7 May 2018
2018/1
It is now well over two and a half years since I was able to stop taking any Parkinson’s medication; it will be three years on the 17th July this year.
I recall a mental state in which I was completely caught up in the wonder of actually achieving my objective of beating my disease during the first months that followed. Some people expressed their concern that I might be in some sort of delusional state, which begs the question of me being able to function normally for the first time in over a decade without any Parkinson’s medication.
The discussion points following are not chronologically ordered; they are simply a collection of snippets of experiences post recovery.
Gaining greater awareness post recovery of the progression of my Parkinson’s functional deficits and their impacts on those most dear to me
I was able to visit with family and friends who had known me in the period before Parkinson’s began to impact my physical, emotional and cognitive functioning. It was wonderful to be able to be fully in the moment with them without a feeling of being distressed just trying to keep up with the conversation and being distracted by the bustle around me. As a result, I had previously largely withdrawn from gatherings of more than just a few people, finding them just too distressing.
Through such conversations I was able to establish that the deterioration had begun much earlier than previously thought – especially significant were the depression, anxiety and, sometimes, anger in those early stages.
It appears that some of these began decades before I was diagnosed – I now have a similar impression to that expressed by John Pepper of an onset of observable change that began earlier pre-diagnosis than would be conceded as possible by most medical experts. It is only with the benefit of hindsight of course that I can draw such a conclusion. Pre-diagnosis, all the earlier problems appeared to be independent of one another, and certainly not associated with Parkinson’s.
Throughout this time, feelings were mixed; the wonder of what I will refer to as “recovery” was attenuated with feelings of sadness as I began to recognise, with far greater clarity, the impact my changed function had had on my immediate and extended family. They had lived with me fleeing from a marriage and all the pain and anguish it engendered for all involved. They had also watched on as the negative effects of the disease became increasingly impactful. Most affected were my first wife Rosemary, my daughters, and my partner Marjorie. I largely missed out on a period of fifteen years in the lives of my extended family members including being a part of the developmental years of my grandchildren. For some time, I was really down on myself for having brought all that on them; of course, the disease progression had the major part to play in all of it. I now view this period with regret but no longer blame myself for it all.
It has been a happy time reconnecting, but heavily tinged with sadness all the same.
How I beat my Parkinson's Disease 