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.

There is a lot we still don’t know about Parkinson’s disease (PD). Research is key to unlocking its causes, developing life-changing treatments and ultimately, discovering a cure. One way people with PD can help scientists to better understand the disease is through participating in research. Learn more about the process and how to get involved.

There are two types of clinical studies: an observational study and a clinical trial.

What is an observational study?

An observational study is when researchers observe people and try to figure out what factors affect their health and their likelihood of developing certain diseases, like PD. For example, researchers might look at how different lifestyles affect Parkinson's. Observational studies measure or survey participants rather than applying treatments, like medications.

• Cohort (or registry) studies. Follow people with a common characteristic over time.
• Case-control studies. Focus on people who have developed a disease and compare them to a group of people who do not have the disease.

What is a clinical trial?

A clinical trial is a research study with human participants that aims to answer specific questions about potential medical treatments. When researchers are developing a new treatment for PD, such as a drug, surgery, therapy or a device, they make sure it works by conducting a clinical trial. These trials help researchers and doctors learn what does and doesn’t work in treating diseases like PD.

Types of clinical trials

• Therapeutic. Test safety and effectiveness (efficacy) of a potential PD therapy — drug or non-drug — or a different way to use an existing therapy.
• Diagnostic. Look for biomarkers or a measurable sign in the body that can diagnose PD or track its progression.
• Genetic. Help understand how genes affect PD.
• Preventative. Aim to find ways to prevent someone from developing PD.

Phases of clinical trials

Treatments are put through the rigorous process of clinical trials before the U.S. Food and Drug Administration (FDA) can consider approving them.

• Phase I. Tests a potential treatment for the first time in a small group of people (with the disease and without) to evaluated safety and dosage and identify side effects.
• Phase II. Further evaluates the safety of a treatment in a small group of people from the affected population and provides early evidence of its effectiveness.
• Phase III. In a larger group of people, determines if the treatment benefits participants and if its benefits outweigh its risks.
• Phase IV. After receiving FDA approval, researchers collect and look over additional information about a treatment, including risks, benefits and how it is best used.

Risks of clinical trial participation

• The study treatment might not work. However, unsuccessful studies are important in learning more about PD.
• Not receiving the study treatment. You might receive a placebo (like a sugar pill) that lets researchers compare the group that receives the treatment to a group that does not.
• Experiencing unwanted side effects. These may include known side effects and new ones that might appear during the study. They can be minor or serious in nature.

Informed consent

It is required that you give your informed consent prior to taking part in a study. It ensures that researchers have given you complete information and that you fully understand the trial, risks and your role as a participant.

Why Participate in Clinical Studies?

Your participation in clinical studies can:

• Advance Parkinson’s prevention, treatments and a cure. Almost all of what we know about Parkinson’s is due to research.
• Give you early access to potentially helpful treatments not yet accessible. This does not replace your normal treatment.
• Contribute to the diversity of research participants. Individuals can respond differently to therapies.
• Play a part even if you don’t have Parkinson’s. Many trials are looking for “healthy controls” or people who do not have PD.

Which Studies are Right for You?

Some studies are as simple as filling out a survey, while others can involve procedures or treatments. You may want to think about certain requirements, such as the number of times you must visit the study site, the length of each visit, the number and types of tests you will have to do and how long you need to be in the trial. Keep other factors in mind, like commuting to the study site.

Be sure to discuss participating in a trial with:

• Your neurologist. Share information about the study. Your neurologist can help you evaluate a specific study and possibly recommend additional studies for you.
• Your family. Joining a trial can affect members of your family. Involve your family in your decision-making process. You might go to them for emotional support.

Ongoing Research

In addition to funding research grants, Parkinson’s Foundation research initiatives include:

PD GENEration: Mapping the Future of Parkinson’s

This national study offers genetic testing for PD-related genes and genetic counseling at no cost for people with Parkinson’s. Participation can be either in-person or from home through a telemedicine appointment. For more information and to enroll visit Parkinson.org/PDGENEration.

Parkinson’s Outcomes Project

A clinical study among 13,000+ people with PD conducted at select Parkinson’s Foundation Centers of Excellence. Read more findings at Parkinson.org/Outcomes.

Parkinson’s Foundation Surveys

This initiative advances Parkinson’s care by better understanding the experiences of people living with PD and their care partners and sharing findings with the community. Make your voice heard and sign up at Parkinson.org/Surveys.

TOPAZ

This study tests if a medication, called zoledronate, can prevent bone fractures in people with PD. Participation is done from home. To learn more, visit TopazStudy.org.

Finding a Parkinson's Study

• Clinicaltrials.gov is a database of privately and publicly funded clinical studies conducted around the world.
• National Institutes of Health (NIH) Clinical Research Trials and You is an online resource to help people learn more about clinical trials. Visit nih.gov/health/clinicaltrials.
• Find the latest in Parkinson’s’ research and more information on joining a PD research study. Visit Parkinson.org/Research.

The cause of Parkinson’s disease (PD) is unknown, but scientists believe that a combination of genetic and environmental factors are the cause. The extent to which each factor is involved varies from person to person. Regardless of how a person gets Parkinson’s — through genetics or environment or a combination of both — every person with PD experiences a loss of dopamine in the brain, along with symptoms and a progression of their disease that is unique to them.

Understanding Genetics

Genetics is the field of science that examines how traits are passed down, or inherited, from parents to children through genes. The study of genetics begins with our DNA. Think of our DNA as a cookbook that contains about 23,000 genes, or recipes, that make us who we are. A gene is like a recipe used to build a protein (that help our bodies perform different jobs to function normally). Changes, known as mutations, in our genes can change the recipe — altering the shape and normal function of proteins in our body. Changes in our genes are mostly harmless, but in some cases, they can affect our risk of getting a disease.

In addition to genetics, environmental factors and lifestyle choices strongly determine if Parkinson’s will develop. Understanding the role of genes and PD can help pave the way to understanding the biological causes of disease and develop novel therapies to treat Parkinson’s.

Understanding the connection between Parkinson’s and genetics can help us understand how the disease develops and ultimately how it can be treated or cured.

Parkinson’s Genes

Parkinson’s is rarely hereditary. Genetics cause about 10% to 15% of all Parkinson’s. If a person tests positive for a certain gene mutation associated with Parkinson’s — such as a mutation in LRRK2, GBA and SNCA genes — their risk may increase, but they may never develop Parkinson’s. In some families, changes (or mutations) in certain genes are inherited or passed down from generation to generation. A handful of ethnic groups, like the Ashkenazi Jews and North African Arab Berbers, more commonly carry genes linked to PD and researchers are still trying to understand why. Over the years, scientists have studied DNA from people with Parkinson’s, comparing their genes. They discovered dozens of gene mutations linked to Parkinson’s. These genes are now being researched and studied for what role they play in Parkinson’s.

There are ongoing clinical trials testing therapies to treat people who have Parkinson’s and carry certain gene mutations, proving that it can be important to know which gene mutation you carry. Consult with your doctor when considering a genetic test to determine if you are eligible to participate in gene-based clinical trials.

PD GENEration: Mapping the Future of Parkinson’s Disease

This flagship study aims to provide free genetic testing and genetic counseling that will empower people with PD and their care team, improve Parkinson’s care and research and accelerate enrollment in clinical trials.

Through PD GENEration, we hope to ultimately offer free genetic testing and genetic counseling to 15,000 people with PD in the U.S., beginning with our goal of enrolling 600 participants during the pilot period. PD GENEration is available to people with a confirmed diagnosis of PD, regardless of age, through participating Centers of Excellence and Parkinson Study Group sites. To find out if your Center or site is participating, visit Parkinson.org/ PDGENEration.

For more information about genetics, visit Parkinson.org/Genetics or call our Helpline at 1-800-4PD-INFO (473-4636).

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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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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