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Brain stimulation enables pianist with Parkinson’s disease to perform again
Activa Therapy can improve motor control and coordination when drugs alone are ineffective or their side effects intolerable
PARIS –– 6 September 2004 –– A former music teacher with Parkinson’s disease performed selections from her classical piano repertoire today during the 8th Congress of the European Federation of Neurological Societies (EFNS), Europe’s largest annual gathering of neurologists.
Luitgard Treml-Lenz, 55, played pieces by Beethoven, Brahms, Chopin, Greig, Händel, Hugo Wolf, Liszt, Mozart, Schubert and Schumann with a fluency that belies her condition, which was diagnosed in 1984 at the age of 36. Mrs Treml, who lives in Munich, credited her treatment with brain stimulation, or Activa Therapy, for restoring her playing ability –– and her quality of life.
Soon after being diagnosed with Parkinson’s disease, Mrs Treml-Lenz began to experience difficulty moving her left arm and chronic stiffness in her neck. As the disease progressed, she rapidly became dependent on her husband to perform even the most basic tasks, from bathing and dressing to eating and drinking. Eventually, the increasingly severe symptoms, which caused walking problems and periods of immobility, forced her to retire from her job as a music teacher in 1992 after 20 years.
Mrs Treml-Lenz and her husband Friedrich, a singer, had been an active couple, but over time they gave up many social opportunities. Travel became impossible. “I stopped going to the supermarket as I was not able to take the money out of my purse,” Mrs Treml-Lenz said. “But the worst was to abandon my favourite activities such as playing the piano and going to concerts.”
She began receiving Activa Therapy in December 2003. Within minutes of having the brain stimulation system turned on, her symptoms improved dramatically. Her physician’s skill in programming the device during the first few months improved her condition further.
“I have so much to catch up on,” Mrs Treml-Lenz said. “With my husband, we now enjoy playing music, going to concerts and doing long cycling tours. I appreciate being able to do simple things such as opening nuts. Activa Therapy is perfectly compatible with a normal life.”
Mrs Treml-Lenz recounted her experience at a press conference titled “Prescribing electricity: Brain stimulation for the treatment of Parkinson’s disease.” She was joined by:
• Dr Mary Baker, president of the European Parkinson’s Disease Association (EPDA)
• Pr Yves Agid, head of neurology and neuropsychology at La Pitié-Salpêtrière Hospital in Paris
• Mr Jean Bataille, president of Fédération Française des Groupements de Parkinsoniens (FFGP)
The second most common movement disorder after Essential Tremor, Parkinson’s disease afflicts 6.3 million people worldwide –– 1 per cent of people over the age of 60, and 2 per cent of people over the age of 80 –– or 1.8 persons per 1,000 population. The average age of onset is 60, but 1 in 20 people with Parkinson’s disease are younger than 40 years old at diagnosis. Major motor symptoms include:
• Rigidity (stiffness) in muscles and joints
• Bradykinesia (slowness of movement) or akinesia (absence of movement)
• Tremor (involuntary rhythmic shaking) of a limb, the head or the entire body
• Postural instability (poor balance and lack of coordination)
Even with optimal medical therapy, symptoms usually worsen as the disease progresses. The drug levodopa, introduced in the 1960s, remains the standard treatment for Parkinson’s disease, but over time gradually loses its effectiveness, controlling the symptoms for increasingly shorter and unpredictable intervals, and causing side effects that some patients find intolerable.
“Brain stimulation represents real progress in movement disorders treatment,” explained Pr Agid. “It also holds promise for the treatment of other diseases.”
The EFNS congress features some of the latest research on brain stimulation. It also included a satellite symposium on brain stimulation that focused on the key role of neurologists in patient selection and follow-up care, including programming.
Research conducted over the past two decades shows that brain stimulation is a safe, effective and durable treatment for Parkinson’s disease. A global clinical trial found an improvement in motor control among patients treated with Activa Therapy of between 33 and 51 per cent and a doubling of time with good mobility (without dyskinesia, involuntary movements caused by medication) at the six-month follow-up exam. A separate study of patients implanted in France demonstrated similar levels of improvement after five years of treatment with brain stimulation. Results from both studies were published in The New England Journal of Medicine.
“Brain stimulation can give people affected by Parkinson’s disease control over their own lives again,” said Dr Baker. “It can reduce patients’ need for medication and their dependency on carers, sometimes enabling one or both partners to return to work. That’s good for people affected by Parkinson’s disease, their countries’ healthcare systems and society as a whole.”
Dr Baker also announced the start this month of a 20-country survey of young people with Parkinson’s disease for patients who are diagnosed before age 50. Conducted with Parkinson’s disease organisations throughout Europe, the “Participation in Life Survey” follows “unanimous agreement by the EPDA members that younger people with PD do have special needs that should be more systematically and thoroughly explored before ways of meeting them can be found,” Dr Baker wrote in an August letter to member organisations. “The aim of the survey is to explore the quality of life, psychological adjustment and service use of people with early-onset PD (diagnosis before age 50) in the European PD organisations. The data collected will be published and presented at [a] conference being held in Dublin, Ireland in October 2005.”
Dr Baker added: “This project is long overdue because many people mistakenly think that Parkinson’s disease affects only the elderly. In fact adults of all ages are affected, and no patient organisation should proceed with care models that presumes one size fits all when it comes to the treatment of Parkinson’s disease.”
Pioneered in France at the University of Grenoble, Activa Therapy works by delivering therapeutic pulses of electricity into precisely targeted areas of the brain (within the basal ganglia) involved in motor control. While research into the mechanism of action continues, the stimulation appears to compensate for the brain signals that cause the motor symptoms of Parkinson’s disease.
Mr Bataille, who was diagnosed with Parkinson’s disease in 1980 at the age of 44, praised the role of French physicians and researchers in pioneering brain stimulation –– a therapy that he has been receiving since 1996: “Without brain stimulation, I wouldn’t be able to do all the things I now can. That’s why I hope to begin receiving the same treatment for the other side of by body within the next few months.”
Activa Therapy requires the implantation of advanced medical technology made by Medtronic:
• A device (similar to a cardiac pacemaker) called a neurostimulator to generate the electrical pulses
• Two leads (insulated wires) with electrodes at the tip to transmit the pulses into the targeted areas of the brain
• Two extensions to connect the leads to the neurostimulator
All of these components are implanted inside the body. The neurostimulator goes under the skin of the chest near the collarbone; the leads go into the brain; and the extensions go under the skin of the head, neck and shoulders.
After the implant procedure, patients return to hospital to have their device turned on and programmed to maximise the benefits of stimulation and minimise any side effects. They also receive a patient programmer, which can turn the device on and off and also change the stimulation parameters within limits set by their physician.
Approximately 15 per cent of people with Parkinson’s disease could potentially benefit from treatment with brain stimulation. Activa Therapy has been used already to treat more than 30,000 people with Parkinson’s disease worldwide since 1995 –– 15,000 in Europe; 2,000 in France.
Mrs Treml-Lenz said: “The benefits of Activa Therapy are amazing. More importantly, I have recovered my dignity.”
More information on the EPDA, Parkinson’s disease and brain stimulation is available online at www.epda.eu.com.
EDITOR’S NOTE: Background information, including images and video, on brain stimulation for the treatment of Parkinson’s are available from the contacts listed above. Interviews with implanted patients and other expert sources from France and across Europe can also be arranged.