Living with Parkinson's Disease
Anthony Julius, MD - Neurologist
Arlene learned that she had Parkinson’s disease 22 years ago, on her 50th birthday. Despite the disease’s progression, the Florida university professor continued teaching and traveling until a few years ago. Like many people, the first signs of Parkinson’s were subtle. “I started having trouble buttoning the sleeves on my blouses and thought something was wrong with my fingers,” she says. “I also experienced some difficulty getting out of a chair and moved more slowly than I had in the past. One day, a Parkinson’s donation solicitation arrived in the mail. I had all but one symptom listed, so I made an appointment with my doctor.”
What is Parkinson’s Disease?
Parkinson's disease is a gradually progressive degenerative disorder of the central nervous system. It belongs to a group of conditions called movement disorders. There are 4 characteristic problems caused by Parkinson's disease:
- Tremor at rest
- Balance problems
- Slowness of movement
What causes Parkinson’s disease?
Parkinson's disease occurs when neurons in certain areas of the brain, including the substantia nigra, are slowly destroyed. The substantia nigra is responsible for producing dopamine, a chemical messenger that transmits signals within the brain, to help coordinate movement.
The exact reason for this destruction is not completely known. In some people, it may be related to genetics, environment, or a combination of both. The end result is a deprivation in the brain of dopamine. Dopamine helps regulate movement, and its loss leads to increased tone, rigidity, and slowness of movement. Lack of dopamine results in the symptoms associated with Parkinson's disease.
What are the symptoms of Parkinson’s disease?
The American Parkinson Disease Association (APDA) estimates that 1 million Americans, and up to 10 million worldwide, are living with Parkinson’s disease. Some celebrities, including the actor, Michael J. Fox, and singer, Neil Diamond, have spoken publically about their struggles with Parkinson’s disease. Typically, symptoms start very slowly and subtly. Some people notice a tremor in just a single finger; over time, this tremor begins to affect the whole hand, and then the entire arm. Other symptoms may begin gradually, becoming more severe over time. Not everybody with Parkinson’s disease develops every single symptom. In addition, some of these symptoms (specifically depression, sleep disturbances, and loss of smell) may start years before a tremor is noticed.
The most common symptoms of Parkinson’s disease include:
Shakes or tremors:
- Usually occur at rest and may disappear while you are purposely moving.
- Usually absent during sleep.
- May worsen when you are under emotional stress.
- May take the form of “pill rolling” (a rubbing movement of the index finger and thumb).
- Tremors tend to start in a single finger on one hand, but may progress to the entire arm, head, lips, feet.
Problems with balance and coordination:
- Walking in a very unsteady fashion.
- Increased risk of falling.
- Writing, dressing, and eating become more difficult.
Muscle stiffness or rigidity:
- If someone takes your arm and tries to move it, it seems as if you are purposely tightening up your muscles and resisting, although it is completely involuntarily.
- Handwriting may become very small and cramped as it becomes more difficult to initiate movement.
- Loss of the ability to participate in automatic movement, such as blinking and swinging your arms while walking.
- Swallowing becomes increasingly difficult, and you may begin to drool and have an increased risk of choking on food.
- Stiffened facial muscles may cause unblinking, unsmiling, or a mask-like stare.
- Difficulty initiating movement and difficulty rising from a seated position.
Slowed movements (bradykinesia):
- Walking and other movement becomes very slow.
- Shuffling when walking.
- Steps become shorter and shorter.
Problems with speech:
- Your voice may become softer.
- You may speak in a flat, monotone voice.
Other symptoms that may occur along with Parkinson’s disease:
- Stooped, bent-over posture.
- Difficulty sleeping, which can be the result of restless leg syndrome, the inability to stop moving the legs at night.
- Cramping, burning pain in the legs.
- Personality changes.
- Sexual dysfunction.
- Loss of bladder control.
- Loss of the sense of smell.
- Changes in body temperature.
- Heavy sweating.
- Memory problems, sometimes including dementia.
- Constipation caused by slowing of the intestinal muscles that aid digestion.
- Sudden, large drops in blood pressure upon first standing up, which can result in fainting or falling.
- Seborrhea, which causes the skin to look oily.
- Nocturia, increased urine frequency and urgency at night.
- Freezing in advanced stages.
How is Parkinson’s disease diagnosed?
There are no lab tests to definitively diagnose Parkinson's disease. Your doctor will ask about your medical history and do a thorough physical exam. He or she will examine you for the most common symptoms of Parkinson’s, but they may not all be present. If that is the case, your doctor may examine you every few months to check on your symptoms.
A neurological exam includes a range of tests to evaluate your strength, coordination, balance, and other aspects, such as:
- Muscle tone
- Rapid alternating movements
- Gait, posture
- Postural stability
- Quickness and precision of movement
- Observation of a tremor (during rest or activity)
A mini-mental status test may be done, and activities of daily living evaluated, like dressing, cutting and eating food, swallowing, hygiene, walking, and falls. If the diagnosis is not clear, you may be given blood and/or urine tests to eliminate the possibility of other conditions with similar symptoms. These tests may include:
If imaging is necessary to further research and diagnose the condition, those tests may include:
- MRI scan
- CT scan
- DAT scan—A type of SPECT scan
- PET scan—To evaluate glucose metabolism. PET scans are usually considered experimental in Parkinson’s disease and usually only done as part of research protocols
Your doctor also may give you a trial of levodopa, a medication that increases the amount of dopamine your brain produces. A positive response to this medication can help to confirm the diagnosis.
Are there risk factors for developing Parkinson’s disease?
A risk factor is something that increases your likelihood of getting a disease or condition. It is possible to develop Parkinson’s disease with or without these risk factors, but the more risk factors you have, the greater your likelihood of developing the disease. Factors that increase your chance of Parkinson's disease include:
- Age: The onset of the disease usually ranges from ages 35 to 85, but most people with Parkinson’s disease are diagnosed after age 50. It is relatively unusual to develop Parkinson’s disease before the age of 40, although it is possible.
- Gender: Men are about 1.5 times more likely than women to develop Parkinson’s disease.
- Genetics: A number of genes are associated with Parkinson's disease. Generally, people with these abnormal genes develop Parkinson's disease before the age of 50. This type of Parkinson's tends to run in families. The vast majority of Parkinson's disease, though, occurs in people over the age of 60 and the role of genetics in these individuals is less clear.
- Race: Research suggests that people of African or Asian descent have a slightly lower rate of Parkinson’s disease than Caucasians.
How is Parkinson’s disease treated?
If you have an early, mild case of Parkinson’s disease, your doctor may recommend that you focus your treatment plan on lifestyle changes, such as diet and exercise. As the disease progresses, he or she may prescribe medication to lessen some symptoms. Lifestyle and medication options include:
Living a healthful lifestyle helps control symptoms of Parkinson’s disease. Lifestyle changes are particularly helpful in the early stages and may help you delay the start of medications. Lifestyle changes include:
- Getting Adequate Rest: Try to sleep at least 8 hours per night and consider taking 1-2 naps during the day to stay refreshed. Consult your doctor if symptoms, such as restless leg syndrome, rapid eye movement (REM)-behavior disorder, tremor, or difficulty turning in bed at night, interfere with your ability to sleep.
- Eating a Balanced Diet: Consider consulting a dietitian to learn about a healthful diet. Eating well gives you more energy and helps you manage the symptoms of Parkinson’s disease. Later in the disease, changes may have to be made to your diet because of swallowing difficulties. These may include a diet of soft or chopped foods, or thickened liquids. It is important to keep an eye on your weight, especially weight loss. Malnutrition can worsen the symptoms of Parkinson’s disease.
- Exercising Regularly: An exercise program offers many benefits, such as increased strength and stamina, optimized coordination, decreased rigidity and improving flexibility, and delayed progression of the disease. Your doctor can recommend a physical therapist for you to work with, and you may want to try Tai Chi, a type of martial art that is used to promote health. This form of exercise has shown benefits in improving balance in those with Parkinson's disease.
- Participating in a Speech Therapy Program: Speech therapy is useful in some people who have verbal communication impairment, including the ability to speak loudly enough.
- Managing Your Stress: Stress worsens the symptoms of Parkinson’s disease. Learning stress management can help control your symptoms.
- Managing Depression: Facing a chronic, progressive disease is very stressful for everyone involved. Depression is common in people with Parkinson’s disease. Talk to your doctor about support groups in your area. It is valuable to share your experience with others who are coping with the same condition. If you experience symptoms of depression that last 2 weeks or longer, contact your doctor. Depression is treatable.
- Modifying the Home to Enhance Safety and Access: Many individuals use safety equipment to assist in improving quality of life. Occupational and physical therapists can assist in determining when equipment, such as tub rails, raised toilet seats, or other home modifications may be useful.
Medications for Parkinson’s disease work in different ways. The primary strategy is to increase the amount of dopamine or to activate the dopamine receptor. Although most people respond to medications initially, the effects may wear off over time as the disease progresses. When a medication stops working, your doctor may increase the dose, switch medications, stop and then restart a medication, or add on another medication. In addition, many people experience disabling side effects, especially rapid “wearing-off” of the drug and abnormal movements called dyskinesia. Your doctor will determine the best course of treatment for your specific circumstances, and inform you of any side effects or special precautions to take with your medications.
Surgical procedures are available for the treatment of Parkinson’s disease, but, cannot cure the disease. These procedures may help relieve symptoms for a period of time. During surgery, you will be sedated, but kept awake. This is important so that the surgeon can test for potential side effects. Surgery is usually reserved for those with advanced symptoms and most commonly includes:
Deep Brain Stimulation (Neurostimulation)
In this technique, placing a stimulating electrode lead into different regions of the brain can reduce symptoms of advanced Parkinson’s disease. A wire is tunneled under the skin and attached to a generator that is implanted in the patient’s chest. A small, handheld magnet is passed over the generator switch to turn it on and off.
When the device is activated, it sends an electrical impulse to its destination and acts as a kind of brain pacemaker. The generator requires replacement every 3-5 years; some batteries last longer now. Advantages of deep brain stimulation include being:
- Less invasive than other surgical procedures.
- Potentially reversible, as opposed to causing irreversible damage.
- Adjustable—neurologist specialized in deep brain stimulation can adjust the settings on the deep brain stimulator based on the patients’ symptoms.
As with any surgical procedure, complications can be a risk factor. Close follow-up with a neurologist with expertise in movement disorders and deep brain stimulation is essential for optimizing the benefit of deep brain stimulation, and minimizing adverse events.
Like Arlene and the millions of others living with Parkinson’s, the disease can impact every part of life. However, with the above treatment measures, the majority of people with Parkinson’s disease can still do their daily activities and lead productive lives. Her advice? “Pop the pills and persevere. Learn all you can about Parkinson’s, so you can help manage your case. Join a support group. Laugh. Do as much as you can yourself, rather than depending on family members. And at least once a year, see a specialist involved with research or associated with a medical school. Life does go on and there are ways to live with this disease.”