by Veronica Todaro, MPH, Executive Vice President, Parkinson’s Foundation
Parkinson’s Disease (PD) is a condition that affects the body’s motor system, causing symptoms such as tremor, rigidity (stiffness), and impaired balance and coordination. Symptoms of PD are the result of a loss of dopamine-producing brain cells. Parkinson’s disease most often affects people over the age of 50, though it can also develop in younger individuals.
Nearly one million Americans are living with Parkinson’s disease (PD), that is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease. One group that is the most vulnerable population within the Parkinson’s community is women. Studies indicate that women diagnosed with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day and receive lower-quality healthcare than men.
Researchers are also discovering that women with Parkinson’s are uniquely vulnerable when it comes to care and support. Women with PD are more likely to have overwhelmed care partners, require outside, paid caregiving and receive less social support. Those diagnosed with the disease can encounter greater hurdles in obtaining an accurate diagnosis, experience more non-motor symptoms, face greater treatment-related dyskinesias and may be less likely to see medical specialists than men with PD.
“We know that people with Parkinson’s are physically, psychologically and socially vulnerable,” said Allison Willis, MD, a movement disorder specialist at the University of Pennsylvania Movement Disorder Center, a Parkinson’s Foundation Center of Excellence.
In general, women have an overall lower risk of being diagnosed with Parkinson’s than men. Researchers believe this could be due to the natural protection that estrogen provides in the brain or by another hormone not yet known. However, the total number of women living with PD is not far behind that of men, because, on average, women live longer.
Women also have side effects from their Parkinson’s medications that can cause big changes in their symptoms, the most common being dyskinesias (involuntary, erratic, writhing movements). Additionally, despite having greater reported improvements than men, women are less likely to receive deep brain stimulation to treat their Parkinson’s.
The symptoms of PD appear when the brain does not produce enough of a chemical called dopamine. Dopamine carries messages between the part of the brain where it’s produced (called the substantia negra) and the parts of the brain that control movement. This communication helps people have smooth and coordinated muscle movements. In PD, the cells that produce dopamine are damaged, and eventually—when 60 to 80 percent of these cells are damaged—they do not produce enough dopamine to enable smooth movement; when this occurs the motor symptoms of PD (such as shaking and tremor) begin to develop.
Many of the symptoms of PD are motor symptoms, affecting a person’s movement, strength, balance, and coordination. Other symptoms may be emotional or psychological.
Main Motor Symptoms:
- Shaking or tremor at rest
- Slowness of movement
- Stiffness or rigidity of arms, legs, or trunk
- Trouble with balance, causing falls
- Small cramped handwriting
- Reduced arm swing on the affected side
- light foot drag on the affected side; creates a shuffled walk
- “Freezing”—being stuck in place when attempting to walk
- Loss of facial expression due to rigidity of facial muscles
- Low voice or muffled speech
- Tendency to fall backwards
- Decreased ability in automatic reflexes, such as blinking and swallowing
- Anxiety beyond the normal response to stress
- Hallucinations, psychosis
- Sleep disturbances (vivid dreams, talking and moving during sleep)
- Increase in dandruff or oily skin
There is no definitive test to diagnosis PD. To make a diagnosis, doctors instead use the patient’s medical history and a neurologic exam. And, in order to rule out other diseases, doctors may use brain scans or laboratory tests.
Talking to Your Doctor
Your primary care physician, or family doctor, is likely to be the first healthcare provider you’ll see for diagnosis and treatment planning for PD. Due to the complex nature of PD, your healthcare team will probably expand to include specialists and other types of professionals. (A list of possible members of a healthcare team is included below in “Treating Parkinson’s Disease.”) You may want to ask your primary care physician for referrals as you build your healthcare team.
When you visit you primary care physician and other members of your team, you may find it helpful to bring a caregiver or loved one. Someone who knows you well and understands how PD is affecting you can be a valuable advocate for your care, help you communicate with your healthcare team, and take notes during doctors’ visits so that you have a good record of your treatment plan and current condition.
Treating Parkinson’s Disease
There is currently no cure for PD. Several medications, however, can help relieve symptoms—dramatically, in some cases. As well, a surgery called deep brain stimulation (DBS) can also help relieve symptoms in people whose disease doesn’t respond to medication.
Many of the drugs used to treat PD are targeted at the lack of dopamine in the brain. They work by temporarily replenishing dopamine or by imitating the action of dopamine. These medications, call dopaminergics, can help reduce motor symptoms such as rigidity and tremor and improve speed and coordination.
Deep Brain Stimulation
Deep brain stimulation is usually recommended only for patients whose symptoms are not adequately controlled with medication. The procedure involves implantation of a battery-operated neurotransmitter, a device that is similar to a pacemaker. The neurotransmitter delivers electrical stimulation to areas of the brain that control movement and blocks the abnormal nerve signals that cause motor symptoms of PD such as tremor. Healthy brain tissue is not harmed during DBS.
Parkinson’s disease affects a person in many ways—physically, mentally, and emotionally. As a result, PD is best treated by a team of healthcare professionals. Specialists that may make up this team include:
· Primary care providers
· Physicians assistants
· Mental health professionals (social workers, psychiatrists, psychologists)
· Physical therapists or occupational therapists
· Speech-language pathologists
· Nutritionists or dieticians
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How Fast Does It Progress?
The course of PD varies from person to person, progressing more quickly in some than in others. Parkinson’s disease may begin with subtle, gradually occurring symptoms.
Living with Parkinson’s Disease
The challenges of living with PD may affect you in many different ways—from your emotional well-being and overall health to your ability to get around and care for yourself. By building a solid support system, knowing how to access the resources you need, and educating yourself about how to cope with the changes you’re experiencing, you’ll be prepared to keep yourself safe, healthy, and comfortable.
Your Support System
To build your support system, look to members of your healthcare team, family and friends, community and church groups, and PD support groups. Your support system can help you with tips for coping with PD and practical assistance such as transportation to and from medical appointments and provide emotional comfort.
Some of the Challenges of Living with Parkinson’s Disease
Living with a chronic, progressive condition like PD not only affects you physically but can also have a large emotional impact. As well, people with PD can experience cognitive changes (changes in the thinking process), making adjustment to life with this condition even more challenging.
Some of the challenges to daily life that PD may present include:
- Psychosis (hallucinations or delusions)
- Trouble sleeping and excessive daytime sleepiness
- Cognitive changes (slowness in thinking, loss of memory, decreased attention span, difficulty with word finding)
- Trouble with speech
- Trouble eating (difficulty with chewing or swallowing)
- Risk of falling
- Difficulty with personal care such as grooming, bathing, and getting dressed
How to Cope
Your best source of information for how to cope with daily life when you have PD is likely your healthcare team. Different members of the team can address topics within their area of expertise or, if necessary, help you find additional help. For example, a mental health professional can help you cope with depression and other mood-related concerns, a speech pathologist can address difficulties with speech, and physical or occupational therapists can help with motor symptoms. When in doubt about whom to turn to, ask your primary care physician for a recommendation.
By making lifestyle choices that support your overall well-being and PD-related health issues, you may feel better, have better control over your symptoms, and protect yourself from accidents such as falls.
What You Can Do:
- Exercise: Physical activity can help you maintain balance and mobility as well as help slow the progression of PD. Talk to your primary care physician, physical therapist, and other appropriate members of your healthcare team about what kinds of exercises are safe for you, how often you should exercise and at what intensity, and what activities will benefit you the most.
- Maintain a healthy diet: Proper nutrition can help you maintain a healthy weight, lower your risk of other illness (heart disease and cancer, for example), and help keep your body and bones strong—an important consideration for people with PD, due to the risk of falling. Eating well can also help you manage constipation, which is common with PD. A nutritionist or dietician help you create a healthy eating plan. Basic guidelines include choosing a variety of foods that provide energy, protein, vitamins, and minerals; eating plenty of whole grains, vegetables, and fruits and avoiding foods high in fat, saturated fat, and cholesterol; reducing your sugar and sodium intake; and, if you drink alcoholic beverages, doing so moderately.
- Make your home safe and easy to get around and make amenities (such as bathrooms and the kitchen) easy and safe to use: Your home should be well-lit, necessary items should be easy to reach, and rooms, stairs, and hallways should be kept free of clutter. To minimize the risk of slipping or falling, floor surfaces shouldn’t be slippery, and throw rugs should have rubber backing. In the bathroom, tubs and shower stalls should have at least two handrails and non-skid rubber bath mats; some people also use benches or shower chairs. Kitchens can be made safer and easier to use with additions like longer cabinet handles instead of knobs and single-handed faucets. As well, keep commonly used items (food, spices, potholders, and pots and pans, for example) easy to find and reach. In the bedroom, make sure your bed is easy to get in and out of, use a night-light, keep a flashlight by your bedside, and have lamp and light switches within easy reach form the bed.
- Have a phone in critical locations. Any room where you spend a lot of time (such as the living room and bedroom) or where there’s a greater risk of injury (the bathroom and kitchen, for example) should be equipped with a cordless phone that’s always kept within reach.
- Have smoke alarms in important locations like the bedroom and kitchen.
“I have a long list of symptoms, but freezing gait interferes with my life the most,” said Debbie Flamini, 53, diagnosed with early onset Parkinson’s eight years ago. “Medications help, but then there's the dyskinesia. If you were to meet me you would notice the dyskinesia, but you would also think I look pretty good. As all of us with Parkinson's know, it's what you don't see that sometimes is the most challenging.”
In order to better help women with Parkinson’s have a better quality of life, like Debbie, the Parkinson’s Foundation announced the first patient-centered research agenda for women living with Parkinson’s. The agenda is based on the data from 11 forums held across the nation where women with Parkinson’s and healthcare professionals gathered to recommend priorities on research and care. Through this collaboration, the Parkinson’s Foundation has developed comprehensive priorities that provide an opportunity to change how Parkinson’s is studied and treated in women.
In addition to developing and promoting a research agenda targeting the needs and priorities of women with PD, the Foundation recently unveiled local education programs throughout the country to reach and empower more women with Parkinson’s to advocate for their own care. This focus on care, research and empowerment are core to the Foundation’s mission of creating better lives, together.
Learn more about how the Parkinson’s Foundation is addressing the needs of women living with PD atwww.parkinson.org/WomenandPD.
- NINDS Parkinson’s Disease Information Page. National Institute of Neurological Disorders and Stroke website. Available at: http://www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm.
(Accessed October 2020)
- Parkinson’s Disease. National Parkinson Foundation website. Available at: http://www.parkinson.org/parkinson-s-disease.aspx.(Accessed October 2020).