Columns

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…

I’ve always been an analytical person. For as long as I can remember, I’ve catalogued data about my life, creating charts that visually represent how I’m performing at work or whether I’m achieving my fitness goals. I believe this type of information will equip me to better handle the future.

When my husband, Arman, was diagnosed in 2009 with early-onset Parkinson’s disease at the age of 38, I learned everything I could about it. I purchased every book I could get my hands on and searched the internet several times a day. I educated myself about the…

Parkinson’s disease creates midbrain damage that can hijack your life. To decrease the intensity of such brain-stealing experiences, I’ve found that insight meditation, which requires sanctuary, solitude, and proper intention, is very helpful. I visualize working around the midbrain damage as a sacred process. That’s the intention…

According to the National Organization for Rare Disorders, rare diseases affect over 300 million people globally. That seems huge, but it encompasses over 7,000 different rare disease communities. In the U.S., a rare disease is defined as one that…