Columns

My dad and I sat quietly in the living room one early evening. The daily hustle and bustle had died down, and we were enjoying the peace of simply existing in each other’s presence. When I’m home, I like to mull over existential questions. I want to know what…

The other day, when I was shopping for sandals, I thought about my sister Bev, who has stage 3 Parkinson’s disease. I pondered how Parkinson’s might affect her footwear options. For example, I thought about how sandals and flip-flops may be trendy, but they typically aren’t good for people with…

Many writers offering chronic disease management tips suggest establishing a routine. Doing this while battling a chronic illness is no easy task. It used to be that I could push myself hard to get something done, and all I would feel afterward is tired. Now when I push like that,…

The word “advocacy” alone can send people running for the hills. I’ll admit, when I first decided to advocate for those of us with Parkinson’s disease, I was a little scared. Because I’m only 31 (and look 16!), I didn’t think anyone would take me seriously, and I certainly didn’t…

Managing medications is a common responsibility for those with Parkinson’s disease and many other conditions. According to Georgetown University’s Health Policy Institute, more than 131 million people — 66% of U.S. adults — use prescription drugs. With Parkinson’s disease, managing medications is a balancing act required for us to…

I never thought much about my sister Bev’s blood pressure (BP) until I accompanied her to a dental appointment. The staff took her vital signs and told Bev, “Your blood pressure is a bit low today at 98/68 mmHg.” A normal BP for adults is usually in a range…

My life with Parkinson’s disease is so strange that I sometimes feel as if I don’t know my own self anymore. I have a runny nose that isn’t attributable to allergies or viruses. Rather, it’s a dysregulation effect of the disease. I feel sadness that…

Feeling overwhelmed? Unsettled? Exhausted? I get it. I’m tired, too. I’m not tired of being a caregiver, but I am tired as a caregiver. I have written about how fatigue affects people with Parkinson’s disease. Today, I’m writing about the other side of it: caregiver fatigue. I would never…

Even after years of practicing the Parkinson’s disease self-management program I initiated and developed, which I call “TBM,” I still experience suffering in the form of intense pain, brain fog, and emotionally turbulent days. Still, I must face the beast. It’s a chaotic experience, difficult to translate, and not…

I’m back! Not just figuratively, but also literally. I recently took some time off to get my health in check. I was in the process of changing medications, and my neurologist had warned me that I might have side effects or withdrawal symptoms. Boy, was he right. He had been…