End of the road

This week saw the disease progress to a new level and has effectively ended my days as a motorist!

For some time now I’ve been experiencing a steady decline in upper limb strength and energy levels. Driving the car had become a tiresome task and although it is fitted with power steering it often didn’t feel like it. Manoeuvring the car in tight spaces was starting to become very energy intensive and would leave me feeling slightly weak afterwards. I’d had a steering wheel ball fitted a while back in an effort to prolong my ability to drive, and for a while it did seem to make driving easier and offer hope that I could stay independently mobile. However, more recently it had become obvious that this was only ever going to be a short term fix and I knew that this was going to be the last year I would ever drive a car myself.

Earlier in the week as I reversed the car off the drive and began to straighten up and pull away, my arms became so weak from the effort of turning the wheel that they effectively stopped working altogether and ceased to respond to my commands. The best I could manage was to move them tiny amounts albeit with a strange and uncomfortable sensation of resistance. But this left me in a predicament as the car’s engine was on and in first gear. The only reason I wasn’t moving was because I had one foot on the brake pedal whilst the other was holding the clutch pedal down. I was unable to stretch my left arm out enough to reach the gear lever to take it out of gear, whilst I was equally unable to reach out with my right arm to turn off the ignition! Quite frightening really as you can well imagine. Fortunately I was in a close not on a main road. Nevertheless I was still blocking the road and would eventually be preventing my neighbours from getting to work. It seemed that the more stressed I became the less my arms responded.

Well eventually some strength seeped back into my arms and I was able to guide the car very slowly over to a visitor’s parking bay and switch the engine off. But the whole stressful episode had left my arms so weak that I was unable to raise them up sufficiently to put the key in the lock of my front door, effectively locking me out of my own house for a while!

Fortunately I have a very good neighbour who was not only kind enough to park the car back on my driveway but was also able to give me a lift to work. And in the evening my boss kindly drove me home. Thank goodness for friends.

The whole frightful episode that morning had left me quite shaken as I had not experienced anything like it before. And to think that this is probably only a small foretaste of things to come. Gulp! It sends shivers down my spine just thinking about it.

I will take this as a serious warning. It would be foolhardy, reckless and downright irresponsible of me to continue driving now knowing full well that the disease has reached a point where my arms can be subject to these ‘paralysis attacks’ which deny me all control of my arms for a while. And as I’ve mentioned already this seems to be connected in some way to stress levels too. The more stressed I become the worse it seems to get.

I suspect that this little episode was closely related to all the energy I expend each morning just preparing for work. My upper arm and shoulder muscles (already quite badly atrophied) became so exhausted that they effectively shut down for a while. Obviously I now have little in the way of reserve energy and it would seem that energy replenishment now takes some time.

It’s all so frustrating. I had hoped to be able to get to the end of my working life fully mobile and maybe even get a couple of months or so of freedom to drive and visit places I’d not yet been to. Unfortunately I have fallen at the last hurdle – and so close too! Worryingly it was only four months ago that I was diagnosed although I had tests for several months prior to that, and had symptoms a few months prior to that. I wonder if this would be described as an aggressive form of the disease or is this just typical of the rate of spread? It was the one question I meant to ask the Neurologist recently and forgot.

The car is now sitting on the driveway awaiting its fate and it will sadden me to see it go. I’ve had the car since new, regularly maintained it, put much lower then average miles on it and never been let down by it. But because it is now coming up to nine years old it is worth a lot more to me then someone else – and yet it still looks new.

I’ve been driving since my college days when I was 17 (practically 30 years ago) so motoring has become an integral part of my adult life. Loosing that ability is in a strange way like loosing a part of myself – if that makes sense. Here in the industrialised West we are very much a mobile society and jumping into a car has become second nature to us all. I will miss the spontaneity of waking up on a weekend, peering through the curtains and seeing the sun shining and deciding on the spur of the moment to drive off down to the coast for a walk along the cliff tops at Lulworth, or to take a walk around the beautiful gardens at Wisley or any one of hundreds of other places. Or just simply to jump in the car and go visit family. Now my options have decreased and I will loose that door-to-door advantage that cars offer.

As a form of compensation (and bizarrely right at the moment I need it) Adult Services have (with my approval) now added me to the Hampshire County Council Disability Register. What this means is that I am now entitled to various concessions amongst which is free travel on the buses. So yesterday I applied at my local council offices for a free bus pass which I was able to use that evening to get home from work. From April the bus pass scheme goes nationwide so I will be able to use it anywhere in the country and not just in the borough. So at least I will have some way of getting around because without the car it will start to feel like my world is contracting.

I’m afraid that the disease has won this particular battle, but there will be others and it has not yet won the war. There might only be three wheels on my wagon these days but I’m still rolling along, singing a song… “those Cherokees are after me, they look mad, things look bad, but I’m singing a happy song. I’m singing a higgity, haggity, hoggety, high, my motto is never say die!” 😉

Just before I sign off I would like to wish all my dear family, friends, colleagues and fellow sufferers a very happy Easter.

Mark

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