- Posted June 19, 2013 by
This iReport is part of an assignment:
Impact Your World
I made a joke when my neurologist handed me a small overly copied paragraph taking up about 2 inches of an entire sheet of printer paper. "Dystonia? Is that near Russia?" At the time, I thought I was quite clever. It took eight months for me to be handed that piece of paper and three years later, the "joke" I made makes me cringe, as I've heard the cliche quipped now by so many whom have never heard the word.
At 37 years old in 2009, I was a licensed massage therapist with a four week waiting list and long time Yoga instructor. I thought I had heard, learned and seen just about every physical issue a body could have. While shopping with my mother the day after Christmas, my left leg began to throb with searing pain. After my instinctive attempts to "heal" myself with what I knew best - acupuncture, chiropractic, craniosacral therapy, energy work and massage, I caved into Western medicine and became plied with pain killers, steroid injections, nerve pain medications and muscle relaxers for a mysterious but seriously incapacitating leg pain.
So...time kept passing. Clients, students and most friends gone, bruises from falls decorating my legs, 30 lbs of muscle vanished from my body and "it" began. My left knee was turning towards my right leg. My femur felt like it was going to pop right out of my hip socket. I couldn't stand the sensation of fabric on my skin because it seemed on fire. After eight months of procedures, medicines and tests, my current neurologist took a look at my twisting leg, left the room and came back with that piece of paper that changed my life forever.
So What and Where is Dystonia?
Part of me wants to write, "Look it up". I've gotten tired of explaining it to glazed over eyes, from strangers, family, friends and unfortunately, most often...my OWN doctors.
It is the THIRD most common neuromuscular disorder in line behind Parkinson's Disease and Essential Tremor, all without a known cure. I will tell you what else it is. UNHEARD OF. Complex, under-funded, under-researched, misunderstood, devastating, painful and relentless. Everyone's dystonia is as individual as the person. Dystonia can be an inherited disorder or a condition with no other factors involved (Primary), a symptom or cohort of another neuromovement disorder (Micheal J. Fox is known for his battle against Parkinson's Disease, but he also has dystonia), acquired by head trauma or drugs to treat other neurological issues, lack of oxygen at birth (Secondary)...and so the complexity ensues. Right now there is no cure. It is treated with anti-seizure meds, anti-spasm meds, pain meds, Botox and DBS (Deep Brain Stimulation). To date there are twenty genes that have been discovered through research. Each gene changes the way dystonia presents itself in each person affected. From birth, early onset, late onset, Focal (like writer's cramp, Charles Barkley's golf yips) Generalized (all over the body wherever a muscle exists except soft muscle like the heart and bladder), affecting just the eyes which is called blepharospasm, vocal chords or the most common being CD, Cervical Dystonia. The brain tells muscles to spasm. Twitchy spasms, constant contracted muscle spasms, however a spasm can occur it does and will, whenever "it" wants, in episodes (paroxysmal) or constant...and guess what? I have all of the above types. There are sometimes triggers for some of these special events when my brain wants to "party". We call those times "storms" or others might call them flare-ups. Stress, hormones, fatigue, weather, fluorescent lights....Wal-Mart.
Textbooks describe a "fixed" or completely stuck hand or hockey stick foot, or a head glued to the shoulder...mine likes to get around. Mine gets bored hanging out in one place for too long and that confounded the "specialists". I don't fit in the box. The Parkinson's meds "they" give in the usual regimen all made me worse, caused me to lose partial memory for a year of my life, lose my ability to think, write, draw, spell and I drooled on myself, contorted in bed for months. Botox, a poison that paralyzes muscles so they can't spasm, made me incredibly sick. By this time, I'd lost 51 lbs. Naturally, since I responded horribly to drugs that help many of the hundreds of thousands afflicted, deemed me "atypical". It's all in my head, (yep, the basal ganglia), therapy will cure it, how about a surgical implant of anti-spasm meds? After refusing "brain" drugs a year ago, I've regained my ability to think and spell, and create (I'm an artist, too, so kind of important to me). I'm slowly getting worse. I can't die from it, it isn't fatal, but there are days that feel like I've been given a life sentence.
I have been told to “stop playing Doctor”. I have to tell them what Dystonia is and they don't like it. I have been told I cannot have dystonia in the diaphragm by different Pain Managers and even neurologists. The first time I quickly printed out a description of “axial dystonia” describing spasms in the muscles between the ribs and also the diaphragm. He fired me by certified letter saying if I wasn't happy with practice, I could move on. This is a sad but true thing that most dystonia sufferers have to do. We provide the proof and neurological research so that we are not discounted or told we are mistaken, making it up or playing doctor with our own “theories”.
I became intent on helping so many others without educated or supportive general practitioners, neurologists, pain managers, I created an online support group on Facebook called Neuronauts. We have over 620 members from around the world, representing all neurological movement disorders and their “friends”, anxiety, chronic pain, depression, and even PTSD. Sometimes we grieve for our “old selves” but mostly love and support each other in the present no matter the issue.
My Life Now
I have gained weight. I have been deemed “permanently disabled”, diagnosed with Generalized Dystonia, I have a power chair as my ankles can no longer support the angles of my legs. I have a service dog to help me nervous system overload, she alerts me to situations that are bad for my mind and body. Everyday is painful, the constant being legs, feet, and spasms in my upper back. Otherwise, every day is a mystery as to where my brain will decide to misfire into my one of my body's “neighborhoods”.
Writing about dystonia is not easy. It's just not an easy subject. Writing about it is easier than living with it, but to truly write...not just say what it is or make it digestible for the layman...pretty hard. My goal for making the support group was to create a space to be real. Dystonia isn't just symptoms, body parts, genes and drugs....it's our lives. I'm not saying we have to "own" it, or not laugh about it, or not keep our chins up. If it sounds like that's what I'm saying, then I'm not coming across well or I'm being misunderstood. What I'm saying is....I gotta be real. Writing a personal story while creating awareness and to be inspiring and hopeful makes others feel good. Of course I want that. But how real is that for me? You know what's real and inspiring and hopeful to me? The group. Not dystonia. It's the hundreds who share their pain, stories, laughter, tears, while reminding me I am not the only one not finding treatments, understanding from friends, family or doctors who aren't even up to speed on the world's third largest neuromuscular disorder. So I trip and fall, get back up, then drop something I'm trying to hold. I make myself consciously breathe when my diaphragm is being told to suspend the breath, try to see inside myself when my eyes won't open and when my face is stuck, I smile from my heart. That's the one good thing. Dystonia doesn't affect the heart and its really all I have left.