On the final day of the 3rd World Parkinson Congress, there were many more scientific and educational sessions. Roving reporter and PDF Research Advocate Ronnie Wanetick of Walnut Creek, CA, provided summaries of a few sessions she attended.
From Ronnie: Today, I went to several different sessions. I will try to sum up what was said!
- First, several sessions talked about patient empowerment. Overall, people with Parkinson’s need to feel more empowered and to feel encouraged to be full partners in their care alongside their neurologists. In Canada, many centers emphasize participatory medicine, which uses feedback from the patient and physician along with a team of occupational, physical and speech therapists to monitor a person’s health and together make any changes needed to his or her care.
- Second, I was part of a circle in the WPC’s Clinical Trials Village that discussed how to improve clinical trials. Some participants mentioned that after participating in clinical trials, they were never informed of the end results! I mentioned that more people with Parkinson’s would volunteer for trials if transportation was available. (PDF’s PAIR program has also looked at this issue, see the poster on transportation and clinical trials here.)
- Third, I went to a lecture in deep brain stimulation (DBS) which discussed the possibility of performing the surgery earlier on in Parkinson’s than is presently is the norm. The faculty mentioned that if DBS could be used on people with young onset Parkinson’s (those who develop it before age forty), it may help those people to continue working longer and to be economically more secure. This is currently under investigation. There are also trials going on currently on improving DBS techniques. The presenters emphasized that people with Parkinson’s who are interested and qualify for DBS should go to a center that is very experienced in the surgery, one that ideally performs several DBS surgeries each week.
- Finally I heard two psychiatrists discuss the prevalence of depression, anxiety, and apathy in people with Parkinson’s. They mentioned that almost 50 percent of people with Parkinson’s have had depressive bouts in the five years before a diagnosis of PD is made! It is important to know which of the three is prevalent, because optimum treatment varies for each symptom. Cognitive behavior therapy, or CBT, along with certain medicines, can be key to relief. CBT helps people to change thoughts and behaviors that are unhelpful, and to replace them with more positive thoughts and activities.
Throughout many sessions, exercise was mentioned as essential to optimizing daily life.
The day ended and the WPC Congress was over, not to start again until 2016. I leave with a new depth of information and great appreciation for all the wonderful people I was fortunate to come in contact with. For now, “that’s all folks!’
Ronnie is a PDF Research Advocate. To learn more about becoming an advocate and what they do visit www.pdf.org/pair.