Hurry up and wait has become the tireless refrain running through my brain as of late, ever since I restarted the deep-dive investigation into a medical mystery that has haunted the lion’s share of my adult life. You’d think that this 20-year adventure would have fully schooled me in patience. Yet, while this arduous journey has absolutely made me more resilient, relentless, and resolute, being … [Read more...]
Ten years a slave– To tangled limbs And a torquing spine, To a broken medical system And neural network gone offline Ten years an observer– Of the quirky, jerky movement of a marionette Compensatorily adopted two decades ago After a bike/car accident left my Body and soul bruised and bowed Ten years a student– Of physiology and the human mind; Acquiring an armchair PhD In … [Read more...]
Two months ago, my life with dystonia ‘got flipped turned upside down’ and i’ve been on a rollercoaster ride of recovery from it ever since. Seemingly overnight, my plush California King-sized bed transformed into the terrifying setting for violent contortions that wiped me out for much of the next day. Accompanying this sudden change, the sights that normally inspired me as a writer and the … [Read more...]
This humble, human vessel I call my own always seems to be brimming over with an abundance of gratitude this time of year. As a December baby, the first day of New Year on the Gregorian calendar shortly follows my own completed rotation around the sun. As a result, the final month of the year becomes an extended period of personal reflection, retrospection and appreciation for the experiences and … [Read more...]
This Saturday, my husband and I are heading to Roger Williams Zoo in Providence, RI, for the very first time, and I can’t even explain how much I’m looking forward to this unique experience. It’s been more than a decade since I last visited a major zoo, but getting the chance to have close-up encounters with snow leopards and giraffes isn’t the main reason that I’m itching to get to Providence. … [Read more...]
Dr. Joaquin Farias, a leading specialist in treating dystonia, has been helping people with this debilitating movement disorder to recover control over their brains, bodies and lives for more than 20 years. As a featured speaker at the 2018 international conference on Movement: Brain, Body and Cognition, held July 27-29 at Harvard University School of Medicine, he gave an enlightening talk that … [Read more...]
At age 60, Bob Kuhn decided to tackle the 50cc Quest, driving his motorcycle 3800 km from San Diego, Calif. to Jacksonville, Fla. in just over two days. In a recent TEDx Talk, the lawyer, who lives with the neurodegenerative movement disorder called Parkinson’s, explained why he decided to take the grueling challenge to cross the United States in 50 hours or less. “In one word: Adventure," he … [Read more...]
Yesterday, I had my first neurologist’s appointment of 2018. After eight years of living with the diagnosis of the neurological movement disorder dystonia, it amazes me just how far I have come. From countless falls every time I tried to walk each day and needing to use wheelchairs and scooters in public, I now find myself able to get through a thorough neurological exam under fluorescent lights … [Read more...]
The season of giving kicks off today with #GivingTuesday, an annual philanthropic movement powered by community collaboration and driven by social media campaigns. Celebrated on the Tuesday following Thanksgiving, Giving Tuesday was founded in 2012 by the Belfer Center for Innovation & Social Impact in New York City to celebrate compassionate service and to encourage individuals to connect and … [Read more...]
After three weeks of feeling beaten down and out of sorts from an upper respiratory infection, I thought I was in the clear–as far as dystonia is concerned. My arms had been feeling like they were on fire from a neuropathy flare-up, but my muscles were still cooperating with my brain, which is always greatly appreciated. In the midst of that period, I’d even been able to drive to visit my friend … [Read more...]