Parkinson's disease is a brain and movement disorder that affects about a million people in the United States. It's a progressive disease, but that does not mean that once you've been diagnosed with Parkinson's it's all downhill from there. Thanks to modern treatments, most people with Parkinson's function quite well for many years.
"Life expectancy for people with Parkinson's is only a few years shorter than average - and that gap is closing," says Victor Sung, M.D., a neurologist at the University of Alabama at Birmingham Medical Center. "When we aggressively address all the symptoms, patients experience a great increase in quality of life."
Actor Michael J. Fox founded the Michael J. Fox Foundation for Parkinson's Research soon after disclosing his diagnosis in 1998. Thanks to successful drug therapy, Fox was able to return to full-time acting in 2012 and has written several books, including the memoirs Lucky Man and Always Looking Up.
Sasha Meret, an artist who was diagnosed with Parkinson's in 2003, at age 47, agrees that you can live well with Parkinson's. He does not even think of it as a disease but more as a condition to be managed. "I treat it as just a discomfort, a condition that forces me to take more control over my life so I can function," he told researchers at New York University Langone Medical Center. Parkinson's results when the brain fails to produce the right amount of a chemical called dopamine that is necessary for smooth and coordinated movements. That's why distinctive features of Parkinson's are types of movement symptoms. Tremor is the most well-known, but bradykinesia (slowness of movement) is more characteristic, explains Dr. Sung. Other common signs are abnormal stiffness or rigidity in a limb and problems walking.
Dystonia, or involuntary muscle contractions causing abnormal repetitive patterns at rest or with certain movements, can occur in up to 40 percent of people with Parkinson's disease. Dystonia can occur in the hands, trunk, neck, eyes, and feet (as toe curling or foot inversion). Some 40 percent of people living with Parkinson's disease may experience dystonia as an early symptom or as a side effect of treatment.
Dyskinesia is purposeless, uncontrollable movement that flows from one region of the body to another, affecting the limbs, torso, and/or head or neck. Contrary to what many people think, dyskinesia isn't the first sign of Parkinson's but occurs as a complication of levodopa treatment. Michael S. Okun, M.D., chair of neurology at the University of Florida and the medical director for the Parkinson's Foundation, advises working with your doctor to manage medications to keep dopamine at optimum levels to reduce or prevent dyskinesia.
DYS and that
It can be difficult to keep straight the differences between dystonia and dyskinesia. Here are some basics to help.
Involuntary muscle contractions
Contortion of feet, hands, neck, or torso
Often manifests as involuntary writhing movements that are mild
Can cause larger movements such as swaying of the body or head
Not just movement
People are usually diagnosed with Parkinson's after they experience tremors or shaking, stiffness, and slowness of movements that sends them to the doctor. But Parkinson's also causes non-motor symptoms, many of which occur long before motor symptoms appear.
Some facts about symptoms
70 percent of people with Parkinson's have serious constipation.
REM (rapid eye movement) sleep disorder, which affects about half of Parkinson's patients, involves acting out dreams with movements and screaming or yelling.
A worsening sense of smell is common.
These non-motor symptoms can also occur:
Half or more with Parkinson's experience memory problems.
20 to 30 percent feel dizzy when standing up quickly or changing position suddenly, due to blood pressure fluctuations (orthostatic hypotension).
50 percent plus have depression.
Up to 95 percent have fatigue or sleep disorders.
5 to 25 percent have hallucinations due to dopamine meds or late stage disease.
Let your doctor know if you have any of these symptoms. "Treating non-motor symptoms can make a huge difference in your quality of life," says Dr. Sung.
While current therapies can't slow progression of the disease, there are many medications that can make the illness much easier to live with. "I tell my patients that once treatment starts, you can expect to see improvements from where you were at your first visit," says Dr. Sung. "I fully expect them to be doing things they couldn't do before treatment."
He said, she said
Women are diagnosed with Parkinson's less often than men, and there is slight gender variation in symptoms.
The first symptom in women is typically tremor. In men it is bradykinesia, or slowness of movement or rigidity.
Mental changes seem to affect women differently from men, too. According to some research, women retain more verbal fluency, while men do better with spatial orientation.
Both women and men have trouble expressing emotions in their faces, due to muscle rigidity. Some also find it difficult to interpret the emotions on others' faces.
Both women and men can have trouble interpreting anger and surprise, but men are more likely to lose the ability to recognize fear in another's face.
Women with Parkinson's are more likely to suffer from depression, while men are more likely to have behavioral problems and aggression.