7 to 10 million people live with Parkinson’s disease worldwide. But what is Parkinson’s disease? What are the symptoms? Is there a cure? Here is everything you need to know to understand this disease and how to support those who live with it.
What is Parkinson’s Disease?
Parkinson’s disease is a neurodegenerative disease that destructs brain cells and affects the brain’s ability to control movement and other processes including thought.
The cause remains largely unknown – risk factors include being over 50 or being exposed to pesticides. Approximately 10% of cases are genetic and occur in younger people and men are 1.5 times more likely to have the disease than women.
How is Parkinson’s disease diagnosed?
There are no laboratory or imaging tests available to diagnose Parkinson’s disease, so the diagnosis is made through a history and physical examination. Parkinson’s disease can be difficult both to diagnose and to treat; therefore it is wise to consult with a neurologist who specializes in movement disorders.
The main symptoms are:
Tremor: Fingers, hands, legs, feet, chin, lips, jaws, quiver uncontrollably, usually while at rest. (Deliberately moving that body part – or falling asleep – usually stops the tremor)
Rigidity: stiffness of the arms, legs, and trunk
Movement slowdown (Bradykinesia) – simple actions like lifting a cup appear to be in slow motion
Loss of balance (usually several years after diagnosis)
Other symptoms include: difficulty swallowing, speaking, sleeping, urinary problems, constipation, increased or decreased sweating, cognitive difficulties, sexual dysfunction, fatigue, and limb pain. As the disease progresses further, people may develop stooped posture, dementia, and light-headedness when rising from a sitting or lying position. Unfortunately, while currently available treatment can provide temporary relief from symptoms, it can’t stop the disease from progressing.
Everyone’s experience is unique. Some people will have relatively mild symptoms and will continue to function well, and other people will develop a full range of symptoms and eventually be dependent on a caregiver. Doctors can’t predict which symptoms will occur or how severe they will be.
The main symptoms result from the destruction of specific brain cells. Healthy brain cells produce a chemical called dopamine, which is a messenger that lets the brain communicate with the rest of the body. Without enough dopamine, the brain can’t send messages directing the rest of the body to do or to not do something. Mild symptoms usually begin when roughly half of the dopamine-producing cells are gone. Most commonly people notice a one-sided arm or leg tremor during rest, or a loss of coordination in movements.
In more advanced stages, they may find that one of their feet scrapes the ground while walking. The size of their stride decreases. If muscles in the face, throat or tongue are affected, speech becomes slower and possibly slurred, swallowing becomes difficult and facial expressions may disappear. Overall, everything slows down. Performing activities of daily living becomes increasingly difficult.
Although Parkinson’s disease is thought of as a movement disorder, non-motor symptoms are common. The patient may think more slowly than usual and may lose the ability to plan, to prioritize, or to manage time. Eventually, some patients develop substantial cognitive impairment or dementia.
What are the main treatments?
The most-known medication is called levodopa which crosses into the brain, where it is converted into dopamine. Levodopa can be extremely effective for a while, but there are drawbacks. For example, Levodopa should be taken with food to prevent nausea, but protein necessary for a healthy diet can lessen its effect.
In addition, the regular tablets are taken several times each day. Every few hours as the medication wears off, symptoms return. People are called “on” when symptoms are controlled and “off” when the medication wears off. Over time “on” time becomes shorter, and higher doses of levodopa are required to maintain it. Higher doses often result in uncontrolled motions (dyskinesia) such as head bobbing or twisting. Decreasing the dose results in a return of the initial symptoms, and so the patient must decide whether the dyskinesia or the Parkinson’s symptoms are preferable.
Levodopa may be combined with another medication, Carbidopa, which prevents it from breaking down in the bloodstream before it is converted into dopamine in the brain. This allows for a lower dose and helps to minimize side effects. People may also choose to begin treatment with a different type of medication such as dopamine agonists, MAO-B inhibitors or Anticholinergics. A surgical technique called Deep Brain Stimulation (DBS) is also available for certain patients.
Most people with Parkinson’s take more than one medication to help with associated symptoms and managing those medications is an important component of treatment for Parkinson’s disease. If the person shows signs of cognitive decline, all medication should be organized and given by a caregiver. It is important to check with the physician who manages the Parkinson’s disease before adding or discontinuing medications of any type, including medication prescribed by another medical professional.
Since medication doesn’t help all of the symptoms, what else can be done?
Provide visual and audible cues.
Cues will help to substitute for signals that the brain used to send automatically. Visual and audible cues can help one to avoid a common problem called “freezing” — being unable to move because the brain can’t initiate the movement process. Some cues that can help prevent freezing include counting steps out loud, following directly behind someone else, or stepping over bright pieces of tape that have been laid on the floor. Audible cues are simple phrases such as “Stand Tall” for posture and “Step Big” for walking. A therapist specializing in movement disorders can suggest cues and recommend assistive devices.
Be aware of mental health.
Both depression and hallucinations are commonly associated with Parkinson’s disease. As long as there is no threat to health or safety, the caregiver should not try to correct the patient’s mild hallucinations. A change in medication or dose may help. Depression is very common, affecting approximately 1/3 of people with Parkinson’s disease. Because of the overlap of symptoms such as a lack of facial expression, insomnia, difficulty concentrating and fatigue, depression can be difficult to diagnose. If someone you know is experiencing symptoms, please have them evaluated by a psychiatrist.
Ensure adequate nutrition.
Consulting a gastroenterologist or nutritionist can be helpful for people facing swallowing or nutritional difficulties. Getting enough protein while taking levodopa, enough fiber and liquid to help with constipation, and preparing foods that are easy to swallow are just a few of the considerations.
Provide a restful sleep routine.
Insomnia is a common problem, best managed without sleep medicine. Things to try include avoiding fluid intake and heavy meals before bed and going to bed at the same time every night. Recent research suggests that blue light can impair sleep quality.
A great amount of support is available both online and in person from foundations, governments, and major medical centers. These organizations can provide information to help virtually all aspects of Parkinson’s disease including sources of emotional support, home safety suggestions, guidance with legal documents and planning for the future, advice on explaining Parkinson’s to children, are parts of the resources available. Taking advantage of these resources can help improve the quality of life for the patient, caregiver, and family.
Think you know all about Parkinson’s disease?
Jill Sabin Garner received her Bachelor of Science in Nursing (summa cum laude) from New York University. A Registered Nurse and Certified Diabetes Educator, she serves on the boards of both the New York State Coordinating Body and the Metropolitan New York Group of the American Association of Diabetes Educators.