Columns

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…

If you’re a Parkinson’s veteran, what would you tell a rookie? If you’re a rookie, what Parkinson’s lessons would you like to learn? I was diagnosed in late 2014 with young-onset Parkinson’s disease at the age of 45. At 53, I feel like both a rookie and a veteran.