I Am On, I Am Off, I Am…Still Here
April is Parkinson's Awareness Month — and we want to tell you what it's actually like. We are the Smart Patients Parkinson's disease community: people living with Parkinson's, and those who love them. These are our words.
We had no idea it would take this long just to know what we have. These are our words.
One neurologist watched us draw circles and said essential tremor. Another ordered a DATscan and didn’t commit to a diagnosis. A movement disorder specialist said it was definitely Parkinson's.
For many of us, the years before our Parkinson's had a name were really lonely. The tremor in one hand. The loss of smell. The handwriting getting smaller. The gait that started changing. All of it noticeable long before anyone had a name for why. For some of us, the diagnosis was only confirmed when the medication worked, the tremors quieted, and that was the answer.
A Parkinson's diagnosis is a negotiation that never feels settled, involving second opinions and saliva samples for genetic studies and long periods of suspense.
And then, once you know (or think you know) the real work begins.
We Are Master Trackers
Out of our kitchens and bedrooms we run a small, highly specialized medical operation with no training, no days off, and a learning curve that never flattens.
The first thing Parkinson's teaches you is that a pill is not just a pill. Carbidopa/levodopa is in constant tug-of-war with the protein in our bloodstream. Eat too much protein too close to a dose, and the levodopa loses. The amino acids crowd the blood-brain barrier and the medication doesn't get through. So we time everything. We wait 45 minutes before eating. We avoid protein in the first half of the day. We eat our last meal at 6 pm. We recalibrate when it still doesn't work. We experiment on ourselves with supplements.
The medication schedule is only the beginning. We track our ketones. We log deep sleep on smart watches. We monitor VO2 levels and heart rate variability. We do walking challenges with friends — 60,000 steps a week — because exercise is one of the few things proven to slow Parkinson's progression. We order wearable devices to quiet the tremors. We sign up for boxing because the training is proven to help, and also, honestly, because punching something feels appropriate some days.
We stay on top of it all because Parkinson's keeps moving the goalposts. It evolves which means the system we built last year or last week needs rebuilding. The medication that worked needs adjusting. The body that could manage the stairs needs a rail now, and then a walker, and then a different kind of walker with a laser light to cue the feet when they forget how to start moving.
We do the unglamorous, relentless, invisible work of managing a disease that does not manage itself.
That is what Parkinson's asks of us. Every single day, before breakfast, before the first pill, before we know whether today will be an "on" day or an "off" day, we renegotiate, recalibrate, and show up. We aren't heroes. We're people with Parkinson's.
From the Smart Patients Parkinson's disease community
Thank you to our partners at The American Parkinson Disease Association and Parkinson Association of the Carolinas for the work you do!