Parkinson’s disease (PD) is a slowly progressive disorder. This means it gets worse over time. Parkinson’s affects how you move and other functions within the body.

Parkinson’s 101

One area of the brain that is affected is the substantia nigra, an area in the brain where cells produce dopamine. Dopamine allows nerve signals to travel from one nerve cell to another, sending messages to the muscles of the body. This is how we move, without really thinking about it. When the cells that make dopamine are lost, Parkinson’s symptoms appear. These physical and mental like tremors and slow movement help doctors make a PD diagnosis. There is a lot of research being done all over the world to understand the cause of Parkinson’s. Most scientists agree that the cause includes a combination of genetics and the environment. Research is also underway to find better treatments to improve life for people with the disease.

What does Parkinson’s look like?

Parkinson’s does not look the same in everyone. People can have different symptoms and problems can show up slowly over time. Here are some of the symptoms that affect people with Parkinson’s:

• Shaking (tremor)
• Stiffness (rigidity)
• Slow movement (bradykinesia)
• Quieter voice
• Smaller handwriting
• Body pain
• Feeling tired (fatigue)
• Changes to mood and motivation (depression, anxiety and apathy)
• Difficulty thinking clearly (cognitive changes)

How is Parkinson’s treated?

Doctors, nurses, physical and occupational therapists, social workers, speech therapists, and other professionals work with people with Parkinson’s to help them enjoy happy, active lives.

There are many kinds of medications (pills or patches) that can help people with Parkinson’s. These medications make it easier to walk, stand up and sit down and do other things that are part of a normal day. Sometimes the medications that help with Parkinson’s can make people dizzy, tired or have an upset stomach. But most of these problems can be improved by finding the right combination of medications.

In addition to medications, we are learning more through research and the experiences of other people with PD about how exercise can help people manage their symptoms and might even slow the progression of the disease! Your parent will want to talk to their doctor before starting anything new, but you can feel good about continuing to engage in active sports/activities with your parent.

How will PD affect me?

Things will change over time as Parkinson’s progresses—your parent’s Parkinson’s symptoms will change, meaning family plans, finances, and responsibilities will change, now and for the future. Talk with your parents about your concerns. Together you can figure out solutions.

You may have to do tasks in the house that you did not have to do before. You may also have to help your parent with daily tasks or activities, like getting dressed or cooking meals. You may feel you have to do these chores, but you do not have to like it. It is okay to be angry, sad, resentful, frustrated, embarrassed or feel guilty.

The things your parent with Parkinson’s can do— and the things you can do together—may change over time. It is important to think about different ways to stay connected with your parent and create new activities that you can do together. While your parent will always be your parent, PD might mean that you have to change what you expect of your parent and your family life.

What can I do?

Have family chats once a month or even once a week. Use this time to share with your parents how Parkinson’s makes you feel. They can also explain some of what they are going through. This will help you understand each other better, and you can try to find ways to help each other and reduce stress.

Talk to someone—whoever you feel a connection with. This could be a friend, relative, teacher or counselor. You may have concerns or worries you don’t feel comfortable telling your parents about. Expressing these feelings might help you feel better, and the person might have good advice.

Get involved. Sometimes we feel better when we can DO something to improve a situation. Go to a local Moving Day®, organize your own fundraiser to support PD research through Parkinson’s Champions or raise awareness of PD at your school, church or other community center. The Parkinson’s Foundation can help with ideas on how to get involved.

Connect with other people your age. You are not the only one with a parent with Parkinson’s disease. If your parents are in a Parkinson’s support group, they might know other people with PD with children who would like to talk or hang out. Even your parent’s doctor may know of other children to connect with. Connect online with others in the same situation. Some groups already exist—try searching for the groups “Young Adult Children of Parkinson’s Patients” or “Parkinson’s, Children Living With THEM,” or create your own!

Try different activities to cope and manage stress: Exercise, stay involved in your favorite activities, eat well, get lots of rest and continue to have fun! Write in a journal where you can let out some of your feelings and stress in a safe, confidential way. Write about what part of PD upsets you and conclude entries with something that you feel grateful for in your life.

Get more information. Instead of Googling “Parkinson’s disease,” check out Parkinson.org. It might be a good idea to look at the website with someone who can help you understand the information, like a relative, adult friend, teacher, counselor or coach. Look at the site with your parent, so you learn together.

Parkinson’s disease (PD) not only affects movement; it also affects the autonomic nervous system, which controls and regulates many automatic bodily functions — such as breathing, digestion and body temperature — without us needing to think about them. One of these functions is blood pressure. When we get out of bed or stand up from a chair, our blood pressure drops. To keep blood pressure in check, the nervous system releases a chemical called norepinephrine, which causes our blood vessels to tighten, sending blood from the legs and trunk up to the brain, the “control center” of the body.

People with PD often have lower amounts of norepinephrine. Because of this deficiency, blood pressure may not return to normal immediately after standing, resulting in fatigue, dizziness or even fainting. This type of low blood pressure — caused by a change in position — is called orthostatic hypotension (OH). When it is related to a nervous system disease, like Parkinson’s, it is also referred to as neurogenic orthostatic hypotension (nOH).

Orthostatic Hypotension (OH) is a form of low blood pressure that happens when standing after sitting or lying down.

Symptoms of orthostatic hypotension can include:

• Lightheadedness
• Dizziness
• Fainting
• Falls
• Weakness
• Foggy thinking
• Headache
• Trembling
• Nausea
• Cold hands and feet
• Chest/shoulder pain
• Vision changes

To check for OH, your doctor should take three blood pressure readings: laying down, within 1 minute after standing, after standing for 3 minutes.

Causes of Orthostatic Hypotension

In addition to PD itself, the medications used to treat PD can contribute to OH. Other medications can lower blood pressure as well. These include some antidepressants, diuretics (water pills), drugs for urinary problems and erectile dysfunction and, of course, medications used to treat high blood pressure.

Heart disease, fever, anemia (low red blood cell count) and dehydration can also lower blood pressure. Dehydration is particularly important to watch out for. When people are dehydrated, their body water decreases. Low body water means less circulating blood, which generally leads to low blood pressure.

Diagnosis of Orthostatic Hypotension

If you feel symptoms such as lightheadedness, dizziness or weakness when you stand up after sitting or lying down, you may be experiencing orthostatic hypotension. Your doctor can measure your blood pressure to test for the condition — defined by a drop of at least 20 millimeters of mercury in systolic blood pressure (top number) and 10 millimeters of mercury in diastolic blood pressure (bottom number) within three minutes after standing up.

Treatment of Orthostatic Hypotension (OH)

This condition can put people with Parkinson’s at risk of fainting, losing balance and falling. Recognizing the signs of OH is key to developing strategies to prevent falls, which can result in serious injuries. Stay hydrated by drinking fluids, especially during hot- weather months. Also, when getting out of bed or standing up from a chair, move slowly to give your body time to adjust.

In addition, ask your doctor to review your medications and identify any that may be lowering your blood pressure. Your doctor may decide to reduce the dose of a medication or even eliminate it if no longer needed. 

Talk to your doctor about medications that can help you reduce OH symptoms. Be aware that medications that raise low blood pressure to normal levels when a person is standing may cause high blood pressure when a person is lying down. There may be additional side effects to discuss with your doctor.

Managing Orthostatic Hypotension

• Drink lots of water – at least one cup (8 ounces) with meals and several more throughout the day. Check with your doctor for the right amount for you.
• Practice regular, gentle exercise and avoid long periods of inactivity.
• Work with a physical or occupational therapist to learn exercises that increase blood flow to the heart.
• Eat small, frequent meals. Reduce alcohol and avoid hot drinks and hot foods.
• After consulting your doctor, increase your salt intake by eating prepared soups or pretzels. Note: People with heart disease should avoid this.
• If you expect to be standing for a long period of time, drinking two 8-ounce glasses of cold water quickly will increase blood volume and blood pressure will go up.
• Try wearing thigh or waist-high compression stockings or an abdominal binder.
• Move slowly from lying to sitting and then standing.
• Avoid overheating by limiting your exposure to midday sun during warmer months, very hot showers, hot tubs, saunas, etc.

If you feel dizzy or like you might faint or fall, sit back down immediately – even if you have to sit on the floor.

Research is key to understanding the complex causes of Parkinson's disease (PD), developing treatments, improving care and finding a cure. Learn more about the research process and how to get involved.

Thinking about getting involved in research?

Benefits:

• Advance prevention, treatments and a cure.

• Get early access to treatments that may be helpful.

• Receive expert medical guidance.

• Help scientists learn how treatments affect people differently.

Considerations:

• Side effects, including unknown ones, may occur.

• Some studies have a placebo group, so not all participants receive the treatment.

• The treatment may not work as expected.

What is a clinical trial?

Clinical trials are research studies involving human participants. There are two main types: observational studies and interventional trials.

• Observational studies analyze real-life situations to uncover patterns and connections. These studies do not test treatments but instead ask questions about human behavior or take measurements. Examples:

  • Diagnostic trials look for disease biomarkers (measurable signs) to diagnose or track disease progression.

  • Genetic trials explore how genes affect disease and help people identify treatments or trials specific to their genetic makeup.

• Interventional trials test new treatments such as medications, surgeries, therapies or devices to ensure they are safe and effective. Examples:

  • Therapeutic trials test a treatment's safety and effectiveness.

  • Preventive trials explore ways to stop diseases from developing.

How are new treatments approved?

The U.S. Food and Drug Administration (FDA) requires new treatments to undergo three phases of clinical trials before approval. After approval, some treatments enter a fourth phase. Safety is checked at every stage. Phases include:

Phase 1: Test safety with small group

Phase 2: Check if it works for more people

Phase 3: Test on a larger scale

FDA Approval

Phase 4: Track long-term effects after approval

How can I get involved in research?

Your participation in research can help scientists and doctors discover new treatments, improve care and find a cure. Learn about the different ways you can contribute to Parkinson's research. Visit Parkinson.org/JoinAStudy.

The Parkinson's Foundation is committed to supporting groundbreaking research initiatives, including these priority programs:

• PD GENEration: Mapping the Future of Parkinson’s
  This global study offers genetic testing for PD-related genes and genetic counseling at no cost for people with Parkinson’s. Participate in-person or virtually from home. Learn more and enroll at Parkinson.org/PDGENEration.

• Parkinson’s Foundation Surveys
  Your feedback helps us better understand the needs and experiences of people with PD and their care partners. Sign up for our surveys to help us improve care. Visit Parkinson.org/Surveys.

Become a Research Advocate

The Parkinson’s Foundation connects people with PD and care partners to researchers to improve clinical trials and keep research focused on what matters most to the community.

Research advocates learn how the research process works, ways to engage with researchers and how to educate their communities. Training is available online or through an in-person workshop.

Learn more at Parkinson.org/ResearchAdvocate.

Tips for Finding the Right Study for You

• Talk to your doctor. Get help weighing the potential risks and benefits.

• Check eligibility. Certain studies have specific age, disease progression or genetic requirements.

• Consider time and travel commitments. While some studies may require regular visits, others can be done virtually.

• Discuss the study with your family. Understanding how participation might impact everyone will help you make an informed decision.

• Make sure the study is free to join. There should never be a fee or cost to participate in a clinical trial.

Parkinson’s disease (PD) affects everyone differently. While symptoms can vary, all people with PD experience a gradual loss of brain cells that produce dopamine, a chemical essential for controlling movement and other important body functions.

Why this cell loss happens is not fully understood, but scientists believe it results from a combination of genetic, environmental and lifestyle factors. Understanding the role of genetics in Parkinson's is helping researchers develop new treatments and move closer to a cure.

Quick Facts

• Genetic factors can increase the risk of developing PD.
• 10% to 15% of all people with PD have a genetic tie to Parkinson's.
• Participation in genetic studies helps scientists understand more about the causes and progression of PD.

Genetic Testing:

• Empowers you, your healthcare team and your family to make informed health decisions.
• Can help you determine if you can participate in studies related to your genes.
• May involve costs if outside of a study.

Genetic Studies:

• Some offer genetic testing and counseling at no charge.
• Results are used to advance research.
• May lead to targeted therapies tailored to your genes.

Understanding Genetics

Genetics is the study of how traits, like eye color and height, are passed down from parents to children. It begins with our DNA, which is like a cookbook containing about 23,000 genes, or “recipes,” that shape who we are. Each gene gives instructions for making proteins. These proteins are essential because they help repair our body, support our immune system and perform many other important tasks.

Genes can have changes called variants, which we inherit from our parents. Most variants are harmless, but some can affect how proteins work and increase the risk of health issues. Ultimately, our health is shaped by the combination of our genes, lifestyle and environment.

How Genetics Influence Parkinson’s

Changes in specific genes, such as LRRK2, GBA and SNCA, can increase the risk of developing Parkinson's or may influence how PD symptoms progress for people already diagnosed.

Researchers are studying how these genetic changes vary among different groups to understand why Parkinson’s is more common in certain communities. Understanding these genetic differences can give us clues about why PD varies from person to person.

Genetic Testing

Genetic testing may help identify risks for Parkinson's or guide treatment options.

• Testing typically involves analyzing blood or saliva samples to check for changes in DNA or proteins.
• Some tests can be done at home and mailed in, while others require an in-person office visit.
• Costs and insurance coverage can vary.

Before getting genetic testing, talk to your doctor about the process and what the information could mean for you and your family. Genetic counselors can help you know what to expect, navigate any emotions that come up, understand your results and guide next steps.

Parkinson’s Foundation Genetic Study

PD GENEration: Mapping the Future of Parkinson's Disease is a global study offering genetic testing and counseling at no cost to people diagnosed with PD. You can enroll online and give a blood sample using an easy at-home kit or visit a participating location.

PD GENEration participants not only help advance research but also receive something back — their test results. The study uses a reliable and secure genetic test to identify changes in established genes linked to PD. You can also choose to have your results reviewed for any new gene variations currently being investigated.

Learn more and enroll at Parkinson.org/PDGENEration.

Advancing Personalized Care

Current studies are looking into treatments for people with specific changes or variants in genes like LRRK2, GBA or SNCA. Researchers believe that targeting these genes may lead to better, personalized therapies. Understanding your genetics can help you find out if you qualify for these studies.

Tips for Navigating Genetic Testing & Research

• Contact our Helpline to ask questions about genetic testing. You can also learn more about the PD GENEration study.
• Know what to expect. Most people will not test positive for a PD-related genetic change, but researchers need this information to advance our understanding of Parkinson's.
• Stay updated about ongoing genetic research. Studies like PD GENEration continue to offer valuable insights into PD.

Many people with Parkinson’s disease (PD) want to live at home for as long as possible. However, there may be important reasons why long-term skilled nursing care would provide a more suitable living situation for the care partner and loved one with PD.

Although it is common to experience guilt and mixed feelings about transitioning a loved one to a skilled nursing facility, it can be the best option for the person with PD due to employment schedule, costs associated with in- home care, physical limitations or emotional health. Additionally, the household environment may not be the best option due to the layout of the home or the needs of other residents.

What is a Skilled Nursing Facility (Also Known as a Nursing Home)?

A skilled nursing facility is a healthcare center with at least one full-time registered nurse on- site and a doctor on call. It provides resident access to 24-hour care from nurses and certified nursing assistants. Skilled nursing facilities provides more care than assisted living facilities, which only help with day-to-day activities.

Rehabilitation vs. Long-Term Care

After a hospitalization, it is common to stay at a rehabilitation center within a skilled nursing facility to recover from surgery, injury or illness. Medicare can pay a portion of this stay under certain circumstances. During rehabilitation, physical therapy (PT), occupational therapy (OT), speech language pathology (SLP) and social work services are offered, and certified nursing assistants are available 24 hours a day. The individual either returns home or transitions to a care facility for long-term care when the rehabilitation services end.

Paying for Long-Term Care in A Skilled Nursing Facility

There are different options to pay for a skilled nursing facility stay. An individual can pay privately, use long term care insurance, use U.S. Department of Veterans benefits or qualify for Medicaid. It is important to note that Medicare does not pay for permanent stays in skilled nursing facilities.

Those who cannot pay out of pocket for a skilled nursing facility can utilize Medicaid. To review finances and payment options or learn how to qualify for Medicaid, consider meeting with an eldercare lawyer or a financial planner long before the transition takes place. To find an eldercare lawyer, visit NAELA.org.

If you cannot afford an elder law attorney or financial planner, it might be helpful to utilize other resources, including a social worker at Area Agency on Aging office for your area. To find the closest office to you, call 1-800-677-1116 or visit ElderCare.acl.gov.

The Benefits of Planning Ahead

Even if you do not expect a transition in the near future, it can be a good idea to visit facilities before a move is required. Starting early will allow you time to get to know the skilled nursing facilities in your area in case you need to make a quick decision. Keep in mind that your options may be dependent upon factors such as availability or finances.

Is a Skilled Nursing Facility Right for You or Your Loved One?

Long-term care in a skilled nursing facility provides 24-hour assistance with advanced care needs. Staff assists with daily living activities and medication management. They also provide opportunities for social interactions and participating in recreational and wellness programs. Meals are offered in a group dining setting and housekeeping and laundry services are also included.

Evaluating Long-term Care Skilled Nursing Facilities

You can find recommendations for skilled nursing facilities from local support groups or community organizations serving people with PD. You can also use the Medicare Nursing Home Compare tool at Medicare.gov/NursingHomeCompare.

Consider also reading online reviews of local facilities and visiting their website or social media pages. You can also call your local Area Agency on Aging for facility reviews at 1-800-667-1116 or visit ElderCare.acl.gov.

You can schedule a tour for skilled nursing facilities where you can gather information about their services, resources and costs. It is often helpful to take a family member, friend, or if financially feasible, an Aging Life Care Expert with you. You can find an Aging Life Care Expert in your area by calling 520-881-8008 or visiting AgingLifeCare.org.

Questions to Ask a Skilled Nursing Living Facility

Refer to the questions on the following pages for guidance. Try to make a second, unannounced visit in the evening or on a weekend. You may learn additional information that adds to your overall opinion of the facility. If you have specific questions about this process, contact our Helpline at 1-800-4PD-INFO (473-4636).

The Newly Diagnosed Guide is designed to help people with Parkinson’s disease (PD) and their loved ones get started on their PD journey, learn more about PD and prepare for a doctor's appointment.

Receiving a PD diagnosis can feel overwhelming. This life-changing news can leave you unsure of your next step. As you begin processing your emotions, which can be wide-ranging, it’s important to know you are not alone. The Parkinson’s Foundation is here for you at every stage.

Taking control of what you can will minimize stress and improve well-being. Inside this guide, find five steps that can help you begin to live well with PD including:

• Determining Your Goals
• Finding Someone to Talk To
• Creating Healthy Habits
• Being Active
• Finding a Parkinson's Expert

Take time with our Newly Diagnosed Guide to learn more about Parkinson’s and for how to optimize doctors’ appointments. Working alongside your care team can help you tailor your treatment plan and lay the foundation to a better life with PD.

Order the GUIDE

Everyone experiences changes in mood over the course of any given day, week, month, and year. But “mood changes” is a broad term that can mean different things to different people. This guide explains what mood changes can happen in Parkinson’s disease (PD), why people with Parkinson’s might experience these changes and how to treat and cope with them.

Not everyone develops every symptom of Parkinson’s disease, but if you’re affected, non-motor symptoms including depression, anxiety, anger, and irritability can have a huge impact on your quality of life and those around you. The information, tips, and stories included here will provide answers, help you organize thoughts and questions for your medical team and remind you that you are not alone on this Parkinson’s journey

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There are many aspects of cognition: thinking, understanding, learning, remembering, problem solving, language, and more. This guide explains what affects your thinking (age, sleep problems, medications, etc.), and what cognitive changes can happen in Parkinson’s disease. It includes coping tips for both people with Parkinson’s and care partners and stories that show strategies others use to manage their thinking changes.

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People affected by Parkinson’s disease (PD) — those living with Parkinson’s, their family members, their friends, and the healthcare professionals that care for them — are all looking for answers to questions about the disease, its symptoms and treatments.

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Please note this book was updated in 2024. The audiobook will be updated soon. For the most recent content, please read the book here.

As part of the Parkinson’s Foundation's Educational Book Series, Psychosis discusses just that: the causes, symptoms and treatments for hallucinations and delusions, as well as tips for caregivers of someone experiencing psychosis.

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