Whether you’re planning your next beach escape or gearing up for a road trip, the need for entertainment is key, and what better way to tune out than tuning into our podcast?

Featuring the latest treatments and techniques in the Parkinson’s disease (PD) field, our Substantial Matters: Life and Science of Parkinson’s podcast features the experts in the Parkinson’s community who cover a series of PD topics including employee dynamics, the benefits of exercise, alleviating voice challenges and more!

We’ve made it easy for you by picking out our top recommended podcast episodes for the summer― think of this as your curated PD podcast playlist. Just a click away, these episodes will transport you into the labs, offices and meeting spaces of PD health professionals who are eager to share more about your PD topic of interest.

1. The Benefits of Music Therapy for Parkinson’s

The benefits of music therapy for Parkinson’s have been well established. Rhythm and rhythmic cuing can help with initiation, coordination and maintenance of movement. Benefits can extend to cognitive functions, communications abilities and mood. Some music therapists have furthered their education as academically trained professionals specifically in working with people with Parkinson’s.

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2. Parenting and Parkinson’s: Raising Children While Living with Parkinson’s

Parenting has its challenges and surprises under the best of circumstances, but when a parent has Parkinson’s, it can put added stresses on the family. As parents’ abilities and roles change, children should understand the disease, how it may change their routines and the potential need to take on additional responsibilities. 

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3. More than a Movement Disorder: Addressing Mood and Coping

Parkinson’s is more than a movement disorder. While movement symptoms may be a prominent outward symptom of PD, mood and other emotional changes are also common ― and not just for the person with PD. Care partners may also experience these changes. Often, the best way to recognize these problems and figure out coping strategies may involve other health professionals. 

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4. Talking to Your Employer About PD: Disability Inclusion and Accommodation at Work

Many people with Parkinson’s want to continue to work. Sometimes all it takes is recognition of their condition by their employer and accommodations to compensate for disabilities. In fact, the Americans with Disabilities Act provides certain protections in the workplace for people with disabilities once they reveal their situation to their employers, who are then required to make reasonable accommodations to do the job. 

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5. Alleviating Voice Challenges with PD

Just as Parkinson’s affects movement, it can affect muscles of the face, mouth and throat, leading to problems with speech and swallowing. People with PD may experience voice problems during the course of their disease. The problems tend to increase as the disease progresses but may occur at any stage.

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6. Changing the Hospital Experience Through Aware in Care

People with Parkinson’s need their medications on time, every time. Getting them too soon or too late can cause problems. So when a person with PD enters the hospital, which happens 50 percent more often than their peers, the staff often needs to be educated on the importance of delivering medications at the right dose and at the right times ― times that may differ from the usual times that medications are dispensed.

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7. Encountering Gender Differences: Women and PD Initiative

Given the differences women may encounter when dealing with their Parkinson’s, the Parkinson’s Foundation is leading the first national effort to address gender disparities in Parkinson’s research and care as part of an overall Women and PD Initiative. The Foundation has developed new patient-centered recommendations to improve the health of women living with PD.

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If you like what you hear, be sure to subscribe, rate and review the series on Apple podcasts or wherever you get your podcasts. We want to hear what you think about our podcast! Share your feedback here.

Over the next three years the Parkinson’s Foundation will invest more than $50 million to Parkinson’s disease (PD) research and clinical care. At the heart of our research initiatives are scientists and researchers who have received Foundation awards to improve our understanding of Parkinson’s, which will ultimately lead us to a cure.

Many cellular components are involved in the development and progression of Parkinson’s disease. One component is the “energy factory” of the cell, called mitochondria. Certain genetic changes are known to impair the function of mitochondria.

Jannik Prasuhn, MD, of the Institute of Neurogenetics, University of Luebeck in Germany, has received a Clinical Research Award from the Parkinson’s Foundation to investigate the use of vitamin K2 in people with Parkinson’s whose disease is caused by genetic mutations that affect the mitochondria.

Vitamin K2 has been shown to be safe in previous studies of people with PD with osteoporosis. The vitamin is known to play a role in supplying cells with energy.

Dr. Prasuhn’s goal is to determine if vitamin K2 can increase energy levels and improve symptoms in people with mitochondrial-related Parkinson’s.

To achieve this goal, he will study 130 people: 26 people with PD who have mitochondrial mutations; 52 people with PD with idiopathic PD, and 52 people without Parkinson’s. They will be randomly assigned to receive vitamin K2 or a placebo for six months. All participants will undergo brain imaging before and after the study, and they will undergo medical exams five times throughout the study.

If this research suggests K2 could be helpful to people with Parkinson’s who have mitochondrial mutations, our hope is that larger, longer-term studies will be conducted that could ultimately lead to using K2 as a PD treatment.

Parkinson’s Foundation Clinical Research Awards help facilitate the development of clinician scientists, ensuring that promising early career scientists stay in the PD research to help us solve, treat and end this disease. These scientists are vital, as they apply research to the real-world as well as applying real-world issues to research. 

What’s Next: Reporting Our Findings

Parkinson’s Foundation research awards fund Parkinson’s studies than can span up to three years. We report findings once the studies have concluded. Stay up to date with our latest research findings at Parkinson.org/Blog.

Medical marijuana, or cannabis, is one of the most popular topics among the Parkinson’s disease (PD) community ― for people with PD, health professionals and researchers, alike. Earlier this year, the Parkinson’s Foundation hosted its first-ever convening on marijuana and Parkinson’s. Among the 46 attendees, of which 17 gave presentations, there was a reoccurring theme: what are the biggest hurdles the PD community faces when it comes to medical marijuana?  

This is the first article in a two-part series. Read part two here.

Treating Parkinson’s Symptoms with Cannabis

There is not enough evidence yet to support that medical marijuana can help manage Parkinson’s symptoms, however there are studies on the topic. Unfortunately, they have mixed results. Generally, the studies have been small and some with no control groups. The effects of medical marijuana are not completely understood, especially in the PD population. The bottom line is that more studies are needed, specifically larger and more rigorously conducted studies.

Based on some observational studies, cannabinoids (the active molecules in marijuana) may potentially benefit some non-motor symptoms of PD including pain, anxiety, sleep problems (insomnia, RBD, RLS), weight loss and nausea. Potential adverse effects include dizziness, blurring of vision, loss of balance, mood and behavioral changes, hallucinations, and impaired cognition and motivation. Better studies are necessary to confirm these benefit and adverse effects for people with PD.

Controlled clinical trials of cannabinoids (where some people receive the drug and some do not) have  reported mixed results for treating motor symptoms and levodopa-induced dyskinesia as well as improving quality of life.

While stories and videos exist showing that marijuana can treat PD symptoms, the challenge is showing that cannabis is better and safer than treatments that are currently available. A recent survey shows that the health community does not have a consensus on using cannabis as a treatment. This reflects lack of data, knowledge and training on the subject.

Future studies about medical marijuana and Parkinson’s should follow the highest standards of clinical trials to focus on:

• Delivery type: do specific strains, soft gels, tinctures (alcohol-based cannabis extract), e-liquid (vapor), topicals, infused food, flower products, inhalers and patches treat symptoms differently and have different side effect profiles?
• Dosage: what is the minimum dosage to guarantee effectiveness, what is the maximum dose tolerated and what dose will have a sustained benefit? Furthermore, how does this differ by strain and formulation?
• Effect on motor vs non-motor symptoms: which symptoms can improve, worsen or stay the same with cannabis use?
• Interaction with PD medications: how does cannabis interact with medications taken for PD symptoms?
• Key component: What components of cannabis/marijuana provide the best response in PD with the least risk of side effects?  What is the optimal CBD (Cannabidiol) to THC ratio?
• PD-specific side effects: are people with PD uniquely susceptible to certain side effects that are not seen in the general population?
• Population: studies that involve participants in difference stages of the disease.

Lastly, there needs to be a widespread physician education on using cannabis as a treatment ― almost all physicians surveyed agreed that medical school curriculums should include education on cannabis.

→ Danny Bega, MD, MSCI, from Northwestern University Feinberg School of Medicine; Joseph Jankovic, MD, from Baylor College of Medicine; and Karl Kieburtz, MD, MPH, from the University of Rochester, spoke about this topic at the marijuana convening.

Potential Drug Interactions

One surprising fact shared at the meeting is that cannabis-based products have the potential to interact with other medications. Given that people with Parkinson’s may be on multiple medications for other conditions, it is important to be aware of these interactions to avoid complications.

Epidiolex® is the first FDA-approved cannabinoid prescription drug. It is an oral solution of cannabidiol most commonly used to treat rare forms of epilepsy. It has been shown to have interactions with many anti-seizure medications, some antibiotics and medications for lowering cholesterol, pain, anxiety, depression and blood pressure. In some cases, Epidiolex can make these medications more or less potent. In other cases, these medications can make Epidiolex more or less potent. Because Epidiolex largely contains cannabidiol, there is the possibility that other cannabis-based products may also interact with medications in a similar way.

Delta-9-tetrahydrocannibinol (THC) is the primary psychoactive component of marijuana (the part that gives a “high”). It can take a long time to take effect and cannot be easily measured for a therapeutic or medicinal dose. THC can also interact with certain medications such as valproic acid (for bipolar disorder, seizures, and migraines) and can result in increased psychoactive effects of marijuana.

Medical marijuana can be taken in an edible form. Care should be taken with this form, as it takes longer to feel an effect and lasts longer (4-8 hours as opposed to 2-3 hours for smoking or vaporizing). Often, because the effects are slow, people increase their dose, eating more, which can be dangerous. Edibles may also have more toxicity than smoked marijuana, because they are broken down by the liver into more toxic chemicals.

→ Jacqueline Bainbridge, PharmD, FCCP, MSCS, from the University of Colorado, spoke about this topic at the marijuana convening.

The medical marijuana convening brought together a diverse group of experts from academia, clinics, industry, government and the Parkinson's community to establish a consensus on medical marijuana use in PD. The Parkinson’s Foundation will publish its findings on the convening in summer 2020. 

Learn more about Parkinson’s and marijuana at Parkinson.org/Marijuana.

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.

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

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.

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 problems, depression 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.

• Over the Counter & Complementary Therapies
• Diet & Nutrition
• The Latest in Nutrition and Parkinson’s Disease

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.

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.

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.

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.

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.

“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.

“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.’”

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.

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.

8. Seek out support services. Care partners need someone to talk with and rely on for support and regular breaks. 
9. 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.
10. 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).

• Book: Caring and Coping
• Caregiver articles: Dealing with Dementia, Caregiver Stress, Your Health Needs

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.

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).

• Stages of Parkinson’s
• Meet the Researcher: Protein May Predict Dementia Progression in Parkinson’s
• 5 Things You Should Know About the Link Between Parkinson’s and Dementia