Third World Parkinson’s Congress, Montreal The opening ceremony was intensely moving. United by a common enemy, over three thousand PD patients, caregivers, researchers and clinicians from 60 countries assembled in Montreal’s Palais des congrès. The audience was animated, frequently rising to give standing ovations for the inspiring speakers who urged them not to give up hope. Canadian attorney Robert Kuhn (a WPC “ambassador” with PD) spoke movingly about the importance of staying connected. By joining together, he said, “we can and we will find a cure for the plague of Parkinson's disease.” But it was Tim Hague, a PD patient since 2011 – who had against all odds just won the Amazing Race Canada – who brought the house down. His powerful words spoke to all the stakeholders. “Whether you’re the researcher, the health care professional, the family member, the friend, the person with Parkinson’s, persevere…our journey together may very well be a long one…don’t give up. You never know what is just around the next corner…never lose hope…persevere, this race as well can be won.”
If hope was the connective tissue that bound the delegates together this week, I detected some dissonance in the way scientists and patients viewed the latest research. Neuroscience legend C. Warren Olanow gave a masterful keynote speech reviewing the history of Parkinson’s research, celebrating the fact that it’s yielded two therapeutic “miracles – L-dopa and deep brain stimulation (DBS). Yet, patients I spoke to questioned whether this record – a 50-year-old drug and a surgical technique discovered serendipitously – is really cause for celebration.”
Of course, as the dozens of sessions revealed, scientists have been busy making extraordinary breakthroughs in genetics, neuropathology, epidemiology, molecular biology, protein chemistry etc., building a picture of the disease itself. Since knowing your enemy (according to the Chinese General Sun-Tzu) should help you eventually defeat it, these breakthroughs should in time be translated into interventions that treat symptoms more effectively than L-dopa and DBS, modify the disease progression, and perhaps even prevent Parkinson’s altogether.
When hope clashes with scientific reality, there is tension. A few times a patient expressed frustration with the slow pace of Parkinson’s research. One parkie questioned the need to wait for research proving exercise helped PD when she “knew” it did her good. Another patient flat out rejected the dismal picture of the non-motor symptoms presented in a plenary session (e.g. disabling fatigue, constipation, sudden drops in blood pressure, sleep disorders, depression, anxiety, hallucinations, and dementia), protesting that she was a happy person, without constipation or insomnia.
Among scientists too there was disagreement that centered on hope. One issue involved the recent trials of three disease-modifying therapies – cell transplantation, trophic factors and gene therapy. Warren Olanow emphasized that in double blind controlled trials, “every one of these approaches has failed.” Adding, “not only have they failed but in any instance they only target the dopamine system.” UK neuroscientist Roger Barker, who presented one of the best talks of the conference, pushed back, showing a video of a neural graft patient walking down a hallway, who had been off all dopaminergic medication for 15 years. Barker argued that such cases proved these techniques could work and shouldn’t be abandoned.
For the most part any tensions that emerged this week are healthy. The WPC brings patients – some of whom are extremely knowledgeable – into close contact with biomedical professionals who have devoted their lives to this disease. The patients leave Montreal vastly better informed than when they arrived. The researchers return to their labs more aware of patients’ priorities and questions. And deciding on research priorities surely ought to be something patients should be consulted about. Why, it could be asked, were there so many papers and posters on the genetics of PD (which admittedly is going through a fertile period), but so very little action on developing ways to deliver L-dopa smoothly over 24 hours, so that parkies stay “on” without developing dyskinesias? Solving this problem would make an enormous improvement in millions of patients’ lives. It seems astonishing that after nearly five decades so little progress has been made. Why, I heard one delegate ask, were there so many papers and posters on the neuropathology of alpha synuclein (again a very hot topic in neuroscience), but relatively little emphasis on rehabilitation techniques that might preserve mobility and prevent falls. Such questions will no doubt come up in the planning for the next WPC, scheduled to be held in Portland, Oregon in 2016. In the meantime, we all leave the Palais de congrès, remembering the words of Tim Hague, who won the Amazing Race Canada, “…never lose hope…this race as well can be won.”