With Parkinson’s disease (PD), we know how challenging it can be to manage “off” times. That’s why it is important to seek out more of what helps us feel “on.” Let’s dedicate this summer to trying new things, being grateful to those around us, creating heartfelt memories and doing what makes us happy.

This summer, we challenge you to try every item on this list to find new activities. Join us on Facebook to follow our month-long summer challenge and #SummerOn with the Parkinson’s Foundation. This article is part one of a two-part series. Check out part two of Tips to #SummerOn here.

1. Learn something new and share it with your friends and family.

It is essential to learn as much as you can about Parkinson’s so you can be your own best advocate. Our PD Library is a wonderful way to start or build on your knowledge. Visit Parkinson.org/library for an extensive and free collection of books, fact sheets, videos, podcasts, and more.

2. Make a list of the things you are good at.

Practice being grateful. Recall or write down things that you do well. A little self-love can go a long way in improving our mood. Learn more about Parkinson’s and mood by reading Mood: A Mind Guide to Parkinson’s Disease.

3. Give someone a hug.

Keep socially active and get involved. People who maintain friendships are less likely to experience depression, loneliness, low self-esteem and problems with eating and sleeping. Embrace a loved one today or send a virtual hug.

4. Enjoy Nature.

Spend some time outdoors. It may not even feel like a workout to the nature lover. Research has shown that walking in nature can help with depression and anxiety, which are two common non-motor symptoms for people living with Parkinson’s disease.

5. Try our guided meditation video.

Mindfulness is a practice that can be used as both a coping and prevention strategy. Whether you have two minutes or 20, mindfulness meditation can help you reduce your stress and pain. Check out our meditation video, guided by our Helpline specialist Paula Wiener, MSW, LCSW.

6. Listen to your favorite song.

People living with Parkinson’s may find moving around does not come as naturally as it once did. Music can help! Music can boost our productivity during an exercise class and help counter a freezing episode by providing a rhythmic beat to step to. Research also suggests that music therapy can reduce bradykinesia. Listen to some of your favorite tunes for some motivation.

7. Try a new recipe or diet.

There is evidence that the Mediterranean diet may help reduce blood pressure and cardiovascular disease. Emphasizing plant-based staples and healthy fats, while minimizing meat, can improve health. 

8. Become a Parkinson’s Champion.

When we donate to a cause we care about, we activate parts of the brain associated with pleasure, social connection and trust. Support our mission to make life better for people with Parkinson's by hosting a do-it-yourself fundraiser as a Parkinson’s Champion. Need a summer theme? Try an ice cream social, movie night, luau or clam bake.   

9. Register for your local Moving Day.

Moving Day is more than just a walk. It is a movement for change — increasing awareness, funding and understanding of a disease that affects so many of our family and friends. With 39 walks taking place around the country in 2018, we encourage you to register for a Moving Day event near you!

10. Write your My PD Story.

My PD Stories are inspirational and provide readers with hope. What can you share with others that will help them keep moving forward? You can write about any aspect of Parkinson’s that you feel comfortable sharing. Submit your My PD Story today and tell us what challenges you have overcome and what keeps you happy, healthy and hopeful.

11. Try a new exercise.

Did you know that exercise can change the brain and have a positive impact on Parkinson’s symptoms? The Parkinson’s Outcomes Project found that people with PD who engaged in at least 2.5 hours of exercise a week had a better quality of life than those who didn't exercise at all or started exercising later. Learn more about exercise and its effect on our brain.

12. Listen to a new podcast.

Our podcast "Substantial Matters: Life and Science of Parkinson's," is available for listeners to subscribe, stream or download. Every episode features a PD expert discussing a range of Parkinson’s topics, including research, medication, exercise, nutrition and more. Listen or subscribe now.

Want even more tips and great resources at your fingertips? Check out part 2 here and follow us on Facebook for year-round tips, resources and information!

At the Parkinson’s Foundation, one of our goals is to raise Parkinson’s disease (PD) awareness and how the Foundation supports those living with the disease and their loved ones. If you are familiar with Parkinson’s you probably know most of the items on this list, but we encourage you to share this article with someone who may not be familiar.

1. The cause is unknown and there is no cure.

What causes Parkinson’s remains largely unknown. Genetics cause about 10 to 15 percent of all Parkinson's. The other 85 to 90 percent of cases are classified as sporadic (or occasional). Although there is no cure, treatment options vary and include medications and surgery.

→ Keep reading: What is Parkinson’s

2. People with Parkinson’s can have a good quality life.

There is no one-size-fits-all treatment approach when it comes to PD. While medication is the most common treatment, surgical therapy and lifestyle modifications, like rest and exercise, help manage the disease. Shop around until you find what works best. Find your ideal support group, therapist, exercise class and complementary therapy.

→ Keep reading: Find resources in your area

3. No two people have the same exact symptoms.

The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience: tremor (mainly at rest); slowness of movements (bradykinesia); limb rigidity; gait and balance problems.

→ Keep reading: Managing Parkinson’s

4. Non-movement symptoms can be more troublesome than motor symptoms.

In addition to movement symptoms, from tremor to balance issues, most people with PD also develop non-movement symptoms that many consider more disabling. They can include:

• Cognitive changes: problems with attention, planning, language or memory
• Mood disorders, such as depression, anxiety, apathy and irritability
• Fatigue
• Hallucinations and delusions
• Lightheadedness (orthostatic hypotension)
• Sexual problems, such as erectile dysfunction
• Sleep disorders, such as insomnia

→ Keep reading: Non-Movement Symptoms

5. Small Handwriting and loss of smell are early signs of Parkinson’s.

A change in handwriting, specifically handwriting that’s gotten smaller over time or crowded, are an early indicator of PD. Another common early sign is the loss of smell of foods like bananas, dill pickles and licorice.

→ Keep reading: 10 Early Signs of Parkinson’s Disease

6. Exercise helps manage Parkinson’s symptoms.

For people with Parkinson’s, exercise is more than healthy — it is a vital component to maintaining balance, mobility and activities of daily living. Exercise and physical activity can improve many PD symptoms. The Parkinson’s Outcomes Project shows that people with PD who start exercising earlier and a minimum of 2.5 hours a week experience a slowed decline in quality of life compared to those who start later. Tai chi, yoga, Pilates, dance, weight training, non-contact boxing and more all have positive effects on PD symptoms. Watch our Fitness Friday videos.

→ Keep reading: Exercise

7. Parkinson’s should be treated through a team approach.

The Parkinson’s Foundation recommends people diagnosed with PD seek out a movement disorders specialist. These specialists are more likely to include other healthcare professionals who can help tackle day-to-day PD challenges in a care team, such as physical therapists, occupational therapists, speech therapists or nutritionists.

→ Keep reading: Importance of Expert Care

8. People with Parkinson’s are not always angry or sad.

Many people with Parkinson’s experience facial masking — reduced facial expression. Often, people with PD look serious, depressed or mad, but many times it’s just that PD is causing muscles in the face to be stiff or take a long time to move.

→ Keep reading: Facial Masking

9. Designated Centers treat Parkinson’s. 

The Parkinson's Foundation leads the development of new treatments through its Centers of Excellence network, comprised of 47 international leading medical centers, staffed by renowned PD specialists. These centers deliver care to more than 193,000 people with Parkinson’s. Participating centers also play a key role in the Foundation’s Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s ever conducted.

→ Keep reading: Centers of Excellence

10. The Parkinson’s community is strong. 

The Parkinson’s Foundation is here for our global Parkinson’s community — that includes family members and caregivers. The Foundation hosts Moving Day walks across the nation and also provides additional ways to get involved — donate, volunteer, host a fundraiser, join PD Conversations or advocate.

→ Keep reading: Get Involved

We’re here for you. Get answers to your Parkinson’s questions when you contact our Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

A new study finds that cognitive impairment is a frequent and rapidly progressing symptom of Parkinson’s disease (PD). About half of the participants who had PD for an average of five years and had normal cognition at the beginning of the study developed mild cognitive impairment (MCI) within six years – about 11 years after PD diagnosis. Those few who developed MCI progressed to dementia within five more years. The results appear in the September 11 online edition of Neurology.

With a diagnosis of PD, most people and their physicians focus on treating and coping with movement symptoms. Yet even early in the course of disease, people with PD may have difficulty multitasking, or feel that their thinking abilities are “just not the same.”

To better understand the rate at which cognitive impairment develops, and identify risk factors for the development of cognitive impairment, researchers led by Daniel Weintraub, M.D., recruited 141 people with PD to participate in the study. All were receiving treatment at the University of Pennsylvania’s Udall Center for Parkinson’s Disease Research. On average they were 69 years old and had been living with PD for five years; 63 percent were men. All participants had normal cognition based on a battery of standard tests for people with PD. The researchers re-evaluated study participants’ cognition each year for up to six years.

Results

• With each year of follow-up, a greater percentage of participants had progressed to MCI, reaching 47.4 percent after six years.
• Every participant who was diagnosed with MCI during the study, progressed to dementia within five years.
• Men were at an increased risk of cognitive impairment as were those who had higher scores on rating scales of PD motor symptoms (higher Hoehn and Yahr and UPDRS scores), a longer time living with PD and depression.

What Does It Mean?

Many people live with PD for decades with good cognitive abilities. However, this study adds to a growing body of literature that identifies cognitive impairment as a common non-motor symptom of PD. This study is also among the first to enroll a group of participants with normal cognition and to follow the progression of their cognitive difficulties over time. Compared to other studies, this one found a more rapid rate of cognitive decline among participants.

A better understanding of how PD affects cognition can help people with PD in several ways. With testing for these difficulties early in the course of disease, more people could potentially benefit from rivastigmine (Exelon®) – the only medication approved for dementia in PD.

In addition, the study results underscore the need for better therapies to slow or stop MCI, and PD progression more generally. Most PD clinical trials focus on the motor symptoms, and this study (and others) highlight the urgent need for studies focusing on interventions to slow down the rate of cognitive changes in PD. Additionally, evaluating cognition early in the course of PD could give people the opportunity to participate in clinicaltrials. Increased awareness of MCI also can help guide people in making better informed decisions about their future care.

Experts caution that PD symptoms such as depression and apathy can affect a person’s memory and ability to focus their thinking; it is important to treat these symptoms before evaluating cognition.

A shortcoming of the study is that the participants were all so similar — nearly all were Caucasian, with a high education level (16 years on average) and in a narrow age range (62-73 years). For this reason, the results may not reflect the reality in the larger population of people with PD, in which studies suggest that age is the biggest risk factor for dementia. Studies with larger numbers of participants are needed to confirm the results. One such study, which is following 8,000 people with PD at 20 different centers, already is under way.

Warning: This article contains adult-themed issues and terms.

Every year, the top Parkinson’s experts from around the world who treat people with Parkinson’s at a Parkinson’s Foundation-designated Center of Excellence (a department or clinic within a hospital that specializes in PD) convene to discuss the latest Parkinson’s research and treatments. This article summarizes the 2018 Center Leadership Conference presentation on sexual disfunction by Gila Bronner, MPH, MSW, CST, Director of Sex Therapy at the SHEBA Medical Center in Israel. Read the articles covering some of the other topics discussed: new therapies in trial, oral health and music therapy. 

Jessica made an appointment with Gila Bronner, MPH, MSW, CST, a sex therapist, to discuss a specific issue: how could she address her husband’s drooling interfering with their sex life. Even though her husband was the one living with Parkinson’s disease (PD), some symptoms affected the both of them.

Intimacy issues and sexual dysfunction is a “couple problem.” It affects both partners. One person’s sexual dysfunction often results in the same effect in their partner. For example, when a man experiences a sexual dysfunction, his partner is more likely to experience sexual dysfunction and dissatisfaction as well.

There is a high prevalence of sexual dysfunction in PD, with problems ranging from erectile dysfunction, reduced desire and frequency, vaginal dryness, orgasm difficulties and more. According to one study, people with PD rate sexual dysfunction in their top 12 most bothersome symptoms (Politis, et al., 2010). Another study cites that 41.9 percent of men and 28.2 percent of women cease sexual activity after being diagnosed with PD (Bronner, et al. 2004).

Sexual dysfunction in PD can be compounded by depression, anxiety, pain and movement-related symptoms, which can affect desire, erectile dysfunction and sexual satisfaction. Sexual dissatisfaction has been associated with movement symptoms in men, anxiety in women and depression in both genders.

As a sex therapist, Gila reminds her patients that it is important to remember that sexuality is not only about sex and orgasms; its emotional, non-sexual physical and intimate aspects play important parts. Intimate touch and sexual activity contribute to a better quality of life and health overall. They are associated with emotional and physical relaxation, better self-esteem, increased vitality and well-being, and closeness between partners.

The increase in oxytocin that comes from massage and touch can even reduce pain. Older people who continue to engage in sexual activity have better overall cognitive functioning (Hartmans, et al. 2014). Therapeutic touch has even been shown to decrease behavioral symptoms of dementia (Woods, et al. 2005).

There are many alternative intimate and sexual activities to treat sexual dysfunction, such as outercourse (other sexual activities besides sex), self-stimulation, non-demanding touch (relaxing and pleasant touch), open sexual communication, compensatory strategies and sexual aids, and erotic thoughts and fantasies.

Intimacy Tips from People with PD and Their Partners

1. Plan sex for when movement symptoms are at a minimum.
2. Apply oily lubricants to lessen the effects of tremor on skin.
3. Use sexual aids.
4. Plan positions in advance with minimized movements between positions.
5. Use lubricants for penetration during intercourse, and be sure to read the lubricant’s instructions before you begin.
6. Use satin sheets to ease movement.
7. Perform intimacy training and erotic tasks.
8. Reduce stress and burden on your partner.

“Remember that the right to share love, touch and intimate moments accompanies us along our life,” said Gila.

For more information about sex therapy or where to find a sex therapist near you, contact the Parkinson’s Foundation free Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

With Parkinson’s disease (PD), we know how challenging it can be to manage “off” times. That’s why it is important to seek out more of what helps us feel “on.” Let’s dedicate this summer to trying new things, being grateful to those around us, creating heartfelt memories and doing what makes us happy. This summer, we challenge you to try every item on this list to find new activities. Join us on Facebook to follow our month-long summer challenge and #SummerOn with the Parkinson’s Foundation.

1. Catch up with an old friend.

Staying social helps retain cognitive sharpness. Make this the summer you meet new folks at a support group or reach out to that friend you’ve been meaning to catch up with. Our community is active, supportive and always growing! Search for upcoming events in your area.

 2. Subscribe to our eNewsletter.

Get the latest news on Parkinson’s treatments, research and other updates. Expand your knowledge about PD. Sign up now.

3. Watch or participate in one of our webinars.

Whether you are living with Parkinson's, are a caregiver or a healthcare professional, we have a webinar for you. Learn more about PD symptoms, progression, treatments and management during our live webinars or watch one of more than 40 recorded past webinars at your convenience. Register for our Expert Briefings.

4. Remember old jokes or look up some new ones.

Keeping a sense of humor can help beat anxiety. Watch a funny video or read something that makes you laugh every day. Share a joke with a friend or the cashier at the grocery store.

5. Eat your favorite meal.

Have you or your loved one experienced weight loss since being diagnosed with Parkinson’s? Maintaining a healthy weight is key to living well. Enjoy some of your favorite foods today, but always in moderation. Learn more about weight loss and PD.

6. Write down a meaningful quote.

Start your day with a positive message to boost your mood and enhance thinking! Write down your favorite quote and place it somewhere you can see every day. The Parkinson’s Outcomes Project found that mood, depression and anxiety have the greatest impact on health for people with PD — even more than motor symptoms. Learn more about mood and other ways to elevate yours with our fact sheet.

7. Plan a trip.

Summer means vacation time — a chance to reset and renew. Traveling with Parkinson’s means extra challenges to consider before hitting the road.

8. Tap into your creative side.

Art activates our imagination, creativity and memory. The combination of colors and figures stimulate your brain by improving memory and concentration. Learn how Leo Narcisse Robichaud uses art as his therapy and bring out your creative side today.

9. Invite a friend to coffee.

Staying social has been proven to help retain cognitive sharpness. Surround yourself with people who make you laugh and smile or make new friends at Parkinson’s groups. Learn more about how to fight isolation.

10. Get better sleep.

Sleeping is essential for our body and our mind to function properly. Unfortunately, problems with sleep and alertness are common in Parkinson’s. Read our online sleep book with tips and information that will help you rest.

11. Start a daily journal.

Practice your handwriting by keeping a journal. Small, cramped handwriting (called micrographia) is a characteristic of Parkinson’s. There are strategies that can make writing more comfortable for you, including writing a few sentences every day in a journal. Learn some techniques for managing micrographia now.

12. Watch your favorite movie.

Make time for activities you can enjoy with your loved one outside of care. Catch a new flick or rent a classic.

13. Treat yourself.

The benefits of massage therapy are recognized by many people with Parkinson’s and caregivers alike. Some of its benefits include improvement in sleep, reduction in rigidity, tremor and anxiety.

Want even more tips and great resources at your fingertips? Join us on Facebook for year-round tips, PD-related resources and information. 

Most people associate Parkinson’s disease (PD) with tremors, a motor symptom. However, non-motor symptoms are common and can be more troublesome and disabling than motor symptoms. They can include cognitive changes, mood and sleep disorders, autonomic symptoms or weight loss. Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, is not only on the front lines of PD-related cognitive research, but is actively hosting life-changing programs targeting these non-motor, and in particular, cognitive and behavioral symptoms.

Jennifer G. Goldman, MD, MS, is unique in the Parkinson’s field. She is a fellowship-trained movement disorder specialist with additional background in behavioral neurology and neuropsychiatry — an uncommon combination that provides her with a unique skillset to treat Parkinson’s non-motor symptoms.

In between seeing patients, Dr. Goldman conducts research studies to better understand what causes a person with PD to experience neuropsychiatric symptoms (such as memory loss or cognitive changes, anxiety, depression, psychosis and hallucinations). She utilizes MRI (magnetic resonance imaging) brain scans and clinical assessments to evaluate cognitive and behavioral effects. More broadly, Dr. Goldman’s research tries to find the mechanisms of the brain and biomarkers (measurable substances that attribute to the onset and progression of a disease) that contribute to Parkinson’s-related non-motor symptoms.

Research, like Dr. Goldman’s, plays a vital role in developing treatments to stop non-motor issues from progressing. “We have very good medicines, therapies and surgical treatments that can help motor symptoms, but we are far behind on being able to treat or stop any of the neuropsychiatric symptoms — particularly cognitive decline and dementia — that take a toll on quality of life for patients and care partners,” said Dr. Goldman.

Dr. Goldman and her team set out to do more. Funded through a Parkinson’s Foundation Moving Day grant, the center created a dedicated program to address the unmet needs of people with PD experiencing cognitive, behavioral and emotional symptoms of Parkinson’s.

“The Integrated Cognitive Behavioral Movement Disorder Program” includes a multidisciplinary and comprehensive clinic and offers an educational series to support people with PD and care partners who need to treat and cope with non-motor symptoms.

Roughly nine million people living with Parkinson’s in the world are not being treated by a specialist.  Through funding, the Parkinson’s Foundation supports Rush’s efforts to host an open clinic to reach as many people as possible who are most likely not receiving expert care.

While addressing cognitive and behavioral issues can be daunting for patient and doctor alike, Dr. Goldman knows that there is still a social stigma attached to mental health. She regularly sees patients who are afraid to be labeled as having a cognitive or behavioral issue in addition to their PD. Terms like dementia and psychosis can be incredibly scary for anyone coping with Parkinson’s.

“It is a well-known problem that many doctors do not have enough time during an appointment to truly explain and talk through mental health issues,”

-Dr. Goldman

This is one reason the Rush team welcomes the conversation and helps people advocate for their mental health through their clinic.

A Day at the Integrated Cognitive Behavioral Movement Disorder Clinic

On clinic day, people with any stage of Parkinson’s, from anywhere in the country are seen by the center team. Upon arriving they are:

1. Provided a comprehensive assessment by the center’s allied health team, which includes a physical therapist, occupational therapist, speech therapist, nutritionist, neuropsychologist, social worker, nurse, physician assistant and movement disorder specialist.
2. Together, the team determines a personalized treatment strategy, keeping in mind the patient’s symptoms — motor and non-motor.
3. If the patient lives in another city or state, the team will provide their assessment and treatment recommendation and refer the patient to a clinic and doctor closer to their home for future visits. If a patient is referred to the clinic and can commute for care, they can choose to receive care at Rush moving forward.  

Care doesn’t stop with the patient. “One of our program goals is to also spend time with the care partner,” Dr. Goldman said. “Most of the time, clinic appointments are not really about the care partner, but we often find that caregivers need to be addressed as well.”

To educate and aid even more people the clinic hosted an educational series. Dr. Goldman, the clinic team and invited guest speakers addressed a different neuropsychiatric topic, such as depression and hallucinations, in each of the eight sessions held. Fifty-two attendees attended the first session in July 2017. After the presentation, the session transitions into moderated support groups — one for people with PD and one for caregivers. Each can share stories about the topic addressed and ask the speakers questions. Participants are encouraged to take available resources, such as Parkinson’s Foundation books. Future series will address apathy, depression and anxiety and will include an online webinar component with virtual chats to allow people to participate from home.

“We felt there was a great need to have a forum where we could educate the Parkinson’s community about the neuropsychiatric symptoms because there is a lot of misinformation, fear and stigma surrounding these issues,” said Dr. Goldman.

Between the clinic and its sessions, the center hopes to see even more people with PD advocate for themselves. The dream remains to ultimately prevent Parkinson’s non-motor symptoms altogether, but for now, programs like the Rush Cognitive Behavioral clinic exist to make life better for people with Parkinson’s, on a physical and emotional level.

The Rush University Medical Center is located in Chicago, IL. Learn more about your nearest Center of Excellence.

It might be surprising to learn that 20 to 30 percent of people with Parkinson’s disease (PD) will experience visual hallucinations. While typically not a symptom of PD itself, they can develop as a result to a change in PD medication or as a symptom of an unrelated infection or illness. It is important to know the signs of hallucinations and how to manage them.   

Hallucinations and other more severe perceptual changes can be distressing to family — often more so than to the person experiencing them. For the well-being of people with PD and caregivers, it is important to identify hallucinations as early as possible and take steps to reduce them.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about hallucinations and delusions in Parkinson’s hosted by Christopher G. Goetz, MD, Professor of Neurological Sciences,  Professor of Pharmacology at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence.

Hallucinations 101

Doctors often refer to hallucinations and other changes in perception as psychosis. While not every person with PD will develop psychosis or its symptoms, it can still be a frightening thought. 

A hallucination is a false perception. A person sees, hears, feels or perceives something that is not there. Among people with PD, visual hallucinations are most common, often of people or animals. They tend to be vividly colored and to happen at night. Usually they are not frightening and can become familiar. For example, a person might regularly hallucinate a puppy with a red collar.

A delusion is a fixed conviction that something is real when it is not. For example, Tom, who has PD and was previously a car dealer, was convinced that his house was a car dealership.

Paranoia is a delusion dominated by suspiciousness, fear and concern about safety. For example, a person may falsely accuse their partner of infidelity.

Among people with PD, these perceptual changes develop on a spectrum:

• Slight: illusions, misperceptions or hallucinations with no form, like a movement in the shadows. The person recognizes they are not real.
• Mild: formed hallucinations, where the person sees a child or small animal, like a cat. It looks real, but the person knows it is not.
• Moderate: formed hallucinations, such as a brother or person. There is a loss of insight and the person thinks the hallucination is real.
• Severe: these can be negative. For example, the person may think a stranger is trying to harm them or a loved one. Delusions can also be pleasant — the person might think they live in a garden or all-inclusive hotel.  

Given this range, delusions can easily infringe on a person’s quality of life. While experiencing a hallucination or delusion it is common for the person experiencing it to feel calm, but for family members to feel distressed.

A progression of these symptoms is consistent in Parkinson’s. It would be rare for a person with Parkinson’s to have delusions without hallucinations. However, if a person suddenly has delusions, an infection or other medical issue is likely the cause, and it’s important to see a doctor right away.

I Had a Hallucination: What Next?

Research has shown that for many people with PD who have them, hallucinations begin after a change in medication, more specifically, an increase in levodopa (also known as Sinemet). Additional factors make a person more likely to experience hallucinations when medications are changed, such as other cognitive problems or memory issues, depression and sleep problems. Dementia [A term used to describe a group of brain disorders that cause a broad complex of symptoms such as disorientation, confusion, memory loss, impaired judgment and alterations in mood and personality.] also increases the risk of hallucinations and delusions when PD medications are changed. Dementia means cognitive changes —whether in memory, judgment or attention — that interfere with daily life.

One thing that does not affect the risk of hallucinations is your regular dose of levodopa. Rather, studies show that it is a change in dose — an increase in a dose that has been stable — that sets off hallucinations.

Tip: Experiencing a hallucination does not mean you are “going crazy.” Many people recognize that their hallucinations are not real. Do not react to these visions or sounds or engage them — dismiss them. Bring up the topic with your doctor immediately.

People with Parkinson’s often ask, “Is my hallucination a one-time event?” A study sought to answer this by tracking 89 people with PD for 10 years. At the beginning, about a third experienced hallucinations. Over time, more participants experienced them. The study found that most people with PD who hallucinate will most likely continue to do so, and over time hallucinations can worsen. Also, after 10 years, most of the participants experienced hallucinations.

Treatment Options

After experiencing a hallucination or delusion, it’s important to better understand treatment options:

1. Rule out medical illness as a cause. The most common causes for sudden confusion and agitation are urinary tract infection or pneumonia. Did you recently start a new non-Parkinson’s medication, like a bladder medicine or narcotic?
2. Review your prescriptions. Have they been filled correctly? Double check your dosages and pills.
3. Visit your regular doctor right away. If possible, try to avoid the emergency room. Your neurologist or movement disorder specialist can offer medical approaches to reducing hallucinations. Under your doctor’s supervision, reducing the dose of your primary Parkinson’s medication may make hallucinations more manageable. However, it can be a trade-off — reducing medications can cause unsteady walking or an increase in tremor.
4. Talk to your doctor about eliminating nonessential medicines. Many medications complement the benefits of levodopa, but may not be necessary. These include anticholinergics (trihexyphenidyl, biperiden, Benadryl), amantadine and monoamine oxidase-B inhibitors (selegiline, rasagiline).
5. Your doctor may prescribe medication that targets hallucinations. Medications like clozapine or one that promote sleep can help you manage hallucinations. Therapies for dementia may improve cognition and the ability to cope with hallucinations. Talk with your doctor to find a treatment plan that works for you.

Tips for Caregivers

When a person with Parkinson’s develops hallucinations, immediately work with your physician and follow strategies at home to make the hallucinations manageable. Recognizing hallucinations — and dismissing them — are important ways of coping.

Hallucinations and psychosis are the aspects of PD that make at-home care most difficult. They are demoralizing, can disrupt sleep and fragment home life for the family. More than movement difficulties or any other aspect of PD, caregivers find hallucinations and delusions too much to cope with. 

Caring for someone who experiences hallucinations and delusions is a difficult job. Read particular caregiving tips and stories in the Parkinson’s Foundation book Psychosis: A Mind Guide to Parkinson’s Disease.

Call the Parkinson’s Foundation free Helpline at 1-800-4PD-INFO (1-800-473-4636) to talk to Helpline specialist.

While the Parkinson’s Foundation is here for you year-round, every April we find new ways to engage our Parkinson’s community near and far to help us raise awareness during Parkinson’s Awareness Month.

This month, we challenge you to help us #StartAConversation about Parkinson’s disease (PD). The more you talk about PD with your family and friends, the more awareness we can raise about making life better for people with PD by improving care and advancing research toward a cure.

Here are 10 ways you can help us spread PD awareness and start the conversation:

1. Take the Pledge to Start a Conversation to raise awareness about PD. It’s quick and easy! Then encourage others to do the same.
2. Write a Letter to the Editor. Educate your community about Parkinson’s through your local newspaper and inspire others to get involved. Want some talking points? Use our Parkinson’s Awareness Month letter to the editor template.
3. Tell Your Story. While Parkinson.org provides millions of people with vital information each year, sometimes the most life-changing advice comes from you, our readers. Share your Parkinson’s story and you just may inspire someone.
4. Find us on Facebook and Twitter. Follow us all month for new articles, podcasts and resources created specifically for Parkinson’s Awareness Month. Tell us how you #StartAConversation this month on Facebook and Twitter.
5. Host a Do-It-Yourself Fundraiser. Start the conversation among your own social group. Host an event — from a brunch to a hike — where all proceeds help make life better for people with Parkinson’s. We’ll help you every step of the way!
6. Advocate with Us. We’re looking for people in the PD community to champion our mission. Join us in advocating for research, addressing women’s-specific needs relating to PD and helping legislate change.
7. Walk for Parkinson’s. This year, we are hosting a record 39 Moving Day events across the nation. Move with us and join the conversation. Find your nearest walk today.
8. Start a Support Group. Leslie Peters and her husband couldn’t find a support group for people with young-onset PD that fit their needs. She now manages a support group that meets over dinner. Start a support group that works for you. Read our Support Group Guide.
9. Try a New Class. Strengthen your PD community through our local networks. The Parkinson’s Foundation provides people with PD and caregivers access to local exercise classes and education programs. Call our Helpline at 1-800-4PD-INFO (473-4636) to find your next class.
10. Call our Helpline at 1-800-4PD-INFO (473-4636). Start a conversation with one of our Parkinson’s Information Specialists. The Helpline is here to support you in any way. You can also email the Helpline at Helpline@Parkinson.org.

These 10 tips are just the beginning. Find a new, exciting way to #StartAConversation at Parkinson.org/Awareness.