My Pinky Finger Moved Like Jagger
It was a beautiful October day when I went to see the neurologist for my second exam.
-Miriam Bram
For a few months, I had noticed that my pinky finger moved when I held a glass and decided it was worth getting an evaluation. Sitting across from the doctor, I saw his lips moving and heard the word Parkinson’s. My body was there, but I was not in it. I was 44, married for 6 years and had two daughters ages 5 and 3. How could this be?
The only association I had with Parkinson’s was a rabbi I knew from my childhood who was no longer standing at the pulpit. He would sit hunched over with a tremor in his hand and no ability to speak. I remember thinking that will never happen to me. Thirty years later it did.
I was sure it was a mistaken diagnosis. It would go away. Not so long after my diagnosis, I began to have a more distinct tremor in my hand. Gradually, I was walking with a slight limp. My body would tremor when I stood still. I could no longer hide the fact of Parkinson’s though I tried my hardest and the more I tried the more the tremors would be.
My girls started to ask questions. It was time to put a name to these symptoms. I told them that I have a condition called Parkinson’s that gives me a shaky hand because my brain isn’t talking to my muscles properly. That the scientists are working hard on a cure and I have medicine that helps me to stop shaking. I reassured them of their gravest concern: that I wouldn’t die from Parkinson’s.
It’s been a slippery slope. Over time, my symptoms continued to show up more regularly. I had very short intervals of good walking and I never knew when it was going to give. An adjustment to my medication helped me to walk for longer distances. I have also learned a few hacks to keep it going. For example, when I lose my gait, I march, picking my knees up high until I find my natural rhythm. Instead of walking heel to toe, the marching somehow triggers my memory to recover a more regular gait. It works 70% of the time.
I was on a quest to find other people with Parkinson’s who were at the same stage of life as me. Most fitness classes and support groups were attended by people much older than me who had more impairments from advanced Parkinson’s. It wasn’t until I attended the World Parkinson Congress (WPC) in Portland, OR and Kyoto, Japan that I made connections with others my age also known as those with Young Onset Parkinson’s Disease (YOPD).
I discovered a strong and vibrant PD community existed and included Parkinson’s advocates. I felt a sense of hope and optimism to have such energy behind raising awareness of the disease, fundraising for research and finding a cure. In Kyoto, I attended a YOPD workshop where I met an ambassador for the WPC who spoke about what it is like living with this chronic disease. Now as an ambassador for WPC in Barcelona July 2023, I have spent the last three years as a Parkinson’s advocate.
Becoming a voice for YOPD community drove me to start a blog called “Shaking Up Parkinson’s” (www.shakingupparkinsons.com). I write personal, intimate stories about my experience living with a chronic, neurogenerative disease. I share the mental wellness challenges and my spiritual practices that help me cope with the difficult realities I face. Digging deep to find hope has enabled me to find my inner resilience and connect to my soul.
Miriam Bram wrote to us in January 2023. Miriam was diagnosed with Young Onset Parkinson’s disease (YOPD) in 2008 at the age of 44. At the time, she was a mother of two young children ages 5 and 3. She became a Parkinson's Advocate after attending both the 2016 and 2019 World Parkinson Congresses (WPC) and is an Ambassador for the WPC in Barcelona in July 2023. Miriam launched a blog called Shaking Up Parkinson’s (www.shakingupparkinsons.com) where she posts personal stories and honest and intimate reflections on living with Parkinson's disease. Miriam is passionate about being an advocate to raise awareness about Parkinson's. She is a member of PD Avengers, Young Onset Parkinson’s Network (YOPN), and she performs in a Parkinson’s Improv troupe. Miriam is an avid cyclist and also enjoys swimming, yoga and hiking. She lives in Manhattan and Amagansett, NY with her husband, two daughters and their Cavapoo Winnie.