For the 10 million people worldwide who suffer from Parkinson’s disease and the wives, husbands, sons, daughters and other loved ones who share in their pain, hope is their currency.
But hope can at times be in limited supply because there is no cure for Parkinson’s, the l4th-leading cause of death in the United States.
Yet new developments in surgical options, potential breakthroughs in medication, advancements in diagnosing the disease and efforts to better organize and fundraise have patients and their loved ones optimistic.
Here’s a closer look:
Parkinson’s is a progressive neurological disease with symptoms that include tremors, slowness of movements, rigidity and cognitive impairment.
Hollywood resident Donald Liles, who turns 71 in October, knows firsthand about Parkinson’s effects. After getting diagnosed with the disease in December 2011, Liles said he could no longer feed himself due to the tremors in his hands. Buttoning his shirt, a task that once took 15 seconds, soon became a 15-minute ordeal.
Liles tried several medications, but nothing stopped the tremors.
Finally, in January 2013, he opted for deep brain stimulation, a surgical procedure that implants a device called a neurostimulator, also known as a “brain pacemaker,” into the brain. The device sends electrical impulses to specific targets in the brain. The procedure was introduced in 1987 and was approved by the Food and Drug Administration a decade later.
Liles said his procedure, which was performed by Dr. Badih Adada, the director of the Neurology Center at Cleveland Clinic Florida, worked.
“Now I hardly have any tremors at all,” Liles said. “I’m totally independent. I can do everything I did before my diagnosis.”
Liles said his procedure was covered by Medicare.
In addition, the procedure is reversible — the electrodes can be taken out if the patient’s condition does not improve. As for the procedure itself, Liles said it was a monthlong process. Three components were surgically implanted, most notably the electrodes, which were inserted after surgeons drilled a small hole in his skull. A week later, a neurotransmitter was implanted under his collarbone. After the sutures had healed, the device was activated.
Adada cautioned that deep brain stimulation is not a cure and that medication is always the first course of action.
“The question is: What do we do when patients are not responding to medication or have severe side effects?” Adada said. “That’s when surgery is an option.”
While deep brain stimulation has been successful for Liles and others, side effects can include apathy, depression, euphoria and hallucinations. As with any surgery, there is a risk of infection or bleeding. And because foreign objects are being introduced, they can be rejected by the body.
In addition, because the brain can shift slightly during surgery, complications — including a personality change — can occur.
Dr. Peter Schmidt, chief mission officer for the National Parkinson Foundation, said there are some medications that show real promise, even though more testing is needed.
Nilotinib, which is FDA-approved to treat leukemia, increases the body’s frequency of getting rid of toxins. Schmidt said another promising drug is Isradipine, which is a calcium channel blocker. The theory is that if calcium channels can be blocked, that would keep toxins out.
“Those are two examples of drugs that could be on the horizon,” Schmidt said. “But even if these two don’t work, we hope to see more ideas based on fundamental science at the biological level.”
Toxins, Schmidt said, are a key to finding out what causes Parkinson’s.
“Everybody always hopes that the answer will be a drug, and drugs do make a big difference,” Schmidt said. “But innovation is coming in multiple domains. There is increasing evidence that Parkinson’s is caused by chemicals in the environment. We need to understand how pesticides — including the ones sprayed to fight Zika — are involved.”
DaTscan, approved by the FDA in 2011, is a radiopharmaceutical agent injected into a patient’s veins that is designed to detect the presence of dopamine in the brain. Dopamine is a neurotransmitter that, among other things, helps the body move smoothly. Parkinson’s occurs when dopamine-producing neurons in the brain start dying.
Adada said the test, which so far is only available in the U.S. and Europe, has been taken by more than 300,000 patients worldwide. And while the exam is still not the definitive test that by itself can determine if a patient has Parkinson’s, it is “a significant advance,” Adada said.
DaTscan, he said, “helps rule out certain diseases that mimic Parkinson’s.”
EXERCISE & LEARNING NEW ACTIVITIES
Schmidt said that while it’s fine to hope for and work toward a cure, he wants Parkinson’s patients to take charge of their own care.
Exercise is obviously beneficial, but Schmidt urges patients to challenge themselves with new activities, whether it’s yoga, boxing or something else.
“We’re getting a lot of new information on exercise,” Schmidt said. “What the research shows is that novelty is what makes a difference. In learning a new skill, your brain creates new pathways to represent that skill. You are releasing a growth hormone in your brain, and that is really good for every aspect of how your brain is working.
“Exercising, taking your medications on time and following the care of an expert neurologist — these are not breakthroughs. It’s hard work, but it will change your quality of life.”
John W. Kozyak, chair of the National Parkinson Foundation’s board, encourages everyone to participate in Moving Day on Nov. 13 at Miami’s Museum Park.
Moving Day, a walk for Parkinson’s that is held in different cities around the country, is in its 22nd year nationally and in its fifth year in Miami. Last year, the event raised $3.2 million nationally with proceeds going toward research. The Miami event will include a walking course, a kids’ area, a relaxation tent and a tent for yoga, dance, Pilates and Tai Chi.
To find out more about Parkinson’s, call the NPF Helpline at 800-473-4636. Parkinson’s specialists answer calls in English and Spanish, Monday through Friday from 9 a.m. to 5 p.m.