Look, Listen and Learn: The Importance of Patients(ce)

The uniqueness of the World Parkinson Congress (WPC) is that it mirrors at a macro level what happens in routine clinical care at the individual level.  Just as the WPC meetings are full of stimulating interactions, teaching moments, displays of emotion and creativity, and above all sharing, our clinic visits with Parkinson disease patients back home are a similar witches brew.  And how important this brew is, not just for the care of the individual patient and for improving the treatment provider’s skill set, but to enable the scientific advances that continue to lead to improved care for all Parkinson patients, and hopefully a cure one day.  It’s for this reason that I believe the best clinical researchers are those who maintain some sort of clinical practice, and that the best basic science researchers interact with clinicians or patients to better understand the disease(s) they are studying.   

I still remember the time 16 years ago when I was first introduced to Dr. Matthew Stern, who was in the process of opening the Parkinson’s Disease Research Education and Clinical Center (PADRECC).  Dr. Stern said that he and his colleagues had the neurological expertise to treat their Parkinson disease patients, but that they could use assistance managing the psychiatric aspects of the illness.  Once I started seeing patients, I quickly realized how common, varied and often distressing or disabling disorders such as depression, anxiety, psychosis and cognitive impairment could be.  And over time were added impulse control disorders, and special considerations for patients undergoing deep brain stimulation (DBS) surgery.

I was hooked from the start, and it was the patients who got me hooked and still keep me motivated.  It was the interactions with them and their loves ones, the stories they told me, the pain and suffering I would sometime observe or hear about, that fueled my desire to both help them in the moment, but also try to better understand the illness with the goal of improving the assessment and management of these psychiatric and cognitive complications.  For me that has meant trying to improve assessment techniques and diagnostic criteria, better understand the neurobiology of non-motor complications, and determine if medications and other treatments are helpful (or even harmful) to Parkinson patients.

I can think of numerous personal examples of how the crucial interactions between providers, patients, their loved ones, other clinicians, and the research community has spurred us to a better understanding of neuropsychiatric symptoms in Parkinson’s disease.  The most obvious example involves impulse control disorders, which were infrequently reported and not well understood when I first started seeing Parkinson’s patients in 2001.  Over time, with the introduction and common prescribing of newer dopamine agonists, I started to hear from patients, or sometimes their loved ones who had better insight, about problematic changes in gambling, buying or sexual behaviors.  Soon thereafter I started to work closely with the Parkinson’s neurologists at Penn to study and document these behaviors at our center, and by the end of that decade had collaborated with other researchers in an international study that definitively documented the common occurrence of these behaviors in Parkinson’s disease and their strong association with dopamine agonist use.  This study in turn has spurred additional research to understand the neurobiology of these disorders, how best to assess them, and testing treatments in clinical trials. It’s the complex, ongoing interaction between patients, clinicians and researchers that allows us to continually identify, study and ultimately address the common symptoms that Parkinson’s disease patients experience.

A busy academic career doesn’t allow for a full-time clinical practice, and clinical care can be physically and emotionally taxing, but I make sure that I continue to maintain clinical practices at both the PADRECC and the University of Pennsylvania. And I can’t think of a better way to share and celebrate the patient-clinician experiences I’ll have over the next few years than by seeing all of you at the 2019 WPC in Kyoto, Japan.

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Daniel Weintraub, MD was on the Program Committee for the Fourth World Parkinson Congress in Portland, Oregon, and was a speaker the Second and Third World Parkinson Congresses. He is presently Professor of Psychiatry at the Hospital of the University of Pennsylvania

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®