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Making the most of what you have

17 July 2020

I must say that this Parkinson's thing is fascinating.

Whilst commonsense might dictate that I be depressed and worried about my future, thanks to the gradual decline in both physical and congnitive abilities that Parkinson's is inevitably going to produce, I must say that, at least right now, it is fascinating watching the progression of things.

One interesting observation is that the progression is far less linear and smooth than I thought it would be. Often things tend to progress in small steps which are quite apparent and seem to happen without warning.

A more recent change however, has been so insideous that I hadn't really noticed its effects until this week.

I find myself being woken of a morning by my muscles.

It is the weirdest of sensations.

Some time in the night, my muscles start twitching and that movement obviously gets progressively worse as the night goes by until I find myself awake -- almost shaken awake by the movement.

It's not the tremors that you might normally associate with Parkinson's however, it is instead a rapid twitching of the muscle fibres. The best way to describe it is like a bag full of snakes.

The effect is most pronounced in my calf and thigh muscles, although it does also affect my right shoulder at times.

The twitching is uncoordinated and therefore doesn't produce movement of the limbs themselves but looking at the muscles you'd swear that there was something under the skin moving around, as little groups of the fibers contract sporadically, rippling the skin.

Unfortunately, once the fibres start really getting active it can turn into very painful cramp so I have found it much safer to actually get up and start moving before that happens.

That's when the other annoying effect kicks in... slowness of movement. It really does feel like I'm trying to run in a swimming pool, with none of my muscles really responding too well to directions from the brain.

If these symptoms had come on suddenly I'd probably be phoning an ambulance and sweating with fear but, since they've been progressively worsening over a significant period of time, I'm used to it and it has become just an increasing inconvenience.

I don't know what's next on this fascinating journey but I know I do have the best seat on the bus to experience it all so I'll try to relate my observations in order that perhaps others can learn a little more about this affliction, lest it affect someone they know.

One good thing about this situation is that I get a reminder every morning that I should be living for the moment and that the words "carpe diem" should be foremost in my mind. I must not put off the experiences, the challenges and the fun that life offers because one day those opportunities will no longer be available to me.

That mindset is actually an incredibly empowering and cheering one. Unlike so many others, I don't have to be focused on preparing for old-age or the next 20 years, that burden is lifted from my shoulders. I feel more like a teenager with a need to make the most of every moment.

If that is to be my future... bring it on. I'd rather die doing something challenging, fun, exciting and perhaps a little dangerous than as a quivering mess in the corner of some non-descript room.

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