Ain't that a shame!

In its latest edition The Journal of Parkinson's Disease published a rather important article [1], the first review published on the subject of shame in Parkinson's.

To say that shame has been overlooked in the context of Parkinson's is to highlight an area of significant neglect. And this is doubly remarkable when you consider the increasing global research focus on non-motor symptoms in general and the psycho-emotional aspects of the condition in particular.

Perhaps it's a question of definition – we all have a visceral sense of what shame is but perhaps struggle to articulate our understanding. Shame is not the same thing as guilt for instance. Shame can be thought of as being endemic while guilt is perhaps more event related. Nor are shame and embarrassment the same thing. Embarrassment is situational and transient while shame is more deep-rooted and permanent.

There is no question that shame has profound negative impact upon sufferers. There is a significant link to depression and suicidal ideation for instance. It has been overlooked for far too long. This review goes a long way towards redressing that balance. But how did it come about?

Roll the clock back to the summer of 2016.

In Geneva, Professor Paul Krack was working on his forthcoming presentation on apathy to the approaching World Parkinson Congress (WPC) in Portland when, out of the blue, he received a second invitation – to co-chair a roundtable session on shame in Parkinson's.

Paul recalls "I was terribly stressed by the idea of having to co-chair a small group of patients on a topic I had never lectured about nor even read about".

He needn't have worried. One of the guiding WPC principles for workshops and roundtables is, wherever possible, to pair patients and physicians as co-chairs. This ensures a broader treatment of the subject than either stance alone would offer.

Paul was in good hands. Sometime earlier, when the programme for Portland was being assembled, Julio Angulo, a person with Parkinson's (PwP), had pitched the idea of a session on shame. This resonated strongly with Eli Pollard, Executive Director of the WPC. She suggested a roundtable session and invited Paul to join Julio. 

It was Julio's turn to be anxious.

"I was elated by the invitation to present, but I felt apprehensive about co-hosting" he recalls. "Would the pairing work?"

It's worth saying that Julio is not your average PwP. He is a patient who could speak on shame from his experiences living with Parkinson’s. He is also a psychologist who could comment from the vantage point of his clinical experiences and his familiarity with the literature on shame. Put together with Paul, it was practically a dream team!

They exchanged emails as they tried to establish how the roundtable was to be run. Julio was keen that the focus should be on patients "I didn't want these subjective accounts to get lost in a roundtable that was narrowly academic or patient-detached" he explained.

Emails exchanged over logistics for the roundtable soon widened in subject. Practical acquaintance blossomed into full friendship and a correspondence that continued long after the WPC meeting.

"An intellectually curious, generative individual, a scholar grounded in science who is also attentive to the phenomenology of the patient as an important source of data" is how Julio describes Paul.

And Paul is just as appreciative of Julio - "I have learned over the years that I can learn PD only from PWP, but that definitely was a new quality of collaboration between the doctor and a PWP".

The roundtable itself was a success with patients from Australia, a Scandinavian caregiver, and others, all with some personal experience to share. As the session ended, both the co-chairs began to think beyond the meeting itself, thinking of ways they could take this further. But what could they contribute?

Both agreed they should write a review of the literature on shame in Parkinson's. On paper that sounds like a logical step. Review the literature, add a critique and publish.

Of course reviewing the literature is easy if there is a literature and they quickly realised that next to nothing has been published on shame in Parkinson's. For most of us, that would be a significant setback. But one man's setback is another man's challenge. Instead of being selective over the literature to review, they were comprehensive.

Many many emails and much midnight oil later the review was finished. Finally, a treatise on what shame was, what it isn't, its neurobiology, and its consequences on quality of life. A definitive statement. And all of this from an almost chance pairing of two complementary minds. But there was nothing of chance in the collaboration that resulted. As Louis Pasteur put it "Fortune favours the prepared mind". And he knew a thing or two!

If the story ended there it would be remarkable enough. But Julio's friendship and input inspired Paul to go further in the field of shame. With collaborators from Geneva, a new scale to evaluate shame in Parkinson's (the SPARK scale) has been created and, with additional support from the Michael J Fox Foundation, is currently being validated.

And all of this stemming from one roundtable in Portland! But then that's the philosophy of WPC – put patients and physicians together and wonderful things happen. But don't take my word for it – over to Paul for the final word.

"I had rather mixed feelings about the WPC meetings before I actually had a chance to assist in a PWP meeting that made me completely change my mind. Indeed I became an enthusiastic believer in the value of this type of meeting, which are filling a gap, responding to an important need".

1. Angulo J, Fleury V, Peron JA, Penzenstadler L, Zullino& Krack P (2019) Shame in Parkinson's Disease: A Review. Journal of Parkinson's Disease 9, 489-499. https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181462