Raise Awareness

Center of Excellence Series: Rush University Medical Center Provides Critically Needed Parkinson’s Mental Health Program

Taking blood pressure

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

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

RUSH

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

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

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

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

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

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

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

-Dr. Goldman

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

A Day at the Integrated Cognitive Behavioral Movement Disorder Clinic

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

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

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

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

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

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

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

Raise Awareness

Hallucinations and Delusions in Parkinson's Disease

Lady holding her head

It might be surprising to learn that 20-40% of people with Parkinson’s disease (PD) will experience visual hallucinations. While typically not a symptom of PD itself, they can develop due to a change in PD medication or as a symptom of an unrelated infection or illness. Knowing the signs of hallucinations and how to manage them is important.   

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

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

Hallucinations 101

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

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

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

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

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

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

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

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

I'm experiencing hallucinations: what now?

Research has shown that for many people with PD who have them, hallucinations begin after a change in medication, more specifically, an increase in levodopa (also known as Sinemet). Additional factors make a person more likely to experience hallucinations when medications are changed, such as other cognitive problems or memory issues, depression and sleep problems.

Dementia is a term used to describe cognitive changes — whether in memory, judgment or attention — that interfere with daily life. It also increases the risk of hallucinations and delusions when PD medications are changed.

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

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

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

Treatment Options

There are ways to manage hallucinations or delusions:

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

Tips for Caregivers

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

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

Caring for someone who experiences hallucinations and delusions is a difficult job. Learn more in our book Psychosis: A Mind Guide to Parkinson’s Disease.

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

Tips for Daily Living

Listen to Our Top 10 Podcast Episodes Now

Man on a walk looking at his phone with headphones on

Our podcast, Substantial Matters: Life and Science of Parkinson’s, features more than 35 episodes about the latest PD treatments, research and therapies that help make life better for people with Parkinson’s. Catch up with our 10 most popular episodes:

1. How to Manage Parkinson’s “Off” Time

Parkinson’s symptoms can get better and worse throughout the day. These so-called “on-off” fluctuations (or motor fluctuations) and dyskinesias can be troubling, but a movement disorder specialist can help. Find out what causes these changes and how your doctor can help you manage them.
Listen Now

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

Regular exercise is essential for people with Parkinson's. This podcast describes what is known about exercise and PD and what is being researched, as well as tips on overcoming exercise barriers.
Listen Now

3. Early Warning Signs of Parkinson’s

In the debut episode of Substantial Matters, Parkinson’s Foundation national medical director Michael S. Okun, MD, talks about the early signs of Parkinson's and gives advice on what to do following a diagnosis.
Listen Now

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

Nutrition plays an integral role when it comes to good Parkinson's care. Find out which PD symptoms are impacted by diet, how to optimize the effects of medication and how to get adequate nutrition.
Listen Now

5. The Keys to Driving with Parkinson’s

Age, along with Parkinson’s, can affect critical driving skills. However, giving up the keys is an emotionally charged issue. This podcast examines DriveWise, a program that involves a multidisciplinary team of health professionals who assess the skills and mental abilities needed to drive safely.
Listen Now

6. New Levodopa Delivery Methods for Parkinson’s

While levodopa is the most effective treatment for Parkinson’s, some people experience “off” periods or dyskinesias. Learn about the new delivery methods that promise to help. Learn about levodopa infusions, skin patches and long-release pills that are in development.
Listen Now

7. Genetics as a Guide to Neuroprotection in Parkinson’s Disease

For decades medication has been used to control PD symptoms, but researchers have yet to find a way to protect neurons (brain cells) to slow down or stop disease progression. Learn how modern genetics can be a guide to developing new drugs.
Listen Now

8. Young-Onset Parkinson’s 101

A diagnosis of young-onset Parkinson’s disease brings special challenges. For instance, deciding when to disclose the diagnosis at work and to children can be difficult while you are still coping with the news. Learn techniques for dealing with these challenges.
Listen Now

9. Medical Marijuana: Going Green for PD?

More people are exploring medical marijuana, also called cannabis, to help treat various chronic health conditions, including Parkinson’s. However, much is still unknown about its use for medical purposes. Learn the latest developments in this podcast.
Listen Now

10. Autonomic Problems

To avoid embarrassment, people with PD often avoid telling their physicians about PD-related urinary symptoms, sleep disturbances, sexual and intimacy matters and many other issues. This podcast focuses on these topics and how some can have easy solutions.
Listen Now

 

Subscribe so you don’t miss an episode

Science News

Inject, Cool Tech and Keto Effect

Science News Blog header

All Science News articles summarize a research study and are not an official opinion, endorsement or position of the Parkinson’s Foundation.

Every year, the Movement Disorder Society (MDS) hosts an international congress where the top minds in the field share ideas and the latest in research. The 2018 congress took place this October in Hong Kong, China, where we found three particularly promising new Parkinson’s disease (PD) studies that not only provide hope and direction for the future, but also a new avenue you may want to explore with your healthcare provider, right now.

Inject

People tend to think of Parkinson’s as an overall body movement disorder. However, it’s not uncommon for PD to negatively impact the facial muscles, mouth, throat and even vocal cords — which can make it difficult to chew, eat, swallow, and speak with audible volume. A medical procedure where a collagen gel is injected directly into the vocal chords may help. Called vocal fold augmentation, the gel filler (specifically, carboxymethylcellulose) provides a thicker, more resilient cushion for the vocal cords. This is not a new procedure being tested, it’s a treatment that has been used for many years to treat vocal cord atrophy, just not in people with PD.

Inspired by a patient who told his otolaryngologist that he wished something could just be injected in his throat, a clinical trial began using the injected gel in 29 people with PD. Researchers measured results in: overall severity, roughness, breathiness, strain, pitch and loudness. They also measured glottis closure timing (essential in airway protection, so food won’t go down the wrong pipe), and supraglottic constrictions, which involves throat constriction above the vocal chords.

In the one-month follow-up, statistically significant improvements were achieved in overall severity, breathiness, loudness and glottic closure time. People’s eating and swallowing ability remained the same. According to the study authors, the positive effects of the gel will wear off in about three months; thereby, providing proof that the injection worked. If that is indeed the case, their next step involves injecting a calcium hydroxyapatite paste, which the researchers suggest could last up to 18 months – at which time, patients may receive another injection.

Learn More

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

Cool Tech

Innovations in personal, portable technology to improve Parkinson’s care, health outcomes and overall management for diseases such as diabetes, epilepsy and asthma, have become a major focus of research. And now, researchers may have identified a technology to help people with certain aspects of PD. Called a Parkinson's Kinetigraph (PKG), this wearable device contains an accelerometer that measures and records information on motor patterns, impulsiveness, periods of sleep and medication response. In a recent study involving 70 people with PD, doctors were asked to provide what their management plan for each person would be, before and after receiving the PKG results.

The clinical findings and the PKG were essentially the same for 80% of participants. However, utilizing the additional PKG data resulted in 24 of the PD participants (34%) receiving changes in their clinical management, including altering their medication dosing, as well as recommending advanced therapies such as apomorphine or deep brain stimulation. For two participants, based on their poor response to therapy recorded by the PKG, their Parkinson's diagnosis was questioned. As to whether or not these PKG-inspired clinical management changes will lead to longer-term improvements in people’s health outcomes and/or quality of life has yet to be determined. However, if it does, this technology could be life-changing.

Learn More

Learn more about wearable technology by visiting Assistive Technology & Devices.

Keto Effect

We all know that following a healthy diet is essential for overall health. But which diet is best for people with Parkinson’s? A recent pilot study sought to compare a low fat, high carbohydrate diet (which is thought to increase dopamine levels in the brain), with the high fat, low carbohydrate ketogenic diet (or ‘keto’ as it’s usually referred) — which may help with diminished mitochondrial energy metabolism. A total of 47 study participants with PD were randomly assigned to follow one of the two diets over an eight-week period. The total calories were identical, as was the total protein content — because protein interferes with levodopa absorption.

Overall, following both diets resulted in improvements in movement and non-movement symptoms. However, the group following the keto diet experienced a greater improvement in non-motor symptoms, as compared to the low fat/high carb diet (41% vs 11%, respectively), including experiencing less urinary problems, pain, fatigue, daytime sleepiness and cognitive impairment. This is particularly significant because non-motor symptoms are less responsive to the medication levodopa. In terms of adverse effects, the most common for those following the low fat/high carb diet was being hungry; and for the keto diet, some experienced a transient increase in PD tremor/rigidity. Both groups also lost weight. Bear in mind that this trial was only 2-months long and there was also no control, or normal diet for comparison. Nonetheless, these study findings suggesting the keto diet may be useful for non-motor symptoms are encouraging.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more by reading Diet & Nutrition or listening to our podcast episode: The Importance of Good Nutrition for People with Parkinson’s.

Have specific questions about nutrition and diet? Call our free Helpline at 1-800-4PD-INFO (473-4636).

Raise Awareness

How to Spot the Early Signs of Parkinson's

Lady got dizzy and fell on her living room floor and holding her forehead

It can be hard to tell if you or a loved one has Parkinson's disease (PD).

The next time you visit family, we want to make sure you can spot the early signs of Parkinson's. With early detection, treatment and expert care, many people live longer, productive lives with Parkinson’s.  In addition to tremors, there are other early signs you can observe.

Infographic with 10 early signs of Parkinson's disease: tremor, trouble walking, loss of smell, trouble sleeping, small handwriting, soft voice, constipation, masked face, stooped posture and dizziness

No single one of these signs means that you should worry, but if you have more than one sign you should consider making an appointment to talk to your doctor.

Visit Parkinson.org/10signs to learn more

Tips for Daily Living

DIY: Living Better with Parkinson's

couple hugging outside

Managing and living with Parkinson’s disease (PD) is a challenge. Every member of the Parkinson’s Foundation People with Parkinson's Advisory Council (PPAC) knows this first-hand and set out to help the PD community by launching a series of articles where people can share the ways they modify and use every-day items to help manage PD symptoms.

Do It Yourself (DIY): Living Better with Parkinson’s will regularly highlight the creative, PD-tailored, DIY ways people with Parkinson’s and care partners make daily tasks easier.

The views and opinions expressed in this blog, along with listed products, are those of the authors and are not endorsed or reflect the official policy or position of the Parkinson’s Foundation.

Below we list the tools people have created themselves or purchased to live better with PD:

If it is difficult to hold a pen or pencil, go to a home improvement store and buy foam pipe wrap (used to insulate pipes). The tube splits open and the pencil fits inside.

- Mary, PPAC member

If you need help falling asleep, try listening to a boring book or meditation app, like Calm. It offers daily sleep stories ― the best so far is “Once upon a GDPR,” where Peter Jefferson reads a law document for 34 minutes.

- Gretchen, PPAC member

My Fitbit is very helpful in monitoring my activity level and in reminding me to take my meds. I sometimes feel like I’ve walked for miles, but the Fitbit tells me I’ve barely moved all day. It is a good reality check.

- Andree, PPAC member

blue tape by a toilet

Getting into the right position to sit down safely on the toilet requires walking, turning, backing up and sitting down. We use blue tape to delineate the exact space my dad needs to stand in to sit down safely.

- Dana, PPAC member

Use voice to text apps (I use Dragon) to help with writing on the computer.

- Andree, PPAC member

Use the alarm on your cell phone to set your daily medication alarms.

- Richard

jogging with a jogging stroller

I use a jogging baby stroller with big wheels when I’m walking on the gravel roads by our home. I weighted it with a gym bag and it has really helped my walking. I can walk two miles using this stroller and I’m not so exhausted afterwards.

-Karen and Rob, PPAC member

For toe dystonia you can find toe separators in all shapes and materials. They help straighten and relax my toes. These separators aren’t made specifically for people with Parkinson’s, but are very helpful. In a pinch, I twist up a handkerchief and wind it between my toes.

- Gretchen, PPAC member

The U-Step 2 walker with a laser light that comes on with switch helps with freezing. It is pricey, but with Medicare it cost $70. It also has a metronome to help give rhythm for help with walking. It doesn’t handle steps or gravel well but has a seat with storage.

- Rob

For constipation, try the Squatty Potty. It really works! It elevates the feet when on the toilet, which straightens out the colon and makes it much easier to go. You can also multi-task at the same time and polish your toenails.

- Smitty

I found a cup with a storage area for pills inside. It is a handy way to take my medication on-the-go.

- Trudy

Get a handicapped placard for your car. I used to think I didn’t really need it. But I have found the less energy I have to expend at the beginning of running an errand the more I have in reserve at the end.

- Andree, PPAC member

Place a 1/2 foam roller flat on the bed. Lying on it releases the spine and makes it more flexible. It’s also good for colon therapy.

- Jean

My worst time of day is morning. I put blue masking tape on the floor to help me with my walking, especially those first steps in the morning.

- Eduardo

I use hot packs on my eyes in dry climates, which have really helped my dry eyes.

- Sandy

It was very hard to get my walking shoes on until I discovered sneakers that zipper in the back. They are much easier to get on and off, although the zipper can be tricky. I use Flyease by Nike.

- Orlando

To keep his muscles strong, my husband uses the eTrainer-ER Mini. It exercises your arms and legs and can be used from a chair.

- Susan

For more information and tips for daily living visit Parkinson.org/Blog or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Advancing Research

Tips from the Pros: Maintaining Cognitive Brain Health in Parkinson's Disease

brain

Maintaining cognitive brain health is a high priority for both people with Parkinson’s disease (PD) and family members. Though many living with Parkinson’s will not develop dementia, mild cognitive issues may emerge in 20 to 50 percent. As a result of this survey, a working group of experts led by Jennifer Goldman, MD, MS, at Rush University, a Parkinson’s Foundation Center of Excellence, was assembled to address this issue. In this month’s What’s Hot in PD? column, we share practical results from the working group that may be useful for both people with PD and their families.

There are potential pharmacological and non-pharmacological interventions that may be useful in addressing cognition (thinking and memory) in PD. The working group divided the recommendations for maintaining PD cognitive health into early and more advanced Parkinson’s.

Early Parkinson’s Disease

  • Exercise according to guidelines from American College of Sports Medicine and American Heart Association 
  • Stay active socially; for example, spend time with friends or join a support group.
  • Engage in cognitive training exercises.
  • Learn coping strategies; for example, work with an occupational therapist or neuropsychologist on techniques for paying attention, remembering things or doing everyday tasks.
  • Nutrition can affect cognition. Consider trying the Mediterranean diet.
  • Take your time when doing tasks.
  • Let your family and friends know if you are having trouble.

Seek help if feeling depressed or anxious 

Advanced Parkinson’s Disease

Follow the above recommendations, in addition to: 

  • Develop and follow a highly structured daily routine 
  • Consider the use of medication for cognitive impairment; common medications include cholinesterase inhibitors and memantine
  • Have an advanced directive in place (living will, treatments) 
  • For care partners: take care of your own health as well (see doctors as needed) 

For care partners: seek out support such as counseling 

Though more pharmacological treatments are needed, we advise people not to underestimate the value of implementing many of these techniques and considerations. You can have a happy life with PD but you need a winning strategy for brain health and cognition — and that strategy may not always include a pill.

Science News

Coffee and Parkinson's: Protection in the Making?

Science News Blog header

All Science News articles summarize a research study and are not an official opinion, endorsement or position of the Parkinson’s Foundation’s.

For years, drinking coffee has been associated with having a reduced risk of developing Parkinson's disease (PD). In fact, a 1968 study suggested that coffee drinkers were less like to get PD (Nefzger, Quadfasel, & Karl, 1968). Since then, multiple epidemiologic studies have confirmed the PD/coffee connection (Ascherio et al., 2003; Ascherio et al., 2004; Fujimaki et al., 2018). Researchers have mostly attributed the protective effect to the caffeine component (Lee et al., 2013).

However, coffee is more than a caffeine delivery system. Coffee has more than 1,000 different compounds, including organic acids, sugars, amino acids and fatty acids. One such fatty acid called Eicosanoyl-5-hydroxytryptamide (EHT) has been getting quite a bit of buzz in the PD research community; and, for good reason. A recently published study titled, “Synergistic neuroprotection by coffee components eicosanoyl-5-hydroxytryptamide and caffeine in models of Parkinson’s disease and DLB” (Yan et al., 2018), provides some compelling insights into the possible biochemical protective mechanisms of our cup of joe.

A recently published study in the journal, Neuropsychopharmacology, sought to determine if having ADHD and/or its treatment, increases the risk of having basal ganglia and cerebellar diseases. In this 20-year follow-up retrospective cohort study, a total of 190,586 patient records (31,796 with ADHD and 158,790 without ADHD) from Utah were examined. People with no prior PD diagnosis or symptoms, no basal ganglia/cerebellar disease and those with a history of substance abuse were excluded from participating in the study.

Here’s what the researchers did: over a six-month period, they treated groups of two different PD model mice with various combinations of caffeine and EHT (caffeine alone, EHT alone, or caffeine and EHT together) to study their effects on both brain and behavior. There was also a group of mice that received no treatment. Then they performed several behavioral tests to study their movement, as well as study their brains for signs of alpha-synuclein clumps (which result in Lewy bodies, the pathological hallmark of PD), neurodegeneration and inflammation. The study found that the untreated mice had significant amounts of clumped α-synuclein in their brains, increased inflammation and loss of neurons, as well as significant deficits on three different behavioral tests. In general, the mice treated with EHT or caffeine alone showed either no or minimal improvement in any of these measures. However, the mice treated with the combination of EHT and caffeine together showed significant improvements in all of these measures.

Results

  • More specifically, mice treated with both EHT and caffeine together:
  • Had less alpha-synuclein clumping in the brain
  • Maintained better neuron integrity and function
  • Had less brain inflammation
  • Displayed less movement symptoms

What Does This Mean?

In this study, a synergistic combination of EHT and caffeine was shown to slow down the progression of the neurodegeneration associated with PD in mice — which has potentially readily available therapeutic implications. In addition, previous research has demonstrated that caffeine enhances dopamine signaling in the brain (Volkow et al., 2015); and, it’s the death of dopamine-producing cells that results in movement symptoms of PD (and why dopamine replacement medication is the gold standard treating PD symptoms).

For years, coffee consumption has been suggested to play a protective role in developing PD. However, it was never clear what exactly in coffee had this effect. This study suggests that two compounds, caffeine and the fatty acid EHT, work together to protect against alpha- synuclein clumps and dopamine neuron loss in two different PD models of mice. Interestingly, these effects were seen even using very low doses of the compounds. If the results of this study can be replicated by other researchers, then identifying that delicate balance of safety and effectiveness for humans is likely an essential step that researchers will be investigating in the future.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the connection between dopamine, caffeine, Lewy bodies and alpha-synuclein and Parkinson’s in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).

Raise Awareness

An Illustrated Introduction to Your Brain

Brain scan

During Brain Awareness Week, taking place March 11 to 17, we join the global campaign to raise awareness about the progress and benefits of brain research, including research into the causes of Parkinson's disease (PD) and how to treat it.

Since Parkinson’s affects multiple parts of the brain, we wanted to provide you with an easy-to-understand introduction to the amazing things your brain does and how.

Infographic about brain awareness

Ready to exercise your brain?

Check out Tips for Daily Living: 12 Ways to Boost Your Brain Power.

Tips for Daily Living

Non-motor Symptoms: What’s New? Part 1

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 one of a two-part 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.

Early Parkinson’s Symptoms

Early signs of Parkinson’s can appear before a Parkinson’s diagnosis is ever made. Non-movement symptoms can begin decades before a diagnosis. Impaired sense of smell occurs in 70 to 90 percent of those living with PD, often precedes other PD symptoms. Licorice, coconut and banana are some smells people with PD have difficulty with, while scents like chocolate, strawberry and onion, are not impacted.

Another common early pre-movement symptom, constipation, can begin around age 40, sometimes preceding a PD diagnosis by 20 years. Erectile dysfunction, REM sleep behavior disorder, depression and anxiety are often also early non-motor PD symptoms. 

Vision Changes

About 14 percent of people with PD experience vision changes including tired eyes, blurred vision, intermittent double vision or difficulties reading and seeing in dim lighting. Optometrists who look closely may discover convergence insufficiency, impaired color perception, blinking irregularities or reduced contrast sensitivity (the capacity to pick out an object from its background). Playing video games may improve contrast sensitivity, but no PD-specific studies have been done. Fitting glasses with prisms can help PD-related double vision. Both blepharospasm (involuntary eye closure) or apraxia of lid opening (inability to open the eye) may benefit from botulinum toxin A (BOTOX®). At-home eye exercises called “pencil push-ups” may help with convergence insufficiency. Talk to your doctor or optometrist about how to perform these exercises, or to discuss vision treatments.

Pain

Pain related to PD is divided into five categories:

  1. Musculoskeletal: pain that affects the bones, muscles, ligaments, tendons and nerves. It can occur suddenly and be short-lived or long lasting and can occur in one or several areas. Someone with PD may describe this as aching or burning in their muscles or skeleton.
  2. Neuropathic/radicular: chronic pain condition where the body sends pain signals to the brain, not caused by an injury. This sharp pain comes from a nerve or nerve root.
  3. Dystonic: sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s. Can stem from rigidity and dystonia.
  4. Akathisia: causes the feeling of restlessness or inability to be still. An example of this outside of Parkinson’s is Restless Leg Syndrome.
  5. Central pain: neurological condition caused by a dysfunction that affects the central nervous system and is resistant to treatment. This pain is usually sharp and burning with no clear cause.

Though muscle relaxers are not usually effective, adjusting PD medications may help minimize “wearing off" episodes. Physical therapy or surgery can improve pinched nerve pain, while BOTOX® injections may improve dystonia.

Autonomic Dysfunctions

Non-motor problems include those with the autonomic nervous system, which controls bodily functions, such as heart rate, blood pressure, sweating, sexual function and both gastrointestinal and urinary function. These can be among the most serious problems for people with PD.

Oral Health Issues

Excess saliva: Experienced by up to 80 percent of people with Parkinson’s, it begins as nocturnal drooling and can progress to heavy saliva outpourings. Drooling isn’t caused by excess saliva; in PD it is due to decreased swallowing frequency and efficiency, as well as tendencies toward an open mouth and stooped posture. While surgery was used in treatment in the past, it is no longer advocated. Hard candy, medications, including sublingual atropine or glycopyrrolate, or BOTOX® injections have all been used in treatment. Discuss options with your doctor.

Dry mouth: Decreased saliva production in PD can cause dry mouth; medications can increase this dryness, raising the risks of cavities and periodontal disease. Artificial saliva products like Biotene®, which contains xylitol and glycerin, can help. Discuss treatments, including medications that increase saliva production, with your doctor or dentist.

Halitosis: Bad breath is common in PD, but rarely discussed. Many factors — dry mouth, inadequate brushing, gum disease, mouth bacteria and not drinking enough fluids — can contribute. Treatment includes adequate cleaning of teeth and mouth and alleviating dry mouth.

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 second article in this series now: Non-motor Symptoms: What’s New? Part 2.

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.

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