Back in 2007, I noticed that my right foot would twitch occasionally when I was writing. I would literally shake it off by shaking my hand and foot. It would disappear and then show up again after a few weeks. This went on for a while, but I just ignored it. Several months later, I fell and broke the tibia on my left leg. The twitch came back, prompting a trip to my doctor.
Within the next few months, I was diagnosed with very early, barely there breast cancer along with a Parkinson’s-like tremor. Needless to say, the breast cancer had priority and when I came out of my radiation fog six months later, it was time to switch to a movement disorder specialist who changed my life. She spent time with me to answer my questions and gave me the information that I needed. Most important of all, we bonded because of yoga. She was clearly the right doctor for me.
Still waiting for the shock of diagnosis to wear off, I hid my shaking hand and foot as much as possible, refusing to come to terms with it. For five years I avoided any Parkinson’s disease (PD) conferences, support groups and PD specific exercise classes. I was reading as much as I could find on the internet, which at the time there was very little, and became fairly knowledgeable about PD. Although I was still in denial, others saw what was happening and I started getting requests to speak to people who were newly diagnosed with Parkinson’s.
My husband and I went to a local Parkinson’s conference and that was the turning point for me. There I found that there were a lot of other people like me who were living well with PD. Then my real PD journey began.
I started my blog, Twitchy Woman, My Adventures with Parkinson’s Disease several months later because I thought it would be an easier way to share what I had learned with the newly diagnosed. I found a few other PD bloggers, one of whom wrote about the Parkinson’s Foundation’s Women and PD conference. This was an opportunity that I could not miss, so I applied and was one of the 25 women accepted! It was an amazing experience that led to more involvement with the organization. The Parkinson’s Foundation encouraged me to attend the World Parkinson Congress in Portland.
Soon after, the Foundation asked me to be the patient lead on Women & PD TALK, a groundbreaking study which led to the report: Women and Parkinson’s: Closing the Gender Gap in Research and Care, A patient-centered agenda for change. Because of my experiences with the Foundation, I have had many opportunities to advocate for those of us with Parkinson’s. I continue to write my blog more than five years later, which has been recognized as a top Parkinson’s blog on numerous lists. I went to Kyoto, Japan, last year for the World Parkinson Congress as an official conference blogger, had a poster on display and met many of my readers, as well as patient leaders from around the world.
The Women & PD initiative charged us to do something in our local community. I started a group for women that was more of a social/educational group than a support group in Los Angeles, CA. Last March, due to the pandemic, I took the program on-line with Zoom. Sunday Mornings with Twitchy Women started on March 22 with nine women. We have met every two weeks on Sunday mornings and now have more than 200 women who have participated, some from as far away as the UK and New Zealand!
I have spent many years as a volunteer for different organizations. I am fortunate that my experience prepared me well to do my work with the Parkinson’s Foundation. In addition, my husband, Joel and I have been able to travel to many places around the world since my diagnosis with no difficulty due to PD. We have three daughters and four wonderful adorable grandchildren, two here in Los Angles, and two in Chicago, who are the loves of our lives.
My husband and my doctors try to encourage me to slow down, but I find the ongoing activity energizing. I have met so many wonderful people with PD, some of whom have become good friends. I have had opportunities to do things I never thought I could or would do. Clearly, living with Parkinson’s has given me a new beginning at a time in my life when there seemed to be no future.