Patients Discuss how they are Benefiting from New Funding of Bachmann-Strauss Dystonia & Parkinson’s Centers of Excellence
Source Newsroom: Bachmann-Strauss Dystonia & Parkinson Foundation
Newswise — (New York, N.Y. – December 6, 2013) What do a chicken farmer in Alabama, a new bride in California and retired insurance executive in Florida all have in common? They are all benefitting from new Centers of Excellence established by the Bachmann-Strauss Dystonia & Parkinson Foundation to advance the research, diagnosis and treatment of their debilitating movement disorders.
James Edward, the fire chief of the Alder Springs Volunteer Fire Department and chicken farmer in Aldersville, Alabama had been suffering from neck pain that no one could explain. He first felt its full effects during the tornado outbreak that hit his town in 2011.
"The pain came on suddenly. I thought I pulled a muscle. It took me a year and a half to be diagnosed with dystonia, which I had never heard of before. Edward, who is 39, was diagnosed by a cervical chiropractor, after failing to be diagnosed by his physician and after undergoing several treatments by other chiropractors, which made him feel worse. "When I walked into Dr. James Brigg's office, he took one look at me and said, "how long have you had dystonia? I said what is dystonia?"
In fact, dystonia, which affects as many as 500,000 people in North America, is a movement disorder that causes the muscles to contract and spasm involuntarily. The involuntary muscle contractions force the body into repetitive, often twisting movements and awkward, irregular postures. It can affect the hands, feet, neck or other parts of the body. It may be genetic in origin or appear spontaneously, and dozens of diseases and conditions include dystonia as a major symptom.
Dr. Briggs told him that he could help him but that he needed to see a specialist at the University of Alabama at Birmingham (UAB) Comprehensive Parkinson Disease and Movement Disorders Clinic, one of three new centers awarded $1.2 million in matching grants to establish Dystonia and Parkinson’s Disease Centers of Excellence by The Bachmann-Strauss Dystonia & Parkinson Foundation. (The others new centers are at the University of Florida (UF) and the University of California, San Francisco (UCSF). The new centers will join the existing Bachmann-Strauss Dystonia Center of Excellence at Beth Israel Medical Center in New York City.
Dr. Briggs went with Edward to meet with Natividad P. Stover, M.D., a neurologist who is on the staff of the Center and an assistant professor at UAB. "She taught me a lot about the illness and gave me relief through Botox injections and referred me for physical therapy as well," Edward said.
“Dystonia has several forms and may be hereditary or caused by factors such as physical trauma, infection or reaction to a pharmaceutical, however most cases have no known cause,” said David G. Standaert, M.D., Ph.D., professor and chair of the UAB Department of Neurology. “Treatment is difficult and has been limited to minimizing the symptoms. At present, there is no cure. And unlike, Parkinson's or Alzheimer's patients, the dystonia brain looks normal, making diagnosis difficult, " Standaert said. In fact, the only blood abnormality that Edward's doctors found was high cholesterol. "No one could find any reason for my pain, which only added to my frustration, " Edward said.
Today, Edward sees both Dr. Stover as well as Dr. Briggs on a regular basis. "I am close to living my old life and can do my normal activities, but I restrict myself to administrative duties as a fireman, " Edward said.
The UCSF Movement Disorders Center is an internationally recognized, multidisciplinary team of neurologists and neurosurgeons specializing in the medical and surgical treatment of movement disorders. The Center was recognized as a Bachmann-Strauss Dystonia and Parkinson’s Disease Center of Excellence this year.
“We’re leaders in the field of deep brain stimulation (DBS), a procedure in which electrodes are implanted in the brain to provide therapeutic benefit,” says center director Jill L. Ostrem, M.D. “We’ve been offering DBS since 1998 with excellent outcomes. The new Bachman-Strauss Center allows us to combine our neurological expertise and the skill of UCSF’s acclaimed Department of Neurological Surgery under Dr. Philip Starr in an impactful and revolutionary way” a surgical procedure used to treat a variety of disabling neurological symptoms including Parkinson’s disease and dystonia.
Deep brain stimulation uses a surgically implanted, battery-operated medical device. This neurostimulator—similar to a heart pacemaker—is approximately the size of a stopwatch. Deep brain stimulation helps to relieve the debilitating symptoms of Parkinson’s disease, such as tremor, rigidity, stiffness, slowed movement, and walking problems. DBS has been used for many years for Parkinson's disease, but has only been recently used to treat dystonia.
One of Dr. Ostrem's patient's was Sarah Holmes, a 21-year-old woman, who lives in Rescue, California. Sarah has had dystonia since she was nine years old. Her first symptoms were in her right foot, but spread quickly and soon she had difficulty walking and needed a wheelchair for long distances and trips to the supermarket Sarah underwent DBS surgery when she was 11 and Dr. Starr was her surgeon. She said the results have been nothing short of a miracle.
"I just got married last year," Holmes said. "When I was a little girl, I dreamed of walking down the aisle on my wedding day, but never thought it would be possible with my symptoms. DBS made it possible." Holmes said that although the dystonia has spread to other parts of her body she is practically symptom free thanks to DBS. She is able to adjust the strength of the stimulation as needed.
"I can do most anything now, Holmes said. "No one but me knows I have dystonia. I realize that DBS does not help everyone but for me the results have been dramatic. I tried every medication that was available and none of them worked. I prayed for a miracle and got one. I can lead a normal life."
It did not take long for Greg Barstead's doctors to diagnose the cause of his symptoms. The 59-year-old former insurance executive has early-onset Parkinson's disease." The symptoms of Parkinson's disease are well known to physicians. I was diagnosed in 2003. For the first 5-6 years of my illness I had minimal symptoms. I am still fairly functional but I know that the disease will progress."
Barstead was the president of Colonial Penn Life Insurance Company which is based in Philadelphia and offers life insurance and other financial services. Barstead, who retired on disability and now lives in Tallahassee, Florida also has dystonia, which affects his neck and shoulders.
Parkinson's disease is a chronic, progressive neurological disorder whose symptoms include tremor, stiffness, difficulty moving, and problems with walking and balance. According to the National Institutes of Health, Parkinson's disease affects about 500,000 people in the United States although many believe the numbers are higher. Approximately 40% of patients with Parkinson's disease develop dystonia. For reasons that scientists have not been able to determine, dystonia is more common when the onset of Parkinson's disease is at a young age.
Barstead initially received treatment at the Parkinson's Disease and Movement Disorders Center at the University of Pennsylvania Health System. While there, Barstead was deemed a good candidate for deep brain stimulation. Barstead, says that DBS has been helpful for both his Parkinson's and dystonia symptoms. "My shoulder is a lot less stiff and my neck hurts less."
He now receives treatment at the University of Florida Health Center for Movement Disorders and Neurorestoration, a leader in movement disorders and neurorestoration, and where patients travel from all over the globe for personalized treatment. Under the direction of Michael S. Okun, M.D., the center provides much needed multidisciplinary care to dystonia and Parkinson’s patients, bringing together neurologists, neurosurgeons, psychiatrists, genetic counselors, physical therapists and other experts.
Barstead says he keeps an optimistic eye on the future and one foot grounded in reality. "I know that my symptoms will progress, but am hopeful that there will be new treatments that can cure both Parkinson's disease and dystonia. In the meantime I do what I can to arrest the symptoms. I exercise including stretching and lifting weights and using a stationary bike. I also find that keeping my stress level at a minimum is helpful as well."
About the Bachmann-Strauss Dystonia and Parkinson Foundation
The Bachmann-Strauss Dystonia & Parkinson Foundation is an independent, nonprofit, 501(c)(3) organization that was established in 1995 by Louis Bachmann (1916-2000) and Bonnie Strauss in order to find better treatments and cures for the movement disorders dystonia and Parkinson’s disease, and to provide medical and patient information. The Foundation is the leading organization actively looking at the interface between dystonia and Parkinson’s disease. Key among its efforts, the Foundation funds scientific and clinical research and helps raise awareness of dystonia and Parkinson’s disease among the general public and the medical community.
To date, The Bachmann-Strauss Dystonia and Parkinson Foundation has given $15 million to seed 235 research projects. The scientists involved were able to leverage that funding to secure an additional $62.5 million from the National Institutes of Health. For more information please go to: www.dystonia-parkinsons.org.