I find when talking with other people about our respective experiences of living with Parkinson’s, we don’t need lots of words or explanations, we have a connection, a bond, brought about by our shared experiences, a shared understanding and a shared uncertainty about our futures. We rarely struggle to find words to describe our experiences to each other in a way we might struggle to explain Parkinson’s to someone who isn’t living with the condition. The nature of Parkinson’s with its unpredictable, diverse and at times bizarre range of symptoms can make it hard to explain and hard to understand.
Recently, a friend sent me a link to The Waterboy’s Song ‘Strange Boat’. ‘Strange’, he said, was perhaps the best description of life with Parkinson’s. I could relate to this immediately on so many levels and started to think about some of the ways in which Parkinson’s is ‘strange’.
Strange that everyone with Parkinson’s has different symptoms and different rates of progression.
Strange that some days I can write a few lines and other days, I can’t hold a pen properly.
Strange having a face that doesn’t accurately express my emotions.
Strange that whatever time I go to bed and however tired I am, I wake at 3.00am and rarely get back to sleep.
Strange that many people think Parkinson’s is an old person’s disease and that I’m too young to have it.
Strange that my symptoms are so much worse when I’m cold, tired, stressed or under time pressure.
Strange that the loss of one neurotransmitter (dopamine) can be responsible for such a wide range of symptoms.
Strange that Parkinson’s is classed as a movement disorder, when movement is only one of a whole diverse range of symptoms.
Strange that one side of my brain and therefore one side of my body is affected more than the other.
Strange that my jaw moves involuntarily, even when I’m not talking!