Our 8th Anniversary
At their most recent luncheon, members of Parkinson’s Women Support celebrated their eighth anniversary. Susan Foster and I were introduced to each other eight years ago, and we haven’t stopped meeting up with each other since then. Couldn’t have done it without you, Susan!
2016 – A Very Good Year
You might not get a rave report on 2016 from a national political viewpoint, but the year was good for Parkinson’s Women Support members. On our blog, we wrote about several general data surveys, Deep Brain Stimulation articles, a wonderful Moving Day event, and some memorable lunches leading to a fantastic time for some of us at the World Parkinson Congress (WPC.) The WPC conference set the stage for our sellout symposium, Women & PD: What’s New?
Our average age of diagnosis is the golden age of 60. Over half of us have had pesticide exposure during our youth. Most of us identify with at least some of the familiar symptoms of shaking, shuffling, diminished smell, constipation and soft voices.
We had an interesting tech survey on apps for PD. Co–author Sarah Eitzman is a retired pediatrician and court appointed special advocate (CASA) for Santa Clara County. Co-author Aura Oslapas has over thirty years experience as a design leader, strategist and creative director. You may find just the app you’re looking for in their survey.
The online publication Parkinson’s Life wrote a story on why our Parkinson’s support group is just for women. The excitement of being featured in an online “lifestyle” magazine was so exciting, we had to take a poll on our blood pressure to calm down. 18 (48.57%) women polled didn’t have low blood pressure, and 17 do have low blood pressure.
Speaking of press, hope you all read the front page cover story on Susan Speicher in The Almanac. Read “Living With Parkinson’s Disease” for a slice of life on one of our members.
I’m proud of my inclusion in Faces of Parkinson’s: Global Reflections, a book published by World Parkinson Coalition. The book is a compilation of 63 people’s comments on Parkinson’s.
Deep Brain Stimulation
Almost three years after Deep Brain Stimulation, I began to notice a tremor developing on my right side. I’ve looked into it and wrote an article about deciding on unilateral versus lateral. If you’re in the same boat, my blog has some terms to learn for your own risk benefit analysis. That was followed by a blog on regularly checking the brain stimulator battery, a blog on choosing batteries for DBS, and a blog on what people can do if they experience DBS complications (see list of blogs below).
Moving Day Silicon Valley
Fifth grade gratitude was on display at Moving Day Silicon Valley 2016. We’re grateful for the art exhibit of fifth grade portraits of local doctors and researchers. This was organized by our member Ann Bolan, who was Outreach Chair of Moving Day Silicon Valley 2016. The walk event was made possible by National Parkinson Foundation. It was a first rate experience that offered the PD community a chance to learn and have lots of fun.
Super PD person and PWS member Lisa Gravey took the prize for raising the most funds at Moving Day for the National Parkinson Foundation. She also presented a paper at the WPC. She’s a super achiever!
World Parkinson Congress WPC
The World Parkinson Congress (WPC) on September 20-23 in Portland, Oregon was phenomenal. My blog takes a look at what the 2016 World Parkinson Conference was like.
Women & PD: What’s New?
Women & PD: What’s New? was our group’s pièce de résistance for 2016. We organized a special group of medical experts in a unique symposium for women! We’re fortunate to have received support from Parkinson’s Disease Foundation, PWS member Nancy Stohn, Medtronic, and National Parkinson Foundation. We also received beautiful centerpieces from PWS member Susan Speicher, and setup assistance from the rest of the PWS planning committee.
The highlight of the event was described by Nancy Neff, “The room burst into spontaneous applause when Dr. Heilbron (23andMe) said that being invited to the symposium had changed the direction of his research! He is hot on the trail of genetic reasons that PD is more common in men than in women, having first explored hormones and not yet found a reason.” Ah yes, music to our ears!
As 2016 was ending, we received a surprise notification that a key protein, researched by Dr. Finkbeiner could lead to treatments for Parkinson’s Disease. This news set us on a hopeful trajectory for the future.
We’re planning to gather on Saturday, January 21 for the Women’s March in San Francisco. We’ll march to advocate for Parkinson’s research, health care, support services, and affordable meds for people with Parkinson’s disease.
More Support Groups
Further ahead, we’re planning to spawn more groups this year to accommodate the growing need for women’s support groups. Our list of more than 80 women has outgrown regular casual lunches in people’s homes and restaurants. In addition to the group who has aready formed in Central California, plans are underway to add a Northern Peninsula group in addition to our Southern Peninsula group. If you’re interested in heading a group, please let us know. We’d like to offer encouragement, camaraderie and compassion possible for all women who share their lives with Parkinson’s.
Links from 2016 articles
Speakers at Women & PD: What’s New?
The Age of Diagnosis for 33 Women with PD
Women with PD Ponder Pesticide and Chemical Exposure
Women Shake, Shuffle, Sniff, Go, Shout
Just for Women With PD
Women with PD Polled on Low Blood-Pressure
Deciding on Unilateral VS Bilateral DBS
Regularly Checking Your Brain Stimulator Battery
Survey Apps for PD
Recharge or Non-recharge Battery for DBS
5th Grade Gratitude at Moving Day 2016
Tremor Diagnosis: ET or PD?
Free Supportive Care Program for PD at Stanford
Dissatisfied With Your DBS?
Women Support Groups Attending WPC
Women & PD: What’s New?
Speakers at Women & PD: What’s New?
Wow at the WPC 2016
Anders Seines Captures Soul at WPC 2016
Women’s Parkinson’s Disease: What’s New?
Women & PD a Sellout Success
Women With PD and You
Key Protein Could Lead to Treatments for Parkinson’s Disease
Advocates for Parkinson’s Disease Join Women’s March
About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen