[& Determination]
2015/3
As mentioned previously, Dr Andrew Evans reviewed my history in May 2012. After only ten minutes he was able to conclude that the only diagnosis that could explain it all was one of Parkinson’s.
Marjorie and I both smiled when Andrew gave us his diagnosis – at last we had something to get our minds around. Not knowing had been a dreadful place to be for both of us
Andrew told us that his diagnosis would be confirmed if I responded well to Levodopa – he put me on a starting dose of Madopar, concluding that as any diagnosis had been delayed so long, the impact on my life quality warranted skipping consideration of any other medication regimen such as use of a dopamine agonist.
He also prescribed Amitriptyline and Clonazepam to ensure I would begin to sleep and to manage mood.
My response to these medications was text book. Sleep improved immediately. By the time we saw Andrew again six weeks later it was obvious to him that I was also beginning to respond to the Levodopa.
Andrew guided me through the usual titration process and within 6 – 8 months we had arrived at a level of medication that was (at the time) life changing.
Two particular aspects of my response to the disease process through this period are so important in terms of my current situation that I will address them in some detail here.
My need to find out all I could about PD, and local support availability
Marjorie and I were so relieved to know what we were dealing with that we both felt as though a great weight was lifted off us. Knowledge brought an opportunity to manage!
I set out to find out all I could about this disease that had been so damaging and life changing.
I had a burning need to do two things. Firstly to track down all means of assistance available to a “Parky” and a “Parky’s Carer” in our area. Secondly I needed to find out all I could about the disease itself and then to keep up with developments in research.
My GP had very little knowledge about any assistance available, but I was able to track down our wonderful Neurology Nurse Specialist for Parkinson’s. Two weeks after diagnosis we had a meeting with her.
She was struck by the significance of the manifestations of the PD at the time of diagnosis. Although my PD later proved to be relatively mild, and has responded almost ‘ideally’ to medication, because of the delayed diagnosis she was somewhat surprised by the level of rigidity and difficulty in movement, as well as the psychological manifestations with which I first presented to her. She has continued to be an amazing support and source of knowledge. We Parkys owe so much to her. Understandably, her knowledge around issues of living well with Parkinson’s Disease far exceeds that of GPs. She works with a Specialist in PD to clinically manage 250 public patients in the small North West area of Tasmania.
She introduced me to two other “Young at Heart” Parkys and together we established a social support group for our area. I became the Coordinator of the group which has been a wonderful instrument to reduce social isolation and improve the quality of life of its members.
I had a burning need to find out more about the non-movement aspects of my disease manifestation that had always been the most challenging for me. I found Dr McNamara’s book “The Cognitive Neuropsychiatry of Parkinson’s Disease”. Reading this book was very difficult for me. To grasp the implications of it involved re-reading passages over and over. The effort involved was in itself good therapy, but it also gave me insights into what I had been experiencing. I had many “aha” moments as I laboriously gained insights. I recognised that the deficits I had experienced over my time with PD were explained by the “Agentic Self” model McNamara proposed, and its degradation through the pre-frontal area damage inherent in PD progression. I will mention this book again later.
I am currently driving a project to establish a community based Tai Chi for Arthritis program in the area centred on my home town of Devonport. The ‘community’ involves a coalition of the Support Groups for Arthritis, Multiple Sclerosis and Parkinson’s working with one of the Community Houses. The Community House is providing the administrative input, and the cross-disease group involvement will not only assist more people, but also provide a critical mass giving us greater prospects of long term success. Two instructors have just completed their training accreditation. I have spoken to the State based Support Organisations and gained their support, as well as to the local support groups and we will be commencing classes within a couple of weeks. We are currently arranging for the prospective participants to be assessed by their Treating Doctors for suitability / necessary restrictions required etc. It is an exciting development.
In terms of my interest in research, I subscribe to a couple of websites that provide updates on the latest published research material and for the last 12 months or so, have been selecting uplifting research stories to present to our regional monthly Support Group meetings. This has been well received; our members are taken by the fact that a Parky is able to do this – it appears that they find both the information and the delivery of it by one of them inspirational.
Only nine months ago I learnt of Dr Norman Doidge’s publication “The Brain that Changes Itself”. This was a great moment in my awareness of what was possible for Parkinson’s. I will also return to this later.
How I beat my Parkinson's Disease 