Parkinson’s & Me

This week is Parkinson’s Awareness Week so I feel like I should write something about my experiences of the condition.

The aspect of Parkinson’s that strikes me first is the difficulty of typing with the tremor in my right hand. It is especially bad first thing in the morning, which is when I often write. It has made writing a very physical activity for me. There is no smooth flow from thought to page. Each letter has to be fought for. Each word is a battle for control. Writing is both physically and mentally exhausting. Double letters are particularly annoying. Something about the action of tapping twice in quick succession sets off the tremor and I end up with “tappppping”. “Succession” is fine because that’s my left hand but I’m not happppy about any letters on the right hand side of the keyboard.

What is interesting to me is the relationship between Mind and Body. Thought and Action. Before Parkinson’s, I didn’t think about it much. I mean who would? If you want to tie your shoe laces, you just tie your shoe laces, don’t you. There is a smooth flow from Thought to Action. So smooth that Thought and Action appear to be one thing. But they are not. Parkinson’s has shown me that. Parkinson’s disrupts the flow between Thought and Action. Thinking about typing a letter “u” does not necessarily have that resilt.

Over time, with experiment and helpful advice, I have learned that my Mind and Body work together much more successfully when I am relaxed. Relaxation is the key. The more relaxed I am, the better the flow from Thought to Action. But I don’t mean spending my life with my feet up and a beer in hand watching re-runs of Come Dine With Me. That would be nice but I don’t think my family would support it as a life choice. And I would like to think that I can still have a useful social function of some kind. I am talking about a kind of active relaxation. Going about your daily business as usual, but without tension. Learning to move in as relaxed a way as possible. In harmony with the Body’s natural rhythm. Without stress. Which is not easy. Damn near impossible actually. Life does have a tendency to throw stressful situations into our path.

Like, you are just settling in to the next episode of Come Dine With Me and the phone rings. You know it’s probably just that nice lady again telling you about PPI claims but, you never know, it could be important and now there is that element of doubt in your mind – a tension that will not go away – so you are going to have to answer the phone. So you jump up. Forgetting the glass of beer by your foot which you knock over and now you have got to find a cloth to mop it up with so you go into the kitchen which disturbs the dog who was peacefully asleep in her basket but now wants to play, jumps up and catches the pan  you left on the worktop after lunch because you couldn’t be bothered to wash up straight away and now there are cold baked beans all over the kitchen flooooor and are dogs allowed to eat baked beans because Holly is giving it a go and you know that chocolate can kill dogs but what about baked beans? Suddenly your day is full of tension and, in my case, my right arm is shaking uncontrollably and is of no use in the major clear up effort which now needs to happen before the wife gets home.

We cannot avoid stressful situations but I am learning that we can choose how we react to them.

We can respond with tension, by trying to put up a barrier, a shield to protect us from the situation. In this scenario we fight the cause of the stress, attempt to overcome it, remove it from our lives. That way we stay in control. Keep to the path we are on. We do not allow outside forces to distract us from our goal. We stay on track. We stay strong. Determined. Resolute.

Which is pretty much how I used to be. If I set my mind to something ……… it got done. I took pride in my achievements. I set myself challenges. Which got more and more extreme. I liked the feeling of having to overcome the odds, of having stretched myself to my limits. It felt …….. glamorous.

And then I got Parkinson’s. Which is not a glamorous disease. You shake. You dribble. Your voice gets quieter. You lose facial expression. You pee yourself. Experience penile disfunction. Get bad breath. Have unpredictable bouts of debilitating fatigue. It’s not sexy. And you can’t fight it. Not with tension. You don’t have the strength any more. It is constant. No one has that sort of strength. You have to find another way.

So, Parkinson’s is teaching me that there is another option, a different response. Instead of trying to resist the stressful situation, you can choose to accept it and try to relax, go with the flow. See where it takes you. Of course, this means giving up an element of control. Which is difficult. But, the up side is that it means that you are embarking upon a journey which will be full of surprises and, as you are no longer in control, no longer responsible for the trip, you can relax and enjoy what happens. Plus, I am beginning to suspect that the element of control we thought we had was just an illusion anyway. I suspect that we are all on board a runaway train and the only element of control we truly have lies, not in our ability to control what happens to us in our lives, but in how we choose to react to it.

Life has given me Parkinson’s. I have decided to try and relax and enjoy it. I’ll let you know how it goes.

WARNING: BLATANT PLUG ALERT

If you would like to read more about my adventures with Parkinson’s, I draw your attention to the latest publication from Dark Mountain – a beautiful anthology of new writing which includes my short story “The Shaman’s Gift.” It is available from dark-mountain.net and I highly recommend it.