For many, it is embarrassing to bring up taboo topics with your doctor ― from sexual dysfunction to incontinence. However, when it comes to living with Parkinson’s disease (PD), sometimes these topics can be connected to the disease itself or side effects to PD medications.

No topic should be considered off limits to discuss with your healthcare team. The more we normalize and bring awareness to these issues, the less taboo they become. View some of these topics and their connection to Parkinson's.

Sexual Dysfunction

Sexual dysfunction is common in men and women with PD. The issue often goes unaddressed as patients, spouses and healthcare providers may not be comfortable discussing sex. Parkinson’s itself may cause sexual dysfunction due to the loss of dopamine. Medications, such as anti-depressants, can also contribute to sexual dysfunction. To note, most PD drugs are not associated with impotency or loss of libido.

Hypersexuality can also be linked to certain dopamine agonists. There are many ways to address PD-related sexual dysfunction, and it all starts with speaking to your doctor. Try writing your symptoms down before your next appointment and telling your doctor you have a sensitive issue you want to discuss.

Learn more

• Sexual Health and Parkinson’s
• Navigating Sexuality and Intimacy with PD

• Intimacy Issues and Parkinson’s Disease 101

Impulse Control Disorders

Dopamine medications have improved life for millions of people, but researchers believe that some people with PD on dopamine agonists or monoamine oxidase (MAO) inhibitors can develop impulse control disorders: unhealthy levels of gambling, shopping, eating or sexual activity.

If you believe that you or a loved one has an impulse control disorder, try to identify a trend in unhealthy behaviors and discuss it with your doctor. These disorders usually respond to medication changes. Your doctor can often work with you to reduce your dosage or switch to another medication.

Learn more

• Impulse Control
• New Study Examines Impulse Control, REM sleep and Dopamine

Caregiver Burnout

For many, stress can be a part of life when caring for someone with a chronic illness such as PD. However, some care partners may have a tough time coping with the fact that they need help. Care partners and their loved ones should address caregiver burnout as soon as you notice warning signs: feelings of anxiety, anger followed by guilt, bitterness towards family members and depression.

In general, 40 to 70 percent of caregivers are significantly stressed, and about half of these meet the criteria for clinical depression. While a challenge in itself, learn your limits as a care partner and find a support network that works for you. Many times, you can work with your loved one’s care team or a social worker to find additional help and resources that work best for you.

Learn more

• Balancing Life and Caregiving
• What to Expect Emotionally

Palliative Care

For many, the term palliative care is associated with fear. Think of palliative care as supportive care, defined as helping people with Parkinson’s and care partners plan for the future, address non-motor symptoms and provide an extra level of support. Palliative care can help people with PD and their families at any stage.

Palliative care is not the same as hospice care. It does include hospice, which is end-of-life palliative care, but also provides support for patients and families from the time of diagnosis.

Learn more

• Launching A Modern Supportive Care Program Across U.S. Centers of Excellence
• Advanced PD and Palliative Care in the 21st Century
• Palliative and Hospice Care

End of Life Planning

Many adults avoid the subject altogether. However, all adults, even if their health is excellent, should document their wishes and preferences should a health emergency occur. If you have a spouse, partner, children or others you care about, as your disease progresses estate planning can help you ensure that they are provided for and cared for, if necessary.

Get organized. Consider creating a binder with the following main document categories: Medical, Family, Insurance/Property and Finance. Make sure that a close family member or friend knows where to find them in case they are needed. Taking the time to make advance preparations for this inevitability is practical and necessary. Honest conversations about end-of-life planning and care may not be comfortable or easy, but they are important so you can ensure that your wishes are honored.

Learn more

• End of Life
• The Role of Hospice
• Getting Organized
• Caregiving: Preparing for Changes
• Planned Giving

Addressing Uncomfortable Topics with Your Doctor

Doctors usually wait until the end of an appointment to ask, “anything else?” How do you transition into your potentially uncomfortable topic? 

1. Remember that your doctor has heard it all. She/he wants to help you increase your quality of life.
2. Give yourself a quick pep talk. Your symptom or issue has been impeding on your quality of life. The conversation will only last a few minutes and may have a simple solution.
3. Write it down. Give yourself a natural transition in the conversation to bring up your topic. Try something like, “I wrote down some symptoms and/or issues I want to discuss, and they are sensitive in nature.”
4. Add details. Try to remember when the issue began, how long it has been a problem, when it occurs and all your symptoms.

Your doctor will work with you to address the issue and can often provide guidance or a recommendation.

For more information visit our non-movement symptoms page. You can also discuss any topic with our Helpline at 1-800-4PD-INFO (473-4636).

A concussion is a type of traumatic brain injury (TBI). They are generally described as self-limiting and on the less-severe end of the brain injury spectrum. It is estimated that as many as 3.8 million concussions occur in the U.S. every year during competitive sports and recreational activities. That number may be even higher ― research shows that upwards of 50 percent of concussions may go unreported. What does a concussion have to do with Parkinson’s disease (PD) and dementia? Possibly a lot.

Recently published in the journal, Family Medicine and Community Health, a study titled “Associations between concussion and risk of diagnosis of psychological and neurological disorders: a retrospective population-based cohort study” (Morissette, Prior, Tate, Wade, & Leiter, 2020), sought to investigate whether having experienced a concussion might increase one’s risk of being diagnosed with PD and dementia, as well as Attention-Deficit Hyperactivity Disorder (ADHD) and Mood and Anxiety disorders (MADs) later in life.

This is not the first study to connect Parkinson’s to concussions. What makes this study different is that it focuses on Parkinson’s and the more common mild concussion (or mild TBI), sustained from falls or exercise-related injuries. Previously, research has focused on studies comparing PD and concussions known as high-impact TBIs ― those related to sports injuries or traumatic contact sustained by the head.  

This was a robust, case-controlled, 25-year retrospective study examining medical records from 1990-1991 to 2014-2015. It compared the health outcomes of 47,483 people (28,021 men and 19,462 women) who had suffered concussions with 139,030 (81,871 men and 57,159 women) healthy people (controls) matched by age, sex, socioeconomic status and geographical location. The study used several statistics models among other sensitivity models.

Results

Regardless of age, sex, socioeconomic status and residence, having suffered a single concussion in one’s lifetime increased the likelihood of later being diagnosed with:

• Parkinson’s disease by 57%
• Dementia by 72%
• ADHD (Attention-Deficit Hyperactivity Disorder) by 39%
• Mood and Anxiety Disorders (MADs) by 72%
• Sustaining multiple concussions further increased the risk for developing both PD and dementia.

What Does It Mean?

While the CDC considers most TBIs reported annually to be mild, this study found that experiencing a concussion may, in fact, be a substantial risk factor for developing Parkinson’s disease and dementia (as well as ADHD and MADs).

Having a single concussion increased the risk of developing PD by 57% and dementia by 72%; and having multiple concussions further increased the risk of developing PD and dementia compared to people who suffered only one concussion. While additional studies are surely warranted, this study suggests that concussions should be taken more seriously by healthcare providers, as there may be unanticipated, long-term neurological effects.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the association of brain injuries and PD by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Traumatic Brain Injury Late in Life Increases Parkinson’s Risk
• New Evidence Links Traumatic Brain Injury with Parkinson’s

Parkinson's disease (PD) is usually described as a movement disorder of the nervous system that worsens over time. Parkinson’s is believed to be the result of dopamine-producing neurons (nerve cells) in the brain gradually dying off. When approximately 80 percent of dopamine is lost, the hallmark symptoms of PD emerge, such as tremors in the hands, arms, legs, jaw or head, slowness of movement, stiffness in the limbs and trunk of the body, and difficulty with walking, balance and coordination.

However, PD also has non-motor symptoms, such as problems with attention, planning, language and memory. One impairment in particular may not be getting the attention it deserves: visual impairment.

In people without Parkinson’s, visual impairments are associated with falling, bone fractures, depression, anxiety and dementia. People with PD are not only at an increased risk for these issues but can experience intensified visual impairments ― because they rely on visual cues to help compensate for movement challenges. Understanding how visual impairments impact the health and quality of life of people with PD is paramount.

Recently published in the journal, Movement Disorders, “Visual Impairment Is More Common in Parkinson’s Disease and Is a Risk Factor for Poor Health Outcomes” (Hamedani, Abraham, Maguire, & Willis, 2020), a study found that visual impairment is 60 percent more common in PD than the general population.

This study used Medicare claims data from 2010 to 2014 to analyze the burden of moderate to severe visual impairment of 26,209,997 Medicare beneficiaries, age 65 and older, with and without PD. Data was analyzed (using a statistical model) to examine visual impairment and incident hip fracture, depression, anxiety, dementia and death. The frequency with which those with PD had a professional eye exam was measured and demographic data was gathered.

Results

• Of the 26,209,997 unique Medicare beneficiaries, 287,010 (1.1%) carried a diagnosis of PD, and 187,572 (0.72%) carried a diagnosis of moderate to severe visual impairment.
• Visual impairment is 60% more common in PD than the general population.
• Moderate to severe visual impairment was associated with increased hip fracture, depression, anxiety, dementia and death, in both the general population and those with PD.
• Approximately only 40% of those with PD had a yearly eye exam.
• In both PD and non-PD populations, the prevalence of moderate to severe visual impairment increased with:
  • Age
  • Black or Hispanic ethnicity
  • Medicaid eligibility
  • Female sex
  • Diabetes
  • Hypertension

What Does It Mean?

The prevalence of moderate to severe visual impairment in the Parkinson’s population is more common than those who do not have PD. This visual impairment is associated with increased risk of accidents, cognitive issues, and death in both people with and without PD. Those who fall into certain demographics or have conditions, such as diabetes and hypertension, are more likely to have moderate to severe visual impairment. It is important to know that many comorbid conditions (e.g., diabetes, anxiety, depression and hypertension) can be managed and treated; plus, Medicare pays for annual eye exams.

It is imperative that attention be given to these study findings, and more research conducted. Understanding these relationships is an essential component to helping develop interventions and patient education efforts to improve health outcomes and quality of life for people with PD.

As an aside, while not addressed in this study, dopamine is known to play a key role in retina health and numerous other visual functions, such as light regulation, contrast sensitivity, color vision and visuospatial construction. Further, there is research to suggest that alpha-synuclein overexpression affects dopamine neurons in the retina. Expanding research to incorporate the role of dopamine and alpha-synuclein is surely warranted.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the association of vision problems and PD by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Vision Changes
• Non-motor Symptoms: What’s New? Part 2
• Seeing Clearly with PD: Vision Changes

Historically described as being on opposite ends of the spectrum, apathy affects about 40% of people with Parkinson’s disease (PD), while impulse control disorders (ICDs) affect between 14% and 40% of people with PD. How are they different?

Apathy ― which comes from the French, apathie, meaning “passionless existence” ― is the feeling of being emotionally flat, lacking enthusiasm or interest in doing anything. Apathy can express itself in different ways, often leading people who experience it to stop exercising, keeping up with friends and family or even stop taking medications. Of note, apathy is often confused with depression, but they are not the same: with depression, there’s a profound sense of feelings of guilt and worthlessness.

Impulse Control Disorders (ICDs) are the inability to stop doing something that is harmful, or could become harmful, to yourself or others to the point that they impair one’s ability to function at work, home and navigate day-to-day life. Performing the activity can lead to a feeling of elation. Examples include online gambling, compulsive shopping and hypersexuality.

Since apathy and ICDs elicit opposite feelings, is it possible for a person with PD to experience both at the same time? It seems counterintuitive, but may not be. A study recently published in the journal, Neurology, “Co-occurrence of apathy and impulse control disorders in Parkinson’s disease”(Scott et al., 2020) sought to explore whether a lack of motivation or interest can co-exist with an irresistible urge to perform activities.

Michael S. Okun, MD, Parkinson’s Foundation National Medical Director, and the team of study co-authors utilized a convenience sample of 887 people with PD from the University of Florida Norman Fixel Institute for Neurological Diseases, a Center of Excellence, and characterized them by disease combination; they used a variety of tests to measure apathy, depression, anxiety, cognition and ICD.

Demographic data were taken, including PD onset, disease severity, as well as medication use. Medication was of particular interest because in addition to relaying messages that plan and control body movement, dopamine also plays a primary role in the reward pathway in one’s brains (the “feel-good” chemical).

Study participants included those with Parkinson’s experiencing:

• An impulse control disorder (ICD): those with clinically significant ICD symptoms only
• Apathy: those with clinically significant apathy symptoms only
• Both: those with both clinically significant apathy and ICD symptoms
• Neither: those with neither clinically significant apathy nor ICD symptoms

Results

• 61.6% of study participants had both ICD symptoms and apathy
• 41.3% of study participants with apathy also had ICD symptoms
• The ICD-only group had higher daily dopamine agonist medication use than patients in the apathy group
• There was no significant difference in dopamine agonist use between the Neither group and the apathy group
• Anxiety and depression each positively correlated with both apathy and ICD symptoms, separately

What Does It Mean

A person with PD can indeed experience both apathy and ICDs ― suggesting they are not on opposite sides of the spectrum. In fact, a significant majority (62%) of those with PD in this study with ICDs had clinically significant apathy; while 41% of people with PD experiencing apathy also had ICD symptoms. Further, having both apathy and one or more ICDs resulted in having the highest levels of anxiety and depression.

“The findings from this study challenge the longstanding dogma that apathy cannot co-exist with impulse control behaviors. Although it seems counterintuitive, clinicians should appreciate this possibility.”

- Dr. Okun

This study suggests that it is imperative that clinicians, researchers, healthcare providers and care partners consider that these two PD symptoms are not mutually exclusive ― you can experience both at the same time. Knowing that someone with PD could have apathy and ICDs simultaneously, could profoundly impact clinical study designs, how novel medications are designed and tested, the approach (and mindset) of caregivers, and perhaps how those with PD think about themselves.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about apathy and impulse control by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Apathy and Parkinson’s Disease
• Apathy
• Impulse Control and Parkinson’s disease
• New Study Examines Impulse Control, REM sleep and Dopamine

Medical cannabis (or marijuana) is a complementary and alternative therapy of high interest for the Parkinson’s disease (PD) community. The Parkinson’s Foundation believes that this topic should be better understood, and has committed to doing so with a medical marijuana convening and its published guidelines, new articles, interviewing experts on our podcast and most recently, conducting a survey to better understand cannabis use among the PD community.

In the U.S., cannabis has become more widely available for medical and recreational use. However, little is known about the attitudes towards, and experiences with, cannabis use among those living with PD. To address this shortcoming, the Parkinson’s Foundation distributed a survey, Weeding Through the Haze: A Survey on Cannabis Use Among People Living with Parkinson’s, Disease in the U.S., to 7,607 people with PD in January 2020 and analyzed the 1,064 complete responses we received.

“It is important to understand how people with Parkinson’s disease are using cannabis, and whether they are basing their use on evidence-based recommendations or trial and error. This survey will help shed light on the community viewpoints and experiences surrounding cannabis use for Parkinson’s disease symptoms,” said Megan Feeney, MPH, Parkinson’s Foundation Associate Director of Community Engagement and survey lead.

Medical Cannabis and Parkinson’s

Managing Parkinson’s is complex. As the neurodegenerative disease progresses, so do its symptoms for most. Many symptoms, especially non-motor symptoms, are not effectively addressed with current medications. Many people with Parkinson’s have looked to medical cannabis to provide some relief. However, more research is needed to prove if and how PD symptoms are relieved when using cannabis, and if so, what type of cannabis and what dosage are most effective and safe for the consumer.

Nevertheless, there is an increasing interest in the use of medical cannabis. Currently, 47 of 50 states in the U.S. permit the sale or consumption of hemp-sourced cannabidiol (CBD) products with less than 0.3% tetrahydrocannabinol (THC), while 35 of 50 states have approved marijuana for medicinal purposes and 15 of 50 states permit recreational use of marijuana. Today, broad numbers of people with PD have access to cannabis.

Survey Results

The 1,064 survey respondents came from 49 states. The average age for respondents was 71, and the average time they have lived with Parkinson’s is seven years. The survey asked specific questions about cannabis use ― from symptom management to motivation for use and side effects ― and questions for those who do not use cannabis and why.

Experiences with Cannabis and Managing PD

Of the respondents who consumed cannabis:

• 25% used cannabis within the previous six months.
• 57% learned about cannabis use from the internet, friends or other people with PD.
• 64% had not received a cannabis recommendation from a licensed doctor or provider.
• 56% were not provided any information on how to use cannabis (such as dosage, type and frequency of use).
• Most consumers reported their most common time of cannabis use is either in the evening or at bedtime.

Interestingly, 23% of consumers stated they stopped cannabis use in the previous six months, primarily due to a lack of symptom improvement. Of note, 76% of respondents did not use cannabis, primarily because there was a lack of scientific evidence supporting any benefits.

Experiences with Cannabis and Managing PD Symptoms

Among respondents, cannabis was used to treat motor and non-motor symptoms. When asked about associated symptom relief, most consumers reported that cannabis use led to a moderate or considerable improvement in the severity of anxiety, pain, sleep disorders, stiffness and tremor. Overall use and the level to which cannabis was reported to address motor and non-motor symptoms varied widely.

Negative Side Effects

Less than 13% of consumers reported negative side effects from cannabis use. We also asked non-consumers of cannabis if they had experienced any previous negative cannabis experience. Of these, about half reported negative side effects.

Combined, both groups listed their negative side effects as an increase in anxiety (30%), impaired coordination (20%), dizziness (20%) and “other reasons” (38%), which included sleepiness, confusion, worsening orthostatic hypotension.

PD Medication and Cannabis Consumption

Cannabis consumers rated non-motor prescription medications as less efficacious than non-consumers. Among all consumers, 85% reported that cannabis use had no impact on their prescription medication usage, and 89% said cannabis was not a replacement for their PD prescription medications.

Clinical Trials

Among all who responded, 82% were interested in learning more information about a clinical trial exploring the impact of cannabis on PD symptoms, and 62% were interested in enrolling in a clinical trial.

Key Takeaways

While better understanding cannabis experiences of people with PD, looking at the bigger picture, survey results show that:

• A knowledge gap among people living with PD, which may be impacting their decisions about cannabis use, as a large portion of consumers reported not knowing the type, brand or dosage of cannabis they primarily use.
• Among some consumers, reported cannabis use may have been beneficial for motor and non-motor PD symptoms including anxiety, pain, sleep disorders, stiffness and tremor. This is consistent with other research studies.
• One in five survey respondents are current cannabis consumers.
• Cannabis use did not have an impact on PD prescription medications.
• Cannabis consumers see the limited effectiveness of cannabis for symptom management. Most consumers recognize that cannabis is not a substitute for their PD medications.

Learn More

Learn more about Parkinson’s and medical cannabis in the below resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):

• Parkinson.org/Marijuana
• Medical Cannabis Convening Findings: Top Takeaways and Guidance
• Ask the Experts: The Challenges of Using Marijuana as a Parkinson’s Treatment, Part 1 and Part 2 
• Marijuana and Parkinson’s: What Do We Really Know?

Learn more about Parkinson’s and marijuana at Parkinson.org/Marijuana or by calling our Helpline at 1-800-4PD-INFO.

Join us in celebrating the 100 podcast episodes of our series: Substantial Matters: The Life and Science of Parkinson’s Disease! It’s important to us that we take a pause and celebrate the victories with you, our listeners.

To commemorate our 100 episodes of educating the Parkinson’s community “on air,” we want to share some of our favorite episodes with you below. We also want to hear from you ― what topics are you interested in learning more about? Tell us by taking this survey.

Diagnosis

Episode 1: Early Warning Signs of Parkinson's 

In our debut episode, Michael Okun, MD, talks about early signs of Parkinson's disease (PD) and offers practical advice on how to proceed after a diagnosis. If you or a loved one recently received a Parkinson’s diagnosis, be sure to order your Newly Diagnosed Kit at Parkinson.org/NewlyDiagnosed.

Motor Symptoms

Episode 90: Movement Strategies: Mobility, Falls & Freezing of Gait

Heather Cianci, PT, GCS says an early consultation can take advantage of a particularly valuable window of opportunity to address movement issues and improving movement and physical impairments can improve one’s mental state as well. Download our Falls Prevention or Freezing and PD fact sheets for additional tips on managing motor symptoms.

Non-Motor Symptoms

Episode 38: More Than a Movement Disorder: Addressing Mood and Coping

Licensed Clinical Social Worker, Jessica Shurer, discusses the emotional changes that may occur throughout the course of Parkinson's disease along with suggestions for how people who are unable to travel to large medical centers may find help to address their emotional needs. Download our fact sheets on Anxiety in Parkinson’s, Apathy in Parkinson’s and Combatting Depression to learn more about non-movement PD symptoms.

Treatment & Management

Episode 5: How to Manage Parkinson’s “Off” Time

Parkinson’s can be unpredictable ― symptoms can come and go or get better and worse throughout the day. Irene Malaty, MD, explains more about what causes these changes and how you can work with your doctor to manage them. Read, order or purchase the Kindle eBook of Managing Mid-Stride: A Treatment Guide to Parkinson’s.

Fitness & Exercise

Episode 3: The Benefits of Exercise for People with Parkinson's

Regular exercise is essential for people with Parkinson's. Bas Bloem, MD, PhD, describes what is known about exercise and PD and what is still in the research stages. He also offers tips on overcoming barriers to getting enough exercise. Read, order or purchase the Kindle version of our book Fitness Counts and fact sheet, Exercise and Parkinson’s.

Marijuana and Parkinson’s

Episode 26: Medical Marijuana - Going Green for Parkinson's?

Danny Bega, MD sheds light on some of the issues and concerns surrounding the use of medicinal cannabis for people with Parkinson's. Learn more about Parkinson’s and marijuana at Parkinson.org/Marijuana.

Nutrition

Episode 4: The Importance of Good Nutrition for People with Parkinson’s 

Nutrition is increasingly part of the conversation when it comes to good Parkinson's care. Dr. 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. Download our fact sheet Nutrition and PD to learn more about how nutrition can impact PD.

PDGENEration

Episode 64: The Background of the PDGENEration Initiative

When you participate in our ground-breaking study, PD GENEration: Mapping the Future of Parkinson’s disease, you can help scientists in their journey to advance understanding of PD, leading to new, more effective PD therapies. If you have a confirmed Parkinson’s diagnosis, visit Parkinson.org/PDGENEration to learn more and enroll.

Young Onset Parkinson’s Disease (YOPD)

Episode 10: Young-Onset Parkinson’s 101

A YOPD diagnosis brings with it special challenges. For example, deciding how and when to disclose the diagnosis at work and to children can be difficult, not to mention coping with a progressive condition and trying to plan for the future. Social worker Elaine Book discusses these challenges and more, as well as techniques for dealing with them. Listen to other YOPD podcast episodes: Characteristics of YOPD and YOPD: Lifestyle, Family, and Counseling.

Hospitalization

Episode 77: An Aware in Care Success Story 

Aware in Care Ambassadors Kathy McMurray and Sara Holman share their success stories, as both were instrumental in educating hospital staff and refining the electronic medical records system to meet the unique needs to treat people with PD. Visit Parkinson.org/AwareInCare to order your Aware in Care hospital kit or download its components.

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