An interview with Sharon Krischer from Sunday Mornings with Twitchy Woman and Parkinson’s Foundation, Ambassador on July 11, 2023 by George Ackerman, Ph.D, J.D.
Biography
Sharon Krischer was diagnosed with Parkinson’s Disease in January 2009. About 6 years ago Sharon started writing a blog called “Twitchy Woman, My Adventures with Parkinson’s Disease” to fill a need for information about living with Parkinson’s Disease from the patient’s point of view for people who were newly diagnosed. Her goal is to present living well with PD in a positive, sometimes humorous way.
Sharon lives in Beverly Hills, CA with her husband, Joel. They have 3 daughters and 4 fabulous grandchildren.
Please tell me a little about your background.
I grew up in the Midwest (St. Louis), went to the University of Illinois and University of Michigan. After my husband finished law school we moved to Los Angeles. I got my master’s degree in Audiology and worked for several years as an audiologist. Eventually I stopped working and got involved in volunteering for several nonprofits, eventually becoming my synagogue president and a regional president for Hadassah. That is where I learned my leadership skills. When I was diagnosed with PD, I tried to ignore it and told very few people for about 5 years when I could no longer hide it.
Can you tell me more about your organization?
I never set out to make Twitchy Woman and an organization, but the pandemic changed everything. I had been coordinating a loosely organized group for women with PD in Los Angeles for a couple of years (see next question for more on that). When the shutdown was announced, we immediately went on Zoom. 9 women attended the first meeting, about 30 came to the second and it grew very quickly to include women from all over the world. We added chat groups, a mentoring program, and a book group as the need arose. We are totally volunteer run.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
When I was diagnosed in 2009, there was almost nothing on the internet except for about 2 blogs, the Fox Foundation, and a few others. It took me 5 years to accept my diagnosis and get involved. The first event I went to was a Fox Foundation day long expo. That gave me some hope and being a person who jumps into something 100%, it didn’t take me long to get involved in the Parkinson’s world. About that time, friends started to call and ask me to speak to someone they knew who was just diagnosed. Meeting with those people over coffee was the first step. I started my blog 3 months later so that I would have something to send to the newly diagnosed. I never considered myself a writer, but the blog came easily and really changed how I looked at PD.
After I started my blog, I learned from one of the few other bloggers about a 3-day symposium called the Women and PD Initiative, sponsored by the Parkinson’s Disease Foundation (which later merged with the Parkinson’s Foundation). I applied and was accepted along with 25 other women. We were charged with doing something with what we learned after we returned home. That is when I started what we called the “nonsupport support group”. The women wanted to do things, not just whine, so we had yoga, boxing, speakers on many different topics. Women from around LA found us and some even came from an hour away just to be with other women with PD.
What type of goals do individuals with Parkinson’s have when working with you?
I think most want a place to belong as a woman with PD. They want to feel that they are part of a special group that meets their needs.
What type of training and how long are the programs?
We meet on Sunday mornings, about twice a month for an hour. We also have a mentor program developed by our women, which does require some ongoing training for the mentors. We also have 2 chat groups and recently started a book group. All have been started by women who expressed interest in these types of programs.
What effect can it have on an individual with Parkinson’s?
Most importantly the women learn that there are many other women with Parkinson’s like them. That they are not alone. Many feel more comfortable with their diagnosis because of participating in our programs.
What would you like to see as a future goal for your programs?
I think the next step for twitchywoman is to officially become a non-profit organization so that we can hire someone to coordinate everything. The women have so many wonderful ideas that we cannot implement at this time because we don’t have the money or staff to run more programs for women.
What events do you participate in?
Sunday Mornings with Twitchy Woman and occasionally our singles chat group.
How does this also assist the caregivers?
Currently, we don’t offer anything specific for caregivers because of lack of time and funding. That may change if we get nonprofit status.
How can someone get in touch? What is your website?
email: twitchywoman18@gmail.com. website: twitchywoman.com
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Don’t give up hope, stay active, exercise and eat well so that you can live your best life possible with Parkinson’s disease.