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...]
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...]
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...]
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...]
Getting through seemingly simple, everyday tasks can feel downright impossible when facing flare-ups of disease affecting the central nervous system. Battling the bottomless pit of fatigue, it might take an hour just to drag yourself from of the warm womb of your bedsheets. When balance is questionable at best, it might be your greatest accomplishment of the day to move from the bed to the couch. … [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...]
I am super jazzed to announce that I will be attending the Accessible Yoga Conference in NYC at the Integral Yoga Institute NYC on May 19-21 of this year! The aim of the Accessible Yoga Conference is to provide education, supportive resources and community for those who seek to increase the accessibility of yoga to meet the needs of people with disabilities and chronic illnesses, seniors, and … [Read more...]
It would be an unequivocal understatement to say that the month of January has been a momentous one for me in my health journey. It was during the second week of January some 17 years ago, when I got into the bike-car accident that resulted in muscle tears, bone bruises and a vicious cycle of chronic pain, insomnia and stress that eventually triggered the full-blown manifestation of autoimmune, … [Read more...]