Some random thoughts in regards to the definition of dystonia and the mispelling of the phonetic spelling in relation to the first three letters (distonia & dystonia).
The definition of dystonia according to a recent publication in the 2012 Annual Report, Turning Promises Into Progress:
dystonia is a neurological movement disorder that causes involuntary contractions and spasms. These involuntary contractions force areas of the body into abnormal movements and awkward postures. dystonia may affect a single body area or be generalized throughout multiple muscle groups. dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest no fewer that 300,000 people in the US and Canada are affected. dystonia causes varying degrees of disability and pain, from mild to severe. Although treatments exist, dystonia remains a chronic disorder for which there is presently no cure.
Dyskinesi- impairment of voluntary movements resulting in fragmented or jerky motions (as in Parkinson’s disease) — compare tardive dyskinesia – Websters Dictionary
Disease – what was once called a brain disease, and once thought to “psyhological disorder” – “stress related brain problem” – “brain disorder” – “brain symdrome” and many others has since evolved into the namesake of “neurological movement disorder”.
Disturbing – The obvious but what a non-dystonic doesn’t realize how difficult it is to travel, especially flying and driving. Flying is one of the most powerful accelerators of symptoms because there is no stability for your body when in flight. Your body is a human yo-yo with rubber band strings just aimlessly bouncing about. The challenging times come after the landing when your body responds by attacking the muscles that were in shock waiting to engage and/or disengage. Driving is an adventure especially when turning and approaching intersections, your eyes are going in one direction and your brain is directing your body all over the place. I found it useful to bite down on the seat belt to keep my head from twisting but the disturbing challenge is when your fingers and toes curl inside causing cramping and uncomfortable postures – must resort to banging the steering wheel and/or the floor to stop the spasticity.
Distance – I have found the distance in separating myself from family, friends and social situations when dystonia is at it’s peak or “An almost good day”. This distance is needed both selfishly and selflessly.
Disguised – Trying to live with dystonia and coexist sometimes takes a disguise. By disguise I mean learning how to disguise your symptoms not for fear of being stared at or made fun of but avoiding the pain, spasms, and uncomfortable postures that exist in everyday activities. A simple task such as going to the store takes planning and a pre-meditated psyche up because the life-stressors which attack dystonia are everywhere and can instantly set off a nightmaric episode. A prepared dystonic dsisguise is a bag of tricks (Wearing a hat to adjust and touch to slow down tremors in neck, carrying a tennis ball to squeeze and hold when fingers start to cramp up, stomping of the foot to alleviate the lead foot or toes curling under, the constant shrugging of shoulders and elongating the posture of your spine and gait to stop the abdomen from contorting one’s body, carrying a cell phone as if talking to someone only to slow down the tricep/shoulder/neck/face/back tremors/spasms etc. and pressing the phone on affected parts of the body to divert dystonia’s attention) are just a few of the many tricks to disguise a dystonic attack.
Dysthari – “difficulty in articulating words due to the disease of the central nervous system” This I just discovered when scanning the dictionary and can relate partly due to dysphonia (form of dystonia that affects the vocal chords) and deep brain stimulation programming which significantly affected my speech causing a stutter and low volume but needed to control other parts of my body = catch 22?
Discomfort – Finding comfort is one of the 24/7 daily challenges and it changes just as often. Some find it lying flat, sitting in a comfortable lazy-boy chair, yoga, etc… Mine is swimming – but it takes at least 15-20 minutes to get the rhythmn of comfort and finding the zen of buoyancy/exercise/breathing and continuing this trifecta in harmorny is a savior in surviving.
Discovery – My Favorite: This is where you discover how to live/cope/survive despite any dystonia setbacks/challenges/obstacles. Swimming with one neurostimulator (brain pacemaker/battery) on and one off and only using your legs is my salvation. Running while bouncing a tennis ball in stride – discovered while playing fetch with my previous Dog, Cali (Living At The Rainbow Bridge). Using left hand for most if not all fine motor skills (Right Handed) due to dystonia and/or deep brain stimulation. “I type because I cannot write” from the pamphlet of the 2009 Children’s Symposium in Chicago = Holds true for me.
Disillusionment: The art of being thin because of dystonia or the disillusion of both?: This is one of the positive side bars of having dystonia because with the constant twitching/firing of muscles, contractions/spasms, etc… and the constant fasiculations in my leg muscles (Great conversation piece if someone is staring at my calves – which never happens but thought I would throw it out for just saying purposes, the aforementioned statement at the beginning of this run-on sentence holds true. What is a fasciculation? definition below.
Fasciculation: Involuntary contractions or twitchings of groups of muscle fibers.
Fasciculations can occur in normal individuals without an associated disease or condition, or as a result of illness, such as muscle cramps, nerve diseases, and metabolic imbalances.
So with that being said, dystonia is alive and well and thriving in it’s namesakes and daily discoveries!