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...]
Seeking the Road to Recovery When Eyes Cannot See Clearly
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...]
She’s Climbing the Stairway To Steady Health
Nine months ago, when my husband and I were moving into the three-story condominium we’re currently renting, I was more than a wee bit concerned with how I’d navigate all those levels. My office would on the top floor, with our bedroom, main bathroom, and laundry beneath me. Two flights of stairs stood between my desk and the kitchen sink, and the ground floor led down another flight of stairs to … [Read more...]
A Sensory Retrospective of Gratitude on a Sleeper of a Year
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...]
Riding the Body’s Ebbs and Flows: The Bumpy Road To Recovery After A D&C
A month ago today, I went under anesthesia for what is misleadingly classified as a minor surgery to try to get to the bottom of abnormal bleeding from my lady parts. In between two trips and pre-op appointments with both my gynecological surgeon and my primary care doctor, I spent most of October preparing for a surgery that I suspected would affect me more than the average bear, as most … [Read more...]
Taking Back Control Over My Moving Limbs at Dystonia Zoo Walk Providence
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 Farias Reveals How to Recover Control Of Our Brains and Bodies to Redefine Thriving With Dystonia
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...]
Bob Kuhn Chooses An Attitude of Adventure and Optimism To Face The Challenges of Life With Chronic Illness
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...]
Moving into a New Normal of Living With the Movement Disorder Dystonia
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...]
Novocaine Knocks You Out
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...]