paula schneider was 38 when she developed what doctors first thought was carpal tunnel syndrome. But soon the trouble she had moving her right arm spread to her neck and back and then her whole body. She lost control of her limbs, head and torso, leaving her unable to walk, sit, eat or do much of anything. It was as if her entire body had been inhabited by jitterbugs that determined her every move.

“I couldn’t eat like a normal person, brush my teeth or drink from a glass because it would break when I tried to put it down,” Schneider recalled recently at a demonstration on movement disorders at Beth Israel Hospital in New York. The cause, she eventually learned, was a severe movement disorder called generalised dystonia.

Various medications helped for a while. So did multiple localised injections of Botox to disrupt the flow of nerve impulses to muscles that were spastic or excessively contracted. But the benefits were limited and short-lived. She said she spent 12 years in excruciating pain. Then, in July 2001 at age 52, Schneider began to get her life back. Electrodes were surgically inserted in her brain and attached by wires to two pacemakers implanted in her chest. Awake during the procedure, she was able to tell the neurosurgeons when they had found just the right spot to place the electrodes.

The “reprogramming” of her neuromuscular connections took time, but within eight weeks Schneider said she was a new person. The improvements continued, and she now shows no outward signs of a movement disorder. It is hard to believe that she is the same person as the one in a video made before the treatment. She was a woman constantly riddled with uncoordinated, unintentional, uncontrollable movements.

Schneider presented the “before” video at an event sponsored by We Move, an organisation that seeks to raise public and medical awareness of movement disorders, last month at Beth Israel. We Move is the sponsor of a national Life in Motion campaign created to educate people about movement disorders.

The group estimates that more than 80 million people around the world have movement disorder, though most are not as severely affected as Schneider. While not directly life threatening, some movement disorders can effectively destroy every semblance of a normal life. According to Dr Susan B. Bressman, president of We Move and chairman of neurology at Beth Israel, they include more than 30 disorders, several of them progressive. Most are chronic, and few are curable. But modern treatments can often bring significant relief. Failure to obtain effective treatment can cause people to become withdrawn and isolated, and it can result in anxiety and serious depression. Depression is a common component of movement disorders.

One participant at the Beth Israel event told of a 38-year-old lawyer with generalized dystonia who committed suicide. Movement disorders originate in specific areas deep in the brain. The system that carries messages between nerves and muscles is disrupted, interfering with the ability to produce and coordinate voluntary movements or the ability to stop unwanted involuntary movements.

These disorders can result from a traumatic injury to the brain or spinal cord, a stroke, oxygen deprivation to the brain, inherited disorders like Huntington’s disease, gene mutations, the side effects of certain psychiatric medications, liver failure and diseases like Parkinson’s or multiple sclerosis. Or they can appear seemingly out of nowhere, as happened to Schneider. Exactly what goes awry in the brain is unknown, but Bressman’s team has identified some genes that result in dystonia, including one for generalized dystonia that arises in children.

Because symptoms of movement disorders vary highly and primary care doctors often do not recognise them, patients may see as many as 15 doctors before they are correctly diagnosed.

Tom Garson, who has had cervical dystonia for 23 years, spent two and a half years seeking medical help before he learned why his head was bent toward his left shoulder and he could not straighten it. Garson said he met a woman with the same problem who “hadn’t left her house in 10 years because she felt everyone out there was looking at her.”

He recalls that the medicines he took for the problem made him sleepy and caused memory loss. But since 1987, annual Botox injections into the contracted muscles of his neck have pulled his head upright and allowed him to drive safely and live normally. Botox injections to relieve the spasticity in her neck, shoulders and back also liberated Geri Jewell, an actress with cerebral palsy who appears in Deadwood on HBO. “I’ve been on Botox since 1999,” said Jewell, the national spokeswoman for We Move.

Uphill task: A Russian boy, suffering from cerebral palsy, undergoes a therapy session at a rehabilitation centre

There are two basic types of movement disorders: hyperkinetic, characterised by excessive, unwanted movements and muscle contractions, and hypokinetic, associated with slowness of movement, stiffness or rigidity. The long list of hyperkinetic disorders includes dystonia, in which sustained muscle contractions may result in twisting and repetitive movements or painful postures; restless leg syndrome; tics; blepharospasm, characterised by involuntary, continuous blinking that results in functional blindness; and essential tremor, an involuntary, rhythmic shaking.

Hypokinetic conditions include Parkinson’s disease, characterised by slowed movements, muscular rigidity or stiffness and postural instability, and a complex disorder called multiple system atrophy.

The Life in Motion initiative includes more than 50 patient and professional organisations. Its Movement Disorders Experience Center, with exhibitions that simulate spasticity, tremor, stiffness and other symptoms of movement disorders, is touring the country to show others what it is like to have such disorders. Visitors can try to drink from a cup while a vibrating machine shakes their arms or try to walk with a restraining device on their legs that restricts their stride and speed or view an erratic video to simulate the effects of uncontrollable blinking.

Obtaining an accurate diagnosis usually requires a referral to a neurologist or physiatrist who specialises in movement disorders. The workup is likely to include lab tests, brain imaging, nerve conduction or, possibly, muscle biopsy.