Ogemaw Parkinson's Support Group

07/29/2025

07/28/2025

07/28/2025

Estate Planning Virtual Talk

07/25/2025

BY: PARKINSON'S FOUNDATION

My PD Story 3

Epin Christensen

Epin Christensen’s mother was diagnosed with Parkinson’s disease (PD) over a decade ago. In November 2023, Epin joined our Parkinson’s Champions team and took to the race course, running the same marathon to which she has a deep attachment.

Epin Christensen and three other women at Parkinson's Champions event
“I grew up watching the NYC Marathon from my childhood bedroom, admiring the runners as they passed by my home. I have fond memories of those moments with my mom, and she was proud that I ran this marathon in her honor.”

Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular endurance events. Every step they take brings us closer to a future without PD — because Parkinson’s is not a sprint but a marathon.

Epin raised more than $5,000 for Parkinson’s research and completed the race in honor of her mother. “We run and will continue to run for people with Parkinson’s,” she said.

Epin Christensen holding a box of fruit snacks at Champions event
“The marathon holds a special place in my heart, but running it to support those battling this terrible disease is even more meaningful. In addition to my mother, I have friends who are courageously living with young-onset Parkinson’s. Furthermore, many friends have shared their heartbreaking family experiences with Parkinson's.”- Epin

After completing this incredibly special marathon in 2023, Epin continued to seek ways to support the work of the Parkinson’s Foundation and honor her mother. She found what she was looking for at the Marine Corps Marathon Weekend as a the Champions Cheer Team Captain in October 2024.

Epin Christensen at a dinner with 5 others
The Champions Cheer Team inspires Parkinson’s Champions athletes as they challenge themselves in races and marathons across the country. She brought pom poms, signs, smiles and endless sugary snacks to support those putting their bodies to the test for their loved ones fighting PD.

Epin is a leader and an inspiration, diving in feet first to show her love and support for her mother in her battle with PD.

Send a message to learn more

07/25/2025

BY: PARKINSON'S FOUNDATION

My PD Story 2

People with PD

Tom Dobrinski

When I first mentioned my symptoms during a routine annual physical in December 2020, I expected the usual advice — get more sleep, stretch more, maybe adjust my medication. I had just had knee replacement surgery the year prior on top of having ongoing arthritis and spine issues. It didn’t seem odd to me or my wife Shari that my movements were slower, I had difficulty turning in bed, and I had fewer facial expressions.

Tom Dobrinski holding walking poles in picture
However, when I brought up these changes with Audrey Tatar, MD, at Northwestern Medicine, she grew somber and quiet. Then she said, “These are typical signs of Parkinson’s.”

Parkinson’s? I knew that people with Parkinson’s disease (PD) experience tremors, but I wasn’t shaking.

Dr. Tatar referred me to Danny Bega, MD, at the Northwestern Medicine Parkinson’s Disease and Movement Disorders Center, a Parkinson’s Foundation Center of Excellence. Six weeks later, Dr. Bega confirmed my diagnosis.

At first, I felt fear of the unknown, but also relief that it wasn’t something worse and that all my symptoms were occurring for a reason. Shari and I knew little about PD, but we were willing to do anything to slow its progression. I started medication, committed to staying active and got involved with the early intervention program at Shirley Ryan Ability Lab.

Tom Dobrinski riding a bike
Shari and I explored the Parkinson.org, the Parkinson’s Foundation website, and found a wealth of resources, education and support. Together, we found events such as their Moving Day walk, as well as Tai Chi, ping pong, improv and dance classes through Northwestern Medicine. I’ve also found boxing three times a week at Rock Steady Boxing to be very beneficial.

All these activities have reinforced the importance of both exercise and community. I’ve met many inspiring people I would not have met otherwise, and that camaraderie has been invaluable.

Tom, wife, and friends taking a selfie on an outdoor walk
Rather than holding me back, PD has pushed me to new experiences and unexpected places. I became an advocate for the Parkinson’s Voice Project, joined conversation groups where people with PD share their experiences, and enrolled in a Shirley Ryan AbilityLab program counting steps and heart rate. I’ve even hiked in Patagonia, Mont Blanc and the Dolomites, all of which were challenging but equally rewarding.

For anyone newly diagnosed with PD, here is my advice: Don’t go through it alone. Engage with the community, exercise regularly and use the resources available to you. Shari has been my biggest supporter throughout this journey, encouraging me when I’ve needed it most.

Tom Dobrinski and wife on a hike
For care partners of individuals newly diagnosed with Parkinson's disease, Shari offers her advice: “Be a part of your partner’s journey. Remember that Parkinson's affects you as well and becomes a significant part of your life as a care partner. Encourage your partner to take charge of their health, stay informed about the disease, and seek support from others.”

As the saying goes, “When you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s.” I wasn’t a textbook case, but each person’s experience with PD is unique; the right support and resources can make all the difference.

Learn more about the Northwestern Medicine Parkinson's Disease and Movement Disorders Center.

Find the Parkinson’s exercise class that works for you! For virtual options, explore our Fitness Friday videos. For in-person classes, visit your local chapter’s webpage or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Send a message to learn more

07/25/2025

BY: PARKINSONN'S FOUNDATION

Living with Parkinson's
My PD Story

People with PD
Angela Carnahan
I’m Angela Carnahan — a wife, mother of two adult children and the Northwest Sr. Manager of Business Implementation for a telecom company. Staying active has always been essential for me, helping me manage the stresses of work and life. I was dedicated to Pilates, spinning, morning walks and my Peloton bike and tread… until everything shifted shortly after my 48th birthday. I began noticing my right hand shaking unexpectedly, a subtle tremor that soon became impossible to ignore or hide.

Family smiling in front of Christmas tree.
After visits to my primary doctor, an MRI, and a quick referral to a neurologist, specializing in movement disorders, I received a diagnosis of young-onset Parkinson’s Disease (YOPD) just three months after my symptoms began. In disbelief, I sought further confirmation with a DATscan, which confirmed the diagnosis.

Once the shock settled, I turned to research and found tremendous support through the Parkinson’s Foundation. They provided me with invaluable information and connected me to a community that understands this journey.

I found my way to my first-ever PD research study — the Parkinson’s Foundation genetic study, PD GENEration: Mapping the Future of Parkinson’s. Participating was incredibly easy, and I was happy to feel like I was helping the future for a cure.

Thanks to encouragement from the Parkinson’s Foundation, I’m now heading into my fourth year participating in Parkinson's Revolution at TEAMride, and my third as a co-lead volunteer, helping to organize and raise funds for this event.

Exercise remains my anchor, as it’s the only proven way to slow Parkinson’s progression. This disorder can bring on symptoms like tremors, muscle cramping and balance issues — but my commitment to fitness has been a lifeline.

My Pilates routines at InstaPhysique are specifically tailored to build strength, balance, stability and core endurance — all crucial for managing my symptoms. Joining my local Rock Steady Boxing group (Hope in Your Corner) has also greatly improved both my physical and mental resilience, keeping me strong in the face of Parkinson's challenges.

Find a PD-related exercise class near you! Explore classes through your local Parkinson’s Foundation chapter or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Send a message to learn more

07/25/2025

BY: MY PARKINSONS TEAM

How To Manage Difficulty Swallowing in Parkinson’s

Medically reviewed by Evelyn O. Berman, M.D.

Written by Sarah Winfrey

Key Takeaways
Parkinson's disease can cause difficulty chewing and swallowing, which may lead to serious health complications like dehydration, malnutrition, and breathing problems.
Many people with Parkinson's experience swallowing difficulties at any point during their condition, which can cause issues like drooling, choking, and unintended weight loss when eating or drinking becomes challenging.
People experiencing swallowing problems should talk with their neurologist, who can refer them to a speech-language pathologist for specialized testing and treatments like swallowing exercises or dietary modifications.
Hide full summary
Parkinson’s disease can cause a person to have difficulty chewing and swallowing. This can have many effects on their health and quality of life. They can develop dry mouth, dehydration, or malnutrition. They can also aspirate (inhale) food, liquid, or saliva into their windpipe, which can be frightening. As one MyParkinsonsTeam member shared, “I recently started choking on my own spit, and for the first time ever, I got really scared because I couldn’t get any air.”

Difficulty swallowing (dysphagia) can be a challenging symptom of Parkinson’s. The good news is that it can be treated. Here’s what you need to know about this symptom, including why it happens and how it can be managed.

How Do People Experience Difficulty Swallowing With Parkinson’s?
Many people diagnosed with Parkinson’s experience difficulties swallowing at some point while living with the condition. Dysphagia can occur at any point over the course of the disease, even during the early stages. As one member wrote, “I have trouble swallowing now. This is new to me — it’s only been a problem over this last week. It makes it hard to swallow my meds.”

Having trouble swallowing can cause many other problems, depending on why a person struggles to swallow and how severe their dysphagia is. Many people find that they drool or can’t keep food and drinks in their mouths. Others find themselves sputtering, choking, or dealing with a sore throat during or after meals. Some may not even realize there is a problem until they start losing weight without trying.

Some people with dysphagia start to avoid certain foods or drink fewer liquids when swallowing becomes difficult. Over long periods of time, this can lead to other problems. As one member observed, “My husband has had the same swallowing problems and was losing way too much weight.”

Why Does Parkinson’s Cause Difficulty Swallowing?
Swallowing involves the coordination of many complex muscle movements in the mouth and neck. Changes that lead to problems with swallowing can occur anywhere along the upper digestive tract, from the mouth to the esophagus.

In Parkinson’s, swallowing difficulties can be caused by the loss of dopamine neurons in different parts of the brain. If they are lost in the substantia nigra region in the midbrain, the problem is considered a motor symptom. However, losing dopamine neurons in the lower brain stem or the cortex can cause issues with coordination. This is considered a non-motor difficulty because the problem is with the coordination itself and not with the way the muscles are functioning.

The Risks Associated With Difficulty Swallowing
Many risks are associated with swallowing problems. Unintended weight loss is common, as having problems swallowing may make a person less inclined to eat. Long-term dysphagia can also deprive a person of nutrients, leading to malnutrition.

Aspiration pneumonia is another potential problem. When swallowing is difficult, people can end up inhaling liquid, food particles, or saliva in their lungs. Since the lungs cannot get rid of these substances easily, an infection can develop. Sometimes, these infections can lead to significant illnesses like aspiration pneumonia.

Manage Swallowing Problems With Parkinson’s
You can do many things to manage swallowing problems associated with Parkinson’s. As the Parkinson’s Foundation notes, the first step to treating dysphagia is telling your neurologist about the problem. They can refer you to a specialist, known as a speech-language pathologist (SLP), for treatment.

The SLP will begin by asking you about the swallowing difficulties you’ve been experiencing. They will evaluate your symptoms and medical history. In most cases, they will order a video X-ray or an endoscopy to see how your swallowing muscles are functioning as you eat and drink.

After identifying the cause of your swallowing problems, the SLP will recommend one or more approaches to help you start swallowing and drinking as normally as possible. Some interventions may work for some people but not for others. You may have to try several before you find one that improves your swallowing.

Treat Parkinson’s With Medication
Managing dysphagia often begins with treating the underlying cause. In swallowing problems caused by Parkinson’s, this can mean treating Parkinson’s with medication.

Many medications are available for people diagnosed with Parkinson’s. For example, levodopa helps ease stiff muscles and slow movements. As with most drugs, you might experience some side effects while taking levodopa. These can include constipation, dizziness, insomnia, and anxiety. If you experience any of these side effects while taking levodopa, let your health care provider know right away.

Finding the best drug treatment for your Parksinson’s might also improve your swallowing function. Swallowing problems don’t go away for everyone taking Parkinson’s medication, but there’s a good chance that you will see at least some improvement.

Get a Swallow Test
Some doctors, clinicians, and SLPs can administer a swallowing test or perform a swallowing study. These tests, as well as symptom questionnaires, can help indicate whether you are having problems swallowing and pinpoint where the dysfunction is occurring. After these procedures, doctors and speech specialists can target a person’s treatments so that they address the unique problems contributing to their dysphagia.

Some MyParkinsonsTeam members recommend these tests to anyone who struggles with swallowing. One member told another, “Please ask your doctor to order a barium swallow test to determine why you have difficulty swallowing.”

Another explained, “Your doctor may do a ‘swallow test’ on you, even if you’ve already had one, to see if things are worsening.”

Work With a Speech-Language Pathologist
Certain types of speech and language interventions may help improve your swallowing. Lee Silverman Voice Treatment (LSVT) is one type of treatment that seems to help people diagnosed with Parkinson’s swallow better. This approach helps you isolate certain muscles in the swallowing process and learn to strengthen or better control them while eating or drinking. Think of it as muscle strength training for swallowing.

Some of our members have had great success with this treatment. One shared their experience: “I finally found a great speech therapist in my area who is well-trained in LSVT. I’ve worked with her for two years. She has me 80 percent to 90 percent better. It works, but it does take discipline doing daily exercises and not giving up!”

Change How You Eat and Drink
There are a number of changes that you can make to how you eat and drink that may make swallowing easier. These include:

Taking small sips of drinks and small bites of food
Changing the thickness or texture of the foods you eat
Eating and drinking when your medication is most effective, rather than right after you take it or when it wears off
Sitting up as straight as possible when drinking and eating
Reducing distractions, like conversations, during mealtimes
Making sure you swallow saliva regularly to control excess saliva or drooling
Focusing on keeping your mouth closed while eating and drinking

Send a message to learn more

07/25/2025

Stages of Parkinson’s

BY: MY PARKINSONS TEAM

Medically reviewed by Federica Polidoro, M.D.

Written by Kelly Crumrin
Updated on June 4, 2025
Key Takeaways
Parkinson's disease progresses through several defined stages, affecting individuals differently with varying symptoms and timelines.
Doctors use two main scales to track Parkinson's progression - the Hoehn and Yahr scale which focuses on motor symptoms, and the Unified Parkinson's Disease Rating Scale which considers both motor and nonmotor symptoms like mood changes and cognitive abilities.
While Parkinson's cannot be cured, regular exercise, a healthy diet, and medications can help manage symptoms, and maintaining open communication with healthcare providers is essential for adjusting treatment plans as the condition progresses.
Hide full summary
There are several stages of Parkinson’s disease, which doctors use to track its progression. However, the condition affects individuals differently, and not everyone will experience the same symptoms of Parkinson’s, nor at the same time. Parkinson’s is a progressive condition, meaning symptoms tend to worsen gradually, new symptoms may develop, and disabilities can accumulate over time.

Understanding the stage of Parkinson’s can help you plan care and anticipate future needs for yourself or your loved one diagnosed with the condition.

The Stages of Parkinson’s
The stages of Parkinson’s are measured using the Hoehn and Yahr scale, first introduced in 1967. This scale was later updated to include stages 1.5 and 2.5 to reflect intermediate disease progression. It primarily focuses on motor symptoms, such as tremors, bradykinesia (slowness of movement), and loss of balance.

Another tool some doctors use is the Unified Parkinson’s Disease Rating Scale (UPDRS). This scale considers not only movement symptoms but also nonmotor Parkinson’s symptoms such as changes in mood, cognitive abilities (e.g., thinking, remembering), and social behavior.

Stage 1
At stage 1, motor symptoms typically affect only one side of the body. These symptoms are mild and generally do not interfere with daily activities. People may notice subtle changes in posture, walking, or facial expressions. Disability is minimal or absent, and most people can continue their regular routines.

Stage 1.5
In stage 1.5, motor symptoms still primarily affect one side of the body. However, there may also be involvement of the midline — parts of the body between the head and pelvis — leading to issues with posture or balance. These changes are still mild and may not significantly impact daily activities.

Stage 2
At stage 2, motor symptoms start affecting both sides of the body or the midline. People may experience more noticeable changes in posture, facial expressions, or voice, and walking may become more difficult. While daily tasks like dressing or eating take longer, balance is generally maintained. People in stage 2 can still live independently, but activities become increasingly challenging.

Stage 2.5
In stage 2.5, motor symptoms affect both sides of the body. Balance may begin to be affected, but individuals can still recover normally during a pull test (where a doctor pulls back on the person’s shoulders to assess stability). Although mild issues with stability may start to emerge, many people at this stage remain able to manage daily tasks independently with minimal assistance.

Stage 3
Stage 3 is the middle stage of Parkinson’s. Loss of balance becomes a key concern, making falls more common, particularly during activities such as turning or standing. Motor symptoms significantly interfere with daily tasks such as eating, dressing, and personal care. While disability is considered mild to moderate, most people can still live independently, although they may require occasional assistance.

Stage 4
By stage 4, symptoms are more severe and disabling. People may still be able to stand and walk, but they often need a cane or walker for support. Significant help is needed for personal care and most daily activities, making it difficult or unsafe for people to live alone without assistance.

Stage 5

Stage 5 is the most advanced and debilitating stage of Parkinson’s. Stiffness in the legs may make standing or walking without help impossible, and individuals are often bedridden or require a wheelchair. Round-the-clock care is necessary for all activities, and some individuals may experience additional symptoms, such as hallucinations or delusions.

Another View of Parkinson’s Progression
A newer theory called Braak’s hypothesis suggests that Parkinson’s disease may begin years before motor symptoms appear, with the spread of alpha-synuclein protein playing a key role in disease progression. Early signs, such as loss of smell or digestive issues like constipation, may emerge long before movement problems. While these early symptoms are not yet part of the official staging system, ongoing research is focused on understanding and detecting them earlier. This may help enable earlier intervention, even before stage 1.

Are There Ways To Slow Parkinson’s Progression?
While Parkinson’s disease cannot be cured, certain lifestyle changes may help improve both motor and nonmotor symptoms, contributing to better overall well-being. Regular physical exercise has been shown to benefit symptom management and improve quality of life. Although exercise does not directly slow disease progression, it can help delay the onset of disability.

A healthy diet, like the Mediterranean diet or Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) diet, can support brain health and help manage symptoms like constipation, though its role in slowing disease progression remains under study. Eating nutrient-rich foods may help address some nonmotor symptoms, such as fatigue or digestive issues.

Medications like levodopa and dopamine agonists are essential for managing motor symptoms, but they do not alter the underlying progression of the disease. However, combining medication with lifestyle changes provides a holistic approach to maintaining quality of life. Regular doctor visits are crucial for monitoring symptoms and adjusting treatment plans as needed​​​.

Talk to Your Doctor
Parkinson’s is a progressive disease, and while it affects each person differently, regular communication with your or your loved one’s doctor is essential. Tracking the progression of symptoms and discussing any new or worsening signs can help your healthcare team adjust treatments to provide the best possible care.

By staying proactive and addressing changes early, you can manage symptoms more effectively and maintain a higher quality of life. Don’t hesitate to share all symptoms, even those that may seem unrelated, as they can provide valuable insights into your overall well-being

Send a message to learn more

07/25/2025

BY: MY PARKINSONS TEAM
Behavioral Changes and Parkinson’s
Medically reviewed by Kiran Chaudhari, M.B.B.S., M.D., Ph.D.

Written by Lorelei Tucker, Ph.D.

Key Takeaways
Parkinson's disease involves behavioral changes that can be either symptoms of the condition or side effects of medication, affecting both the person with Parkinson's and their loved ones.
View full summary



People often think of Parkinson’s disease as simply a movement disorder, but it also has nonmotor symptoms — symptoms unrelated to movement. Many people living with Parkinson’s show behaviors that are troubling to the person and their family. These behavioral changes can be a symptom of Parkinson’s, or they may be a side effect of medication.

Behavioral changes can be a symptom of Parkinson’s, or they may be a side effect of medication.

Members of MyParkinsonsTeam have described many behavioral changes that range from annoying to life-threatening. Some people with Parkinson’s disease struggle with anger or impulsive behavior that can affect their friends and family members. Others have hallucinations that cause them to act in ways that don’t make sense to their caregivers. In addition, attention and motivation problems are common and make everyday tasks harder. These behavioral changes can sometimes have an impact on quality of life and put people with Parkinson’s in danger.

Fortunately, there are treatments that can help. With careful monitoring and support from loved ones, people living with Parkinson’s disease can manage these behavior symptoms and sometimes even use the symptoms to their advantage.

Read on to learn about five behavioral changes to watch out for, including how common they are, what causes them, and how they can be treated.

1. Impulsivity and Obsessive Behaviors
Among the most startling changes for people with Parkinson’s are problems with impulsivity (impulse control) and obsessive behaviors. Some people start gambling or overspending, for example. One MyParkinsonsTeam member stayed up all night shopping and bought 10 surfboards in a short amount of time.

Many members of MyParkinsonsTeam have also found that their s*x drive has skyrocketed. One member said their increasing s*xual needs were too much for their partner and strained their marriage. Another member, however, was happy with their "wonderful postmenopausal s*xual awakening."

Some behavioral changes are similar to obsessive-compulsive disorder (OCD) symptoms and can cause real problems for people living with Parkinson’s. For example, a member said their partner started taking things apart and putting them back together, which became a problem when it led to $3,500 in repair bills.

Other times, the obsessive behaviors can be productive, like getting really into creative projects. One member began making wooden flags to sell, giving some earnings to organizations for veterans.

How Common Are Impulsivity and Obsessive Behaviors in Parkinson’s?
At least 14 percent of people living with Parkinson’s experience obsessive and impulsive behaviors. Problems with impulse control and symptoms of OCD tend to show up after a person starts taking dopamine agonist medications, including:

Apomorphine (Apokyn)
Bromocriptine mesylate (Parlodel)
Pramipexole dihydrochloride
Ropinirole
Rotigotine (Neupro)
Impulsive behaviors are especially common in people taking both a dopamine agonist and levodopa/carbidopa.

What Causes Impulsivity and Obsessive Behaviors in Parkinson’s?
Impulsive and obsessive behaviors are likely caused by the effect of Parkinson’s medications on dopamine in the brain. Sometimes called the “pleasure chemical,” dopamine is a chemical produced in the brain that is important for movement and motivation. Parkinson’s disease damages dopaminergic neurons — cells that produce dopamine.

Dopamine agonist drugs act like dopamine in the brain. Increased dopamine activity in the brain helps with motor dysfunction, but it also boosts the brain’s reward system, which may cause obsessive symptoms and impulsive behaviors in Parkinson’s. The use of dopamine agonists, such as ropinirole, has been linked to increased risk-taking behavior and gambling.

How Are Impulsivity and Obsessive Behaviors in Parkinson’s Treated?
Always let your doctor know about new behaviors that are troubling you. Decreasing or stopping a dopamine agonist and switching to levodopa extended-release often helps to alleviate these symptoms. Your doctor may also wish to prescribe a different medication or see if you might be a candidate for deep brain stimulation. Support groups for impulsive behaviors such as gambling may also help.

2. Apathy
People experiencing apathy lose interest in things they previously enjoyed and may have less of an emotional response to what would otherwise be moments of joy, sadness, or anger. Experiencing apathy can be distressing for the person living with Parkinson’s and their loved ones.

MyParkinsonsTeam members have shared some of their experiences with Parkinson’s-related apathy. One member said, “I find myself to be apathetic these last few months. Not in the sense of unmotivated or bored. It’s more like feeling numb. Little do I care if things go wrong. Likewise, I fail to muster happiness when wonderful things happen, like the birth of a baby. I used to feel both joy and sorrow quite intensely.”

Another member responded saying that they could barely muster enthusiasm when their daughter announced that she was pregnant.

How Common Is Apathy in Parkinson’s Disease?
About 40 percent of people living with Parkinson’s disease will experience apathy at some point in the course of disease progression. Some people with Parkinson’s begin losing interest in activities early on in the disease, before they are even diagnosed with Parkinson’s.

About 40 percent of people living with Parkinson’s disease will experience apathy at some point in the course of disease progression.

What Causes Apathy in Parkinson’s?
The root cause of apathy in Parkinson’s is unclear. Apathy is a common symptom of depression, and around 35 percent of people with Parkinson’s experience depression or depression-like symptoms, according to data cited in Nature Reviews Neurology. However, many people with Parkinson’s who don’t have depression do experience apathy, so there isn’t a clear cause-and-effect relationship. Apathy may be due to changes in reward centers in the brain.

How Is Apathy in Parkinson’s Treated?
One small study showed that treatment with the dopamine agonist piribedil may help apathy. Other studies found that exercise and mindfulness meditation helped some people with Parkinson’s feel less apathetic. If the apathy is related to depression, psychotherapy and medication may help with other depressive symptoms.

3. Panic Attacks and Irritability
Anxiety during Parkinson’s can contribute to irritability and outbursts that can hurt people with Parkinson’s and their loved ones. A MyParkinsonsTeam member said they developed new intense jealousy and panic attacks when they couldn’t reach their partner by phone. Another member who is caring for a partner with Parkinson’s said their partner’s irritability has led them to fight nearly every day. The irritability increases stress among people with Parkinson’s, and it can worsen other behavioral symptoms and interpersonal conflict.

How Common Are Panic Attacks and Irritability in Parkinson’s?
Between 20 percent and 50 percent of people with Parkinson’s disease experience anxiety. Anxiety tends to begin early in the course of the disease and may worsen over time. Scientists aren’t sure whether panic attacks and irritability are caused by Parkinson’s disease or by mood disorders like depression and anxiety that occur alongside Parkinson’s.

How Are Panic Attacks and Irritability in Parkinson’s Treated?
Some MyParkinsonsTeam members recommended lifestyle changes like living separately or stepping away when an argument escalates. For some people, anti-anxiety medication like benzodiazepines or cognitive behavioral therapy can help with these symptoms. Ask your doctor for help with feelings of panic. They can help you find support groups and offer referrals for behavior therapy.

4. Hallucinations and Psychosis
Among the most troubling neuropsychiatric symptoms in Parkinson’s disease are hallucinations and psychosis. Hallucinations may include:

Seeing things that aren’t there
Hearing voices
Feeling an unseen presence
One MyParkinsonsTeam member said that “shadows become demons and spirits.” Another member’s husband had delusions that the couple invited people over when they hadn’t even spoken to them.

How Common Are Hallucinations and Psychosis in Parkinson’s?
Some types of hallucinations are more common than others. For example, visual hallucinations occur in 22 percent to 38 percent of people with Parkinson’s, according to findings in the Journal of Korean Medical Science. Auditory hallucinations occur in up to 22 percent of people with Parkinson’s.

When Do Hallucinations and Psychosis Begin in Parkinson’s?
Hallucinations can begin in the early or later stages of the disease and may increase over time. People who experience hallucinations before the 5.5-year mark of the disease typically have clear movement problems early on and are on high doses of medications. Hallucinations and psychosis that develop in the later phases tend to be associated with cognitive decline.

What Causes Hallucinations and Psychosis in Parkinson’s?
The cause of psychosis in Parkinson’s isn’t entirely understood. However, changes to important brain structures could be partially responsible. Some cases of psychosis may be caused by long-term treatment with dopaminergic medication. Deep brain stimulation surgery may also worsen existing psychotic symptoms in some people.

How Are Hallucinations and Psychosis in Parkinson’s Treated?
Treatment for Parkinson’s-related psychosis can involve adding antipsychotic medication or reducing the dose of dopaminergic drugs. Regardless, people experiencing these symptoms need careful attention and support from their loved ones and health care providers to prevent them from potentially harming themselves.

5. Cognitive Impairment
Cognitive impairment and dementia are common in progressive neurological conditions, such as Parkinson’s disease and Alzheimer’s disease. Unlike in Alzheimer’s disease, however, people living with Parkinson’s experience issues with planning, attention, and motivation sooner than they develop memory problems.

A few MyParkinsonsTeam members have talked about forgetting the day of the week and how surprised they were when they checked the calendar. Others have mentioned losing important items like keys and phones.

How Common Is Cognitive Impairment in Parkinson’s?
Between 18 percent and 41 percent of people with Parkinson’s develop dementia or some form of cognitive decline, according to a study in Dialogues in Clinical Neuroscience. In another study, researchers reported that up to 19 percent of people living with Parkinson’s already had mild cognitive impairment at the time of diagnosis. However, it can take as long as 20 years for cognitive impairment to advance to dementia.

What Causes Cognitive Impairment in Parkinson’s?
The root cause of impaired cognition in Parkinson’s is unclear. It may be caused by the neurological effects of the disease. Scientists have found that sleep issues are common in Parkinson’s and are associated with cognitive decline.

How Is Cognitive Impairment in Parkinson’s Treated?
Your doctor may recommend regular neuropsychiatric evaluations to see if cognitive symptoms are worsening. There are medications that can help. You might also use an app to play brain-stimulating games and memory games. Your doctor can recommend some for you to try.

Tips for Managing Behavioral Changes in Parkinson’s
Guidance from medical professionals is crucial, but advice from other people with Parkinson’s can make the difference between living and thriving. The following are suggestions from MyParkinsonsTeam members to manage the behavioral changes in Parkinson’s disease.

Find healthy outlets to channel obsessive behaviors, such as art, woodworking, music, or video games.
Educate yourself and your loved ones so that others can help you identify and manage behavioral symptoms and mood changes.
Take your medications on time and with a meal or snack if advised. Make sure you take your medication as prescribed, and tell your medical team if you have any side effects.
If you’re a caregiver or loved one of a person with Parkinson’s, be patient and pick your battles. Step away, if possible, to clear your head before engaging.
If behavioral or personality changes make living arrangements with your spouse too tricky, consider separate living arrangements.
If you have Parkinson’s, be kind to yourself. If your loved one has it, give them grace while also taking care of your needs and well-being.
It’s tough to go it alone, so find in-person and online support groups. MyParkinsonsTeam is an excellent place to start.

If you have Parkinson’s, be kind to yourself. If your loved one has it, give them grace while also taking care of your needs and well-being.

Take the quiz: Is Your Parkinson’s Causing Behavioral Changes?

Talk With Others Who Understand
MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 101,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.

Have you or a loved one had behavioral changes with Parkinson’s? What tips do you have for managing those changes? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Send a message to learn more