Journalism of Courage
Noted pianist Leon Fleisher locks himself up in his studio for hours. Bowing over the large instrument,he caresses the keys with sometimes his one hand,and sometimes with both. Fleisher,who turned 85 this month,suffered from focal dystonia nearly five decades ago. But now,the Baltimore-based pianist is once again able to use his right hand,with the help of medication and treatment.
Classified as a neurological movement disorder,dystonia involves over-activity of specific muscle groups that cause involuntary movements,tremors and abnormal postures. This condition can affect mobility,as well as the possibility of performing daily activities effortlessly. Those with widespread dystonia also feel stigmatised as suffering mental illness or mental retardation. Lack of awareness about the disease can lead to frustration,anxiety and even depression among these people. Doctors say one in every lakh people in India suffer from this disorder.
He adds that a lack of awareness can lead to wrong diagnosis. It is not a life-threatening disorder; understanding the condition and the latest available treatment for dystonia is the key to dealing with this disorder, he says.
How dystonia affects the quality of life depends on the body part being affected,and the severity of the muscle contractions involved. Though doctors say that there is no complete cure for dystonia,there are many widely-used treatments that can help control the symptoms to a large extent so that the patients quality of life can be improved. They emphasise that treatment for every person with dystonia must be decided on the basis of the severity of the condition.
Balasubramaniam said that drug therapies,surgeries and deep brain stimulation (DBS) to treat dystonia. Most medications work by affecting the neurotransmitter chemicals in the nervous system,which signal the brain for muscle movement. Botulinum neurotoxin,a biological product,is directly injected into the affected muscle, which helps in relaxing the muscles and reducing contractions, he said.
Doctors say that surgical treatments are an option for those who do not respond to oral drugs or medicated injections. Surgery
involves the cutting of nerves in
the spinal cord (rhizotomy) or
removal of certain parts of the
brain (pallidotomy).
DBS is also a surgical treatment in which two electrodes are implanted into the brain to deliver electrical pulses and block signals that cause disabling motor symptoms. Doctors say that it helps many patients achieve greater control over their body movements. The therapy also requires a surgically implanted pulse generator or battery device called a brain pacemaker or a neurostimulator,which is similar to a cardiac pacemaker to deliver continuous electrical stimulation through electrodes. Balasubramaniam says,DBS is essentially used to control twisting,uncontrolled muscle movements,spasms,posture and involuntary contractions.
