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Patient education: Parkinson disease treatment options — education, support, and therapy (Beyond the Basics)

Patient education: Parkinson disease treatment options — education, support, and therapy (Beyond the Basics)
Literature review current through: May 2024.
This topic last updated: Apr 05, 2024.

PARKINSON DISEASE OVERVIEW — Parkinson disease is a chronic movement disorder that is best managed with a combination of close monitoring, medication, education, support and therapy, exercise, and nutrition. Surgery can be beneficial for some people with Parkinson disease.

This topic will review education, support, exercise and physical therapy, and nutrition for Parkinson disease. The symptoms, diagnosis, and medical treatment of Parkinson disease are discussed separately. (See "Patient education: Parkinson disease symptoms and diagnosis (Beyond the Basics)" and "Patient education: Parkinson disease treatment options — medications (Beyond the Basics)".)

PARKINSON DISEASE EDUCATION — Being diagnosed with a chronic disease can be a frightening experience, filled with uncertainty about what the future holds. This is especially true if the person knows a friend or family member who has experienced the disabling effects of Parkinson disease.

In the first months and years after being diagnosed with Parkinson disease, it is important to gather information about initial symptoms and the treatment options that are available.

PARKINSON DISEASE SUPPORT — A person may respond to the diagnosis of Parkinson disease with anger, fear, depression, anxiety, resentment, or a combination of these emotions. Concerns about social and financial well-being are common.

How can I get help? — Support groups can help the patient and family to interact with other individuals who have the same diagnosis to allow these people to share experiences and information. Support groups also provide opportunities to hear speakers talk about various aspects of Parkinson disease. Several national groups are listed below. (See 'Where to get more information' below.)

If you feel sad or anxious, talk to your doctor or nurse. Effective treatments for depression and anxiety are available. Treatment can include:

Counseling (with a psychiatrist, psychologist, nurse, or social worker)

Medicines that relieve depression

Exercise, light therapy, and meditation

Other treatments that pass magnetic waves or electricity into the brain

People with early-onset Parkinson disease may benefit from a group composed of similar-aged patients. A handbook (Parkinson's Disease Handbook) and other informative publications geared for patients and families are available through the American Parkinson Disease Association, Davis Phinney Foundation (Every Victory Counts manual), and Parkinson’s Foundation.

Other types of support are available for people with Parkinson disease and their families, including psychologic, financial, legal, or occupational counseling. A physician, nurse, or social worker can usually provide contact information for these services in the local area. If the health care team does not have specific local resources, patients, families, and caregivers can reach out to the helplines and hotlines at the foundations above, including the Parkinson’s Foundation (1-800-4PD-INFO / 1-800-473-4636), American Parkinson Disease Association (1-800-223-2732), and Davis Phinney Foundation ([email protected] or 1-866-358-0285).

Get help right away if you are thinking of hurting or killing yourself! — Sometimes, people with depression think of hurting or killing themselves. If you ever feel like you might hurt yourself, help is available:

In the US, contact the 988 Suicide & Crisis Lifeline:

To speak to someone, call or text 988.

To talk to someone online, go to www.988lifeline.org/chat.

Call your doctor or nurse, and tell them that it is urgent.

Call for an ambulance (in the United States and Canada, call 9-1-1).

Go to the emergency department at the nearest hospital.

EXERCISE AND PHYSICAL THERAPY — Many studies suggest that exercise may slow the progression of Parkinson disease. However, this will have to be confirmed by prospective clinical trials to document this effect on disease progression.

Exercise can also help patients feel better, both physically and mentally. Aerobic exercise, such as biking, may have a positive effect on disease status while improving quality of life and socialization. Favorable studies have appeared in the medical literature on exercises to improve balance, flexibility, and strength (including dance and tai chi). However, these reports will need to be confirmed in larger groups of people followed for longer periods of time.

Exercise can help to prevent some of the complications of Parkinson disease caused by rigidity and flexed (or bent) posture, such as shoulder, hip, and back pain. The benefits of exercise will persist as long as exercise continues.

Many patients who participate in an exercise program feel more confident and gain a sense of control over their disease. Parkinson-specific exercise programs also provide a source of social support and camaraderie, separate from and complementary to the support options above.

Simple strengthening and stretching exercises are important for everyone with Parkinson disease. Aerobic exercises, such as walking (outdoors or on a treadmill, with support), riding a stationary bicycle, swimming, or water aerobics, are easy to perform and usually energizing. A physical therapist can help you develop an exercise program that suits your needs.

To find a Parkinson-specific exercise program in your area, ask the health care team for recommendations and contact the foundations above or your local community center, senior center, or Parkinson disease support groups for ideas. There are many Parkinson-specific exercise organizations with locations and classes throughout the US, including Rock Steady Boxing, Dance for PD, Pedaling for Parkinson's, and more.

One positive consequence of the COVID-19 pandemic was the sharing of many recorded exercise classes and resources online, so that individuals living far from a Parkinson-focused class or gym could still enjoy the benefits and try out different exercise modalities. Online classes also provide opportunities to remain active despite bad weather and to bring care partners and other family members (including children and/or grandchildren) into the exercise regimen of the person with Parkinson disease. Examples of online offerings include:

APDA-Greater St. Louis Chapter YouTube Channel

Parkinson's Foundation PDHealth@Home

Power for Parkinson's

Dance for PD at Home

U-Turn Parkinson's Workout Series

NeuroFlex

Total HealthWorks

Directory of additional Parkinson online exercise offerings from Stanford

PARKINSON DISEASE SAFETY ISSUES

Falls prevention — As Parkinson disease gets worse, the risk of falling increases. To reduce this risk, patients and care partners are encouraged to make the home as safe as possible by:

Installing shower or tub grab-bars, nonslip tape on floors, and elevated toilet seats with handles.

Having adequate lighting in the house, especially at night. Use of light-sensitive night lights or lamps on a timer may be helpful.

Securing loose rugs, which can increase the risk of tripping.

The Centers for Disease Control and Prevention (CDC) has fall prevention materials available online.

Driving safety — Most people with Parkinson disease can continue to drive as long as their motor and cognitive symptoms remain mild. Driving ability must be monitored and formally reevaluated if and when motor and cognitive symptoms worsen. The Association for Driver Rehabilitation Specialists can provide names of local occupational therapists or driving specialists who can perform driving tests to see if Parkinson disease is affecting driving, and neurologists can provide referrals for these evaluations.

If it is necessary to stop or cut back on driving, other forms of transportation are available, such as taxi cabs, shuttle buses, public buses, or trains. Walking, if practical, is always a healthy way to get around. The Eldercare Locator is a resource that can provide assistance in locating help with transportation as well as housing, financial or legal services, health insurance, and long-term care.

PARKINSON DISEASE SPEECH THERAPY — Problems with speech, including slurred speech and speaking too quietly, are common in people with Parkinson disease. These problems develop as muscles weaken in the voice box, throat, mouth, tongue, and lips.

A voice or speech therapist can help overcome speech problems. This may involve training to speak more loudly and clearly, conserving energy when speaking (speaking only important words and phrases), and using nonverbal methods such as letter or word boards or hand signals. Patients and families can locate Parkinson-trained speech therapists in their area through the Lee Silverman Voice Treatment website (www.lsvtglobal.com/).

A speech therapist can also evaluate and treat problems with swallowing. The medical term for difficulty with swallowing is "dysphagia." Dysphagia can increase the risk of coughing, choking, or inhaling food (aspiration), which can lead to pneumonia. Treatments for dysphagia may include sitting up straight while eating, tilting the head slightly forward, eating small bites and chewing completely, and not speaking while eating. Another treatment is the use of a powder to thicken liquids or thin food, making them easier to swallow. For individuals who take large gulps, straws or cups that limit the volume of each swallow can be helpful and minimize choking risks.

PARKINSON DISEASE NUTRITION — There is no specific diet recommended for people with Parkinson disease. Several studies suggest that the MIND diet (Mediterranean-DASH Intervention for Neurodegenerative Delay) reduces the risk of dementia in people at risk for or with early signs of Parkinson disease, and reduces the risk of Alzheimer disease.

Some patients notice that protein in a meal can block the effect of a dose of levodopa taken around meal time. People who notice this effect should speak with their healthcare provider about adjusting the timing of their medications, rather than simply avoiding protein, which can lead to loss of muscle mass.

It is important to be sure that the person is getting an adequate number of calories and nutrients to maintain strength, bone structure, and muscle mass. Problems with unintended weight loss, poor appetite, eating and swallowing, or preparing food should be discussed with a healthcare provider. The provider may recommend meeting with a registered dietitian.

Constipation is a frequent problem for people with Parkinson disease because of disease-related changes in the bowels or as a side effect of Parkinson disease medications. Constipation can usually be managed with changes in diet, increased hydration, increased exercise, and occasionally the use of a laxative or stool softener. Some people with Parkinson disease experience straining with bowel movements because of incomplete relaxation of muscles in the pelvis. Using step stools to elevate the knees while seated on the toilet can help relax the pelvic muscles. A full discussion of treatments for constipation is available separately. (See "Patient education: Constipation in adults (Beyond the Basics)".)

WHERE TO GET MORE INFORMATION — Your healthcare provider is the best source of information for questions and concerns related to your medical problem.

The following organizations also provide reliable health information:

Parkinson's Foundation

American Parkinson Disease Association

National Institute of Neurological Disorders and Stroke

This article will be updated as needed on our web site (www.uptodate.com/patients). Related topics for patients, as well as selected articles written for healthcare professionals, are also available. Some of the most relevant are listed below.

Patient level information — UpToDate offers two types of patient education materials.

The Basics — The Basics patient education pieces answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials.

Patient education: Parkinson disease (The Basics)
Patient education: Medicines for Parkinson disease (The Basics)
Patient education: Tremor (The Basics)

Beyond the Basics — Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are best for patients who want in-depth information and are comfortable with some medical jargon.

Patient education: Parkinson disease symptoms and diagnosis (Beyond the Basics)
Patient education: Parkinson disease treatment options — medications (Beyond the Basics)
Patient education: Constipation in adults (Beyond the Basics)

Professional level information — Professional level articles are designed to keep doctors and other health professionals up-to-date on the latest medical findings. These articles are thorough, long, and complex, and they contain multiple references to the research on which they are based. Professional level articles are best for people who are comfortable with a lot of medical terminology and who want to read the same materials their doctors are reading.

Bradykinetic movement disorders in children
Clinical manifestations of Parkinson disease
Cognitive impairment and dementia in Parkinson disease
Diagnosis and differential diagnosis of Parkinson disease
Epidemiology, pathogenesis, and genetics of Parkinson disease
Management of nonmotor symptoms in Parkinson disease
Medical management of motor fluctuations and dyskinesia in Parkinson disease
Nonpharmacologic management of Parkinson disease
Overview of tremor
Palliative approach to Parkinson disease and parkinsonian disorders
Initial pharmacologic treatment of Parkinson disease
Device-assisted and lesioning procedures for Parkinson disease

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Daniel Tarsy, MD, who contributed to earlier versions of this topic review.

Disclaimer: This generalized information is a limited summary of diagnosis, treatment, and/or medication information. It is not meant to be comprehensive and should be used as a tool to help the user understand and/or assess potential diagnostic and treatment options. It does NOT include all information about conditions, treatments, medications, side effects, or risks that may apply to a specific patient. It is not intended to be medical advice or a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances. Patients must speak with a health care provider for complete information about their health, medical questions, and treatment options, including any risks or benefits regarding use of medications. This information does not endorse any treatments or medications as safe, effective, or approved for treating a specific patient. UpToDate, Inc. and its affiliates disclaim any warranty or liability relating to this information or the use thereof. The use of this information is governed by the Terms of Use, available at https://www.wolterskluwer.com/en/know/clinical-effectiveness-terms. 2024© UpToDate, Inc. and its affiliates and/or licensors. All rights reserved.
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