Parkinson’s treatments helping quality of life
5/3/2012
This article from the Miami Herald discusses symptoms of Parkinson's disease and the latest treatments, with a special mention of the National Parkinson Foundation's 10 Early Warning Signs of Parkinson's Disease.
Parkinson’s disease affects much more than motor control, but clinical trials and treatments are available to help.
May 3, 2012 — Roy Roden,54, continues to work out to improve his health. He has Parkinson's and works part time as a fitness consultant at the Olympia gym in Aventura. Studies have shown that exercise helps control the symptoms.
When he was 25, Roy Roden experienced the first sign: insomnia. Over the next 25 years, he displayed a range of other symptoms: difficulty holding a spoon, shaking of his hands, memory problems and an unexplained twitch.
But it was only in 2009, after visiting many doctors, that Roden was finally diagnosed with Parkinson’s disease.
“In a way it was a relief putting a label, putting a name on my disorder,” said Roden, 54, who lives in North Miami Beach and works part-time as a fitness consultant. “But in another way it was a shock, and I didn’t know where to go from here.”
Roden chose to be proactive, taking medication, participating in clinical research programs and urging others to join clinical trials.
“I am doing what I am supposed to be doing to retard the disease and I remain optimistic,” he said. “I have a wonderful wife and family and wonderful doctors and a wonderful support system with friends and colleagues.”
Each year, about 50,000-60,000 new cases of Parkinson’s are diagnosed, with an average age at diagnosis of 62, according to the National Parkinson Foundation, based in Miami since 1957.
A progressive, neurodegenerative brain disorder, Parkinson’s is the second most common degenerative disease of the brain, after Alzheimer’s. It affects one million people in the United States and an estimated four to six million worldwide.
Parkinson’s causes tremor, slowness of movement and rigidity, and those with the disease can also display a host of other early symptoms, including loss of smell. The disorder can also affect cognition and gastrointestinal functions, experts say.
The disease is caused in large part by a deficiency in the brain of the neurochemical dopamine, and progression can take at least a decade. About 15 percent of cases are known to be familial, and the other 85 percent are due to unknown genetic and environmental factors, said Dr. Carlos Singer, professor of neurology at the University of Miami School of Medicine and division chief of Parkinson’s and movement disorders.
Efforts to treat the condition are centered on treating the symptoms as well as slowing the disease’s progression. To further that fight, a new diagnostic test that helps in identifying the disease has recently been approved. New trials are under way, and stem-cell research is expected down the road.
“I think there will be a cure in the next few years,” said Singer, who is Roden’s doctor. “They are studying the mechanisms of how the disease acts, so even if you don’t know the cause you can figure out how the disease works so you can still stop it.”
Among the clinical trials under way or planned at UM are those to treat symptoms, including using new formulations of the drug L-Dopa.
One trial under way tests a pill that lasts longer because it is absorbed through the gut. Another trial, which the university hopes to be part of this year, uses a formulation of L-Dopa in gel form, that is infused through a pump that is inserted through the stomach into the intestine.
“It allows you to infuse it continuously, so the ups and downs are diminished,” Singer said.
Another uses a drug geared to extend the hours that a patient experiences fewer symptoms. UM is recruiting patients for that trial.
Among research efforts, UM is involved in a National Institutes of Health study using an anti-diabetic agent, Pioglitazone. UM is recruiting patients who have early Parkinson’s for that trial.
Singer said he is also hopeful that university or foundation-sponsored human clinical trials of stem cells in Parkinson’s could begin in the next few years.
Meanwhile, some hospitals have started using a new brain imaging test that is helping identify Parkinson’s.
The DaTscan measures the amount of dopamine transporter in the brain, which helps to differentiate whether the patient has a Parkinsonian tremor or an “essential tremor,” which is not related to Parkinson’s, said Dr. Seth Hochman, a neurologist at Baptist Hospital and clinical professor of neurology on the voluntary faculty of the University of Miami School of Medicine, who has been using the scan for several months.
The test is also being used at the Cleveland Clinic in Weston.
“Up to now we didn’t have a way to determine the amount of dopamine cell loss,” said Dr. Nestor Galvez-Jimenez, chairman of the department of neurology and chief of the movement disorders program at the Cleveland Clinic.
In the past few months, the test has been used to document some patients who were previously told they had Parkinson’s but in fact did not have the disease.
The Cleveland Clinic is also involved in various studies to determine the genes related to Parkinson’s and to test compounds to ameliorate or improve motor control or symptom control for Parkinson’s patients, Galvez-Jimenez said.
One advanced treatment is Deep Brain Stimulation, which involves implanting a pacemaker in the chest with wires leading to the brain. It is now being performed at UM and likely will be resumed at the Cleveland Clinic by the end of the year.
“This is an amazing breakthrough for Parkinson’s patients,” said Dr. Bruno V. Gallo, assistant professor of neurology and neurosurgery and director of the Deep Brain Stimulation program at the University of Miami School of Medicine, who has been involved in the implantation of more than 700 patients.
The procedure uses four wires, each thinner than a human hair, which go up the neck and behind the ear, under the scalp and into the brain, Gallo said. The patient must be awake during the wire implantation procedure.
Once the device is turned on, it remains on around the clock and only the pacemaker battery must be replaced after several years, said Gallo, who has performed the surgery on patients as old as 88.
Candidates generally have moderate to advanced disease, and must take certain tests to determine their eligibility.
“Any patient who continues to respond to medication but is suffering from untoward side effects should be viewed as a candidate,” Gallo said.
In September, he performed the surgery on Jayne Leitner, 61, who was diagnosed with Parkinson’s in her late 40s.
“It’s a lifesaver,” said Leitner, who lives in Boynton Beach. “I had terrible dyskinesia — flailing of legs, and dystonia — curling and cramping of feet, and it took it all away for me. It has completely disappeared and I take very little medication now.”
Leitner said it took her doctor four or five years to talk her into the surgery, and now she wishes she had done it earlier.
“The progression continues — it is a disabling disease,” she said. “But it gives you a better quality of life.”
10 Early Warning Signs of Parkinson’s disease from the National Parkinson Foundation:
- Tremor or shaking
- Small handwriting
- Loss of smell
- Trouble sleeping
- Trouble moving or walking
- Constipation
- A soft or low voice
- Masked face or loss of facial expression
- Dizziness or fainting
- Stooping or hunching over
RESOURCES
National Parkinson Foundation’s toll-free Helpline 800-4PD-INFO (473-4636) or visit www.parkinson.org.
— By Ina Paiva Cordle
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