The vitality, focus and awareness was indeed a “Factor” in yesterday’s gathering.This stellar group of women is committed to being proactive and is gaining momentum and encouraging the greater PD community to become knowledgable and to share in our plight.
Sunday, January 17, 13 women met for the first time at Factor’s Deli in Los Angeles as part of the Parkinson’s Disease Foundation’s Women & PD Initiative. This diverse group of women included several with early onset PD, a couple who had recently been diagnosed and one who has had PD for 24 years and is doing great! We all shared our experiences with being diagnosed or misdiagnosed, bad doctors, good doctors and more.
PDF Research Advocate Kristin Mendenhall educated us with a comprehensive Power Point Presentation about Parkinson’s Disease, research and the need for all of us to participate in clinical trials and to advocate for more funding at the NIH and other institutions. We learned about local trials at UCLA and USC that we may be able to participate in. Another fascinating project that she talked about is serving as a trial patient for medical and physical therapy students so that they can learn about Parkinson’s Disease from a real person with Parkinson’s. We need to find out how more of us can get involved in that.
We also talked a lot about exercise and the need to keep moving. Roberta Marongiu, owner of Rock Steady Boxing NY/LA and a neuroscience researcher at the Weill Cornell Medical College in NY , spoke about the boxing program and filled us in on some of the stem cell studies currently taking place.
We also talked about the upcoming World Parkinson Congress in Portland, Oregon. I was happy to see that several of the women are planning to go. Roberta, who attended the last WPC,encouraged everyone to go because it is an amazing experience that is not just for scientists and doctors. There are many lectures, workshops and other things geared towards people with PD and their partners or caregivers.
The enthusiasm in the room was high. The women were hungry for information and never hesitated to ask questions. Two women, who had been afraid to be around other women with Parkinson’s, walked away with a new appreciation for being part of this exclusive group of women with PD. They all left wanting more. When asked about scheduling another meeting, the answer was a resounding “yes!” Several have offered to help planning future meetings which might include a Dancing Through Parkinson’s demo, a chance to get in a boxing ring, hear from a local doctor or researcher and even a “gripe session”. Our next meeting will be on March 6, somewhere in Los Angeles.
If you are a woman with PD living in Los Angeles and would like to become part of this group, please let me know and I will add you to our list.