The World Parkinson Congress was much more than just a convention. It was an opportunity to meet and mingle with a diverse group of people who all have the same mission: finding a cure for Parkinson’s. There were so many options for all of us. We could go to medical research sessions, even if they were geared towards reseachers. Doctors came to exercise sessions with People with Parkinson’s (PwP’s). Sessions were labeled by how technical they were, but they were open to everyone. The exhibit hall had a huge variety of vendors, ranging from Parkinson’s organizations, to drug companies, speech therapists, a boxing ring and even one vendor touting a mattress to cure all ills. There were hundreds of posters, a staple at medical meetings, which outline the latest research and studies from around the world. Some were by researchers. Some were by PwP’s. Themed tours of the posters were offered for the curious.
So where am I a week later? Still trying to digest all that I saw and heard. Fortunately, the WPC app has links to the speakers and their slide presentations. This is very helpful if you can’t quite remember the details, or missed a session that you wanted to attend. The key thing is that now, thanks to the program guide which has info on every session and every speaker, I know where to go for more information on so many topics relating to PD.
The big take-aways from the WPC for me are:
- PD is a Designer Disease. The symptoms and progression for each PwP is different. Doctors are now looking at other ways to alleviate symptoms, including alternative medicine, exercise and nutrition. As we learn more about our genes and PD, the challenge will be how to move forward with that information to get the best treatment possible.
- We were inspired by so many: Tom Isaacs, Brian Grant, David Leventhal and Julie Carter just to name a few. They have all made our lives better in some way. And of course, who was not brought to tears by May May Ali,when she recited her poem “Pearl”, in memory of her father Muhammed Ali. Finally, we were inspired by so many People with Parkinson’s who made the journey to be together in Portland.
- None of us is alone on this journey with Parkinson’s. There is support for us in so many ways. Doctors and other health care professionals, therapists, trainers, caregivers, friends with PD, are all there to help. I met people that I had corresponded with through this blog, finally putting names and faces together. And I met people I had read about, all of whom were eager to share their wisdom and their help.
- This is a global community. There were people from many different countries, including PwPs, Caregivers, Doctors and Researchers who are all working together to find a cure and make life better for PwP’s.
- Meeting authors and hearing about their books. Jon Palferman, one of my favorites, spoke about Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, one of the best PD books I have read. Alice Lazzarini talked about her transition from cutting edge PD researcher to Person with Parkinson’s in her book Both Sides Now: A Journey From Researcher to Patient. I am looking forward to reading that next.
- We must advocate for ourselves to get the best care that we can. Everyone I met has a story about misdiagnosis, wrong medications and bad doctors. We, as People with Parkinson’s do have a voice, and even if it is a soft voice, we can and should be heard.
Here are a few of the posters and some photos