Not so long ago, it was decided to omit the word “disease” when referring to Parkinson’s, but there was already a little used Australian synonym – “Parkys”.
I wonder if the Parky Monster is somewhat benevolent, or perhaps chivalrous in a similar way to the personification of Death in Ingmar Bergman’s 1957 film classic “The Seventh Seal”. In this film, Death stalks a band of actors who are accompanied by a knight as they move through a medieval countryside which is ravaged by plague. The knight plays chess with Death who is gentlemanly but insists on winning, eventually taking all the actors (almost) as well as the game of chess. In a similar way, Parky Monster lets us know what to expect in a chivalrous way, but wins in the end.
My early reading of the needs of “People with Parkinson’s” emphasised the need to maintain self-esteem and to be creative as well as learning the symptoms that could be expected, many of which are symptoms of ageing exacerbated by Parkys (dry eyes and difficulty in swallowing for example). More lately, I have been pondering an “expected values” approach in which priority is given to avoiding the riskier activities that have the worst outcomes. A real life example would be the near certainty of serious injury following a ladder fall. Top of my list of situations to avoid would be incorrect medication and serious injury following a fall – both having serious outcomes and easily suffered. I include others due to frequent references in Parkys’ literature, notably depression and poor sleep patterns.
After diagnosis in 2008, my medical history, excluding Parkys is longer than most, with four major operations and a period of chemotherapy, all of which affected my approach to living with the Parky Monster, notably an inability to adopt and maintain a regular exercise regime.
There were, however, some improvements following a visit to our chiropractor who successfully treated my swinging arm syndrome and my tendency to an uneven gait, also the improvement following sessions with a speech therapist. Perhaps too, I should acknowledge the part that Parky Monster played in diagnosing the myeloma that led to chemotherapy treatment: introducing Stalevo into my suite of Parky medications caused diarrhoea which was hard to explain, but consequent pathology tests found the smouldering myeloma which was successfully treated with chemotherapy as it advanced.
“Behind every successful man is a successful woman” may be a chauvinistic and patronising catch phrase nowadays but it has a parallel in living with the Parky Monster: behind every (or nearly every) person with Parkys, is a carer who ever-increasingly has to draw on strength of character as well as physical strength. In our case, there was a steep learning curve as we tried to understand Parkys, the cumbersome nature of the health system and do foreboding things like seeking and finding a disability friendly house in a preferred location. There is all too little respite for the carer and what there is has to be diligently sought out.