After I was diagnosed with Parkinson’s I did not know what it was all about. My neurologist at the time, turned his computer screen on his desk a bit so that I could see the screen. He showed me an image of what I later realized were the substantia nigra. He said that my neurons in this region normally produced dopamine, but as mine were dying off, I did not have enough dopamine in my blood stream. He would prescribe a dopamine supplement and the tremor in my left hand would go away. Whether this was actually what he explained to me I don’t know but I was not any wiser at that point. He did downplay the seriousness of the disease.
Dr Google to the Rescue
Like any good citizen I called in Dr Google. I found a lot of information it was overwhelming ar first – a lot of information was contradictory and there were the miracle cure vendors! I am a biomedical engineer and had worked in a large teaching hospital and was familiar with healthcare. I knew about clinical trials and how to use statistics. So it was interesting enough to read, but that would not be true for most people diagnosed with Parkinson’s.
Early on I serendipitously had discovered the Davis Phinney Foundation, and found that they had published a guide for living well with Parkinson’s. That caught my eye as I have learned that Parkinson’s was an awful disease.
As it was free I downloaded it and started to read it. It was a huge book I thought it was impossible to read. I initially focused on reading the Parkinson’s 101 chapter. By now I already had a much better knowledge of Parkinson’s and started to try and judge the usefulness of the information.
The Time Factor
I was still working at that time, so I spent whatever little free time I had on getting to know Parkinson’s but as a biomedical engineer I loved it.
I took a course on futurelearn.com called “good brain, bad brain” which led to a months long review of the brain, the nervous systems, cell physiology as well as DNA/RNA, the various pathways, etc. I was familiar with these topics at a 101 level but now I was looking at them anew at a graduate level, with specific reference to Parkinson’s.
I was also looking at the topic with my biomedical engineering glasses on – I was particularly interested in the feedback loops and systems engineering aspects that my medical colleagues refer to as homeostasis. Clearly, I was fascinated and was reading many research papers, this was time consuming as many early research papers describing the role of dopamine were in Germany and I found technical writing rather old-fashioned and hard to follow. A lot of research is in French but was ok.
Understanding the guide
At the same time I was slowly starting to understand how the guide was to be used. I discussed it with my family doctor, Dr Govindasmy. She was also from South Africa and we had worked at the same teaching hospital but at different times. So it was easy to talk to her. She was at the time part of a medical clinic called Inwell or Integrated Wellness Medical Clinic in Burnaby. The business model of the clinic did not really allow her to get involved in projects like implementing the evc guide for individual patients but the core concept that PD was a complex disease and they agreed that the multidisciplinary team approach fitted well with their concept of Integrated Wellness.
I enjoyed the discussion about integrated sickness vs integrated wellness, but it was small comfort I now “owned” my PD and was not getting anywhere.
We did develop a list of specialists with contact information as recommended by the evc guide. And she arranged appointments with several when there was a need.
Using the Forms
In the meantime I had printed the forms from the guide and started filling them out by hand. This turned out to be not such a good idea as my handwriting had deteriorated quite a bit (micrographia).
I suspect the guide assumes that you will have a caregiver or somebody who could look after the record keeping part. Most of the forms are rather static and only took some time initially to set up, but keeping records of medications and symptoms is a daily activity.
I switched from paper to setting up a series of spreadsheets on my phone. I was using a Windows phone at the time. Microsoft unfortunately discontinued their smartphone business, so I had to look at alternatives. Samsung seemed the best alternative.
Assessment of Progress
I could say that I had taken ownership of my disease, I had an in depth knowledge of the disease and my symptoms and that gave me a level of confidence that I was on top of my game and that knowledge in a way contributed to the goal that I was living well.
I since moved to Kiwanis and I have effectively come to a standstill with using the guide as the standard of practice for living well with Parkinson’s.
I have officially requested the adoption of the guide at Kiwanis and it was approved in principle but I have been unable to get anywhere with the implementation. My relentless push for doing things right has both delayed progress and will pay off in the end.
Where to Next
Currently we seem to in an unending discussion about whether I should self-administrate my medication as that was what I had apparently requested. I am maintaining that that is not correct, that you had said it was the solution. If it was the only way you could provide the necessary care, then I would consider it. But then we (i.e. the care team together with me, and my health advocate for major changes, need to have a discussion, as required by the Act and the final decision formally documented as adopted. In this example I would not have to falsely fill out a form where I request self administration but we would instead providing training and updating procedures.
When Dr Burns suggested a meeting, I immediately agreed and offered to provide an Action Plan (in point form) that would serve as a discussion document for the meeting. For the Action Plan I make the following assumptions:
- that you have read the outline description of the guide that I have provided so that we are talking about the same thing and not at cross purposes.
- Parkinson’s is the fastest growing neurodegenerative disease at the moment. While we have only two residents at the moment we have to come up with a solution that would work for potentially more people with Parkinson’s and who typically would not speak English well.
- Every complex disease that the LTC needs to implement would need to have a staff member assigned as the local champion of the standard of care. The local champion will work together with the disease standard champion who knows both the disease and the standard. This would typically be someone from the professional society involved in the disease, a standards committee from a university. In the case of Parkinson’s I would be happy to be the disease standard champion, if management approves of my involvement.
- A team or workgroup must be established to look at what already meets the requirements and what else needs to be done to meet the requirements of the Act (see also the post on Quality of Life) – for people with Parkinson’s there is a small window of opportunity to have some quality of life where one can still contribution and feel useful.