The problem with Parkinson’s is that it hits you so hard and so quickly when the drugs wear off that you can feeling absolutely fine and really enjoying yourself and then all of a sudden the light switches off, the power goes on your left to shell, desperately trying to keep up with yourself as you failed to do anything that you aiming to do two minutes ago. It leaves you so vulnerable. You can’t predict it.

When you see a piece of seaweed on the seashore after the tide is gone out it’s lying there

Just lying there… Not doing anything basically because it can’t. It has no way of making making motion. Until the water comes back until the tide comes back in and then the seaweed picks up and swirls round in the walls looking beautiful. All of its tentacles come alive again and it looks as if it has its own path. Of course it doesn’t. Of course it’s at the mercy of the tide. But it’s in the sea for a while and while it’s there It seems to be free.

The drugs are a bit like that. They are the water. I am the seaweed. When the drugs are working I look like I’m free. I look like I’m in control. I look like I’m dancing. But when they run out, when I go off, I’m trapped inside this body my worst nightmare. Vulnerable. Unable to let you understand how awful it is.

And the worst bit is the realisation that my independence is not going to last forever…

It’s slipping away already and I can’t stand that. I just don’t know what to do with that knowledge. I don’t know how to let go. What do I do?

Normally this blog ends with a positive note, with me saying I will rise above whatever barrier is in my way. Not tonight. I can’t rise above this one. In fact the barrier I have toOvercome is that realisation. And that’s a biggie.


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