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Beyond the Tremor: A Full Body Revolt

Welcome to Not Just Shaking

I’m Lee, and four years ago, I received my official Early-Onset Parkinson’s Disease (EOPD) badge. Like most people, I thought Parkinson’s meant one thing: a shaking hand. My diagnosis, however, was less cinematic and far more complicated. In fact, I mostly just walk around with one arm not swinging, and occasionally my leg locks up like a cheap piece of machinery. No visible tremor… yet.

The Real Story: When Your Brain Commits Grand Theft Dopamine

If you have PD, you know the cardinal motor symptoms are just the opening act. The real misery comes from the things you can’t see. This blog exists because the non-motor symptoms (NMS) are the true overachievers in this disease, and they deserve a platform, mainly because they’ve stolen my ability to do anything else.

This is my life documenting the invisible chaos:

• My Cognitive Sludge: The short-term memory of a goldfish and the concentration of a squirrel in traffic. The simple act of filling out a form now qualifies as an Olympic sport.
• The Emotional Black Hole: The constant battle with crippling Anxiety paired with a motivational black market called Apathy. It’s exhausting to be perpetually unmotivated and desperately stressed at the same time.
• The Pain Report: Why I spend half my day feeling like I slept on a bed of rusty nails (spoiler: it’s muscle rigidity, not just a bad pillow).

Why I’m Doing This (Besides Seeking Validation)

There is surprisingly little honest, non-clinical talk about the full spectrum of this disease. I’m not here to offer medical advice (I barely trust my own brain, let alone yours). I’m here to log the successes, the spectacular failures, and the absurd dietary discoveries (like why a simple sugar cookie feels like pouring gasoline on my nervous system) and to create a place to talk about the things you, your support circle and me have tried to get to have some sort of life, the things that have worked and not worked, the things I wish I had access too, issues with family and friends and the list goes on.

Consider this your backstage pass to the full body revolt—the Not Just Shaking parts—and hopefully, we can share a sarcastic eye-roll over it.