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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One Response to One year ago…

  1. Ziggy Rizz says:

    I hope that you are doing ok, and I think that it all goes to show that if everyone just stopped to listen to their bodies on occasion it may show you something that you may have otherwise missed. take care – Ziggs

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