Tips for Daily Living

Non-motor Symptoms: What's New? Part 2

Man struggling to read

Parkinson’s disease (PD) is largely known for its motor symptoms, slow movement, tremor and stiffness, but other wide-ranging challenges, known as non-motor or non-movement symptoms — can often be most problematic. Treating these non-motor symptoms promotes optimal living.

The following article is part two of a series based on a Parkinson’s Foundation Expert Briefings webinar exploring the latest research and treatments in PD-related non-motor symptoms, by Ronald Pfeiffer, MD, Oregon Health and Sciences University, a Parkinson’s Foundation Center of Excellence. Read part one next.

Constipation

Gastrointestinal Functions

Gastroparesis is a condition that prevents the stomach from emptying properly. For many with PD, spontaneous stomach muscle movement is impaired, preventing food from easily emptying. This creates a feeling of fullness after a few bites of food, causing reduced appetite. Symptoms include nausea, vomiting, heartburn, bloating and weight loss. Diet and medications, including BOTOX® injections to the pyloric sphincter (a muscle that helps the movement of partially digested food and liquids) are among treatment options. Dopaminergic medication delivery systems may also avoid gastroparesis.

Small Intestinal Bacterial Overgrowth (SIBO): While this recurrent non-motor gastrointestinal issue has not been well-researched in Parkinson’s, one study showed that up to 54 percent of people with PD experience it. Decreased gut motility, which is common with PD, can lead to SIBO, characterized by:

  • Increased bacterial density in the small intestine
  • Presence of colonic-type bacterial species in the small intestine

SIBO can result in malabsorption (condition that makes it difficult to digest and absorb nutrients from food) and might explain weight loss in PD. When experiencing SIBO, levodopa and medications may take longer to work, wear off more quickly or not work at all, because they must travel to, and through, the stomach to be effective. Antibiotics may help.

Constipation: This can be chronic in PD. It can be caused by physical changes due to the disease and/or PD medications. Increasing dietary fiber, through food and supplements, increasing fluids and exercise, and minimizing starchy foods can all be beneficial. More than 60 percent of people with PD experience increased straining, pain and incomplete evacuation of their bowels. Dopaminergic medications, including apomorphine injects, BOTOX® injections or biofeedback techniques may offer relief.

Cardiovascular Functions

Orthostatic hypotension: More than half of people living with PD experience a significant blood pressure drop upon standing; certain medications can worsen this. This drop can cause lightheadedness or fainting, fuzzy vision, foggy thinking, headache, lower back ache, lethargy or fatigue. Increase blood pressure or reduce lightheadedness by:

  • Drinking 12-16 ounces of cold water before standing
  • Crossing legs or flexing calf muscles can
  • Eating small, frequent meals and increasing fluids and salt
  • Making slow position changes
  • Wearing abdominal binders or pressure stockings that reach the waist, like pantyhose
  • Talking to your doctor about blood pressure medications

Postprandial hypotension: Occurs when a person’s blood pressure drops after eating. Meals heavy in carbohydrates can worsen the condition, which develops within 15 minutes of eating and may persist up to three hours after. Ease symptoms by consuming less carbohydrates at meals or napping after eating.

For others with PD, blood pressure can rise too high when lying down; blood pressure can also rise drastically at night. Discuss prescription treatments with your doctor.

Bladder Functions

Overactive bladder can occur in more than 80 percent of people with PD, causing frequent or nighttime urination, urination in small amounts, the sudden need to urinate and involuntary leakage. Newer anticholinergic (treat multiple urinary conditions, including incontinence and overactive bladder) drugs (including trospium (Sanctura®), darifenacin (Enables®) and solifenacin (VESIcare®), can treat incontinence and overactive bladder, as can mirabegron (Moretti®), which fosters bladder relaxation and increases bladder capacity. Detrusor muscle BOTOX ® injections can also improve urinary dysfunction.

Obstructive urinary symptoms: These issues account for less than 40 percent of PD-related urinary problems and are often characterized by urinary hesitancy or a weak stream. These features may lead to overflow incontinence, which can cause unexpected urine leakage due to an overfull bladder. Medications, including alpha blockers (terazosin, doxazosin, or tamsulosin), 5-alpha-reductase inhibitors (dutasteride or finasteride) or a parasympathomimetic agent, such as bethanecol, as well as intermittent catheterization, may improve obstructive urinary symptoms. Talk to your doctor about symptoms and treatment.

Sexual Functions

Sexual dysfunction in PD affects women and men. Women may undergo reduced vaginal sensitivity or reduced desire. Men may experience erectile dysfunction or decreased desire or orgasm. Testosterone therapy can improve decreased libido in men, while water-soluble lubricants can improve lubrication. Discuss treatment options with your doctor.

Prescription treatment of erectile dysfunction may include PDE5-inhibitors, including sildenafil (Viagra®), tadalafil (Cialis®) and vardenafil (Levitra®); sublingual apomorphine; or intrapenile injections of a vasoactive drug, such as alprostadil (Caverject®) or papaverine.

Thermoregulatory Functions

This inability to regulate body temperature can manifest as excessive sweating, or a drastic rise or drop in body temperature. Excessive sweating (hyperhidrosis), experienced by more than 50 percent of people with PD, consists of sudden, drenching sweats of the head and neck. Though it may occur in people taking no PD medications, it often occurs as prescriptions wear off or during episodes of dyskinesia. Adjusting dopaminergic therapy can help. One study suggests subthalamic deep brain stimulation (DBS) may also help. BOTOX ® injections can be used if sweating is localized to armpits.

Fatigue

Present in almost 60 percent of people with PD, fatigue is an understudied non-motor symptom. It is often ranked by people with PD as one of their most disabling symptoms. It’s still unclear whether fatigue in PD is a brain or muscular problem; currently there are no well-formulated treatments. While medications have been tried with inconsistent results, some studies suggest exercise helps.

Breathing Difficulties

Some people with Parkinson’s experience shortness of breath; this is due to chest wall muscle rigidity preventing full chest expansion. Adjusting medications to reduce “off” times and dyskinesia can help. Treating anxiety or obstructive sleep apnea, if present, can also help, as can inspiratory and expiratory muscle strength training.

Recognizing and Addressing Symptoms

Non-motor PD features may also include sleep disorders, cognitive changes, hallucinations and delusions or weight changes. It’s important to stay abreast of all symptoms, and to discuss treatments with your doctor.

Read the first article in series now: Non-motor Symptoms: What’s New? Part 1.

View free resources on non-motor symptoms

Parkinson's Foundation Helpline

Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to your Parkinson’s questions. Helpline specialists can assist you in English or Spanish, Monday through Friday, 9 a.m. to 7 p.m. ET.

Science News

Vitamin D Levels Linked to Falls and Some Non-Motor Symptoms in People with PD

Parkinson's Foundation Science News blogs

A new study finds vitamin D levels are significantly correlated with falls and some non-motor symptoms in people with Parkinson’s disease (PD). The results of this clinical trial appear in the March 9, 2019 edition of Neurologica.

Vitamin D deficiency is widespread in people with PD. Although epidemiological studies have investigated the relationship between PD progression and vitamin D levels, the results have been mixed. Some studies have reported a higher prevalence of vitamin D deficiency in people with PD compared to those without PD, while others did not find a relationship between vitamin D and PD progression.

Looking under a microscope

Previous studies of vitamin D and PD only focused on one or two aspects of PD and did not include non-motor symptoms, which can seriously limit quality of life. Vitamin D has a vital role in bone metabolism. Lack of vitamin D is correlated with an increased risk of falls and fractures. This can increase hospitalization and even fatal disability rates in people with PD. Studies have also shown that vitamin D levels are associated with cognition and mood in people with PD.

For the new study, researchers led by Jing Chen and Chun-Feng Liu at the Department of Neurology, Second Affiliated Hospital of Soochow University in Suzhou, China, studied 182 participants with PD and 185 people without PD. Researchers measured participants’ vitamin D levels and bone mineral density (BMD) of the lumbar spine and femoral neck (located near the top of the femur bone).

Results

  • PD Participants had significantly lower vitamin D levels in their blood compared with people without PD.
  • PD participants with lower vitamin D levels had significantly higher frequency of falls and insomnia.
  • PD participants with lower vitamin D levels had significantly higher scores for the Pittsburgh Sleep Quality Index (a measure of sleep problemsdepression and anxiety).
  • Participants with PD had significantly lower mean BMD of the lumbar spine and femoral neck.

What Does It Mean?

This study clearly identified associations between vitamin D levels and some non-motor symptoms in people with PD. The results indicate that vitamin D deficiency may play a role in the development of PD and suggests that vitamin D supplementation may be useful in treating the non-motor symptoms of PD.

The researchers conclude that overall, the findings support further study of vitamin D supplementation for its possible benefits on both the clinical symptoms and quality of life of people with PD.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about nutrition and Parkinson’s disease 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.

Advancing Research

Parkinson’s Foundation to Present Most Recent Mental Health Research Findings

Man talking to therapist

Non-movement Parkinson’s disease (PD) symptoms can impact mental health, relationships and quality of life. The Parkinson’s Foundation has conducted two recent studies dedicated to learning more about treating non-movement symptoms within its Center of Excellence Network.

Centers of Excellence are medical centers with a specialized team who are up to date on the latest Parkinson’s medications, therapists and research to provide the best care to a combined 185,500 people with Parkinson’s.

International Congress of Parkinson’s Disease and Movement Disorders

This year, the Parkinson’s Foundation will share their research findings at two international conferences: at the International Congress of Parkinson’s Disease and Movement Disorders in Nice, France, and at the World Parkinson Congress (WPC), which took place in June at Kyoto, Japan.

Both conferences gather thousands of neurologists, researchers and health professionals in the Parkinson’s community.

Multidisciplinary Care Models for Parkinson’s Disease: The Parkinson’s Foundation Centers of Excellence Experience

People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach, where different specialists treat motor and non-motor symptoms as the disease progresses. Every Center of Excellence works with a multidisciplinary team in one of three different care models:

  1. Team members are all in the same institution.
  2. Team members are within different, but affiliated institutions.
  3. Team members are in separate institutions, mainly community based.

The Parkinson’s Foundation studied usage of complementary health therapies across the three models and examined relationship between therapy usage and clinical outcomes. The study used Parkinson’s Outcomes Project (the largest ongoing Parkinson’s study) data to analyze 10,058 patients from 22 designated centers. The study showed that:

  • Therapy referrals varies across different disciplines among Centers of Excellence, with physical therapy being the most common referral.
  • Psychosocial and mental health therapies may be underutilized ― in terms of physician’s referrals and patients seeing a mental health professional.  
  • There were significant differences in clinical outcomes across care models.

These findings show the need to expand our understanding of how different care models and therapies (such as occupational, physical and psychological) affects care and outcomes for people with PD.

→ This study was shared at the 2019 World Parkinson Congress in Kyoto, Japan. Authors: Clarissa Martinez-Rubio, PhD, Jennifer G. Goldman, MD, MS, Samuel S. Wu, PhD, Hanzhi Gao, Fernando Cubillos, MD, Nadia Romero and Veronica L. Todaro, MPH.

Relationships of Gender, Care Models and Neuropsychiatric Symptoms In Parkinson’s Disease

In this study, the Parkinson’s Foundation compared complementary health therapies across the three care models mentioned above in relation to the difference between men and women living with Parkinson’s, their outcomes, management of the neuropsychiatric symptoms ― specifically depression and psychosis.

Using data from the Parkinson’s Outcomes Project, we studied 10,058 people with PD seeking treatment at 22 Parkinson’s Foundation centers who experienced depression or psychosis, referred to a psychologist or psychiatrist and receiving antipsychotic or antidepressant medication. The study showed that:

  • Depression and psychosis are experienced and treated differently depending on gender.
  • Psychosocial and mental health therapies may be underutilized ― in terms of physician’s referrals and patients seeing a mental health professional.  
  • Significantly more women than men were identified with depression, self-reported limitation of activity due to depression and received antidepressant medication.
  • People with Parkinson’s who sought care at a center with an external allied healthcare team were significantly more likely to be hospitalized due to mental health, gastrointestinal issues and DBS-related symptoms.

These findings show the need to expand our understanding of how different care models and usage of complementary therapies affects care and outcomes for people with PD, as well as, the need to expand our understanding on how gender affects these factors

→ This study was shared at the 2019 International Congress of Parkinson’s Disease and Movement Disorders in Nice, France. Authors: Jennifer G. Goldman, MD, MS, Clarissa Martinez-Rubio, PhD, Samuel S. Wu, PhD, Hanzhi Gao, and Veronica L. Todaro, MPH.

Learn more about the Parkinson’s Outcomes Project at Parkinson.org/Research.

Raise Awareness

Speech Therapy and Parkinson's: Do I have a speech problem?

Woman drinking water from a glass

About 89 percent of people with Parkinson’s disease (PD) experience speech and voice disorders, including soft, monotone, breathy and hoarse voice and uncertain articulation. Speech disorders can progressively diminish quality of life for a person with PD. The earlier a person receives a baseline speech evaluation and speech therapy, the more likely he or she will be able to maintain communication skills as the disease progresses. Communication is a key element in quality of life and positive self-concept and confidence for people with PD.

Speech and swallowing issues in Parkinson’s can occur for various reasons. The top three issues include:

  1. Directly related to the disordered motor system that accompanies PD, including rigidity, slowness of movement and tremor.
  2. Change in sensory processing that is related to speech. It is believed that people with PD may not be aware that their speech is getting softer and more difficult to understand.
  3. Another cause of this condition is that people with PD may have a problem with “cueing” themselves to produce speech with adequate loudness.

Tell your doctor If you are experiencing any changes in your speech or voice. Ask for a referral and a prescription for a speech evaluation a treatment. If you have not noticed changes in your speech, but a spouse, care partner or friend has pay attention to their comments. The sooner you get a speech evaluation and start speech therapy, the better.

Speech / Voice infographic

Take Our Quiz

Many people with Parkinson’s have these statements to describe their voices and the effects of their voices on their lives.

Choose the response that indicates how frequently you have the same experience (0 = never, 1 = almost never, 2 = sometimes, 3 = almost always, 4 = always).

To find your score, add up your answers. A score of 10 or higher indicates you might have a speech or voice problem that is affecting your quality of life and you should ask for a referral to a speech pathologist.

The quiz is no longer available.

What next?

The Parkinson’s Foundation Helpline can help you find a nearby speech pathologist who has experience in Parkinson’s. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636).  

Looking for ways to improve your speech and communication? Check out this blog article for ways you can improve your speech starting now. 

For more information about Speech Therapy and Parkinson’s check out our Speech Therapy Fact Sheet and other resources at Parkinson.org.

Advancing Research

The Ins and Outs of Participating in Parkinson’s Research

The Latin phrase sine qua non translates into ‘without which, there is nothing.’ People with Parkinson’s disease (PD) who participate in research are the sine qua non of the research team. Marilyn Neault is the first-ever person with Parkinson’s who is helping the Parkinson’s Foundation guide its Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s. As a steering committee member, she voices the viewpoints of people with Parkinson’s as they relate to the groundbreaking study.

Marilyn Neault

“I find it both humbling and exciting to be a ‘patient voice,’ expressing my own viewpoint while channeling the viewpoints of others,” Marilyn said. As Marilyn puts it, as a member of the steering committee, she weighs in on multiple large-scale issues on behalf of people living with the disease:

  • How would we (people with Parkinson’s) react, when our care team asks to deposit each chapter of our personal medical stories into an information library, with our names replaced by numbers?  
  • Can we understand the forms and explanations?
  • How can the study shine a light on our problems, and predict what would help?
  • What motivates us to attend visits on schedule?
  • What would convince us that our participation is valuable?

With fiercely dedicated effort, since 2009 the Parkinson’s Outcomes Project team keeps essential data anonymized from more than 13,000 patients and growing to include two dozen Parkinson’s Foundation Centers of Excellence around the world.

Marilyn Neault

“I have the greatest respect for my fellow steering committee members, who contribute topnotch knowledge, sensitivity and teamwork,” Marilyn said. “Steering committee meetings focus on nurturing the data set, harvesting ripe fruit and feeding the research efforts of scientists, to improve care in areas that make a difference to people with Parkinson’s.”

Marilyn’s dedication is already impacting the steering committee. "People like Marilyn bring expertise from the lived experience of Parkinson's that is invaluable in informing what we do and ensuring that how we do it is respectful of the interests and abilities of the participants,” said Connie Maras, Parkinson’s Outcomes Project principal investigator. “Marilyn's combination of experience as a person with PD and a researcher gives her a unique ability to inform what we do."

As a retired clinician and researcher from the auditory field, Marilyn appreciates the committee’s effectiveness. “The committee’s focus reminds me of the fortune-cookie saying, ‘To be a difference, a difference must make a difference.’”

Marilyn Neault

After attending her first in-person meeting with the steering committee, she felt incredibly grateful that “so many bright, busy people are working hard on a problem that I have. The committee members have adopted our challenge, Parkinson’s, as their own. Research participants with Parkinson’s should feel devoted to holding up our end of the bargain.”

Her Parkinson’s Foundation engagement has also inspired her. “Witnessing my fellow committee members’ dedication to improving the quality of my life makes me take better care of myself, exercising more, eating better and nurturing friendships,” Marilyn said. “The Parkinson’s Foundation’s commitment to using the Parkinson’s Outcomes Project for maximum benefit illustrates why giving to the Foundation, and encouraging others to do so, gives donors the opportunity in this endeavor.”

Marilyn's advice to her fellow PD community is simple: “Participate, prepare for scheduled appointments and provide complete information.”

Learn more about the Parkinson’s Outcomes Project.

Advancing Research

10 Steps for Caring for a Person with Parkinson’s Dementia

couple talking together

Parkinson’s disease (PD) is known for its associated motor symptoms, such as tremor and slowed movement. People can be surprised to learn that cognitive changes are among common PD non-motor symptoms. Significant cognitive impairment can impact care partners, too. Education and healthy coping strategies ensure everyone’s best care.

The following article is based on a Parkinson’s Foundation Expert Briefings webinar exploring care partner strategies to identify and help people with PD dementia, hosted by Joseph Quinn, MD, a neurologist at Parkinson’s Foundation Center of Excellence Oregon Health & Science University and the Portland VA Medical Center. Dr. Quinn, the Parkinson’s Center director for both institutions, focuses his research on cognitive decline prevention and dementia treatment.

What is PD Dementia?

Mild cognitive impairment is very common with Parkinson’s disease. It can impact memory and thinking but doesn’t always affect daily activities. Dementia, however, is when cognitive changes impact daily living. Dementia may or may not occur in people with PD. According to recent research, 30 percent of people with Parkinson’s do not develop dementia as part of the disease progression.

The different types of dementia include:

  • Alzheimer’s disease – the most common form. Impaired memory is a prevailing feature.
  • Parkinson’s Disease dementia (PDD) – diagnosed when a person with Parkinson’s experiences cognitive decline after years of motor symptoms. Trouble multitasking and planning complex operations, vision problems and hallucinations are all common.
  • Lewy body dementia (LBD) – diagnosed when PD motor symptoms and cognitive decline happen around the same time, and progress together.

An allied team approach to Parkinson’s healthcare fosters optimal living; the same is true with PDD and LBD. The following 10 steps, adapted by Dr. Joseph Quinn from an Alzheimer’s Association checklist, can help care partners and families of people with PDD and LBD ensure everyone’s well-being, health and safety.

Parkinson’s Disease Dementia and Lewy Body Dementia Family Checklist

  1. Confirm your diagnosis. Issues with mood, sleep, medications or other medical problems can all look like dementia. Your Parkinson’s doctor should look at all factors before a diagnosis of PDD or LBD is provided.
  2. Find a doctor familiar with PDD and LBD. There is no single test for dementia associated with Parkinson’s. The diagnosis is made on clinical grounds. It’s important to find a specialist or physician familiar with dementia or geriatric medicine. Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (473-4636) for a referral.
  3. Get Parkinson’s dementia education, including:
    • Medical advice – a physician can give diagnosis, outlook and treatment guidance.
    • Legal advice – Discuss your healthcare and financial preferences with loved ones early on. Find a lawyer who can help formalize these preferences to ensure they are carried out if you are someday unable to voice them.
    • Communication – the best ways to communicate with a person with PD dementia and deal with difficult behaviors aren’t always intuitive and require patience and acceptance.
    • Key safety issues – prioritize everyone’s well-being by learning about PD dementia danger risks.
    • Expert resources – call the Parkinson’s Foundation Helpline 1-800-4PD-INFO (473-4636), or search “cognition” or “dementia” in the PD Library. The Alzheimer’s Association also offers educational material.
  4. Plan a family meeting. The needs of any person with dementia will increase over time. Family members should know how to modify communication and support the primary care partner.
  5. Include the person with dementia in the decision-making process. Personality and judgement are often intact in early dementia stages. It’s important to give the person with dementia the chance to express their preferences, but it’s also important to know when safety concerns should limit decision-making.
  6. Consider and monitor safety issues from the time of diagnosis. Take key precautions:
    • Change driving privileges before safety becomes an issue. Your doctor can make a driving evaluation referral.
    • Ensure financial safety. People with dementia are at greater risk of falling victim to scams and fraud.
    • Limit prescription risks. Confirm medication names and doses with your loved one’s doctor. If the person is in dementia’s early stages and capable, fill their weekly pill box together and monitor use.
  7.  Work out financial and legal issues.
    • Certain legal documents are important for everyone, regardless of age or health:
    • An advance directive ensures your healthcare preferences are carried out if you cannot communicate them.
    • Healthcare and financial power of attorney (POA) documents name whom you want to make related decisions for you, should you become unable.
    • In later stages of PD (with or without dementia), consider physician orders for life sustaining care (POLST).
    • Rarely, conservatorship or guardianship measures need to be put in place.
    • An elder law attorney can help with financial planning for future healthcare and insurance needs.

Call the Parkinson’s Foundation Helpline 1-800-4PD-INFO (473-4636) for legal resource referrals in your area. Both the National Academy of Elder Law Attorneys and National Elder Law Foundation can offer referrals to navigate legal and financial planning complexities.

  1. Seek out support services. Care partners need someone to talk with and rely on for support and regular breaks. 
  2. Provide an ID bracelet. Medical alert identification including a phone number is vital should the person with PD dementia wander or get lost, even briefly.
  3. Focus on the primary care partner’s needs. To take good care of others you must first care for yourself.
    • Have an emergency care plan to ease transitions should others need to unexpectedly take over care duties.
    • Attend a support group or talk to someone.
    • Build in weekly time for yourself.
    • Get adequate sleep to better cope with daily challenges.
    • Remember your sense of humor.
    • Sustain supportive friendships.
    • Value yourself.

Care Partner Self-Care Steps

Compared to their peers, studies show caregivers to a loved one with dementia face increased health risks. A collaborative Centers for Disease Control and Alzheimer’s Association cognitive health roadmap shows caring for your heart can also benefit your brain.

To reduce care partner heart, stroke and cognitive decline risks, embrace the American Heart Association’s online My Life Check health assessment tool and “Life’s Simple 7” checklist, which includes:

  1. Aerobic exercise
  2. Control cholesterol
  3. Eat according to Heart Association guidelines
  4. Manage blood pressure
  5. Manage weight
  6. Reduce blood sugar
  7. Quit smoking

Learn More

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

Science News

Predicting Dementia, Faster

Parkinson's Foundation Science News blogs

People with Parkinson’s disease (PD) and their caregivers frequently report cognitive decline as one of their greatest concerns. Commonly described in terms of mild cognitive impairment (PD-MCI) and Parkinson’s disease dementia (PDD), it is estimated that 30 percent of people with Parkinson’s do not develop dementia as part of the disease progression. Research shows that those with PD-MCI are at increased risk for progression to Parkinson’s dementia. Research also shows that the prevalence of dementia increases with a variety of factors, such as age, disease duration and motor severity.

studying brain scans

Over the past decade, the International Parkinson and Movement Disorders Society (MDS) created specific criteria to test for PD-related cognitive impairment and dementia, resulting in two types of neuropsychological tests:

  • Level I – an abbreviated, short and quick series of tests.
  • Level II – a comprehensive, lengthy series of tests shown to successfully predict the increased risk of developing PD-related dementia that considers the effects of age, sex, years of education, depression and the severity of PD movement symptoms.

The challenge, however, is that it is not always possible to conduct the Level II test because of increased costs, time and participants’ inability to cooperate with such a long assessment. Researchers began to wonder, could the Level I test provide similar predictability?

Recently published in Movement Disorders journal, a study titled, “Risk of Parkinson’s Disease Dementia Related to Level I MDS PD-MCI” (Hoogland et al., 2019), sought to evaluate how well the Level I (abbreviated) test might compare to their Level II (comprehensive) test (Hoogland et al., 2017). A sophisticated side-by-side comparison ensued.

A research team analyzed the data of 1,045 people with PD from eight international studies. Key data used included demographics, motor signs, depression, detailed neuropsychological testing and longitudinal follow-up for conversion to Parkinson’s disease dementia (PDD). The five domains evaluated were attention, executive function, memory, visuospatial function and language.

Results

  • Having Level I mild cognitive impairment (PD-MCI), increasing age, being male and severity of PD motor signs each independently increased the risk of progression to Parkinson’s disease dementia (PDD).
  • Level I mild cognitive impairment in PD classification independently contributes to the increased risk of progressing to dementia.
  • Both Level I and Level II mild cognitive impairment in PD classification had similar discriminative ability with respect to the time to Parkinson’s disease dementia. In other words, Level I was as predictive and reliable as Level II.
  • The Level II criteria did not show added value compared to Level I.

What Does This Mean?

Called ‘validating an instrument’ in the scientific community, this large, international study w scientifically showed that the Level I test was able to predict the PD-MCI progression to PDD equally well as the Level II test. Being able to make such an accurate prediction quickly, effectively and at reduced cost, early on, has far-reaching implications. Having this predictive level of information in the short-term can help people with PD, caregivers and clinicians improve PD care, understanding and communication.

In the long-term, these findings open new avenues of research to explore, such as the testing the possible positive effects of various lifestyle strategy changes and medications that may slow or halt the progression to dementia.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the Parkinson’s and dementia in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).

Tips for Daily Living

Podcast Playlist: 7 Podcast Episodes to Get You Through Winter

Man listening with headphones

With cold temperatures and short days, winter may also coincide with feelings of isolation or loneliness. Know that you are not alone. The winter blues are common and can be triggered by the smallest occurrences. Whether you’re feeling down or simply need an escape, tune into our Substantial Matters: Life and Science of Parkinson’s podcast episodes and tackle the seasonal lows with some of our most popular podcast episodes featuring Parkinson’s disease (PD) experts.

1. Mental Health in a Medical Setting

Mental health issues are often a part of a chronic disease such as Parkinson’s, but no one comes into a disease as a blank slate. Therefore, distress in the setting of a disease should not only be ascribed to having the disease but should also take the whole person into account.

Listen Now

2. Recognizing Non-motor Symptoms in PD

In addition to tremor or stiffness, people with PD are often troubled by common non-motor symptoms such as fatigue, pain, disturbed mood or cognition. Visits to PD specialized therapists, exercise, dance and other movement regimes can help alleviate these problems.

Listen Now

3. A Western Perspective on PD: Understanding Complementary Medicine

While the traditional medicine from a Western perspective typically include drugs, rehabilitation therapies or surgical operations, many Eastern cultures take a holistic approach to treatment through the use of herbs, acupuncture, dietary therapy and other techniques aimed at restoring a healthy balance.

Listen Now

4. Autonomic Problems

A comprehensive, team approach can help people with PD improve quality of life issues that may not come up during routine doctor visits due to the associated stigma or potential feelings of embarrassment. These issues can include sexual/intimacy matters, blood pressure drops or urinary symptoms and often have easy solutions when addressed.

Listen Now

5. Talking to Children About Parkinson’s

Receiving a Parkinson’s disease diagnosis, especially at an early age, can be seen as disrupting an entire life plan. But it doesn’t have to. This episode offers advice about how to talk to children about the disease, where to turn for resources, and how having a relative with a chronic disease can have positive aspects for a child.

Listen Now

6. The Benefits of Exercise for People with Parkinson’s

Regular exercise is essential for people with Parkinson’s and has been shown to improve many PD symptoms including balance, mobility, issues with depression and constipation. Additionally, research shows that exercise may have a protective effect on the brain, slowing the degeneration of brain cells.

Listen Now

7. More Than Movement: Addressing Cognitive and Behavioral Challenges in Caring for PD

Addressing cognitive, behavioral, emotional and other neuropsychiatric issues may be challenging for physicians and for those they treat. This episode highlights an integrated cognitive behavioral movement disorder program addressing these challenges.

Listen Now

New to podcasts? Listen online or read our How to Subscribe article.

Advancing Research

Neuro Talk: What is Parkinson’s Disease?

Advancing Research

PD and Medication: Advancing Treatment

giving medications to older man

The second most common neurodegenerative disorder after Alzheimer’s disease, Parkinson’s disease (PD) affects approximately one million Americans. Scientists are working toward discoveries to prevent or slow the disease early on, before it affects movement. Breakthrough studies include genetic research that could lead to targeted PD therapy. In the meantime, experts are finding ways to boost the effectiveness of existing medications, and introducing new motor and non-motor symptom treatments nearly every year.

This article is based on a Parkinson’s Foundation Expert Briefings webinar exploring innovative PD treatments by Fernando Pagan, MD, Georgetown University Hospital Medical Director, a Parkinson’s Foundation Center of Excellence.

Simply put, medication can help people better manage Parkinson’s symptoms. Before carbidopa/levodopa (brand name SINEMET®) ― long successful in lessening motor symptoms ―  was introduced in the 1960s, the lifespan of people with PD was well below that of the general population. After its discovery, people with PD’s life expectancy equaled that of the general population. Studies show treating Parkinson's improves life for those living with PD ― increasing lifespan and reducing symptoms.

An Introduction to PD Medication

Not too long ago, medication options were limited; doctors often postponed treatment to delay medication-associated side effects. Today more than 30 medication options are available. Working with your doctor to try to find the right medicine combination for you is key.

Those with mild PD symptoms may wonder when beginning treatment makes sense. Research shows earlier detection, treatment and expert care helps people with Parkinson’s live well longer.

Many Parkinson’s symptoms are due to lack of dopamine in the brain. Dopaminergic medications include levodopa and dopamine agonists. These either briefly replenish dopamine or mimic its action. Other neurotransmitters are also involved in PD, including acetylcholine, serotonin and norepinephrine. Newer treatments to modulate these can improve different PD symptoms.

Carbidopa/levodopa formulations

Levodopa, the most effective PD treatment, converts to dopamine in the brain. Carbidopa enhances levodopa ― preventing nausea and helping more levodopa get to the brain, so less medication is needed.

Drug manufacturers prepare Levodopa differently ― including a variety of strengths, immediate or controlled-release and liquid form. Some preparations are designed to address specific challenges, such as Parkinson’s-related gastrointestinal (GI) issues, which can interfere with medication absorption.

  • Immediate and controlled-release carbidopa/levodopa tablets can be used alone or in combination with other medications to improve slowness, stiffness and tremor in Parkinson’s.
  • Long-acting extended release carbidopa/levodopa, IPX066/Rytary, contains beads designed to dissolve at different rates, giving users longer lasting benefits.
  • Carbidopa/levodopa enteral suspension – (CLES or DUOPA™) – is delivered into the small intestine improving absorption and reducing “off” times.
  • Levodopa inhalation powder INBRIJA™ is an add-on drug for “off” periods in people taking carbidopa/levodopa. Administered via inhaler, it bypasses the GI system. It can be used up to five times a day, improving “off” symptoms for people with decreased gut motility while waiting for oral carbidopa/levodopa to take effect.

Dopamine agonists

These medications come in a variety of formulations to supplement or boost the action of levodopa. Compulsive behaviors can be a side effect.

  • Dopamine agonist rotigotine transdermal patch (NEUPRO®) delivers medication through the skin, directly into the bloodstream.
  • One of the oldest and most potent on-demand dopamine agonists, apomorphine, is administered via injection, delivering “on” time within about 10 minutes. Still in clinical trials is sublingual apomorphine. Dissolved under the tongue, it can relieve “wearing off” episodes for people with Parkinson’s disease in 15 minutes.
  • Currently only available in Europe, subcutaneous apomorphine treatment offers a less invasive motor fluctuation treatment option. A small delivery tube placed under the skin is connected to an apomorphine-filled pumping device. It can reduce daily “off” time and possibly dyskinesia by reducing needed levodopa dose. Those with hallucinations and dementia might not be candidates.

COMT inhibitors

COMT (catechol-o-methyl transferase) inhibitors, used with levodopa, ease “wearing off” symptoms and extend “on” time by blocking levodopa breakdown. The three COMT categories include:

  • tolcapone
  • entacapone (some formulations combine levodopa/carbidopa/entacapone)
  • opicapone, currently only available in Europe

MAO-B inhibitors

MAO-B (monoamine oxidase type B) inhibitors also block dopamine breakdown, and can be used as monotherapy in early Parkinson’s. As PD progresses, it may be used as an add-on to other medications. Forms include:

  • selegiline
  • rasagiline
  • safinamide

Anticholinergics

Anticholinergics reduce tremor by blocking overactivity of acetylcholine, a neurotransmitter regulating movement. Younger patients often better tolerate these treatments due to potential side effects, including dry mouth, constipation and hallucinations. Types include benztropine and trihexyphenidyl HCL.

Amantadine

An early Parkinson’s drug, amantadine was originally developed as an antiviral agent. It was found to also improve PD tremor, rigidity and dyskinesia. Delivery is improved in new, long-acting forms of this drug. GOCOVRI® ER amantadine capsules treat dyskinesia and “off” time in people with PD taking carbidopa/levodopa. This must be taken before bedtime and provides control of dyskinesia upon awakening and throughout the day.

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A2A antagonist

A brain circuit group called the basal ganglia play a role in PD symptoms. The basal ganglia have adenosine A2A receptors that are located next to dopamine receptors. Scientists have found activating the dopamine receptor or blocking the adenosine A2A receptor can improve PD symptoms.

Istradefylline, an adenosine A2A receptor antagonist improves motor symptom fluctuations. It received U.S. FDA approval in 2019.

Managing Non-motor Symptoms

Non-motor symptoms are common in Parkinson’s and can be more challenging than motor symptoms. There are many management medications available.

Orthostatic hypotension

About one-third of people living with PD experience a significant blood pressure drop upon standing, known as orthostatic hypotension; certain medications can worsen this. This drop can cause lightheadedness or fainting, and other symptoms.

Droxidopa (NORTHERA®) treats lightheadedness. It should not be taken within five hours of bedtime. Side effects include headache, dizziness, nausea, fatigue and high blood pressure when lying down.

Psychosis

Confusion, hallucinations and delusions can be experienced by up to 70 percent of people living with Parkinson’s. The disease itself or PD medications can cause PD-associated psychosis.

The newest treatment, pimavanserin (NUPLAZID®), does not block dopamine or worsen motor symptoms. It can improve hallucinations, delusions, night-time sleep and daytime sleepiness. Side effects include nausea, confusion and hallucinations. Older options have treatment shortcomings.

Clozapine (Clozaril) requires weekly blood tests, and though quetiapine prescribed off-label hasn’t been shown effective across several randomized Parkinson’s disease clinical trials many Parkinson experts believe it is helpful for hallucinations.

Drooling

The FDA recently approved the botulinum toxins XEOMIN® (incobotulinumtoxinA) and MYOBLOC® (rimabotulinumtoxinB) to treat sialorrhea, or drooling, a common Parkinson’s symptom. MYOBLOC is also be used to treat PD-related sustained cramping, or dystonia.

Rivastigamine 

The rivastigmine (Exelon®) patch, a treatment for Alzheimer’s, can improve mild cognitive impairment or dementia in Parkinson’s. Donezepil (Aricept) can also be used.

Sleep disorders

PD-related brain changes can cause sleep challenges. People with rapid eye movement sleep behavior disorder (RBD) do not have normal muscle relaxation while dreaming, causing them to act out dreams during REM sleep. Clonazepam and melatonin can be used to improve symptoms.

Surgical Interventions

This multi-procedure surgery inserts electrodes into a motor-function targeted brain area; an implanted impulse generator battery then stimulates this area with electrical impulse to improve “on” time. Users are given a DBS control device. Manufactures Abbott, Boston Scientific and Medtronic have all made recent improvements to these devices.

More Resources

Check out more Parkinson’s Foundation resources about medication now:

If you have any questions about Parkinson’s medications call our Helpline at 1-800-4PD-INFO (473-4636).

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