June is Dystonia Awareness Month and neurologists say they want more people to know about the rare disease which is often misdiagnosed. NY1's Cheryl Wills filed the following report.
John Davis, 45, was diagnosed with Dystonia when he was 13 years old. Dystonia is a neurological disease that causes involuntary contractions of muscles.
"It kept progressing until about a year ago, I could almost not stand up and walking was very difficult," recalls Davis.
Medications stopped working and Davis decided to undergo a brain operation where doctors implanted a medical device in his brain that sends electrical impulses to specific areas to stop involuntary movements and it worked.
"Two batteries, they go up my neck, two plastic caps, titanium screws right there in my brain," explains Davis.
John Davis not only walks well but he's also back to biking, specifically for an annual event called "Jake's Ride", named for Jake Silverman who was diagnosed with early onset childhood dystonia. So far, the ride which benefits research has raised more than $1 million for the rare disease that affects about 500,000 Americans.
"Even some doctors are not that familiar with it, where even at the onset of certain symptoms it can be misdiagnosed," says Dr. Naomi LuBarr, a neurologist at Beth Israel's Bachmann-Strauss Dystonia Center of Excellence.
There are many different types of Dystonia but general symptoms often begin in childhood and can include facial or jaw spasms, stiff neck, jerky head movements, cramping of hands and difficulty walking.
While deep brain stimulation worked for John Davis it is not appropriate for all types. There are also medications that can alleviate some symptoms but there is no cure.
To learn more about the Bachmann-Strauss Foundation's efforts to fund research, visit www.dystonia-parkinson.org or call 212-682-9900.