TWO LITTLE WORDS

A diagnosis of Parkinson's is difficult to both give and to receive. The moment the word Parkinson's is uttered, a communication barrier falls immediately between giver and receiver. The giver may try to pass on more information but the receiver will receive only three words from that point onward. "Chronic", "neurodegenerative" and "incurable". Chronic means you will have it for a long time. Neurodegenerative means it will get worse. Incurable means there is no hope of being rid of it. Each on its own is a body blow. Together they are almost a knockout.

Faced with such inexorable terminology, it is easy to see the diagnosis as an invitation to passivity. Almost all the discussion focuses on what the illness will do to you. Rarely is there any mention of how one might respond or even that one can respond. The drugs will help for a while. Just accept your fate.

And many do exactly that. Crushed by the diagnosis and unable to see beyond that limited horizon, they allow the disease's iniquities one by one to overtake them. 

But hold your horses! You didn't think we were going to leave it there, did you? 

There are other ways of dealing with Parkinson's.

In 2010, at the 2nd WPC in Glasgow, Scotland, one of a thousand patient delegates to the conference, Diane Cook from Colorado, was listening in one of the hot topic talks with increasing interest. Lisa Shulman from the University of Maryland seemed to be advocating anything except passivity as a response to Parkinson's in her talk titled "The Power of Individual". She spoke of many means by which patients could make a difference to their own illness. Two words in particular seem to keep coming up in her talk – self-efficacy. Diane wrote them down and underlined them. But what did they mean?.

She had to wait until she was back home in Colorado to learn more. 

Back in Denver, Diane started to read up on self-efficacy. She soon realised that one name cropped up wherever she looked. Albert Bandura of Stanford University in California, had introduced the concept back in 1977 [1]. The term 'self-efficacy' is essentially one's belief in one's ability to succeed in specific situations or tasks. One's self-efficacy can play a major role in the ways in which one approaches goals, tasks, and challenges. And challenges don't come much bigger than Parkinson's.

At that stage, a decade ago, there was very little, if any, research on self-efficacy in Parkinson's although the concepts had begun to influence other areas of medicine. The more she read, the more convinced she became that self-efficacy would be beneficial in Parkinson's. It seemed only logical. But it needed to be tested.

The answer, as is so often the case, was on her doorstep. You might think it was serendipity but this is probably more a case of fortune favouring the prepared mind as Louis Pasteur would have said. Diane had noticed, in her first support group for the newly diagnosed, that some goal orientated positive behaviours could dramatically improve the way in which people experience the disease. Perhaps self-efficacy somehow underlined this improvement. As luck would have it, she was launching her second support group for the newly diagnosed around the same time. A perfect testbed for the hypothesis. And more support for Louis Pasteur!

The idea of self-efficacy wasn't the only take-home from Glasgow. Like many patients at the meeting, she was impressed by the scientific rigour needed to test any scientific question. Armed with the learnings about self-efficacy, she went to her neurologist Rajeev Kumar with a proposal – that they should write a multi-module curriculum based around Bandura's methods and test it on the support group. Kumar agreed.

A grant from the Colorado Neurological Institute provided the funding to test the question formally through a clinical trial. The results were positive. Although there was a deterioration in physical functionality, many other measures such as hope, anxiety and ability to manage the disease were significantly improved. These improvements were sustained even at four year follow-up. There are not many drug treatments that could make such a bold claim.

And so PD-SELF began in 2013. It is currently an eight module program for the newly diagnosed to help them understand the management of the condition and to maintain the best possible quality of life. From that first trial, the program has expanded to 14 centres. There are plans for more. This is a living vital program.

Diane is keen to say that Rajeev Kumar has been highly instrumental in getting the program off the ground. His guidance as a neurologist has been an essential foil to Diane's ideas. It is that interplay that has created PD-SELF.

And perhaps most amazing of all is the power of language. Who would have guessed that all this comes from an inspiring talk by a scientist at the WPC and just two little words? 

Self-efficacy.

[1] Bandura, A (1977). "Self-efficacy: Toward a Unifying Theory of Behavioral Change". Psychological Review. 84 (2): 191–21.