Parkinsonism: A set of movement symptoms associated with Parkinson’s disease (PD) and other disorders. It is important to understand that parkinsonism describes symptoms rather than a specific disorder.

Symptoms include:

• Slow Movements
• Stiffness
• Walking and balance problems
• Tremor

Parkinsonism is a name for a group of movement symptoms found in several conditions, including Parkinson’s disease. These symptoms include slow movements, stiffness, tremor and problems with walking and balance. Parkinsonism disorders can also involve non-movement symptoms, such as changes in mood and thinking, sleep problems and issues with automatic body functions, like blood pressure.

Types of Parkinsonism

Parkinson’s Disease

• A progressive brain disorder with movement and non- movement symptoms
• Symptoms worsen slowly over time
• Movement symptoms tend to improve with levodopa

Atypical Parkinsonism

• A group of progressive brain disorders with some of the symptoms seen in PD
• Symptoms are often more serious early on and progress quicker
• Movement symptoms improve less or not at all with levodopa

Secondary Parkinsonism

• Conditions that mimic PD but are not always progressive
• Symptoms may improve by treating the underlying cause
• Movement symptoms usually do not improve with levodopa

Atypical Parkinsonism Disorders

Atypical parkinsonism disorders have specific traits that may help set them apart from each other.

Dementia with Lewy Bodies (DLB)

• Progressive short-term memory loss and confusion
• Difficulty focusing or staying alert
• Seeing things that are not there, like shadowy figures in your side vision

Multiple System Atrophy (MSA)

• Lightheadedness when standing up or wide swings in blood pressure
• Difficulty controlling the bladder

Progressive Supranuclear Palsy (PSP)

• Slow or limited eye movements, both upward and downward
• Serious balance problems and frequent falls early on
• Early changes in thinking and behavior
• Slurred or hoarse speech

Corticobasal Degeneration (CBD)

• Muscle tightness and jerking movements
• Abnormal hand and feet postures (called dystonia)
• Trouble with coordination

Diagnosing Parkinsonism

There is no single test for diagnosing parkinsonism disorders. Your neurologist will review your medical history, symptoms and medications, perform a neurological exam and may order brain scans (like an MRI or DaTscan) or a skin biopsy. How your symptoms respond to levodopa can also provide helpful clues.

Since these disorders share similar symptoms, getting the right diagnosis can sometimes be tricky. It is important to work with a neurologist experienced in parkinsonism. Certain neurologists, known as movement disorders specialists, have extra training in this area. For help finding a specialist, contact our Helpline.

Treating Atypical Parkinsonism

Levodopa may not be effective for all types of atypical parkinsonism, but other medications and lifestyle changes may help reduce symptoms. Physical and occupational therapy, regular exercise and speech therapy are key to staying as active and independent as possible.

Look for a neurologist who can help you build a care team tailored to your needs, including rehabilitation specialists and, if necessary, a social worker, psychiatrist, sleep doctor, urologist or other health professionals.

Secondary Parkinsonism

Some types of parkinsonism may improve if the underlying cause is treated. For example, drug-induced parkinsonism, a type of secondary parkinsonism, often improves after stopping the medication. Drugs commonly linked to this include antipsychotics, anti-nausea medications and some blood pressure drugs. Normal pressure hydrocephalus, which causes memory loss and walking issues, can be treated with a tube to drain excess fluid. Treatment for other forms of secondary parkinsonism depends on the specific cause.

Tips for Navigating Parkinsonism

• If unsure about your diagnosis, ask your doctor for clarification. Keep in mind that a specific diagnosis may take time.
• Stay informed. Understanding your treatment options and available resources can help improve quality of life.
• Connect with others with a similar diagnosis to share experiences, coping strategies and resources.
• Focus on what you can control, like exercise, nutrition, sleep and staying engaged in activities and relationships that are important to you.

Resources

• CurePSP
• Lewy Body Dementia Association
• MSA Coalition

Parkinson’s disease (PD) is a family affair: everyone in your family is affected. As a parent of a young child or teen, it is important to consider how PD might affect your children and what can be done to continue to live a full family life with PD. A parent’s illness can present challenges for a family, but it can also provide opportunities for children to grow in ways they may never have experienced without the health issue. The good news is that children often adjust well to a loved one’s diagnosis of PD. With support, they not only adjust but also thrive and can become more self-sufficient, confident and independent.

As symptoms of PD vary for each person, so do the emotions of each child. Common emotions include:

• Shame or self-consciousness about the unusual presentation of PD, especially as a result of reactions by friends or strangers.
• Anxiety about the stress in the parent’s marital relationship caused by PD. Children may sense tension between parents due to the diagnosis and/or the symptoms of PD.
• Sadness, fear, anger and grief regarding the changes and losses of parent experiences or limitations of future experiences.
• Loneliness as the healthy parent is more focused on and spends more time with the person with Parkinson’s.
• Worry about their risk of developing PD themselves; worry that parents feel guilty about the impact of PD on the family, financial worry if family income has changed due to working less or disability pension; worry about the impact of PD on their own future aspirations and decisions.
• Feeling overwhelmed by caregiving responsibilities.
• Frustration with activity restrictions including finding it harder to socialize as they do not want to bring friends home or feel bad about going out.

Research-Based Recommendations

Research into the impact of PD on children is still new, but most children report that they have someone to talk to about their feelings. We have also learned that a child’s outlook was strongly tied to that of his/her parent—if a parent was hopeful, often the child was too.

Share the diagnosis

Your instinct may be to hold back sharing information about PD as you fear it may create worry for your children. However, regardless of the age of your children, consider telling them you have Parkinson’s. Many children who have a parent with PD said that they did not have enough information and that a better understanding of PD would help them feel more secure. Children often imagine much worse things than the truth. Explain Parkinson’s to them, as well as your best understanding of what might happen. Let children know that PD is not fatal, that they are not responsible for it and it is not contagious. Remember to use age-appropriate language. A better understanding of the condition can actually lead to less distress and allow them to feel more secure.

This is especially important with adolescents, who have access to a lot of information via the internet. This can be constructive if what they find helps them cope, but it can be devastating if the information is misunderstood. Consider asking your teen what they know about PD and where they found their information. Ask if they plan to get more information, and from where. You might want to go online together to sites that you know are reliable, like Parkinson.org, rather than simply googling “Parkinson’s.”

Privacy for your child/teen and for you. Your children may not want to talk to you about PD. This is okay, but it is important that they have someone to talk to, whether it is another relative, friend, parent of a friend, teacher, coach, clergy or other person in their lives. You may not want your diagnosis or disease process to be shared with the entire community. To meet your needs for privacy and your child/teenager’s need for support, discuss what information he/she can share and with whom.

What You Can Do to Help Children Adjust to PD

Share with your children’s school about changes in your home if at all possible. The staff at the school, along with sports coaches or leaders of other extracurricular activities, can be your allies in watching over your children’s emotional health and looking out for signs of distress. Sharing accurate PD information with the other adults in their lives will help ensure that your attitude and philosophies are always communicated in a similar way.

Establish family meetings to create opportunities to regularly address issues and worries, along with what is working well. You may use one of the books about Parkinson’s written for children as a jumping off point for the discussion. Below you’ll find a list of a few of these books for reference. As PD is a progressive condition and will change over time, new questions may come up and need to be addressed. Plan a fun activity following a “PD” talk.

Maintain family life, while remaining flexible with the changes that occur. Encourage and reassure your kids to continue their involvement in favorite activities, interests and hobbies. They should have fun and live their “normal” lives as much as possible. This is important for their overall wellbeing.

Help your children find peer support. They are not the only ones with parents with PD. If you are in a Young Onset PD support group, ask other members if they have children and if they might want to arrange an activity where children could meet or connect anonymously online. You could also ask members of your health care team (neurologist, social worker, nurse) to link your children with others in a similar situation.

Bring children to a neurology appointment so they can learn about PD. If they are interested, you can talk more about research into new treatments and with specialists who are available to help.

Empower children by helping them organize a PD fundraiser or raise PD awareness. It is something they can do to help.

Demonstrate a positive attitude. Children learn a lot about coping from their parents. Model healthy coping by sharing your honest feelings appropriately as well as using strategies to cope like exercise and connecting with friends. Instill hope by reminding them that there are teams of specialists and researchers working on PD treatments and symptom management.

Final Thoughts

It is vital for children to continue to see their parent with PD as a parent first and foremost, with the same expectations and approaches to parenting, enforcing the same discipline and boundaries. Stability and consistency will create a sense of security for children.

Children, like adults, may have to grieve changes in their life and ongoing losses. They should be given permission to do so. Your children might have to work through their sadness before they can adjust to a new reality.

You are the expert on your children. If you sense that something is wrong, you are probably right. Keep in mind that childhood and teenage years are times of social and emotional development and stressors, and remember their distress may have nothing to do with PD. Consider counseling to meet their needs.

Parkinson’s Books for Kids

The following books were written to facilitate discussion with children about Parkinson’s disease. The books offer age-appropriate information about PD and perspectives to help children and teens better understand important issues in the PD world. This is not a comprehensive list of available titles, but it’s a great place to start. All of the books below are available on Amazon.com and other online retailers.

• I’ll Hold Your Hand, So You Won’t Fall: A Child’s Guide to Parkinson’s Disease by Rasheda Ali, with a foreward by Muhammad Ali
• Carina and Her Care Partner Gramma by Kirk Hall
• Carson and His Shaky Paws Grampa by Kirk Hall
• My GrandPa’s Shaky Hands by Dr. Soania Mathur
• Parkinson’s in the Park: For Children of Parents with Parkinson’s by Jessica Christie
• Shaky Hands: A Kid’s Guide to Parkinson’s Disease by Dr. Soania Mathur
• The Tale of a Parkie Princess: A Chronic Illness Described in a Fairy Tale by Annie Konopka

Learn, Share and Network

Join our Children of People with Parkinson’s Community Network to connect with children and grandchildren of people living with or who lived with Parkinson’s.

LEARN MORE

Many people will experience some degree of thinking and memory changes (also called cognitive changes) while living with Parkinson’s disease (PD), but not everyone will have significant symptoms. 

This book is a practical guide to understanding how PD and other factors can affect cognition. It also outlines treatment options and provides tips and strategies for managing cognitive challenges.

This book is only available digitally to view, download or print. It is also available in a Kindle and audiobook formats.

For a person newly diagnosed with Parkinson’s disease (PD), a second opinion from a movement disorders specialist can be a valuable endeavor. It may help to confirm the diagnosis, discover a different condition leading to the symptoms the person is experiencing, or address any lingering unanswered questions from the person’s encounter with the first physician especially if there was any discomfort with the interaction. In this podcast, Dr. Carlos Singer, Director of the Division of Parkinson’s Disease and Movement Disorders and the Director of the Parkinson’s Foundation Center of Excellence at the University of Miami Miller School of Medicine in Florida, describes the importance of getting a second opinion and his approach during the visit, which can be a good guide for what people should expect or ask when they see the second physician. He also talks about how different people come to terms with and accept their new diagnosis.

Released: February 12, 2019

Nutrition is increasingly part of the conversation when it comes to good Parkinson's care. Dr. Bas Bloem describes how diet can help improve some of the symptoms of Parkinson's and optimize the effects of medication, and he offers tips on getting adequate nutrition.

Everyone should practice good oral health care, but it is particularly critical for people with Parkinson’s disease (PD). Unfortunately, at the time of diagnosis, many people do not receive information about oral health problems that may arise later in the disease. Parkinson’s symptoms can complicate oral care at home and dental professionals need to be aware of their patient’s PD so that they can provide appropriate care at frequent intervals. In this podcast, Cameron Jeter of the dental school at the University of Texas Health Science Center in Houston describes what she calls the “Dreaded D’s” – dry mouth, drooling, dysphagia or swallowing difficulties, and deadly bacteria. Beyond discomfort and inconvenience, these problems can affect a person’s quality of life and can even present a risk to their life, for example, through choking or inhaling bacteria that can lead to pneumonia. Dr. Jeter offers some helpful suggestions to maintain oral care and avoid problems.

Released: January 29, 2019

Regular exercise is essential for people with Parkinson's. Dr. Bas Bloem describes what is known about exercise and PD and what is still in the research stages, and he offers some tips on overcoming barriers to getting enough exercise.

Released: May 23, 2017

Most people with Parkinson’s disease have trouble getting a good night’s sleep due to an inability to fall asleep, stay asleep, or get back to sleep if awoken at night. Causes of this sleep discomfort may be a combination of symptoms of the disease, medications to control those symptoms, a poor sleep environment or bedtime habits, and changes in the brain that can affect mood, thinking, and the sleep-wake cycle. Fortunately, there are things that people and their health care providers can do to help mitigate the problems. Anne-Louise LaFontaine, Director of the McGill University Movement Disorders Clinic in Montreal, Canada, a Parkinson’s Foundation Center of Excellence, discusses the problems and offers solutions.

Released: January 15, 2019

Dr. Peter Schmidt of the Parkinson’s Foundation explains where people with Parkinson’s can go to receive the best interdisciplinary care and how the Foundation is improving standards of Parkinson’s care around the world. The Foundation's Centers of Excellence network and the Parkinson's Outcomes Project are key aspects of the discussion.

Receiving a diagnosis of Parkinson’s disease, especially when it occurs at an early age, can be seen as disrupting an entire life plan. But it doesn’t have to. Soania Mathur, MD, CCFP, a family physician in Toronto, Canada, was diagnosed with young onset PD at age 27, just when she was starting her own medical career, as well as starting a family. She has developed some views on raising children when a parent or other family member has PD. In this second episode of our two-part Holiday Series: Families and Parkinson’s, she offers advice about how to talk to children about the disease, where to turn for resources, and even how having a parent, grandparent, or other relative with a chronic disease can have positive aspects for a child.

Released: December 18, 2018