Understanding What Parkinson’s Progression Means to Each Patient
Every day following the ruin of stagnation, it seems that I have progressed from early Parkinson’s to a moderate stage of the disease. But I can’t be sure. Many other factors, including stress, injuries, medication changes, and aging, could be making it look and feel worse. To appease my quandary, I dove into the internet, searching for elucidation about Parkinson’s progression.
We watched as Michael J. Fox and Muhammad Ali were changed by the disease. Granted, their Parkinson’s symptoms were dramatic: Their body movements gradually became less fluid, the tremors more pronounced. Over time, the movement challenges became more noticeable, signifying progression. The Parkinson’s community uses the terms “early,” “middle,” and “late” stage to describe progression. It mostly makes sense and matches what medical providers identify with patients. But it doesn’t help me in my search for well-being possibilities.
Progression for me is more than “early,” “middle,” or “late.” I accept that the disease will cause changes in me and my life. But it would be helpful for my wellness map if some of the pitfalls could be marked, “Danger ahead!” or, “Here’s a list of supplies,” to get me through the hardest parts of my chronic disease journey. Being well-prepared is an essential part of wellness success. The progression of Parkinson’s is not about stages — except in a general way. Rather, it means having some idea about what can be done to slow the progression, or, failing that, how to recognize when progression is happening. Useful information about progression would help guide us through what is sometimes a tortuous journey. It might make the trip easier.
Chatting with the Parkinson’s community reveals the entrenched idea that progression is unique to each person. It would be helpful if our understanding of progression could provide for each patient more details than, “It’s unique to everyone, and you will know when you get there.” So what’s holding up progress toward understanding disease progression?
Medical professionals determine Parkinson’s progression by a system involving a physical exam, patient report, and sometimes a standardized measurement tool or questionnaire. That system fails when all that we are told about progression is, “You’ll know it when you get there.” We need better information from early Parkinson’s stages to understand progression to middle and beyond. Data from the existing collection system is insufficient to give a clear understanding of what progression means to each patient.
I recently read an article in which the authors discuss the merits of the retropulsion test to evaluate postural instability in Parkinson’s. The three methods are: “(1) the pull test as described in the MDS-UPDRS scale; (2) using an unexpected shoulder pull, without prior warning; and (3) the push-and-release test.” Although the test is considered the gold standard, the authors state that “the outcome can vary considerably due to variability in test execution and interpretation.”
The authors state that the test fails to predict future falls, explaining that falling results from the “complex interplay between gait, balance, cognitive decline and environmental factors, and the retropulsion test captures only part of that.”
It is difficult to spot early symptoms during a short office visit once every three to six months. Increasing the speed of care by reducing the duration of clinic appointments has not improved healthcare for this ailing columnist. It hinders the ability of the healthcare practitioner to get to know the patient better and increases the chance of the latter being categorized as “that patient with Parkinson’s.” The provider can’t see all the effects of the chronic disease, even with a longer visit.
We have good and bad days, on and off periods, and life circumstances — all of which make data collection on Parkinson’s progression from a 15-minute office visit problematic. It makes sense that early diagnosis and proper treatment should make a difference in progression. As far as I can tell, no adequate longitudinal studies exist that describe variation in progression as a result of treatment, or lack thereof. This applies even to exercise, my favorite Parkinson’s treatment to slow progression, and the effects of stress as my “most need to avoid” situation to prevent speeding up the progression.
In the next column, I will offer a possible solution to the Parkinson’s progression research problem.
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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.