Director, Education and Support Services
Parkinson Society Canada
The first thing I learned by attending the World Parkinson Congress, is that Parkinson Society Canada is on the right track and in some areas, leading the way. Our culture is inclusive of people living with Parkinson’s, and that also includes the care partner. Many Parkinson’s organizations do not include them, which means care partners have nowhere to go to find information and support.
The 2010 Congress included people living with Parkinson’s as congress organizers, key-note speakers and workshop leaders. The voice of the person living with Parkinson’s was loud and clear: they are the experts in the lived experience. For example:
“Nothing about me without me!”
“Patient as teachers and as inspiration.”
“The definition of Parkinson’s is a matter of perspective.”
Parkinson Society Canada’s value of empowering people to be involved in managing their condition is also on target. Based on the World Parkinson Charter, our person-centred approach is an emerging trend in models of care also seen in Israel and the Netherlands. The medical model is being replaced by a comprehensive model that focuses on quality of life.
Parkinson Society Canada’s poster presentation on Test your Parkinson’s IQ was a hit! Talking publicly about the motor and non-motor symptoms supports the understanding that Parkinson’s is a complex condition. People with Parkinson’s shared their experience about losing their sense of smell long before their tremor and not knowing what this might mean. Visitors to the poster enjoyed the engaging way of presenting this information and several Parkinson’s organizations asked to duplicate the test for their own use.
It was gratifying to have our work validated and to find partners on the international stage who share our values and commitment to improving the lives of people living with Parkinson’s.
The second thing I learned at the Congress is that research is advancing and expanding our knowledge about Parkinson’s. While it may be true that we have not yet found the Parkinson’s breakthrough, I believe we are breaking down the intricacies of this complex condition. For example:
Genetics. We can no longer call Parkinson’s idiopathic because many genes have been (and continue to be) discovered that play a role. There is still much to learn, for example, some genes are predictive, some may mutate on their own, or when exposed to external forces; some genes can be manipulated to interact with neurons that are involved in Parkinson’s. (Post-Congress we learned of further research in mitochondria and Canadian researchers have been heavily involved in genetics research.)
Pre-clinical/bio-markers. This was a huge research topic throughout the Congress. It is clear that by the time the motor symptoms are evident, it may be too late to impact the damage in the brain. The focus should be earlier detection and identifying what might be early predictors, risk factors or biomarkers. This was evident in research into cell biology, redefining the staging of Parkinson’s to include some of the early symptoms before a clinical diagnosis is made, and, of course, targets for therapeutic intervention.
More than dopamine. Though dopamine impacts motor symptoms, there are many other neurotransmitters involved in the non-motor symptoms; for example, what is the role of a-synuclein in lewy bodies, which is shared with Parkinson’s? Is Parkinson’s disease the same or linked to Diffuse Lewy body disease? What about acetylcholine that impacts cognitive function, a common non-motor symptom in Parkinson’s disease?
Intervention. We have successful treatment of dopamine-related symptoms, but we need to treat the non-motor symptoms that impact quality of life. There is interest in combining drugs with other non-medical interventions, such as exercise and cognitive behavioural therapy.
Exercise was a big topic. While research is not conclusive that it may impact the progression of Parkinson’s, the literature shows that exercise does impact brain function. This is important in a progressive illness because if a person exercises, their level of disability can be reduced. And let’s not forget the impact of creative therapies on emotional health, e.g., dance, music, writing, painting. (Parkinson Society Canada continues to receive submissions to our Creative Expressions web site launched in 2009. Many regional partners also encourage people with Parkinson’s to display their creative talents.)
The theme of the Congress was Bringing the Parkinson’s Community Together and it was successful. Parkinson Society Canada will have the honour of hosting the next Congress in Montreal in 2013 when we will welcome the world to our Canadian stage. I can’t wait to showcase what we will have accomplished by then!
Oh, the third thing I learned while in Scotland… I don’t like haggis!