Beyond Tremors: The Unspoken Emotional Challenges of Parkinson's Disease
- Feb 6
- 3 min read
Updated: Jun 20
An AI-Integrated Emotional Wellness™ Approach to Coping
By Mark D. Lerner, Ph.D.
Principal Consultant and Creator, AI-Integrated Emotional Wellness™
Parkinson’s disease is often described as a "movement disorder," defined by resting tremor, slowed movement, stiffness, rigidity, and instability. But that description captures only what’s visible.
Parkinson’s is fundamentally a disorder of dopamine, a neurotransmitter essential not only to movement but also to our thoughts and feelings.
While cognitive changes such as slowed thinking, difficulties with attention, memory, concentration, and word-finding are often recognized, the emotional and neuropsychiatric experience of Parkinson's disease remains widely misunderstood and undertreated. In my case, living with essential tremor for more than fifty years likely masked the early signs of Parkinson's disease. My neurologist described it as a "double whammy"—living with tremors both in motion and at rest.
For many people—including myself—the deepest suffering began during the prodromal phase, years before tremors appeared, and often persists well beyond them. Apathy, anxiety, fear, obsessive, painful intrusive thoughts and images of past traumatic experiences, cognitive looping, rumination, depression, and a constant sense of uncertainty can shape daily life as much as, if not more than, motor symptoms. Uncertainty about our feelings from moment to moment can be profoundly unsettling, to say the least.
People often subtly—or openly—dismiss those living with Parkinson's due to the largely invisible nature of our emotional symptoms. This minimization compounds an already isolating experience and deepens our emotional pain. I've chosen to surround myself with others who are living with Parkinson's disease. Those who understand its unique and painful reality—a deep feeling of aloneness.
Sinemet, the gold-standard treatment, has become for me a literal lifeline—"my friend.” Within a half hour of taking the medication, I realize immediate symptom relief. Within the Parkinson’s community, we describe being “on” when the medication allows us to feel “next to normal” and “off” when its effects fade. Having been diagnosed during the past year, I'm also realizing the connection between my diet and Parkinson's wide-ranging symptoms.
Being "on" or "off" captures what often feels like a psychological head game—a rapid emotional and cognitive rollercoaster that can shift within minutes, making the disease feel, at times, cruel.
I can't tell you how many times I've read the saying, "F*ck Parkinson's," posted in social media groups.
AI-Integrated Emotional Wellness (AIEW) offers a framework for addressing these challenges by combining accessible information, including evidence-based coping strategies and tools, with the irreplaceable presence of human connection. While technology can help us understand and manage emotional distress, healing—finding a sense of meaning and purpose—depends on the compassion, validation, and support of mental health professionals, trusted friends, and loved ones.
You've heard the old saying, "If I had a dollar for..." every time I heard about someone who knows someone who has Parkinson's disease. Those of us living with Parkinson’s don’t wish to hear comparisons with others who have the disease or lectures on how to treat it. Parkinson’s disease is not a template—it manifests uniquely in every individual, particularly its emotional impact. I learned this lesson from a support group I'm currently attending. As one member of the group stated early on, "Mark, no two of us are experiencing the same symptoms."
What we need most is to be heard and validated—"I’m sorry you’re going through this"—and to have our experience acknowledged for what it truly is: a deeply personal, often isolating emotional struggle that extends, as the title of this article reflects, far beyond tremors.
Parkinson’s disease will not define me. How I respond to it will.
I will give voice to its unspoken emotional challenges.