Columns

When the clock struck midnight on March 13, Dad turned into a pumpkin, sprouting vines for ears and orange skin as a protective barrier from the world. That day completed his seventh full decade on the planet, and I imagine it gave him insight into the number of days he’s…

So what exactly happens when a full-time caregiver gets sick? Needs to take a well-needed day off? Can’t perform the necessary tasks of caregiving? As full-time caregivers, some crazy questions run through our minds. For example, how will my husband, Arman, who was diagnosed in 2009 with…

Recently, I discussed the dreaded dangers of despair. This darkness is, in many ways, linked to a loss of self-worth, something that happens with Parkinson’s disease. It happened to me. I had a bad “Beast” day that overlapped with my evening “off period” and felt sick with…

One of the most challenging nonmotor symptoms of Parkinson’s disease is fatigue. When I think about the word, a poor night’s sleep comes to mind, resulting in a day of being tired afterward. Or fatigue might result from a long week at work or a stressful life event.

Editor’s note: This column briefly discusses suicide. Please find resources for help at the end. No one prepares you for the enormity of the loss that comes with a chronic illness compounded by getting older. My ability to bounce back has fallen through the floor, leaving me groundless and searching…

Last week, I met with congressional staff to share my Parkinson’s story and gain support for the National Plan to End Parkinson’s Act. As an advocate, I often teach, write, and facilitate support groups, but this was my first experience with public policy. According to the Michael J.

“Everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way.” — Victor Frankl This quotation was shared with me by a dear friend, a therapist with over 20…

Anything that causes the body or mind to be off balance, shifted away from its baseline state of homeostasis, will create problems. This is especially true with Parkinson’s disease. As I move deeper into midstage Parkinson’s, the experience of being off balance is more intense and lasts longer,…

The name Alexa is of Greek origin and means “helper” or “defender of humankind.” Back in 1996, when my husband, Arman, and I were deciding on a name for our first child, we had no idea that this would perfectly describe the woman she’d grow up to be. We really…

In computer gaming there is a “sweet spot” where one’s skill level matches the pace of the game, allowing it to flow with an enveloping grace. This experience stems from extensive practice — time spent actively seeking that sweet spot, knowing when you’re there and when you’re not. I don’t…