The following Q&A with Claire Berman, member of PDF’s People with Parkinson’s Advisory Council, discusses PDF’s PD ExpertBriefing: Occupational Therapy and PD: Tips for Healthy Living. What role, if any, can an occupational therapist play in helping someone with Parkinson’s continue to enjoy a reasonable quality of life? A very helpful one, I learned from the PD ExpertBriefing led by Sue Berger, Ph.D. and Linda Tickle-Degnan, Ph.D. on September 9, 2014.
The following blog post from PDF Research Advocate Kirk Hall of Denver, CO is adapted from Kirk’s post on his own blog, shakypawsgrampa.blogspot.com. Last year, I wrote a blog post about the World Parkinson Congress (WPC) in Montreal, which highlighted a, “movement toward more patient engagement in the PD world.” Before giving an update on patient engagement in my own community in Colorado, here is a brief excerpt from that post from October 2013.
There’s no other way to describe it … I crashed at the Montreal airport. We had left the 3rd World Parkinson Congress (WPC) in plenty of time, but I think everyone leaving the Congress for home that day was trying to catch their plane simultaneously.
In early October, I was in Montreal attending WPC 2013. After a long flight from California, I headed straight to the conference center. The first thing I noticed as I entered the conference center was the presence of people with Parkinson’s (PwPs) everywhere. Several PwPs were accompanied by their caregivers, some traveled with friends and others looking for friends who were also attending WPC. It seemed like PwP from all over the world congregated in Montreal.
As I leave Montreal’s WPC 2013, I think back on how I felt leaving Glasgow’s WPC 2010, and the difference is striking. In Glasgow, I was an attendee two years into my Parkinson’s diagnosis, eagerly absorbing as much as I could by attending every session. By Montreal, I was several years into serving as a PDF Research Advocate, as part of the organization’s Parkinson’s Advocates in Research (PAIR) program.
Some might say, “No way!” but I am attending this week’s 3rd World Parkinson Congress in Montreal, Canada. Many will ask, “Why?” And I say because giving a donation for research is not enough, because being an advocate is not enough, because sharing my story is not enough, because participating in a clinical trial is not enough, because even attending the World PD Congress is not enough, but it shows you that I am serious about finding a cure NOW!