An afternoon with friends

Friday was a good day, a chance to put all my health worries on the back burner and return to a more familiar world. A few weeks ago I’d received an invite to an afternoon buffet meal to mark the retirement of my boss and good friend, Bill. Lunchtime farewell meals had become something of a fairly regular routine over the past year as people gradually left the company ahead of the site closure. But it looked like Bill intended to go in style and was determined to lay on something a bit special. A hyperlink in the email invite brought up a web page showing a vintage bus which was promised as our means of travel!

Well of course I jumped at the opportunity to see all my friends and colleagues once again including those who had left the company. Sure, it was only a month since I saw some of them but already I was starting to feel a little socially isolated from not seeing many people. I wanted to be around familiar faces once again and for at least one moment create the illusion that life was normal again.

So late Friday morning I was collected from home and chauffeured back to Eli Lilly for one last time. I’m so lucky to have good friends who are prepared to go out of their way like this for me, but at the same time it is so frustrating not being able to drive my own car anymore. I’m afraid that as time goes by my independence is slowly transforming into dependence, so I suppose I had better get used to it.

Walking back into the office and seeing my desk made me realise how much I had missed being there surrounded by the people I know. Funny thing about work; we hate it when we have it but miss it when it’s not there, or is it the people we miss? Probably a bit of both; I certainly enjoyed my work but it’s the company I miss more then anything now.

AEC Regent I - STL 441. 'Our bus' as depicted on the Cobham Bus Museum website

We all gathered at the front of what is known as ‘A’ building where a beautifully restored 1934 vintage bus (on loan from The London Bus Preservation Trust) had been parked. This was an ideal photo location as the building itself is of 1939 vintage, and so those of us who had brought our cameras along got busy taking snaps. In fact even our local newspaper had sent along a photographer and reporter to cover the event – and at very short notice too. I was really glad that I had decided to bring mine along although it was only at the last moment that I had decided to do so because of the problems I now have in holding anything to my eye. But in the end I thought that even if I wasn’t able to take any pictures then perhaps someone else might be able to take some on my behalf. And anyway this would most likely be the last time I would see all my friends and colleagues together so it was an opportunity not to be missed.

Well I was determined to at least have a go at getting some photos myself but trying to raise my arms up whilst holding a camera is becoming ever more difficult. My arms just don’t respond or move in the way they used to and this coupled with their unpredictable nature makes me very wary about lifting fragile or expensive things. Even getting a camera strap over my head is very difficult unless I bend right down and lower my head. Thankfully I had help with that this time. As digital SLRs go my old Canon 300D is quite a lightweight (although I have a hard time convincing my arms of that) but trying to keep it steady whilst holding it at eye level was quite a challenge. All my pictures now have to be taken in the horizontal format as I am unable to raise my right arm up to hold the camera in a vertical position. How frustrating that is at times! I upped the shutter speed to hopefully compensate for any camera shake knowing that this would be at the expense of depth of field. On hindsight (which is a wonderful thing) I should have bumped up the film speed slightly. Memo to myself – look into image stabilised lenses for hand held photos! Of course what I really need is a head cam or a hover cam!

Pictures taken, we all boarded the bus and headed off towards the Queens College Arms not far from Basingstoke where our buffet meal awaited us. Being the kid I still am (at heart) I rushed upstairs to get a grandstand view of the countryside as we trundled along at a leisurely pace – well that’s all that buses of this delicate age can manage. To think, the last time I was on a double-decker bus was when I was knee high to a grasshopper! And yes we did sing a few bars of ‘Where all going on a summer holiday’ – the temptation was too much to resist.

We had a lovely buffet meal but more importantly it was a great opportunity to see old friends once again and for me this was what made the afternoon so enjoyable. Time passed quickly as it so often does when you are in good company, and after another round of group photos gathered around the bus it was time to head off back to Eli Lilly where there was one more photo opportunity I wanted to take advantage of before saying goodbye – some group shots on the steps outside the main building.

So to all my dear friends, thank you for a lovely afternoon. It was great to see you all again. I’ve said all along that Lilly’s greatest asset is its people and I’ve been very lucky with the people I’ve worked with throughout my time there. I’m sure going to miss you folks but hope you’ll pass by here from time to time. To those of you about to leave I wish you good luck in the future.

Before signing off I would like to say a special thank you to Kim (my chauffeur for the day and personal assistant – who kept track of where my glasses and camera case were), Carry (my assistant photographer and waitress – who just couldn’t stop clicking once she found where the shutter release on my camera was) and Ron (2nd assistant photographer who helped out on all those hard to get photos at the end of the afternoon i.e. those with me in), and a big THANK YOU to Bill for arranging a unique and memorable afternoon. Nice one, Bill! That was the one day when it was okay to be a bus enthusiast, hehe… 🙂 Oh, nearly forgot and most important – enjoy your (semi) retirement – you’ve earned it!

I shall be uploading a companion gallery of photos before too long. Stay tuned!

Mark

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One year ago…

…Or thereabouts, and possibly even earlier. It’s hard to be precise now as I didn’t take the trouble to record the moment so I only have my memory to rely on. But it was in the early part of last year, right back at the beginning of spring (I think) that the first symptoms presented themselves. I was cleaning the outside of the living room bay window at the front of the house and reaching up to the top whilst holding a cloth and using circular motions to clean the glass. For some strange reason my right arm seemed to be growing tired very quickly, certainly far quicker then I could ever recall. There was no pain, no feeling of cramp, just a feeling of tiredness, a general lack of energy and a desire to rest my arm by my side. In fact it even felt a little like it was pulling itself back towards my body, not quickly but in a subtle sort of way.

Like everyone else’s story that I have read those first symptoms seemed rather trivial and I ignored them, and just put it down to getting older and maybe all part of reaching middle age, or perhaps because I had a desk-based job with a fairly sedentary lifestyle. Sure, I was a keen walker and enjoyed cycling during the warmer months but none of this helps develop upper body strength although it is of course good for circulation and general fitness. But the trouble with this disease is that it’s insidious. It creeps up on you and the early symptoms can and do appear rather trivial. You just have no idea of what they’re the beginning of. It’s like the tip of an iceberg; you see something trivial and you ignore it, but you don’t see the looming monster that’s below the surface and what it has the potential to become. And because it’s so trivial you tend to just shrug it off unless you’re the sort of person who goes running to the doctor for the slightest thing, and I’m not. I guess that was part of the problem. I’d been blessed with good health throughout my life and apart from the usual sort of ailments that young children seem to attract I had somehow managed to sail through life with hardly a cough or a sneeze. All this good health had lulled me into a false sense of security and a belief that for now at least I would remain fit and healthy. So I had become complacent about it and until last year it would have taken a lot to convince me that something was wrong.

So I ignored the first warning sign because in all other respects everything felt quite normal as I went about my daily routines. I was able to perform normal everyday lifting, stretching and reaching actions without any problems. But as we progressed through the springtime I began to notice other tasks that were starting to take more effort and beginning to impact on my consciousness. I think a lot of the time we just do routine tasks almost subconsciously. We’ve done them so many times before that we can almost do them with our eyes closed and it is only when something changes do we suddenly become aware of them. So I started to notice that it was taking more effort to erect the rotary washing line, that stretching my arms out whilst standing on a ladder to prune back a Chinese Wisteria was getting harder, and that painting more then a few panels of the garden fence with my arm stretched out and making up and down brush strokes was leaving me feeling tired. But it wasn’t just at home that I began to see these early signs and by late springtime I was finding that manual lifting operations such as carrying boxes of heavy documents at work were starting to feel heavier.

By summertime the signs had become more sinister when I started to notice on several occasions some trembling in my hands when having a meal. At this point it became obvious that something was not right and that I could not pretend otherwise any longer. Shortly afterwards at the start of August I made an appointment to see my local GP. Being the pessimist that I can be at times I was already thinking deep down inside that this was really something that I didn’t want to set in motion because I felt that once I did my life would never be the same again. And so it began… My first appointment consisted of various strength/resistance tests which confirmed that my left arm was now weaker then my right (rather strange considering it was my right arm that first presented symptoms). This was followed by a multitude of blood tests which didn’t reveal any clues. After consultation with other doctors at the practice I was referred to a Neurologist but it was some time before I got an appointment by which time my symptoms had noticeably gotten worse and I was starting to loose weight. After a series of physical examinations which had begun to reveal muscle wastage around my shoulders, the consultant arranged for me to have a series of tests both at Basingstoke and a more specialist centre down at Southampton. Over the course of the following month I had a further blood test, a lung test to check their efficiency and to determine if whatever I had was affecting them, an MRI test to check the condition of the nerves in my neck, a Nerve Conduction Study and an Electromyogram. It was only sometime later after I was diagnosed in November when I started to research the subject myself did I find out that all these tests were not to find out what I had but rather to rule out what I didn’t have because a diagnosis of MND is arrived at by elimination of everything else.

So did delaying an appointment with my GP make any difference? No, none whatsoever really, the outcome is already preordained, only the time span is in question (unless of course we have a significant medical breakthrough that can translate to a treatment and rolled out to patients in double-quick time). From the moment the nerve cells start to die the disease will inevitably spread. Even if by some luck they were able to detect the first neurones to die there would still be no way to prevent other neurones from dying. There is simply no known cure at this time. But an early diagnosis is still desirable because Riluzole, the only drug clinically proven to slow down the disease and approved for use can at least extend the quality time available by a few months which can in some circumstances make all the difference.

The spooky thing about this disease is that I probably had it for quite some time before those first symptoms presented themselves. I wonder how long it was? To think that in the (long?) time leading up to my awareness of it a silent war was being fought at the microscopic level as nerve cells began to die off. And the brain like some old fashioned telephone operator has been madly plugging in cables on a switchboard to make the connections so that the brain can continue to ‘talk’ to the muscle tissue throughout the body. And all this time it’s been going on, the brain has gone about its business not troubling me at a conscious level, but under the surface madly trying to find ways to get the signals through and keep me working normally. And I was completely oblivious to what was going on until the brain ran out of options and had no way of talking to a specific muscle which of course led to my first visible symptoms – muscle weakness in my shoulders. The brain is truly remarkable but even it has limitations but I am nevertheless amazed at how it can try to repair itself. The questions I find myself asking now are how many motor neurones have I lost already, how many do I loose each day, how many can you loose without noticeable loss of abilities, and how many are there in a human body? I guess I’m just one of those people with an appetite for knowledge. I just have a desire to know the answers, not that it will make any difference but it would still be nice to know. In my efforts to learn about the disease surfing the Web for answers I have yet to find any material that gives answers to these questions. Let’s just hope that these and other questions are answered soon.

Mark

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Two weeks later…

I’ve now embarked on the next chapter of my life! This is the one where I am unemployed, progressively becoming more disabled, terminally ill and unable to drive! So not a good chapter! :-(. Anyway life is what you make it… 😀

How quickly the time flies by. Here we are and already its been two weeks since my working life ended and I moved into early retirement (that’s the way I try to positively see it). It just doesn’t seem possible. But then I cast my mind back and realise how busy I’ve been and how many appointments I’ve had so perhaps it is no wonder that time seems to have slipped by almost unnoticed. Lately it seems that I’ve been having far more meetings then I ever did when I was at work. I think I need a holiday from my retirement!

All the health care professionals that are looking after me in one capacity or another were aware of my finishing date and so had arranged for themselves to pay visits during these first few weeks. Nothing strange there except that now they were free to call anytime during the day instead of straight after work or in the evenings. My first week kicked off with a visit from a lady Doctor who had called to perform an Environmental Controls Assessment. This is basically to see how technology can assist you in your daily activities so this will become particularly important as the disease progresses and mobility is impaired. Think of it in terms of an all-singing all-dancing remote control unit that can be used to control such things as switching lights and fans on and off, opening and closing the curtains, operating the TV, Hi-Fi and telephone, controlling the heating, opening doors and taking the dog for a walk (well maybe not that last one). But it soon became obvious that all the things the systems were capable of helping with were tasks that at present I had no difficulty performing. For instance, in my house light switches are fitted at waist level so I don’t have to struggle to raise my arms. Curtains are on wooden poles and slide freely when pulled from the bottom. My two cordless phones (one in the living room and one upstairs by my desk) have a hands-free mode so I can talk whilst doing other things. And of course home entertainment equipment already have their own remotes that would in any case offer a greater range of functions although I appreciate the desire to centralise everything lest you end up with a bed covered in remotes. In conclusion it was decided that it would be premature to start installing the various control units at this time so I guess I’ll be assessed again at some (hopefully far off) future time when I start to loose mobility in my legs and need to control things from a single location.

The following day I had a visit from my MND Association visitor. She calls round on a monthly basis and is my link with the MND Association. It was really just a chance to chat and to discuss any issues I might have had (which I didn’t). She told me that she had just come straight from an MNDA meeting where my name was mentioned and would I like to come along next week to the AGM where a guest speaker from head office was due to give a talk on current research into the disease? Well I jumped at the opportunity not because I’m a fan of AGM’s but because it would give me a chance to finally hear first hand what the state of research is. Up till now all my knowledge on the subject had been gathered through endless hours of researching the Internet so an opportunity to hear it direct from the charity that does so much to care for people with the disease in this country was not to be passed up.

The next day I had an unscheduled visit from a nurse and a student nurse who just suddenly turned up at my door wanting to perform an assessment for continuing care on behalf of the NHS. If I qualify then it means that my care costs will be met by the NHS Primary Care Trust. Considering how much care can cost these days and how little income I now have I’m hoping that with a disease such as this I’ll qualify. The two people I met knew nothing about MND so I had to make sure that they were fully aware of the nature of the disease, how unpredictable it is and how each person’s experiences can be quite unique. I didn’t want them to just see me walking about and make the wrong assumptions based on what their eyes told them and just because in my case I have upper-limb onset. It felt quite strange me explaining to the nurses some of the things I had learnt about the disease plus of course going into my own personal experiences and difficulties.

The following Wednesday saw me catch a bus over to Chineham on the other side of town to attend the AGM for the North Hants branch of the MNDA. Of course the real attraction for me was the research talk. But I was also curious to meet other people who were living with the disease – yes, that’s how I am now describing it ‘living with MND’ not ‘dying from MND’. Ultimately it may not make a blind bit of difference except to help achieve a more positive attitude and you certainly need that if you are going to fight it. I guess my preconceptions before entering the community centre/church were of a group of people pulled together by a common disease and visibly showing it! But perhaps I should have taken a closer look in the mirror first and realised that until the later stages are reached it is quite possible to look for all intents quite normal from a cursory glance. Indeed if someone were to see me walking down the street they would not know that I have MND. But they most certainly would know I was at least disabled as soon as I tried to use my arms. So perhaps it should have come as no surprise to see so many ‘normal’ looking people at least to my untrained eyes. Of course not everyone there had the disease anyway. Some were family members, others were carers whilst yet more were from the NHS and Adult Services here for the talk and to gain some much needed background information on this uncommon disease. But as I scanned around the audience both looking and listening I began to notice the signs. I saw an elderly man with stiff straight arms being helped gingerly into his seat – an easy one to recognise as his symptoms mirrored my own. And over to my right I could hear a man talking slowly trying hard to form each word with a tongue that refused to cooperate. Of course not everyone was so ‘invisible’; one poor lady I saw had been suffering from MND for 15 years I believe, and sadly the disease had taken its toll robbing her of her mobility and confining her to a powered wheelchair with neck support. Nevertheless she had beaten the odds already by a considerable margin – no mean achievement. But I must admit that seeing her did shake me up a bit despite already being all too aware of what this highly destructive disease is capable of. But seeing someone ‘in the flesh’ suffer like this rather then just reading about the effects can be pretty scary when you have the disease yourself because it forces you to think about your own future – something I’m trying hard not to do as I want to enjoy the here and now whilst I still can. Sad to say that I didn’t really learn much from the talk itself that I hadn’t already found out myself in the past five months of scouring the Internet in search of hope and understanding. But nevertheless it gave me my first opportunity to meet some fellow sufferers and to know that I am not alone with it here in Basingstoke. And to round things off for the day I had my monthly meeting with my NHS Primary Care Occupational Therapist in the afternoon. Phew, busy day!

On Thursday afternoon I had a joint visit from another regular Occupational Therapist, this time from Adult Services (formally Social Services), and a lady who introduced herself as my Care Manager. So now at last I have been allocated one and she will be responsible for drawing up a care package for me. But for now my stubbornness and determination to lead life as independently as possible has won through yet again and I’ve declined all offers of help (much to their frustration I suspect) – but only for now. It’s not the first time I’ve received offers of help, in fact I’ve been getting them since not long after diagnosis. But this desire to remain independent is one of the ways I fight the disease and I’ve said since the beginning that I will lead life by my terms where possible and not have it dictated by the disease. So for me everyday that I am able to wash myself, dress myself and feed myself is a day of victory. Sure, I had to give up driving but a car is a killing machine and I won’t take risks with other people’s lives. Besides, I have some idea of what my own limitations are and as Clint Eastwood once said in a Dirty Harry film ‘A man’s got to know his limitations’! But ultimately I realise that MND is a disease that does not allow for the luxury of independent living and there is going to come a time when I will regrettably have to relinquish some of this independence.

I had my last appointment of the week early Friday morning. My GP just wanted a quick mental health check, just to make sure that I was okay emotionally after all the recent turmoil which started with giving up driving, then work and on top of that the worsening condition with my arms and hands. After a lengthy chat in which I attempted to give her a rundown of all the things I’d been doing to keep myself busy and my mind active she seemed convinced that I was handling things okay. In fact she remarked that I looked far better then the last time we met – an opinion shared by my Primary Care OT. I guess turning up at the surgery dressed only in Bermuda shorts, wearing flippers and a snorkel and clutching a large inflatable Dolphin might have had something to do with it! 🙂

So, apart from all the appointments what else have I been doing? Well, walking and lots of it actually. My arms and hands are steadily becoming as much use as a chocolate teapot but so far (touch wood) my legs remain strong and I’m trying to make the most of them whilst I still can. So practically everyday I’ve been out walking for an hour or more…sometimes a lot more. For instance on the first week I had this spur of the moment idea to walk to the village of Oakley. Now I’ve done this circuit many times over the past few years but it has always been on my bike quite often after work on a summers evening when it would take me about an hour to cycle the 12 miles (approx 19km). I was just curious to see how long it would take on foot! So off I went, not a care in the world, just wanting to enjoy the fresh air and the lovely sunny weather. It’s a nice time of the year for walking – not too hot. All the trees are either in blossom or starting to leaf. The daffodils are out, the tulips are out…not sure if all these things are supposed to be out at the same time, mind you. Perhaps it’s our mixed up environment. Personally I blame it on the green fly effect (okay, greenhouse if you want to spoil my fun). But certainly this is a beautiful time to be out in the fresh air – a chance for renewal as nature wakes up with colourful displays. In fact spring and autumn are my favourite seasons and whenever I get the chance I like to be hopping, skipping and a jumping down the country lanes – well not literally but you get the idea. So how did I do on my walk? Well I was back home in just under four hours. My legs still felt strong and not about to collapse from under me and my breathing was quite normal too – these are two of the disease indicators I monitor when out walking but so far it would seem that my breathing muscles are working normally. Ironically it was my shoulder joints that hurt the most. Normally my arms are supported on tables, desks, cushions or armrests all day. Having my arms dangling by my side for four hours put a lot of strain on an area that has already lost a lot of muscle tissue. In fact my left shoulder (the weakest) started to hurt after two hours and by the third hour they were both aching a lot. They ached all evening but after a very good night’s rest I felt fine again the next day.

So there we are, my first two weeks over and done already. I hope that the above has given you some idea of what life has been like for me as I’ve painted in as much detail as my weak hands allow – and that’s the biggest worry I have at the moment; my hands are getting quite bad, but I’ll cover that in more detail some other time. Apart from that how do I feel? Well, okay really. At the moment it doesn’t feel strange at all being home all the time. It feels more like I’ve just taken a couple of week’s holiday. I guess that as the weeks turn to a month or more I’ll start to wonder when I’m going back but at the moment everything is fine. Now that all the appointments are behind me I’ll have more chance to rest and do my own thing at my own pace. In fact that is one thing I really appreciate now – the ability to wake up much later and get up in my own time and for that I feel much better. I used to feel exhausted even before I left the house in the morning but now I am able to relax more and to slow the pace of life down.

My hands are really getting tired now and this weblog has taken quite a few hours to write so time to sign off. Just before I go let me thank those of you who have been kind enough to send emails or phoned me up for a chat these past couple of weeks. They have been very much appreciated.

Mark

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