Baptist Health Neurologist Addresses the Many Myths of Parkinson’s Disease

What do actor Michael J. Fox, rock musician Ozzy Ozbourne and former Miami Heat star Brian Grant all have in common? They’re just three of the 10 million people worldwide who are living with Parkinson’s disease, a neurodegenerative disorder of the brain. Yet, in spite of the number of people who have Parkinson’s, there are many misconceptions about the disease.

Sameea Husain Wilson, D.O., is the director of Movement Disorder Neurology at Marcus Neuroscience Institute at Boca Raton Regional Hospital, where she specializes in movement disorders such as Parkinson’s disease. She spoke with Resource recently and dispelled some of the most common myths about  the disease.

MYTH #1: Everyone with Parkinson’s disease has tremors.

FACT: “We know this is not true because 30 percent of patients with Parkinson’s disease do not experience tremors,” says Dr. Husain Wilson. “I can’t tell you how many patients I’ve encountered who said, ‘I didn’t think it was Parkinson’s because I don’t have tremors.’ They delayed seeing their primary care physician or a neurologist simply because the motor symptoms they were experiencing – stiffness, rigidity or balance issues – didn’t include tremors.”

MYTH #2: Aside from medication, there isn’t much you can do to treat Parkinson’s disease.

FACT: Dr. Husain Wilson says she is saddened by the thought that some people believe this to be true. “As patients with Parkinson’s learn very quickly when they seek care at Marcus Neuroscience Institute, in addition to medications such as levodopa, there are many other therapies that can help you live with the disease and maintain a good or even great quality of life,” she says.

Physical therapy helps patients with their posture, gait, arm swing and cadence, as well as learn how to use their assistive devices such as walkers or canes, according to Dr. Husain Wilson. But it requires commitment from the patient, she adds. “You need to practice 30 to 60 minutes a day, every day, with your spouse or an aid who can assist you when needed.”

Occupational therapy helps with daily living skills such as feeding, grooming, toileting and bathing, Dr. Husain Wilson says, and speech therapy is extremely beneficial because Parkinson’s patients also have problems with voice projection and swallowing. “We even address what type of diet they should be eating, given some of the limitations caused by their disease.”

Walking and other exercises are extremely beneficial for people living with Parkinson’s, as is aqua therapy, according to Dr. Husain Wilson. “When patients are walking in water, the buoyancy of the water helps them move in a way that they cannot on land.” Riding a stationary bike is also helpful, she says. “Yoga and tai chi, too – they’re wonderful for reducing rigidity, boosting core strength, maintaining balance and preserving mobility.”

MYTH #3: All Parkinson’s patients are candidates for High-Intensity Focused Ultrasound (HiFU) therapy.

FACT: “There is such a large constellation of symptoms associated with Parkinson’s disease, and not all patients have tremors or will develop disabling dyskinesias – involuntary uncontrollable movements of one or more parts of the body, particularly the head, arms or legs – commonly associated with Parkinson’s,” says Dr. Husain Wilson. But for patients who do have dyskinesias, she says HiFU can reduce tremors by precisely targeting ultrasound beams through the skull to the thalamus, the pea-sized structure in the brain responsible for transmitting 98 percent of sensory information to the brain’s cortex, including vision, taste, touch and balance.

“With HiFU, we can reduce or eliminate tremors in some patients by using ultrasound beams to destroy lesions in the thalamus that are creating an abnormal circuit in the brain,” Dr Husain Wilson says. “It’s a minimally invasive, image-guided procedure that can be performed painlessly, without anesthesia, while the patient is awake and responsive.”

Patients with disabling dyskinesias may also benefit from making thermal lesions in the globus pallidus or subthalamic nucleus, she adds, while a patient with tremors or severe slowness of movement may be treated with thermal lesions in the pallidothalamic tract.

MYTH #4: HiFU is the only surgical treatment option for Parkinson’s disease.

FACT: “Actually, Deep Brain Stimulation (DBS) surgery has for decades been an effective therapy for many patients with Parkinson’s and even today it is used more widely than HiFU,” Dr. Husain Wilson says. “Patients with advanced Parkinson’s also benefit from the Duopa Pump, which is a surgically implanted device that delivers medicine directly to the intestine, where it is readily absorbed.” This, she says, reduces the “off” times that patients experience when taking oral medications to control their disease.

MYTH #5: Parkinson’s disease is fatal.

FACT: According to Dr. Husain Wilson, for many patients first diagnosed with Parkinson’s disease, the first question they ask is, “How long do I have?” But people don’t die from the disease, she is quick to say – they die with the disease.

“Parkinson’s disease is not fatal,” she says. “When fatalities do occur, it’s from complications associated with the disease, such as falls and choking, but not the disease itself.” In most cases, Dr. Husain Wilson adds, it was because the patient wasn’t “following the rules of living with Parkinson’s,” such as keeping up with physical therapy, strengthening your core, using your assistive device wherever you go, and asking for help when needed. “All of these can help prevent falls.”

Because choking is also a concern with Parkinson’s disease, patients need to be especially careful eating, drinking and taking medications. “Eating soft or pureed foods, slowly and deliberately, can help prevent choking,” Dr. Husain Wilson says. “Also, because swallowing is difficult for people with Parkinson’s, many patients find they can keep from aspirating fluids by adding thickeners to beverages and taking medications with applesauce or yogurt.”

MYTH #6: Essential Tremor and Parkinson’s disease are the same thing.

FACT: “Lots of patients think they’re the same thing, because of the tremors,” says Dr. Husain Wilson, “but as we noted before, not all Parkinson’s patients have or develop tremors.” People with Parkinson’s who do have tremors experience them even when their bodies are at rest, she notes, while those with Essential Tremor get them only when moving their hands and legs.

Neurologists are trained to spot the visible symptoms of Parkinson’s disease, Dr. Husain says. Once a clinical diagnosis is made, further confirmation can be made, if needed, with a Dopamine Transporter Scan (DaTscan), which she says allows clinicians to see if your body is manufacturing dopamine properly.

“A radioactive tracer is injected into the bloodstream where it eventually attaches to the dopamine transporter molecule on dopamine neurons in the brain,” she explains. “How those neurons ‘light up’ under special imaging equipment can confirm whether your dopamine system is healthy or compromised.” The scan alone won’t make the diagnosis, she emphasizes, but it will help confirm the clinician’s diagnosis.

MYTH #7: People with Parkinson’s disease shouldn’t get the COVID-19 vaccine.

FACT: “Not true,” says Dr. Husain Wilson. “Your movement disorder neurologist is the only person who should be saying whether or not you should get the COVID-19 vaccine, and they’re going to tell you it’s safe. As a movement disorder neurologist myself, I can tell you that the only reason the vaccine might possibly be an issue was if the patient had an additional medical problem unrelated to their Parkinson’s.”