Too often, I find myself apologetic over hurdles that come with Dystonia: I’m sorry it’s difficult to understand me…I can’t walk across the park…I need more time to finish this form. Worse are the silent apologies I make to myself. Why do I perpetually raise excuses for my condition as if responsibility for this annoying hoopla falls squarely on my shoulders? I possess greater control over my runaway temper than my speech or my stride. Dystonia arrived as an intruder on my doorstep, robbing me of some of my dearest possessions: clear speech, even gait, smooth handwriting, contraction-free enjoyment of life.
The perpetrators of this medical crime lurk deep inside my brain committing all kinds of chemical mischief. I’ve participated in a bunch of “line-ups” – ironically, I’m the one who’s scrutinized – but while a culprit surfaces in a blood test, the actus reus can’t be captured in a pretty picture and my “head shots” are dead-end streets. We know Mr. DYT1, my uninvited houseguest, orchestrates a mutant ninja protein – Torsin A – who’s ostensibly a key player in a conspiracy of neurological proportion involving a perplexing hoist of my brain with a modus operandi stumping even the most seasoned investigators. To complicate matters, a host of suspect genes orchestrating their own villainous behaviors are implicated in different forms of Dystonia.
On the bright side, I function as my own “neighborhood patrol,” doing my best to combat an ongoing bodily offense. I undertake every effort to keep the crime labs busy, proffering skin and blood samples, funky PET scans, functional MRIs…accompanied by eyewitness accounts of the damage inflicted on my landscape. Meanwhile, I remain a walking crime scene apologizing for acts I can’t explain. Perhaps my amends are best bestowed on the objects of my temper…
Posted in Health, Life
Tagged Conditions and Diseases, Dystonia, DYT1, Genetic disorder, Genetic mutation, Involuntary movement, Medical research, Movement disorder, Muscle contraction, Neurological disorder, Torsin A
Nothing like a massage to tense up those muscles!
Now, I’m not talking about a rough and tumble sports massage but one of those coveted Swedish gigs that cost upwards of $150 at a fancy spa…
During breakout sessions at a patient symposium, a massage therapist offered her services to our group, hoping to bestow a haven of relaxation. She was utterly baffled by the dearth of volunteers for a free massage until I explained how our muscles react to stimulation. After all, I port a history of educating massage therapists about the Mexican jumping beans in my legs at the touch of their fingertips.
Aaaah, we achieved clarity. Perhaps she could work on locations that relieve sinus congestion, avoiding contact with my upstarts. Didn’t do much for my aching muscles but I went home breathing easy!
Posted in Life
Tagged Chronic illness, Chronic pain, Dystonia, Health, Massage therapy, Movement disorder, Muscle, Muscle contraction, Neurological disorder, Relaxation, Spa, Swedish massage
Menstrual cramps, stomach cramps, leg cramps, we’ve all had them in one form or another. Take an Advil and if they persist, call the doctor in the morning…
If you’re otherwise free from movement disorder, those cramps are about as close as you’ll get to a dystonic movement – you’re experiencing nothing less than an involuntary spasmodic muscle contraction, painful to boot. Surprise, Dystonia isn’t quite the unfamiliar territory you thought!
In a devilish merger, my foot cramps are a case of ordinary cramp meets DYSTONIC FURY. I may observe a lift of toe or turn of arch but the real craziness is the frenzy I can’t see, daring me to halt this out-of-control party. Fortunately, I’m not without experience handling these matters, tending to strike without warning. Pressure is required to quiet my visible movements and initiate a dig into the hidden turmoil…
Springing from my bed, I channel my inner bunny and hop like mad in a resolute attempt to pound the insanity out of my muscles. Often, we go several rounds before the knock out punch is delivered but I’m ever grateful for my victory!
Posted in Life
Tagged Chronic pain, Cramp, Dystonia, Health, Humor, Movement disorder, Muscle, Muscle contraction, Neurological disorder, Positive thinking, Rabbits