am increasingly depending on is momentum. Instead of gradually lifting an arm in a controlled movement which has become impossible for me I now rely on swinging motions to build up the energy to ‘leap towards’ a surface and then use the fingers to grasp. Sometimes I miss my target or underestimate the ‘swing’ needed which may require me to ‘finger walk’ the rest of the distance. Nevertheless it seems to work reasonably well at the moment although I do fear that I am turning into some bizarre form of windmill.

So momentum is what helps me to continue to reach out for things (although once my hand has reached something then strength or a lack of it becomes a deciding factor on whether or not I’ll actually be able to lift the item). An indirect consequence of all these baboon-like swinging motions is that they help maintain a level of flexibility and suppleness in the muscle tissue. Some months ago my community physiotherapist showed me how to perform a few simple arm movements that would help stave off the stiffness brought about by not using my arms properly and just letting them hang limply by my side. So now each day as I lay in bed I struggle to clasp my hands together behind my head and hold them there for long periods of time. Initially the muscles always feel stiff but after a while I can feel them loosening up. Similar exercises can be performed by sitting at a dining table and leaning forward with the arms stretched out before me. In both these examples I’ve given it is important to realise that they are not performed in such a way as to make you fight gravity. So in other words they are not performed standing up as this would no longer be possible for me. None of these exercises will return the strength I’ve lost, that is impossible because the muscles are wasting away. But by keeping what muscle tissue I have left as supple as possible will at least give me some flexibility so tasks like dressing can be made easier. It should also help prevent cramp.

Posture also has a direct bearing on how far I can move my arms. For instance if I am standing up I have a greater range of movement then when sitting down when my left arm in particular is almost immobilised and the only movement comes from my shoulder raising up to compensate for the lack of movement in my arm. And lying in a horizontal position such as in bed means that I have great difficulty moving my arms up as if to push back the duvet. In fact for moving around in bed I now depend more and more on legs and torso muscles to compensate.

With MND it is common to have the symptoms asymmetrically to start with. My left arm continues to weaken to a greater extent then my right arm (although that too is a lot worse then when I was diagnosed). Consequently tasks that require a coordinated effort between left and right arms such as eating a meal are becoming extremely difficult. In fact I now have to rest my left arm against the edge of the table whilst pivoting it and bringing my head down to reach the food. So mealtimes are ‘interesting’ and a bit uncomfortable in the presence of others. I’m due to have an assessment soon for a mobile arm support. We’ll see how that improves things. In the meantime I fight a never ending battle against an encroaching paralysis that continues to restrict the movement of my arms and one day much more…

And gradually with each passing week the world slips further…out of reach.

Mark

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