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This winter, my husband, Arman, and I finally took a long-awaited trip to Los Angeles to visit our children. We had planned to visit them back in August, but a Parkinson’s-related fall deterred our plans. Since we canceled the trip in August, I’ve been anxiously awaiting this visit. My…

Having a chronic illness is exhausting in so many ways. I’ve described Parkinson’s disease as being exhausted physically on a cellular level. It’s not like being tired after running a foot race or sleeping poorly the night before. On a molecular level, it’s like my cells and neurons are…

A few years ago, my husband, John, and I purchased a teardrop trailer. It really is cute. The back opens into an outdoor kitchen; inside, there’s a double bed, a chest of drawers, some great under-the-bed storage, and a teeny-tiny bathroom. It is the perfect trailer for minimalists. We had…

One thing I learned quickly as a caregiver is that much of the work happens where no one else can see it. Most people think of caregiving in clear, visible ways. They imagine helping someone stand, driving to appointments, or handling medications. These supporting acts are important, but…

The other day, I was thumbing through a few dated and crinkled copies of Good Housekeeping while waiting for a medical appointment, trying to relax. I tried to view the wasted time as an unexpected break from life, only to realize that I might be late for a meeting scheduled…

In the 12-plus years since I was diagnosed with Parkinson’s disease, I’ve become increasingly aware of how difficult the world is to navigate physically. When I started having gait and balance issues, I realized how many uneven flooring surfaces there were, all of which had become newly noticed…

A few years ago, I accompanied my dad, who has Parkinson’s disease, to a neurology appointment to observe how his doctor interacted with him and assessed whether his deep brain stimulation hardware needed adjustment. The doctor asked if he was taking the recommended dosage of levodopa at the scheduled…

For a long time, I saw Parkinson’s disease as a problem that just needed the right fix. Like a car that had stalled or hit a rough patch, I thought it could be tuned until it ran smoothly again. My Uncle Brandon had faced tougher challenges before. He wasn’t…

When you are diagnosed with a chronic and complex disease like Parkinson’s, it can be like learning a new language. Words like “gait” (the body’s posture while walking), “dyskinesia” (uncontrolled, involuntary movements affecting the arms, legs, head, or whole body), “micrographia” (tiny handwriting), and other strange-sounding…

Grief has a way of slipping in when you least expect it. Generally, I am a cheerful person, but lately I’ve felt a bit … sad? Apathetic? Angry? The correct answer is all of the above. Is it because I have Parkinson’s disease? Or was it triggered by the…