Parkinson’s Disease: An Insider’s View

“The irony,” said Barry Centini, Ph.D, “is [I am] describing my brain malfunctions using a partially malfunctioning brain.”

Centini, who was diagnosed with Parkinson’s disease in 2015, shared information about the disease and his experiences in a recent talk presented by the Lifetime Learning Institute at Northern Virginia Community College in collaboration with AARP Virginia.

Parkinson’s disease is one of the most prevalent neurodegenerative diseases worldwide. It is named for Dr. James Parkinson, who described the condition as “shaking palsy” in 1817. While its exact causes are unknown, it is known as a breakdown of some brain functions, namely those that produce and process dopamine, a chemical that coordinates movement.

Centini, who has done extensive research on his condition since his diagnosis, said that while Parkinson’s is called a movement disorder, there are also non-movement symptoms. It is a lifelong and progressive disease for which there is no cure. The Parkinson’s experience is different for each person, and it is impossible to predict which symptoms one might get, when they will get them, or how severe they will be.

Parkinson’s affects nearly 1 million people in the United States and nearly 6 million worldwide.

Centini first became aware of his symptoms when his wife commented on his twirling right thumb. The first phase of the disease includes mild tremors and mild difficulty walking, affecting only one side of the body. It also may include less facial expression, which Centini said he didn’t notice, though others did. Symptoms in this early phase don’t interfere much with daily life.

In the second phase, symptoms worsen and affect both sides of the body. Daily tasks are more difficult, but still manageable.

As the disease progresses, balance and coordination are more greatly affected. In the third phase, falls become a real danger. Patients may need help with routine tasks like eating or dressing. Centini, who is currently in this phase, said buttoning shirts are a challenge to him.

When a patient reaches the fourth phase, tasks are even more challenging, and the patient may need walking aids. It may be difficult to live alone at this point.

By the time a patient reaches the most severe phase, it may be difficult to stand and walk, even with help. Patients may develop hallucinations or delusions.

In addition to the initial tremors with his right thumb, Centini said he has tremors in both hands while eating, issues with fine motor coordination, some trouble turning over in bed, “stumbling” falls, lightheadedness when getting up after sitting, and REM (rapid eye movement) sleep behavior disorder, specifically dreams of being chased.

Centini emphasized that not all motor or movement disorders are Parkinson’s disease. “Parkinsonism” is an umbrella term that refers to brain conditions that cause slowed movements, rigidity or stiffness, and tremors. These conditions can happen for several reasons, including genetic mutations, reactions to medications, and infections.

Parkinson’s occurs when the brain cells in the basal ganglia part of the brain that makes dopamine stop working or die. There is no way to measure dopamine, and no treatment except for drugs that help increase the amount of dopamine in the brain.

While scientists know that the loss of these brain cells cause Parkinson’s, they don’t know why these cells die. There is some evidence that genetics in the form of mutated genes are a factor in about 10 to 15 percent of cases, but the disease does not seem to run in families, nor is it known which specific genes are affected. There is also a belief among some scientists that Parkinson’s may be tied to environmental factors, such as exposure to toxins.

There are no specific tests to diagnose Parkinson’s, so doctors rely on medical history, a review of signs and symptoms, and neurological and physical exams to rule out other conditions.

Parkinson’s has both motor and non-motor symptoms. Motor symptoms include tremors, rigidity, Bradykinesia (slowness of movement and speed), postural instability, vocal symptoms, writing changes, and walking or gait difficulties.

Non-motor symptoms include depression and anxiety, disturbances in the sense of smell, fatigue, gastrointestinal issues like irritable bowel syndrome (IBS), lightheadedness, and REM sleep disorders. Centini said he has a long history of IBS. He also noted, ironically, that he had a history of hypertension and is taking several medications to lower his blood pressure yet he’s recently experienced lightheadedness because of drops in blood pressure.

Centini emphasized that some of the symptoms associated with Parkinson’s are also associated with the aging process. At age 85, it is sometimes difficult for him to determine which symptoms are Parkinson’s and which are normal aging. In individuals 80 and older, the prevalence of Parkinson’s disease is in the range of 1-2 percent of the population.

“People don’t die of Parkinson’s,” said Centini. “They die with Parkinson’s.” Often death may occur due to a fall or another condition that may also be related to normal aging.

While most people diagnosed with Parkinson’s are older, about 10-20 percent of Parkinson’s patients are under 50 years old. Early onset Parkinson’s, occurring in individuals between 21-50 years old, has similar symptoms, though younger people experience them differently. Younger patients tend to have involuntary movement problems, and issues like memory loss, confusion, and balance difficulties are less frequent.

Probably the best-known example of early onset Parkinson’s is actor Michael J. Fox, who was diagnosed in 1991 at age 29. Centini has a high level of admiration and respect for Fox, who created a foundation for Parkinson’s research following his diagnosis.

Centini takes medications to treat some of his symptoms, including drugs that help provide additional dopamine to help control movement. He also takes medication to help with his sleep disorders. He emphasized that dosage is not a precise science, and he works with doctors to help him regulate what works best for him.

He also participates in activities to help slow the progression of the disease. A resident of the Greenspring Senior Living Community in Fairfax County, he swims and lifts weights regularly. He also highly recommends Rock Steady Boxing, an activity designed specifically for Parkinson’s patients. In Rock Steady Boxing, participants learn six punches, each assigned a specific number, then execute the punches as the leader calls out a random series of numbers. The activity is both physical and helps stimulate patients’ brains.

Potential future treatments for Parkinson’s may include deep brain stimulation via implantable devices, gene therapy, neuroprotective therapies, biomarkers, and neural transplantation.

For more information about Parkinson’s disease, Centini recommends the Parkinson’s Foundation at www.parkinson.org and the Michael J. Fox Foundation at www.michaeljfox.org.