North Carolina is home to the University of North Carolina (UNC) at Chapel Hill School of Medicine – one of 45 Parkinson’s Foundation Centers of Excellence. While their world-class Parkinson’s disease (PD) care is centrally located, UNC is still three to four hours away from most rural towns in the state.

Around the time that Nina Browner, MD, UNC associate professor of neurology, noticed how many people were trekking hundreds of miles from the mountains and the coast for their Center of Excellence appointments, she also realized that she couldn’t refer patients to local specialists because so few were trained in PD care. She felt compelled to do something about both.

“We’re in this big, rural state and people with Parkinson’s don’t know where they can turn in their own hometowns,” said Jessica Shurer, MSW, LCSW, UNC center coordinator. “UNC began to figure out a way to help them feel supported across the state in their own community and have access to high-quality care to support their well-being while on their Parkinson’s journey.”

When the Parkinson’s Foundation hosted its healthcare professionals training program called Allied Team Training for Parkinson’s (ATTP) in North Carolina in 2011, the concept of expanding PD-specific knowledge about therapies and stressing collaboration within the health care team formed into more of a reality for Dr. Browner and her team.

“ATTP can’t come to North Carolina every year, so we created our own mini version of the training program called the Colloquium on Interdisciplinary Care for Parkinson’s: Building Your Team, Enhancing Your Care,” Jessica said. 

About once a year, with the help of Parkinson’s Foundation community grants, the center invites physical, occupational and speech therapists to different cities across the state for a full day of training. Dr. Browner, Jessica and two therapists from each discipline host the training.

The day begins with an overview of Parkinson’s disease and the importance of interdisciplinary care when it comes to treatment. Participants then hear from people living with PD, who share their experiences and tips around care with the allied health clinicians. Then, they breakout according to their disciplines to: review assessments and testing, PD symptoms, tailoring a treatment plan, when to refer to other specialists and additional training opportunities for their area of practice. At the end of the day, the group comes back together and discusses how to treat a specific Parkinson’s case as a team.

“We stress that because Parkinson’s is a complex, chronic and progressive disease, it takes a health care team that understands Parkinson’s well in order to support the individualized needs of people with Parkinson’s over time,” Jessica said.

From Training to Referral Network

After completing the center’s course, participants can provide a higher standard of PD care and become a resource within their PD community. They are, in return, more aware of the unique needs of people with PD, treatment options and how to build an interdisciplinary team. They also become more involved in their local PD communities ― some have even started their own PD exercise programs while many get involved with the PD support groups.

UNC wanted to create Parkinson’s “hubs” all over the state that help clinicians and people with PD find PD-specialized care in their area. Thus, they launched ParkNC.org. The center-created website lists PD-trained doctors, rehabilitation and PD-certified specialists and therapists throughout the state along with clinicians who attended the UNC Colloquiums.

“I now have a network of providers in and around my community for patient needs outside of my scope of practice,” said a physical therapist and colloquium participant.

Where They’ve Been and Where They’re Going

UNC has hosted its colloquium three times. Asheville, Raleigh and Fayetteville were all strategically chosen for their high demand for more PD specialists, aging populations or geographic convenience. Next, the center plans to take the program to the coast in Greenville with the hopes of reaching clinicians throughout the eastern portion of the state. 

“I love seeing how excited the therapists are after the program and to see what they do next after returning to their cities. I’ve seen a tremendous amount of commitment to localizing Parkinson’s care, growing our PD network and working more closely with the Parkinson’s population.”

-  Jessica

After attending the colloquium, attendees are inspired to apply what they learn and get more connected to their PD community. Many participants go on to: 

• Seek additional PD training through the Parkinson’s Foundation’s ATTP program, LSVT and PWR
• Attend Moving Day NC Triangle or Moving Day Winston-Salem.
• Partner with nearby neurologists or allied health clinicians from other disciplines.
• Create new or build upon local PD support groups and/or exercise programs.
• Order Parkinson’s Foundation educational books and introduce them to patients.
• Stay in touch with the center for more training opportunities or to collaborate on treating a patient.

“A number of participants who completed the colloquiums have gone on to apply for and receive their own Parkinson’s Foundation community grants to send their team to ATTP or to start local wellness programs,” Jessica said.

The Future of UNC Care

While UNC will continue to host its Colloquium on Interdisciplinary Care for Parkinson’s, the center also aims to one day host a similar training on atypical Parkinsonism disorders for PD-trained clinicians. The center has seen an increasing number of people with other neurodegenerative disorders and wants to create a care system to better support their unique needs. UNC also hopes to further engage neurologists in interdisciplinary rehabilitation care in their communities.

The University of North Carolina (UNC) at Chapel Hill School of Medicine is located in Chapel Hill, NC. Learn more about the nearest Parkinson’s Foundation Center of Excellence at Parkinson.org/search.

Many people with Parkinson’s disease (PD) struggle with gastrointestinal issues. More specifically, the movements of the digestive system (known as gastrointestinal motility).

Evidence from recent studies has strongly suggested a link between the gastrointestinal system and Parkinson’s. An important next step for the field is to examine potential gastrointestinal treatments. In this month’s What’s Hot we will examine a recent randomized study of a medication that assists with moving things along in the stomach and intestines (known as a promotility drug) administered to people with Parkinson’s.

First, let’s review recent Parkinson’s-related gastrointestinal studies. Pathological studies by Braak and colleagues raised the idea that pre-motor Parkinson’s may start in the intestines. Recently, several researchers observed alpha synuclein containing Lewy bodies in the gut of people with Parkinson’s.

Currently, the only Food and Drug Administration (FDA) approved drug for gastric motility issues is metoclopramide (Reglan). Metoclopramide blocks dopamine and unfortunately makes Parkinson’s symptoms worse. We tell Parkinson’s patients to avoid metoclopramide. Another alternative is domperidone (Motilium). However, domperidone is not FDA approved or available in the U.S. It blocks dopamine, but does not enter the brain and is considered safe for people with Parkinson’s. Domperidone is available in most countries.

Another researcher, Marrinan and colleagues, recently published a randomized double-blind placebo controlled trial (this type of trial is known as the “gold standard” of clinical research) of a new gastric promotility medication called camicinal (GSK962040). Camicinal works in the gut as a motilin agonist (a drug that attaches to the same receptor as a natural chemical and causes the same effect).

Motilin is a hormone that stimulates the intestines. It is produced from cells in the small intestine. Motilin drugs stimulate the motilin receptor and lead to release of the hormone.

Researchers recently hypothesized that the new medication camicinal could improve delayed stomach emptying and help the body absorb PD medications. Thirty-eight people with Parkinson’s enrolled in the study. A randomized group received 50 mg of camicinal each day, while others received a placebo. The study was conducted over seven to nine days. The study found that medication “off” time was improved by more than two hours in the camicinal group that also experienced faster absorption. When compared to the placebo group, the camicinal group also saw an improvement according to the MDS-UPDRS (a scale used to measure the multiple aspects of PD).

Though this study was small and of short duration, its results highlight the potential for a new approach to gastrointestinal issues common in Parkinson’s. Camicinal has recently completed a trial for diabetic gastroparesis (ClinicalTrials.gov) and the results should help inform the research for people with Parkinson’s who have similar issues.

Other gastrointestinal therapies that people with Parkinson’s should keep an eye on include the 5-HT₄ receptor agonists (e.g. velusetrag) and ghrelin agonists (e.g. relamorelin). Please keep in mind that camicinal is not FDA approved. However, we should remain hopeful that a larger and more in-depth study of camicinal (and similar compounds) could potentially bring great benefit to the Parkinson’s community.

Selected Reference:

Marrinan SL, Otiker T, Vasist LS, Gibson RA, Sarai BK, Barton ME, Richards DB, Hellström PM, Nyholm D, Dukes GE, Burn DJ. A randomized, double-blind, placebo-controlled trial of camicinal in Parkinson's disease. Mov Disord. 2017 Dec 26. doi: 10.1002/mds.27259. [Epub ahead of print] PubMed PMID: 29278279.

Barboza JL, Okun MS, Moshiree B. The treatment of gastroparesis, constipation and small intestinal bacterial overgrowth syndrome in patients with Parkinson's disease. Expert Opin Pharmacother. 2015;16(16):2449-64. doi: 10.1517/14656566.2015.1086747. Epub 2015 Sep 16. Review. PubMed PMID: 26374094.

You can find out more about our National Medical Director Dr. Michael S. Okun by visiting the Center of Excellence University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life.

Since 2011, the Parkinson’s Foundation has worked with the Parkinson’s community to address Medicare challenges related to services such as physical therapy, occupational therapy and speech-language therapy. In 2014, we advocated to remove the Improvement Standard, meaning that people with Parkinson’s could no longer be denied coverage for therapy solely for lack of improvement. Now, the Parkinson’s community can celebrate the next milestone in access to care for Medicare recipients.

In the early morning hours of Friday, February 9, Congress passed a spending bill to fund the government through March 23, 2018. In the legislation, Congress indicates it would like to increase the National Institutes of Health (NIH) budget by $2 billion over the next two years (though further legislative action is needed before the NIH receives these funds). On top of this provision to advance investments in medical research, the spending bill also includes several measures to expand access to health care services.

Elimination of the Cap on Medicare Therapy Services. Of particular note to the Parkinson's disease (PD) community is the removal of the Medicare therapy cap, which limited the amount of physical, occupational and speech therapy a beneficiary could receive. Previously, Congress created an exceptions process that allowed individuals to access therapy above the cap if the services were deemed medically necessary, but this process needed to be renewed by lawmakers every few years, creating uncertainty and the potential for coverage denials. The new spending bill makes this exceptions process permanent, meaning people on Medicare can no longer be denied therapy if they need it to manage their health conditions.

"Exercise and movement are the keys to sustaining quality of life for people with Parkinson's," said Marilyn D. Phillips, PT, Parkinson's caregiver to her husband with Parkinson's and Parkinson's Foundation Research Advocate. "Ending the therapy cap will have a major impact on the PD community, allowing much-needed physical therapy, occupational therapy and speech therapy services be rendered with less fear of losing access to care."

The Parkinson's community advocated for many years to eliminate this cap and increase access to these important services. Thank you to every member of our community who took action on this critical issue; the new law represents an important advocacy achievement for people with PD.

Closure of the Medicare Part D "Donut Hole." Once beneficiaries and their Medicare drug plan have spent a certain amount of money (set annually by Medicare) for covered medications, beneficiaries are responsible for a higher portion of their out-of-pocket drug costs, up to a certain point. This coverage gap is called the Medicare "donut hole." Previous law said the donut hole must be eliminated in 2020; the new spending bill moves this date to 2019.

Expansion of Telemedicine under Medicare. Several measures in the new spending legislation boost access to telemedicine, including one that expands traditional Medicare coverage for these services. Another provision will increase telemedicine coverage for Medicare Advantage enrollees with chronic health conditions, including Parkinson's.

Repeal of Automatic Cuts to Medicare. A provision within the Affordable Care Act would have triggered automatic cuts to Medicare if the program's spending reached a certain amount. An unelected board (referred to as the Independent Payment Advisory Board) would have been in charge of making these cuts, and the likely result would have been fewer providers accepting individuals on Medicare. The new spending bill repeals this provision, preventing arbitrary cuts to a program many individuals rely on for their health care needs.

Interested in advocating in support of PD research and care? Explore our resources to learn more.

If you have any questions about the benefits of physical, occupational and speech-language therapies, please contact the Parkinson’s Foundation’s toll-free Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org.

Some content from this article was contributed by The Michael J. Fox Foundation.

Parkinson’s disease (PD) specialists have long debated the potential value of Parkinson’s-specific physical therapy. All great medical debates are usually settled by two factors: time and data. In this month’s What’s Hot, we review a paper recently published in Lancet Neurology (Ypinga 2018) that provides insight and data for whether people with Parkinson’s should begin or continue specialized physiotherapy.

Ypinga and colleagues performed an observational study which analyzed data from a Dutch health insurance claims database. Only people with Parkinson’s who received physiotherapy were included. The researchers reviewed patients with three years of follow-up and divided the groups into those receiving specialized Parkinson’s physiotherapy or those receiving usual physiotherapy.

Performance and results were compared. Researchers were interested in Parkinson’s-related health issues, such as being admitted to a hospital because of a fracture, orthopedic injury or pneumonia.  

The study had 2,129 people with Parkinson’s in the specialized physiotherapy group and 2,252 people with Parkinson’s who received usual physiotherapy. Results showed that 17 percent of the specialized physiotherapy group had complications, compared to 21 percent in the regular physical therapy group. Interestingly, the specialized therapy group required fewer treatment sessions and had cheaper direct and total healthcare costs.

Should every person with Parkinson’s seek a Parkinson’s-specific specialized physical therapist?  Not so fast. This study was conducted in the Netherlands where NetPD has created an integrated network of well-trained and highly Parkinson’s disease educated physical therapists. The therapists within this Dutch network share a similar philosophy and access to a common educational curriculum. We cannot therefore generalize the findings to every specialized Parkinson’s physical therapist in the world.

We can however follow Ypinga and colleagues and carefully study the potential benefit for any proposed Parkinson’s-specific specialized physical therapy. Data and time will ultimately tell us what is or is not effective — and whether there is an associated cost savings. Though this study found no difference in mortality among the two groups, the data was convincing for those living in the Netherlands to seek a specialized physiotherapist.

References:

1.Ypinga JHL, de Vries NM, Boonen LHHM, Koolman X, Munneke M, Zwinderman AH, Bloem BR. Effectiveness and costs of specialised physiotherapy given via ParkinsonNet: a retrospective analysis of medical claims data. Lancet Neurol. 2017 Dec 12. pii: S1474-4422(17)30406-4. doi: 10.1016/S1474-4422(17)30406-4. [Epub ahead of print] PubMed PMID: 29246470.

2.Okun MS. Is Specialized Physiotherapy for Parkinson’s Disease Better? NEJM Journal Watch, 2018.

You can find out more about our National Medical Director Dr. Michael S. Okun by visiting the Center of Excellence University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life.

The recent forecasting estimates for Parkinson’s disease (PD) are staggering. If accurate, the numbers suggest an urgent need to wake up and recognize that we are on the cusp of an emerging pandemic (Okun, 2013).

An epidemic is a widespread occurrence of an infectious disease, usually in a community and typically during a particular timeframe. A pandemic is a disease that is prevalent over an entire country or worldwide. The increase in the global number of people living with Parkinson’s should therefore appropriately be termed a pandemic.

It is frightening to consider that in the world’s most populous nations, the number of people with Parkinson’s will double (Dorsey, 2018). These escalating statistics are fueled by a continuously aging population. Age is the unavoidable and undeniable risk factor underpinning the development of Parkinson’s. As life expectancy increases, so does the number of people living with the disease. In other words, if everyone lives to be 100, we will be dealing with more Parkinson’s diagnosis on the scale of a worldwide crisis (Okun, 2013).

Ray Dorsey, MD, and colleagues at the University of Rochester Medical Center, a Parkinson’s Foundation Center of Excellence, pointed out in the January issue of JAMA Neurology that neurological disorders are now the leading cause of disability worldwide. The fastest growing disorder is Parkinson’s disease.

Dr. Dorsey and his team showed that from 1990 to 2015, “the prevalence of, and thus disability and deaths owing to, PD more than doubled.” Dorsey and colleagues underscore that “the number of people with PD will double from 6.9 million in 2015 to 14.2 million in 2040 and that applying this same growth rate to the lower estimate by the Global Burden of Disease study (6.2 million in 2015) projects to a staggering 12.9 million affected by 2040.”

In their Parkinson’s study, Dr. Dorsey and his team wrote that the most pressing Parkinson’s topics include:

• Preventing onset
• Increasing access to care
• Increasing funding for research
• Decreasing the costs of new treatments

The bottom-line is that we need to unite our voices and to converge as a community right now.  We need a balanced approach that addresses the short-term needs as well as the long-term plan for this growing pandemic. It is time to realize that unlike an epidemic, the Parkinson’s pandemic is not going away.

References

Okun MS. Parkinson’s Treatment: 10 Secrets to a Happier Life. Createspace, Amazon, 2013.

Dorsey ER, Bloem BR. The Parkinson Pandemic-A Call to Action. JAMA Neurol.

2018 Jan 1;75(1):9-10. doi: 10.1001/jamaneurol.2017.3299. PubMed PMID: 29131880.

You can find out more about our National Medical Advisor Dr. Michael S. Okun by visiting the Center of Excellence University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life.

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.

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.

In this blog, Angie Hott discusses her work as a Parkinson’s advocate and her participation in the upcoming 2018 Parkinson’s Policy Forum, co-sponsored this year by the Parkinson’s Foundation and The Michael J. Fox Foundation. The event will take place March 19 to 21 in Washington, D.C. You can view a live stream of the Forum’s educational panels on March 19 and 20 by visiting the Parkinson's Foundation's Facebook page.

Forum attendees will conduct a full day of meetings on Capitol Hill on Wednesday, March 21. At the same time, Parkinson’s advocates across the country will take part in Parkinson’s Advocacy Day. Be sure to check your email and visit our Facebook page on March 21 for instructions on how to easily email your lawmakers and make your voice heard.

The 2018 Parkinson’s Policy Forum is just around the corner, and advocates from across the country will travel to Washington, D.C. to meet with their members of Congress and educate them on the ways public policy impacts Parkinson’s disease (PD) research and care.

Two of those advocates are Angie Hott and her husband Dan.

Diagnosed in 2008 when he was 50, Dan Hott is an Air Force veteran who, with Angie, has four children — Caity (28), Violet (18), Isaac (14) and Levi (13) — and lives in Berkeley Springs, West Virginia. For the Hotts, advocacy and innovation have become cornerstones of their family life.

“When one person in the family has Parkinson’s disease we all have Parkinson’s disease, in a sense,” said Angie. “We have to use our voices for those who need us, and for the greater purpose of finding a cure,” she added.

In Angie’s public school STEAM (science, technology, engineering, the arts and mathematics) and character education work, she talks about Parkinson’s disease and encourages the kids to pursue a career in science or medicine. In fact, earlier this year, when she was teaching that it is positive to be curious and learn new things, she challenged students to “create something new that will help others.” A group of 8-year-old students she was working with used their engineering know-how and a big box of Legos to devise ways Dan could be more mobile. Science and medicine is a big interest at home, too, as the Hotts’ daughter Violet will attend Columbia University in the fall to study neuroscience.

“We will never be able to financially offer much, but we sure can encourage the younger generation to care and to pursue work to better understand the brain and find a cure for PD,” said Angie.

At this year’s Parkinson’s Policy Forum, Dan and Angie Hott look forward to meeting other advocates, sharing their story, and encouraging their members of Congress to support policies that further research funding and increase access to care for people living with Parkinson’s.

“Last year was our first Forum and I’m really looking forward to this year — I think I’ll be less nervous and better equipped to talk about our family and what Parkinson’s means to us,” she added.

Angie’s advocacy efforts aren’t limited to the Forum in Washington, D.C. She and her extended family and friends regularly reach out to their senators and representative on issues that matter to the PD community. 

The Hotts also pursue state and local public policy work. In February, Angie wrote an email encouraging West Virginia Governor Jim Justice to declare April 2018 Parkinson’s Awareness Month, and she was successful in her efforts. Governor Justice will issue the proclamation, which will be another opportunity in April for the Hotts to raise awareness about PD and why our voices matter.

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. 

A 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.

A 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.

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

Metabolic Syndrome (MetS) is a group of conditions that occur together that result in insulin resistance and increase the risk of heart disease, stroke and diabetes. According to a new study, MetS may be associated with Parkinson’s disease (PD).

While MetS can be prevented, controlled, treated and even reversed. It is not always easy to treat, since it is a cluster of five interrelated risk factors:

1. high blood pressure
2. high blood sugar (fasting glucose)
3. high levels of triglycerides (a type of fat in your blood)
4. low levels of HDL (the “good” cholesterol)
5. a large waist circumference (over 40 inches for men and over 35 inches for women)

MetS is associated with developing a number of diseases, including heart disease, stroke, and type-2 diabetes. It is also associated with an increased all-cause mortality risk (meaning, dying from any cause). Additionally, there’s mounting evidence suggesting that oxidative stress is a major component of MetS-associated diseases – and Parkinson’s disease also has been shown to have a strong oxidative stress component. Thus, there may be shared disease pathways that could be targeted for future treatments and interventions.

A recently published study in the journal, PLOS Medicine, titled, "Metabolic syndrome and risk of Parkinson disease: A nationwide cohort study" (Nam et al., 2018), approached this important investigation in a big way. Spanning a 5-year period (2009 through 2012), the research scientists analyzed the health check-up data of nearly the entire South Korean population who met the study criteria, e.g., study individuals had to be 40 years of age or older and have no prior diagnosis of PD.

Ultimately, 8,215,180 men and 8,948,380 women (for a total of 17,163,560 people) were part of the study analyses. Demographics and lifestyle data were gathered through self-reporting questionnaires, including comorbidities (hypertension, diabetes mellitus, dyslipidemia, ischemic heart disease and stroke), as well as smoking status, alcohol consumption, income, age, gender, and of course, their specific test results for all 5 MetS risk factors. Of note, study participants were diagnosed as having MetS if they had 3 or more of the 5 risk factors. 

Results

• At baseline, 5,848,508 of the individuals (34.1% of the total study population) were diagnosed as having MetS.
• Upon follow-up, 44,205 individuals were diagnosed with PD.
• The rate of PD incidence was 2.2 times higher in those with MetS compared to those who didn’t have MetS.
• Overall, individuals who had MetS had a 24 percent higher risk of PD than those without MetS.
• Having even just one of the 5 MetS risk factors increased an individual’s PD risk; and, that PD risk increased with each additional risk factor.
  • Individuals with 3 MetS risk factors were at 31% higher risk of PD, compared to those without any risk factors.
  • Individuals with all 5 MetS risk factors were at 66% higher risk, compared to those without any risk factors.
• Individuals 65 years and older were all shown to be at increased risk for PD, with the greatest PD risk for those with MetS; this association was particularly prominent in women.
• Even after adjusting for potential confounders (age, sex, smoking, alcohol consumption, physical activity, income, body mass index, kidney function, and history of stroke), individuals with MetS had an increased risk of PD compared to those without MetS. 

What Does This Mean?

This study suggests that not only does having MetS risk factors increase your risk for PD, but also, the more risk factors you have, the more likely you are to develop PD. That being said, the jury is still out as to what actually causes MetS in the first place.

Many of the risk factors of metabolic syndrome are associated with insulin resistance (IR). More and more studies suggest that IR negatively impacts dopamine functioning in the brain. And PD symptoms – including tremors, stiffness, and slowness of movement – are caused by a lack of dopamine in the brain;  hence, why a drug that replenishes the brain's reduced supply of dopamine, i.e.,  levodopa, helps diminish those symptoms.

Perhaps the biggest take-away is three-fold:

1. Improving our understanding of the relationship between the components of MetS and PD could help us better understand the pathophysiology that links the two.
2. Adopting a healthier lifestyle (better food choices, more exercise and medications, if prescribed) is a well-documented path to halt, and even reverse MetS – which, according to this study, may also reduce your risk for developing PD.
3. Being able to identify people at increased risk for developing PD is vital information to have, as mounting an early intervention strategy as described above could potentially make a big difference. 

Learn More

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

• Parkinson’s Disease and Insulin Resistance
• Episode 21: What Other Conditions Are Related to Parkinson's
• The Latest in Nutrition and Parkinson’s Disease

In this week’s issue of Science Translational Medicine, Bryan Killinger, PhD, and colleagues examined the question, “Will removing my appendix impact my risk of later developing Parkinson’s disease (PD)?”

Interestingly, several recent studies have attempted to answer this question. With the emerging evidence supporting that a gut-brain connection and interaction may play a potential role in Parkinson’s, this subject is a timely one.

Dr. Killinger and his team examined two very large sets of data, totaling 1.6 million people. They further studied data from people who had their appendix removed via a surgical operation called an appendectomy. Those who underwent an appendectomy before the onset of PD had a reduced risk of Parkinson’s.

Interestingly, people who live in rural areas had an even lower Parkinson’s risk after undergoing an appendectomy. When researchers find a connection to rural areas, it increases the chances that environmental influences (e.g. pesticides) may have played a role. There have been many theories about how the gastrointestinal system may influence Parkinson’s risk and progression, however we still do not know how exactly they are connected.

In their study, Dr. Killinger and his team also examined small samples of human appendixes and found that the Parkinson’s protein (alpha-synuclein) was present. The researchers then used a special technique on the human appendix tissue to show how it could be pathological in the disease process. Dr. Killinger proposes the idea that the human appendix contains a bad form of alpha-synuclein and the contents of the appendix may potentially impact the risk of Parkinson’s.

However, several studies contradict these findings. They have collectively shown no change or only a slight change in PD risk after undergoing an appendectomy. In 2018, Palacios and his team found no association of appendectomy and Parkinson’s when studying two large groups of participants. In 2017 and 2016, researchers Yilmaz and Marras also reported no association. In 2016, Svensson actually reported an increased risk of Parkinson’s associated with appendectomy. Finally, Mendez, similar to the current study, reported a beneficial effect of appendectomy, but only observed this in older people with PD.

When it comes to the medical community, proving that something works is best achieved when multiple well-designed studies can replicate a finding. Based on what we currently know, alpha-synuclein can be found in the appendix, but we cannot recommend a surgical appendectomy to prevent or delay Parkinson’s disease in people who are more at-risk (like testing positive for a Parkinson’s gene) and not yet diagnosed.

So where does this leave people with Parkinson’s? The bottom line is that if you are currently living with Parkinson’s there is no evidence to suggest that removal of the appendix will provide any benefit.

Selected References

Killinger BA, Madaj Z, Sikora JW, Rey N, Haas AJ, Vepa Y, Lindqvist D, Chen H, Thomas PM, Brundin P, Brundin L, Labrie V. The vermiform appendix impacts the risk of developing Parkinson's disease. Sci Transl Med. 2018 Oct 31;10(465). pii: eaar5280. doi: 10.1126/scitranslmed.aar5280. PubMed PMID: 30381408.

Mendes A, Gonçalves A, Vila-Chã N, Moreira I, Fernandes J, Damásio J, Teixeira-Pinto A, Taipa R, Lima AB, Cavaco S. Appendectomy may delay Parkinson's disease Onset. Mov Disord. 2015 Sep;30(10):1404-7. doi: 10.1002/mds.26311. Epub 2015 Jul 30. PubMed PMID: 26228745.

Marras C, Lang AE, Austin PC, Lau C, Urbach DR. Appendectomy in mid and later life and risk of Parkinson's disease: A population-based study. Mov Disord. 2016 Aug;31(8):1243-7. doi: 10.1002/mds.26670. Epub 2016 May 31. PubMed PMID: 27241338.

Svensson E, Horváth-Puhó E, Stokholm MG, Sørensen HT, Henderson VW, Borghammer P. Appendectomy and risk of Parkinson's disease: A nationwide cohort study with more than 10 years of follow-up. Mov Disord. 2016 Dec;31(12):1918-1922. doi: 10.1002/mds.26761. Epub 2016 Sep 13. PubMed PMID: 27621223.

Yilmaz R, Bayram E, Ulukan Ç, Altınok MK, Akbostancı MC. Appendectomy History is not Related to Parkinson's Disease. J Parkinsons Dis. 2017;7(2):347-352. doi: 10.3233/JPD-171071. PubMed PMID: 28387683.

Palacios N, Hughes KC, Cereda E, Schwarzschild MA, Ascherio A. Appendectomy and risk of Parkinson's disease in two large prospective cohorts of men and women. Mov Disord. 2018 Sep;33(9):1492-1496. doi: 10.1002/mds.109. Epub 2018 Sep 14. PubMed PMID: 30218460.

You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.