An interview with Steven Steinberg from What’s Shaking Man on July 29, 2023 by George Ackerman, Ph.D, J.D.
Steve Steinberg has been living with Parkinson’s Disease for ten years. He is a father, brother, son, painter, photographer, writer, and music lover. Educated and trained as a Social Worker, Steve worked in the public mental health system for over 28 years. In addition, he has helped veterans experiencing post-traumatic stress, people experiencing housing challenges, and more than a few friends seeking free advice. Born in Los Angeles, California, he spent most of his childhood in the New England area and returned to Southern California for his teen years with a “wicked” Boston accent which he promptly lost. After stints in several Southern and Central California cities, Steve moved to Temecula, California, in 1999 in pursuit of good schools, clean air, tract homes and conveniently located wineries. He has two adult children who encourage him to share his sense of humor about Parkinson’s with you and not them for a change. In 2022 he started his website and blog, What’s Shaking Man (www.whatsshakingman.com), to expose the humor, ironies, and absurdities of living with Parkinson’s.
Please tell me a little about your background and what got you involved with awareness.
I was diagnosed with Parkinson’s at age 48 after experiencing a tremor in my right hand and arm for almost three years. A couple of months after I was diagnosed a co-worker approached me and asked, “What’s shaking, man?” That was the first time I laughed at my Parkinson’s, and I soon realized I can’t live with it if I can’t laugh at it. Early on, I attended every informational and motivational workshop or conference I could, and I was a always attracted to speakers that used humor. I then heard Michael J Fox say in an interview, “Parkinson’s is funny until it isn’t.” I realized I had amassed funny experiences and observations living with Parkinson’s, and I wanted to share them with others. Having been a social worker in the public mental health sector, I knew the value of personal, lived experience in helping to educate, motivate and inspire others. I liked to write, and I knew I had a unique voice to bring to the Parkinson’s awareness community.
Can you tell me more about your advocacy?
Advocacy to me is an everyday, every moment activity – meaning that every time I go out in the community, talk to someone, or write a blog post there is an opportunity to improve the lives of everyone affected by PD. By maintaining a attitude of gratefulness, hope and dignity, I can show by example the potential we all have, change the negative attitudes people carry around, and correct the misinformation or misconceptions people have about Parkinson’s.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
In my work as a professional Social Worker and now as a retired person living with Parkinson’s I feel my passion, and what a want to be remembered for, is valuing, and using lived experience to help others to engage with their care, set their own goals, and live to the potential they see for themselves. In the mental health setting I saw people who did not make choices I would make for them or choices that did not meet the goals of the program we offered. I learned that someone with lived experience of mental illness could talk to them, understand them, and better engage them in reaching their goals better than I could. By accepting where they were at, I was able to see their potential and help them achieve their goals more effectively. I meet the same people living with Parkinson’s. They are not choosing or accessing a path I would want for them. Both of our experiences are heightened when I share my story and accept theirs without judgment. Like mental illness, Parkinson’s is an insidious and cruel life partner, and I can only hope for a cure, if not for myself than for future generations. In the meantime, raising awareness using my experiences makes the most sense to me.
What type of goals do individuals with Parkinson’s awareness have when working with you?
I think what I get the most is “hey, that is exactly what I experience. Thanks for validating this and helping me laugh at it.” Next, I get a lot of friends saying, “thanks for sharing that – I did not realize you (or someone living with Parkinson’s experience that.” And then I get a few, “Parkinson’s is not funny…at all.” I love any response I get because that means not only are people reading it, but they are processing it and hopefully integrating it into their worldview.
What effect can your advocacy have on an individual with Parkinson’s awareness?
The only thing I hope a blog does is make people laugh. Laugh at themselves, at me, or at what people with Parkinson’s put up with every day. Though I am motivated by deeper things that I described above, if at the end of the day I am still “living and laughing with Parkinson’s,” then all is good. The times I have set higher goals than this for the people who read the blog I get disappointed. After all this is my experience, and nothing more. If it helps someone else, great. If not, I’ll still write another at least until Parkinson’s isn’t funny to me anymore.
What would you like to see as a future goal for your advocacy?
Having recently benefitted greatly from Deep Brain Stimulation surgery, I and hoping to increase awareness of that procedure and advocate for better access and acceptance of the procedure. Currently, I am writing about my experiences with it in my blog.
I also would like to use my blog as the basis for a book.
Finally, one day I hope to have an opportunity to publicly share my story and experiences in a live conference or entertainment setting.
What events do you participate in?
My participation to date has been in the form of an attendee at conferences and workshops. A shout out to World Parkinson’s Congress, Michael J Fox Foundation, University of California San Diego, Loma Linda University, and Parkinson’s Association of San Diego for great events one the past ten years that have taught me not only about my Parkinson’s, but also taught me to be an advocate.
How does this also assist the caregivers?
I have tried from the beginning to write with the caregiver and care partner in mind. They are often the sources of care and hope upon which the person with Parkinson’s relies. I have caregivers and care partners comment to me that they learn about themselves and their loved ones through reading my posts. Some have said I have given them permission to laugh at their situation. They have also shared with me ideas and thoughts that help them get through this. It is very inspirational to hear from them because they carry a burden I could never imagine.
How can someone get in touch? What is your website?
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
I will repeat what I quoted Michael J. Fox, because it is what gives me hope and inspires me, “Parkinson’s is funny until it isn’t.”