Individualized Presentation: A Hallmark of Parkinson’s
“If you have met a person with Parkinson’s, then you have seen just one patient with Parkinson’s.” I heard a medical doctor say this at a Parkinson’s disease (PD) support group meeting and presentation several years ago. After attending four different PD support groups, the truth of individualized presentation was obvious.
I’m taking a big risk with what I’m about to say. It’s risky because I could be totally off base, and because someone is likely to take it personally. When I get one of those nagging ideas that casts its net into various portions of my brain, reeling in concept after concept, then it’s either succumb to insomnia or sit down and write. Damn the fear of failure!
I must take a deep breath because the science of neurological rehabilitation has been slow in applying its knowledge to patients with Parkinson’s disease. Patients are left ignorant, struggling to do the best they can. Not knowing what neurological rehabilitation path to follow leaves each patient to create their own path. In response to the disease, each patient is adapting in their way to the broken PD brain. This adaptation process contributes to the individualized presentation of PD.
One of the main goals of the spectrum stage theory I describe in my “Possibilities with Parkinson’s” book is to provide an explanation for the large diversity of symptom presentation with Parkinson’s disease. The book offers the idea that there are two dopamine-providing centers, one mostly tied to motor symptoms (the basal ganglia) and the other linked to nonmotor symptoms (the insular cortex). Changes in the degree of damage to each contribute to individualized presentation. Add to this the clinical observation that Parkinson’s disease is progressive — it gets worse over time differently for each person — and a more complete understanding of this hallmark PD feature emerges.
Scientists have offered us some general guidelines regarding progression of PD stages, but they are quite unreliable as a predictive tool. Efforts have been directed toward the identification of factors that affect the progression of Parkinson’s disease, yet to date, few factors have been identified. Researchers recognize that the substantial heterogeneity of clinical symptoms and lack of reliable progression markers in Parkinson’s present a major challenge in predicting accurate progression and prognoses.
Rather than simply viewing individualized presentation as a clinical annoyance, we can look at it differently. One can argue that individualized presentation is a hallmark feature of Parkinson’s that tells us important things about the disease. Given the universal nature of this individualized presentation, there must be an underlying universal cause.
Neural plasticity is universal to us all. It is the brain’s ability to adapt so that it can more effectively deal with the challenges of life. The brain is always adapting to the input it receives, even if it’s from a broken PD brain. When patients are left ignorant, all we can hope for is a kaleidoscope of presentations due to the interplay of individual brain adaptations to individual environmental circumstances as people wrestle with the broken PD brain.
I think there are many things we can do as a society to improve quality of life for those diagnosed with Parkinson’s disease. But it all starts with the recognition of a broken PD brain and how that affects the individual — not the collective, not the average, not the image of PD in the books, but that one person.
This is true for the patient also, for they must find their individualized presentation within the challenges of living with Parkinson’s disease. With an improved model describing the disease, we can make a better treatment map and discover new possibilities. There is more one can do to live successfully with Parkinson’s disease.
It all starts with a model of the broken PD brain, the malfunctions that are happening, and what that means in our daily lives. The model is the foundation for drawing a map to help guide training of the broken PD brain. Science has not yet caught up with how to do this for all of those diagnosed with Parkinson’s disease, but we are headed in that direction, even if on our individual paths.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Louis "Skip" Sander
You mentioned a book, Possibilities with Parkinson's. Where can one get a copy?
I have a story tell.....oh I mean, I have a reality to share with you all. I was hit with PD when I was 41. A decade ago.....
. ........and life goes on and on......
i think there is certainly merit in respecting idiocratic "plasticity", but recognizable repeated symptom presentation is all anyone has to go on.
But then since there is generally little interventional treatment available, excluding diet----MAOI, LD, transcranial, observation of presentations and categorizing them is not ver important..
Unusual presentations however might yield insight into underlying causation if a hypotheses can be formed and explored.
Hi I am wondering if Dr. C does speaking engagements?
I totally understand and agree with you. Parkinson’s is truly an individualized experience and life around the person with Parkinson’s needs to be tailored to the individual. There are some areas that we all can benefit from but are needs have to be individualized.