I very much appreciate your work in finding relief and even occasional cures for Parkinson’s Disease. I have Parkinson’s Disease and I am an engineer/scientist. I am concerned that some of those who have found cures or relief from their symptoms may not have actually had PD. As you know, PD is very difficult to diagnose correctly and is frequently misdiagnosed. Some PD symptoms are caused by other conditions.
Do you screen your success cases for the following two criteria: diagnosed by a movement disorder neurologist and (2) has a positive response to dopamine replacement. If the success stories meet this standard, then I personally believe you have a true success.
Please don’t get me wrong. I am 100% on your side and I have read your first book and found a lot of uplifting and good ideas in the book. I want nothing more than to find a cure for my PD. By the way, I submitted a saliva sample to 23andMe and even though I have PD I have no genetic markers for PD. This would suggest something in my environment was the cause.
Keep up the good work.
I am approaching my research with Parkinsons in a way very differently than has been my standard approach in my previous research contributions. Previously I would have set up in the beginning a long string of data fields for each person I have interviewed (and there are many). I would have ask each person this long list of questions – you identify several good ones above – and coded them into the data set. I of course would also have interviewed people without Parkinsons as “controls” and asked them the same questions.
When I had a sample size of 500 or so, I would have begun to crunch the numbers and provided a wide variety of statistical analyses. This approach succeeds in getting published in the best of journals.
It does not succeed in helping us understand the complexities of the causes of neurological symptoms associated with Parkinsons. I decided if I was ever going to make a contribution to the world of science I had to step out of the box I had crammed myself into for 20 years and approach the research in a different way.
My new approach has yielded incredible insights into what is really happening with people who currently experience neurological challenges. These insights have come from interviewing people with symptoms associated with a diagnosis of Parkinson’s who have stories to tell about what helps and what does not help. In science, the approach is known as “grounded research” which is a fancy word for case study research.
My former research – which was very quantitative – is viewed as much more prestigious at universities than the less admired and valued case study research approach. It is also usually much easier to publish. I succeeded with the quantitative approach and was generously rewarded with tenure and promotions to full professor.
The lesson I have learned from adopting the quantitative approach is that the quantitative approach yields few insights and fewer discoveries. I have concluded there is wisdom and great value in the case study approach.
I also believe it has been useful from a research perspective to step away from the “box” of having been diagnosed with Parkinsons Disease. I defer to the medical doctors to follow down that pathway. They have the qualifications and training to diagnose. Only with a diagnosis can they prescribe the medications.
As you point out, many people are misdiagnosed because there is no definitive test for Parkinsons to begin with. This is no fault of the doctors since there is no definitive test for Parkinsons. For my research, it does not help to start with a diagnosis since so many are wrong.
For example, if my sample is confined to people who have a Parkinson’s diagnosis, a surprising proportion would actually wind up having Lyme disease. My potential sample of case study subjects is not confined only to people who are diagnosed with Parkinson’s disease by a medical doctor. But in actuality, most if not all of my interview subjects have been diagnosed with PD.
What helps is simply to acknowledge the symptoms a person is experiencing which are associated with Parkinson’s Disease. The focus is then placed on the symptoms rather than a label of Parkinson’s Disease. When we begin to focus on symptoms, we jump out of a box of constrained and preconceived notions about Parkinson’s. The door is open to endless possibilities.
We are discovering that the causes of neurological problems associated with the symptoms of Parkinsons Disease include a long list of contributing factors. If people can determine which factors are relevant to their situation, they can find a therapy or treatment that can help resolve whatever symptoms are being experienced.
Robert Rodgers, Ph.D.
Road to Recovery from Parkinsons Disease