From what I recall of those early days back in 2010, my focus was on how I was going to deal with my diagnosis and how I wanted to keep it a secret from immediate family and friends. I guess I had to first learn to accept it, stay in the present and avoid thinking of the images of the slow decay over time. Shortly after my consultation I received word that an uncle of mine was admitted to hospital and the prognosis was not favourable for his recovery. I went to visit him and was surprised to discover that he had been suffering from Parkinsons for a number of years. He was in the advanced stages of it (I have sometimes seen it categorised into 3 separate stages), with significant tremor, dyskinesia, (Dyskinesia is when one or multiple parts of the body make movements involuntarily, it can be a side effect of levodopa treatment.) inability to speak and general contorted posture on the bed. I found it difficult to associate what I was experiencing in those early days with what my uncle was battling with now. I think the hardest part for me was seeing what had been a very intelligent, gentle and honourable man stripped of his dignity and intelect. I think I would probably have had those same thoughts had I not been diagnosed with Parkinsons. Not visibly exhibiting any obvious signs of the condition, I avoided detection by his family, notably his two sons and daughter who were qualified doctors!
Looking back now, I think it was the non-physical symptoms that were more prevalent and causing me some concern. After many years of consideration I firmly believe that my personality was being affected adversely. I felt more and more that this character that woke up each morning was not me in so many ways. It took me a long time and probably only quite lately after having been weaned off a particular drug, Requip.
I have labeled the period 2012-2024, 'The Missing Years'.
I have to admit a little plagirism here, stealing the term from the great John Prine ( I encourage you to discover his music, a great storyteller, superb lyricist at capturing and evoking the trials of everday life). He penned a tune called 'Jesus, The Missing Years', which seeks to describe what Jesus may have been doing in the years from when he was a teenager up to his death and resurrection in his early 30's.
I will end today's entry now conscious that I have not been depicting this story in any rigid chronological order, more a random train of disorganised memories.
Today's tune is dedicated to the late John Prine, it's called 'Hello in There' , a poignant and thoughtful observation on growing old.