It seems trivial to write about a rare brain disorder when all around us there are natural disasters, people struggling to salvage their homes, pictures of hate and violence consuming the attention of today’s media and a tumultuous political environment but I feel obligated in recognition of dystonia awareness month to share some thoughts, hopes, dreams and the wonders of this misunderstood and misdiagnosed movement disorder. I also want to represent the dystonia community and give Hope to all that anything is possible!
What is Dystonia?
Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may “overflow” into adjacent muscles. Dystonia is classified by: 1. clinical characteristics (including age of onset, body distribution, nature of the symptoms, and associated features such as additional movement disorders or neurological symptoms) and 2. Cause (which includes changes or damage to the nervous system and inheritance). Doctors use these classifications to guide diagnosis and treatment.
There are multiple forms of dystonia, and dozens of diseases and conditions may include dystonia as a symptom. 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 that no fewer than 300,000 people are affected in the United States and Canada alone. Dystonia causes varying degrees of disability and pain, from mild to severe. There is not yet a cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.
Although there are several forms of dystonia and the symptoms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions. Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. Dystonia Medical Research Foundation website
I have dystonia and have been living with it since surviving an accident on 9/25/01. Diagnosed in the Spring of 2003, I’ve tried all forms of treatments including botox injections, medications (too many to list) psychological evaluations, physical therapy, faith healers, herbal medications, every diet on the planet, experimental brain surgery, and combinations of all the above – There is no cure and different modes of treatment help some but not all. Doctors, scientists and researchers have discovered many genes and different types of dystonias but still looking for the Holy Grail = A Cure!
Deep Brain Stimulation: is a treatment for dystonia where the doctor drills a hole or holes in your skull and implants electrodes in the base of the brain. These electrodes are then connected to a wire that runs down the neck and connects to a pacemaker (battery) in the chest area. This procedure can take as long as 10 hours (patient is awake). In my case I underwent the procedure in 2004 (Experimental by FDA standards) at the Cleveland Clinic while being filmed for the PBS documentary “Twisted”. My pacemaker battery had to be replaced each year for 10 years, the last resulting in brain infections, intestinal infections and a blood clot. After 2 more brain surgeries in 2014 and 2015, I was given a rechargeable 8-10 year battery. I charge my battery 10-20 minutes per day, hence the blog name “Battery Powered Person”.
Dystonia affects each person differently. In my case the right side of my body is symptomatic. The cramping, spasms, contractions and painful postures can be debilitating, however, invisible to the general public. dystoniacs have a way of hiding, masking, and using tricks/cues to slow down and hold the symptoms in check which are not only embarrassing but painful. I’ve become a master at these (holding the head; touching the cheek, ear, chin; wearing a baseball hat (Which also covers the huge scars and holes) raising or slapping hands and/or feet; constantly adjusting posture, neck head are just a few in the arsenal. Exercise is also a method to curtail symptoms, albeit brief.
Exercise and dystonia: This topic is under scrutinized debate because exercise is the fire that ignites the wrath of dystonia which ultimately exacerbates the symptoms. I’ve discovered that bouncing/squeezing a tennis ball while running slows down the avalanche of pain and spasms. An innocent fetch with the dog sparked this discovery and started a one block jog to a half marathon and hopefully the NYC Marathon on Nov. 5th.
After completing a 10 mile race this past weekend in Dewey Beach, I was asked by several people about the tennis ball. “You showing off”, “How many times did you drop the ball”, “What’s the deal”, “Is that to prevent boredom”. Some people get upset, some laugh, some stare, some encourgae but it’s hard to stop and explain to everyone. I bounce/squeeze a tennis ball because it slows down the spasms and prevents me from losing my balance and falling. It doesn’t make running easier. The first 2-3 miles are complete torture because of the painful spasms, twisting and cramping but something magical happens if I can fight through this . Whether it’s the rhythmic bouncing of the ball or the swinging arm motion along with the breathing cadence or all three, there’s a slight reprieve of dystonia that lasts for several miles. This is my running drug! Imagine your body in a vice grip and twisted for most of the day and suddenly there’s a brief respite – That’s what I feel!! Something even more magical occurs after the race, I go through a period of no dystonia. This euphoric feeling lasts between 10 -30 minutes (Probably a combination of runner’s high and endorphin rush). However, it all comes crashing down when the stress of exercise awakens dystonia and it’s ready to attack again. The day after is extremely challenging but there’s always the hope and excitement of taking that running drug again!
Swimming is the most pleasant exercise for dystonia because the water buoyancy alleviates most of the pain while biking is the most painful. Which begs the question, why exercise and go through the pain? Answer: It hurts more not to try than it does to exercise plus the brief escape is the rainbow that I keep chasing and I still dream of a life where dystonia does not exist.
Dystance4dystonia is affiliated with the Dystonia Medical Research Foundation and helps promote awareness, gives hope to those afflicted, and raises funds for research so a cure is in the near future! I’m participating in these races to help the foundation, ignite the dystonia community to action, and challenge myself to stay motivated, active, and test the boundaries, if any, of dystonia.
This year we will not be having our annual Help Find A Cure 4 dystonia Benefit which has raised over $191,000.00 for the DMRF. I was invited to join the team of runners for the NYC Marathon which grants admission to the race as long as the participant raises $2500 for their charity (Dystonia Medical Research Foundation). I will “Run For Those Who Can’t” on November 5th bouncing the tennis ball and raising awareness about dystonia!!