Misconceptions about Parkinson’s disease are common. The casual observer who sees a person with a hand that shakes uncontrollably assumes it’s a telltale sign of the disease, but that’s not necessarily the case.
“You do not have to have a tremor to have Parkinson’s disease,” says Dr. Michael Rezak, medical director of The Parkinson’s Disease Research Society and movement disorder specialist at Central DuPage Hospital, a member of Cadence Health. In fact, about 40 percent of Parkinson’s patients never do.
People also believe that Parkinson’s only occurs in older people, but according to Rezak, about 10 percent of the nearly 1 million people living with the disease in the United States are under the age of 40. Another mistaken belief is that patients with Parkinson’s disease will quickly become demented, when in fact, about 20 to 30 percent will suffer from dementia and only in the late stages of the disease.
And the idea that once people have Parkinson’s, they will soon become debilitated is also false. “The symptoms of every patient are different, so it’s hard to generalize, but with proper management of medications and other treatment options, patients can do very well for many decades,” says Rezak.
The movement disorders of slowness, stiffness, impaired balance, lack of coordination or tremors are not the first symptoms of Parkinson’s, a progressive disease of the central nervous system caused by the death of dopamine-producing neurons responsible for controlling movement and coordination. One of the earliest is loss of smell. Patients may also have REM sleep disorder and act out their dreams while they are still asleep. They may suffer from constipation, bladder problems, anxiety and depression among other problems. Doctors make the diagnosis of the disease based on the symptoms.
In a small number of cases, when a diagnosis is uncertain, it can be confirmed with a relatively new DaTscan imaging technique, available at a small number of hospitals including Central DuPage. For the procedure, the patient is injected with a radioactive drug to detect the amount of dopamine present in the brain.
While the trend used to be to watch and wait before starting a patient on medication, now it’s common to begin treatment as early as possible. Medications with low side effects are available to treat symptoms such as slowness, stiffness and even tremor. Doctors do try to wait to move a patient up to a drug like levadopa, or L-DOPA because it can create dyskinesia, involuntary uncoordinated movements such as flailing of arms or legs. It may also work erratically with on-and-off episodes, so that at times, it’s effective and at other times, patients freeze and become rigid.
Rezak points out that it is very important to micromanage the adjustment of medications whenever necessary. “People with Parkinson’s disease can be functional for 25 to 30 years,” he says. “I have patients 25 years out still playing tennis, although they’re not as quick and spry as they used to be.” For patients who are experiencing fluctuations in the effectiveness of medications, Rezak says a concentrated levadopa gel that is constantly infused into the small intestine with a pump will soon be available stateside.
When the medications are not effective, some patients can consider having deep brain stimulation (DBS) surgery to implant a device that electrically stimulates the parts of the brain responsible for motor control. When Toby Katz, who was diagnosed with early onset Parkinson’s six years ago at age 53, had negative reactions to the medications to stop her tremors, Rezak suggested the surgery.
“I was scared at first, but when the medication stopped working, [it] was my chance to get my life back,” she says. “I told Dr. Rezak that I wanted to be able to play with my grandchildren and hold them and be able to live a full life, and if he could do that for me, then the pros outweighed the cons.”
Rezak and his team, who do about two or three DBS operations a week, performed the surgery on Katz in December 2012. “I was concerned about the pain, but I was sedated and have no memory of the surgery, and I was out of the hospital the next day,” she says. “It was a gift; a miracle. It’s not a cure, and I’m not going to tell you that there are not days that are more difficult than others, but my relief has been wonderful, and I’m functioning at a much higher level.”
Katz, who exercised regularly before being diagnosed with Parkinson’s, started up again as soon as she could after the surgery. She does dance cardio and yoga, and has a trainer who helps her work on her balance and strength to keep her safe and healthy.
“I think just the act of working out that releases endorphins is such a positive thing for me that it’s abated any kind of depression,” says Katz.
Exercise, in fact, plays a crucial role in the treatment of Parkinson’s. Dr. Tanya Simuni, director of the Parkinson’s Disease and Movement Disorders Center at Northwestern University Feinberg School of Medicine, says, “Since the inception of the program, which is more than 10 years old, we have always made it our commitment to offer a holistic approach to the management of Parkinson’s, and exercise is an important part of that.”
Multiple studies have shown that physical therapy is effective in improving the disabilities caused by the disease. Those benefits, however, fade away if the patient does not continue to exercise. Simuni says, “There is clear data that maintaining physical activity allows [patients] to maintain their overall physical health and prevent the progression of the disease and improve their ability not only to cope with the disease but to live well with it.” She adds that patients who exercise regularly have fewer sleep problems and an improved level of energy.
Simuni also points out that studies have shown that so-called forced or coached exercise done on a treadmill, elliptical machine or exercise bicycle where the intensity can be increased, is particularly beneficial. “My position is that any kind of aerobic activity, provided that it is geared toward a certain level of intensity, will provide a comparable degree of efficacy.”
It is nevertheless difficult for people with Parkinson’s to find the motivation to exercise because of their movement disabilities and mood dysfunctions, and also because of the daytime sleepiness that is a symptom of the disease and a side effect of the medications.
“We find that group activities led by qualified instructors are so powerful because they provide better compliance, emotional benefits and a sense of group achievement,” says Simuni.
Looking to the future, Rezak says, “One of our areas of research is to look for biomarkers and risk factors so we can intervene in the process of Parkinson’s disease very, very early; maybe before the person has the first motor symptoms, so we can preserve the dopamine cells before they degenerate.”
In the meantime he underscores the importance of the attitude of Parkinson’s patients. He says they should educate themselves about the disease in order to take an active part in their own treatment so that they don’t feel helpless—because ignorance is dangerous.