In addition to being a movement disorder specialist at the University of Pennsylvania Movement Disorder Center, a Parkinson’s Foundation Center of Excellence, Allison Willis, MD, is also one of the few researchers to conduct much-needed Parkinson’s disease (PD) research on one of the most vulnerable populations within the Parkinson’s community: women.

Vulnerable: underserved populations that are not accessing or cannot access healthcare services for their disease. This may be due to: a shortage of healthcare professionals and/or supplies, healthcare failures in their area, in addition to personal barriers, such as socio-economic status, cultural or linguistic differences.

“We know that people with Parkinson’s are physically, psychologically and socially vulnerable,” Dr. Willis said. What researchers, including Dr. Willis, are discovering is that women with Parkinson’s are uniquely vulnerable and do not receive the same advocacy or care as other vulnerable populations with Parkinson’s.

Dr. Willis conducts her research using a wide range of data, concentrating on the healthcare outcomes and differences in people with neurological diseases. One of her primary sources is the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest clinical study of PD that tracks over 12,000 people with Parkinson’s.

In general, women have an overall lower risk of being diagnosed with Parkinson’s than men. This resilience to the disease might be because of a natural protection estrogen provides in the brain or by another hormone not yet known. However, the total number of women living with PD is not far behind that of men, because, on average, women live longer than men.

Studies show that women who are diagnosed with Parkinson’s face more struggles throughout the course of their disease than their male counterparts. As Dr. Willis phrases it, the “female paradox” relates to Parkinson’s in that women might be more protected biologically, but usually have a tougher PD journey. Women with PD are more likely to:

• have side effects from their Parkinson’s medications.
• not receive social support.
• have overwhelmed care partners, requiring outside, paid caregiving.

This paradox receives little attention in PD research, but Dr. Willis works every day to address it. “Parkinson’s research studies are overwhelmingly male, and we generally think that’s because men have a higher risk,” Dr. Willis said. “We really need to think carefully about why we have so few women involved in research when there are actually a lot of women who are being diagnosed with Parkinson’s, they’re just not being directed to our centers for research.”

Many scientists do not actually treat the disease they study firsthand. But Dr. Willis directly ties her research to her patients, spending 80 percent of her time conducting research and the other 20 percent with her Parkinson’s patients. “When I’m doing research, I’m thinking about my patients and how they inform my research,” she said.

This might explain why scientists do not actively focus on the female paradox and, consequently, why healthcare systems and policies reflect this lack of attention. Through her research, Dr. Willis tries to bridge the gap between the people with the disease, researchers and those who create the policies that affect the PD community.

The Patient-Centered Outcomes Research Institute (PCORI) awarded a grant to the Parkinson’s Foundation for the development of Women and PD Teams to Advance Learning and Knowledge (Women and PD TALK), which Dr. Willis helps manage. This project will help develop new patient-centered recommendations to improve the health of women living with Parkinson’s.

“Parkinson’s research needs to be restructured to be all-inclusive from the beginning,” Dr. Willis said. “Women need to be receiving the necessary care and attention throughout the progression of their disease, before onset and by a multitude of people.”

Women and PD TALK, which will soon host its tenth forum where women with PD, care partners and other medical professionals come together to discuss risks, symptoms, treatments and care from the perspective of women with PD. Dr. Willis has high hopes for the upcoming fall leadership forum to develop national recommendations based on these regional findings.

"I envision a round table with a female clinician scientist, a female PD patient, their caregiver, an allied healthcare worker, physical therapist and social worker all talking about how to bring ideas together and develop research projects that Congress will listen to, especially when they consider physical therapy or home health assistance for women with PD," Dr. Willis said.

These forums have laid the groundwork for a national network of women researchers, clinicians and women with PD who are committed to disseminating and utilizing the findings of the Women and PD TALK project to improve research and care for women with Parkinson’s.

It is Dr. Willis’ goal for research projects like Women and PD TALK and her hope for the future of healthcare systems to represent everyone with Parkinson’s disease. Improved studies about why women have a lower risk of PD, can result in lowered risk or prevention for everyone. Researching why and what can be done about failed caregiving for women with PD, can in turn improve caregiving for everyone.

“Figuring out how and why the experiences of women differ has benefits for every single person who has Parkinson’s disease and the people who haven’t developed it yet,” Dr. Willis said

The University of Pennsylvania Movement Disorder Center is located in Philadelphia, PA. Learn more about the nearest Parkinson’s Foundation Center of Excellence at Parkinson.org/search.

Learn More about Women & Parkinson's

People with Parkinson’s disease (PD) and their physicians are both looking to answer whether medical marijuana can help manage Parkinson’s symptoms. Researchers have barely scratched the surface when it comes to marijuana and PD and previous studies are inconclusive about its potential benefits, but many people with Parkinson’s are curious to try it. Here’s what you need to know.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about marijuana and Parkinson’s hosted by Benzi M. Kluger, MD, MS, Associate Professor at Neurology and Psychiatry at University of Colorado.

What’s in Marijuana?

Marijuana itself — the dried leaves known by names like pot and weed — comes from a genus of flowering plants called Cannabis. Cannabis plants contain more than 100 chemicals, called cannabinoids, which affect the human nervous system. Some of these chemicals stimulate parts of the brain, while others block the same effects.

The best-known plant-based cannabinoids are:

• THC (D9-tetrahydrocannabinol): the psychoactive component of Cannabis responsible for making a person feel “high.” Sativa strains of Cannabis (Cannabis sativa) tend to have higher THC concentrations than others. Marijuana available today typically has 10 to 30 times the amount of THC as that from the 1970s.
• CBD (cannabidiol): the component of cannabis that may have calming effects on the nervous system. It does not have the psychoactive effects of THC. The indica and rudaralis strains of Cannabis (Cannabis indica and Cannabis rudaralis) tend to have less THC and more CBD.

Marijuana Research

Endorphins are the naturally occurring substances in the brain that help reduce pain. They are boosted by exercise. Sometimes they are called the brain’s natural opiates, because opioid drugs bind to the same cell receptors as endorphins. Similarly, the brain has its own naturally occurring cannabinoids. Cannabinoids in marijuana have an effect by binding to the receptors for these natural molecules.

The chemicals in the brain that are similar to the active agents in marijuana are called endocannabinoids. Of these, scientists have studied anandamide, which may play a role in pain, sleep and other behaviors, along with the development of the nervous system. The name anandamide means “bliss.” This chemical is found in the human brain and, not surprisingly, in chocolate.

Do endocannabinoids have a role in Parkinson’s? Researchers know that they are involved in the brain area called the basal ganglia, which is affected by PD. Through research, scientists are gaining an understanding of the two main receptors in the brain that respond to marijuana:

• CB1 (primarily in the central nervous system)
• CB2 (primarily in the immune system).

The dozens of different cannabinoids in marijuana have a range of effects to activate or block receptors. 

In studies with laboratory animals, cannabinoids that bind to CB1 have been reported to improve dyskinesias, the involuntary movements that can develop after several years of taking levodopa therapy. Cannabinoids also have antioxidant and anti-inflammatory effects, which could point to neuroprotective activity. Some studies support this idea, but more research is needed.

Cannabinoids synthesized in the laboratory (rather than extracted from marijuana) have been tested as therapies for diseases other than Parkinson’s. CBD recently was approved as a therapy for rare types of epilepsy. Two synthetic cannabinoids are sold as FDA-approved therapies for nausea and other side effects of cancer chemotherapy:

• Marinol (dronabiol): synthetic THC
• Nabilone: a cannabinoid that acts on both CB1 and CB2

Warning: Synthetic Marijuana

Synthetic marijuana, sold legally under names such as K2 and Spice, contains lab-made cannabinoids and other chemicals. Synthetic marijuana can cause severe, even deadly, side effects. It is not a substitute for plant-based marijuana and remains unregulated.

Clinical Studies

Few studies have enrolled people with PD to investigate the effects of cannabinoids on Parkinson’s symptoms. So far, the most rigorous clinical studies of cannabis and PD movement symptoms have been inconclusive at best, because of the small numbers of participants and other limitations.

In other, less rigorous studies, researchers have surveyed cannabis use among people with Parkinson’s. In these surveys people reported their own experiences, without comparison to a control group. Small numbers of participants reported that cannabis helped tremor, slowness, and non-motor symptoms such as pain, sleep difficulties, anxiety and loss of appetite.

Research is under way to better understand how specific cannabinoids might affect PD symptoms, including a study of the safety and effectiveness of CBD for tremor. In addition, research suggests that CBD could be calming for people with Lewy body dementia, a disease related to Parkinson’s. Research shows that people with dementia should avoid marijuana or other products that contain THC.

Side Effects

With the help of the internet, marijuana and Parkinson’s remains a hot topic. In an era where certain self-help books promote marijuana for Parkinson’s, it’s important to keep in mind that cannabis is not a performance-enhancing substance.

Keeping in mind the comedic duo from the 1970s, Cheech and Chong, marijuana makes people move slowly. Other common side effects include:

• Cognitive slowness
• Worsening apathy, lack of motivation
• Memory problems
• Low blood pressure, leading to dizziness and an increased risk of falls
• Increased lung cancer risk or other pulmonary issues from smoking
• Experiencing uneasiness and feeling unwell due to edible cannabis products, which may have less predictable absorption into the body and different dosages

Guidelines for Medical Marijuana and Parkinson’s

Medical marijuana is legal in 29 states, as of early 2018. If you decide to try it for your PD symptoms:

• Inform your doctor. Both you and your doctor should be aware of potential interactions with other drugs, including entacapone (Comtan®) and citalopram (Celexa). Some physicians are not receptive to the use of medical marijuana or are not comfortable filling out state-mandated paperwork. If that’s the case, consider finding a physician who will work with you. Medical marijuana should be approached as a complementary therapy and never a substitute to medication.
• Be aware that cannabis products are not regulated. There is no assurance that one product that says it contains 10 mg of CBD is the same as another.
• Not all marijuana products are the same. Even if two products are the same strain, for example, the cannabinoids in them may be different, and have different effects.
• Stay consistent. To get the most consistent dose, stay with the same product, obtained from the same dispensary or source.
• Start with a low dose. As with all medications, start with a low dose and observe the effects. If you increase the dose, do it gradually.
• Avoid smoking. Oral drops are an alternative.
• Try skin creams or patches for localized pain. Use it like an analgesic cream for certain areas, like the legs.

Conclusion

Cannabis, the marijuana plant, contains more than a hundred different psychoactive chemicals, which have complex effects. Products derived from cannabis may vary widely in terms of their benefits and side effects.

There is currently no conclusive scientific research supporting the benefits of cannabis for any aspect of Parkinson’s. However, anecdotal evidence suggests that cannabis may help pain, sleep, appetite, nausea and anxiety. People with Parkinson’s should especially be aware of side effects such as confusion and low blood pressure that may exacerbate PD symptoms.

For more insights on this topic, listen to our podcast episode “A Western Perspective on PD: Understanding Complementary Medicine”.

We always advise patients to ask their doctor what’s new in Parkinson’s disease (PD). Recently, three leading experts at the Parkinson’s Foundation Center Leadership Conference reviewed the field and updated all attendees on several of the exciting therapies currently being tested by Albert Hung, MD, PhD, Massachusetts General Hospital (MGH); Irene Richard, MD, University of Rochester Medical Center; and Hubert Fernandez, MD, Cleveland Clinic. In this month’s What’s Hot in PD blog we review their latest therapies.

There are several drugs that have been repurposed and are in clinical trials. The advantage of a repurposed drug is that it is already approved by the U.S. Federal Drug Administration (FDA). The hope for the four drugs listed below is that they will meaningfully slow disease progression.

• Isradipine (pill) is a calcium channel blocker that was previously approved for the treatment of high blood pressure. The idea behind the use of this drug is to block the entry of calcium into brain cells. Research has revealed tantalizing clues that blocking calcium may prevent brain cell death and lead to positive effects and perhaps even change disease progression.
• Exenatide (injection) is an FDA-approved diabetes drug that promotes insulin release and inhibits glucagon secretion. It is glucagon-like peptide (GLP-1) agonist. There are pre-clinical studies which show potential neuroprotective effects in toxin-based PD models.
• Nilotinib (pill) is a cancer drug used most frequently to treat leukemia. It works as a c-Abl tyrosine kinase inhibitor (blocks an enzyme). It is thought to treat the alpha-synuclein deposition that occurs in the brains of people with Parkinson.
• Inosine (pill) was a previously used drug to improve athletic performance. It is not FDA approved, but there has been great interest in using this drug to address stroke, multiple sclerosis and Parkinson’s. The idea for its use in Parkinson’s disease is that higher blood levels of uric acid may possibly decrease disease progression and this drug is effective at raising levels. The safety of the drug will be monitored especially for things like gout and kidney stones.

There is great interest in gene targeted and enzyme targeted therapies:

• GBA-associated Parkinson’s disease from the glucocerebrosidase (GBA) gene is of interest to many investigators. The pharmaceutical company Sanofi has a Phase II trial of a glucosylceramide synthase inhibitor to treat people with Parkinson’s who have the GBA gene (GZ/SAR402671).

• The gene that makes amino acid decarboxylase (AADC) and promotes conversion of brain chemicals (dopamine, serotonin) has been a target for clinical trials. There are positive interim results from an ongoing phase Ib trial and a current open-label trial.
• Ambroxol is an older drug that has been used to treat respiratory disease (decreases mucus). It also increases brain GCase activity. There are trials exploring disease modification and dementia. Allergan has a similar drug LTI-291 that may go into clinical trials soon.
• Denali has a LRRK2 inhibitor for people with the genetic mutation (LRRK2) that causes Parkinson’s. It is called DNL201. There is also a second drug DNL151 that is being tested in the Netherlands.

Finally, there is great interest in vaccine and immunotherapy trials:

• There is a vaccine trial called AFFiRiS that passed its safety testing. It is moving into the next phase to see how it will affect symptoms and disease progression.
• There are two antibody Infusion trials using intravenous injections. The current trials are Biogen (phase 2a) and Roche (phase 2b). The safety data from these trials has been promising, but there are not results of efficacy or disease modification.

We encourage all people with Parkinson’s to stay abreast of new and emerging therapies.  It is important to regularly learn about the latest Parkinson’s treatments and medications, and to check clinicaltrials.gov for the current status of ongoing research. Even if you decide a clinical trial is not for you, you may still find it useful and hopeful to monitor the latest developments in the field.

Learn more about clinical trials at Parkinson.org/ClinicalTrials.

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.

Each year, nurses from all over the world come together at the annual Quality and Safety Education for Nurses (QSEN) Forum to share ideas to promote quality and safety in healthcare. This year’s forum in Bonita Springs, FL, from May 30 to June 1, shined a light on Parkinson’s disease (PD) and the work being done to improve care for people living with this challenging health condition.

John Baumann, an inspirational speaker, shared his own Parkinson’s experience, giving attendees a better understanding of the patient experience. But this is not the first time Parkinson’s has been mentioned at QSEN.

In 2014, I had the good fortune of attending the Edmond J. Safra Visiting Nurse Program at the Parkinson’s Foundation in Philadelphia, PA. It was an incredibly eye-opening experience. The program consists of a 40-hour educational experience for nurses in academia and practice so that they can better understand the disease.

The program includes lectures, interactive discussions with people living with PD, clinical experience with physical therapists, time with caregivers, and several hours shadowing a physician caring for patients in a movement disorders clinic. The capstone of the experience is that participants conduct a project focused on improving care for PD patients.

The program is offered in different cities throughout the year. In 2018 the program has been hosted at the University of Toledo, Ohio; Towson University, MD; Boston University, MA; and Struthers Parkinson’s Center, MN.

Before my Edmond J. Safra Visiting Nurse Program experience I thought I understood PD, but it wasn’t until the training that I quickly realized how much I didn’t know and how misunderstood PD is. I realized that health care professionals could do a lot to improve the quality of life for people living with PD if they understood it better.

For years I served on the QSEN Institute advisory board and worked as a QSEN consultant, so for my capstone project I brought these two endeavors together: I developed an unfolding case study about a person with Parkinson’s who is admitted to the hospital for surgery. The case study emphasizes the important safety aspects of caring for patients with PD, such as the need for on-time medication administration and injury and falls prevention strategies. This unfolding case study is now published on the QSEN website and available as an educational tool for all.

Parkinson’s was prominent at this year’s QSEN Forum with presentations and posters from Edmond J. Safra Visiting Nurse Program alumni scholars who shared their innovative work that contributes to improving the quality and safety of care for PD patients. The Parkinson’s Foundation also attended the event, hosting a table with educational resources.

This annual event brings together health care professionals working to improve quality and safety for patients, but this year, it had a special meaning for all of us who care for people living with Parkinson’s. 

Article by Gerry Altmiller, EdD, APRN, ACNS-BC, Edmond J. Safra Visiting Nurse Scholar at the Parkinson’s Foundation.

Highlights from Edmond J. Safra Visiting Nurse Scholars at the Parkinson’s Foundation

Diane Ellis, MSN, RN, (front, right) clinical assistant professor, became the first nursing faculty to be awarded the distinction of Villanova Institute for Teaching and Learning (VITAL) Faculty Associate for the Fall 2018 semester. Her project, “Lost in Transition: Promoting Parkinson Patient Medication Safety,” is designed to improve care for patients with Parkinson's and includes senior undergraduate students, graduate nurse anesthesia students and clinical faculty. She is building on work with faculty colleagues Shelley Hickey, MSN, RN, clinical assistant professor (left) and Dr. Melissa O'Connor (back, center), and two research seminar students, Meghan Galvin and Addie Doyle. Professors Ellis and colleagues presented at the 2018 QSEN Forum.

Amy Bruno, PhD, RN, ANP-BC, presented “Fatigue in Parkinson’s Disease: A Qualitative Descriptive Study Exploring the Individual’s Perspective” at the 2018 American Association of Neuroscience Nurses meeting in San Diego, CA.

Orawan Kuljeerung DNP, RN, presented “Extrinsic Circumstances of Falls Among Community Dwelling Older Adults with Parkinson’s Disease: An Integrative Review” at the 2018 Annual Midwest Nursing Research Society Meeting in Cleveland, OH and at the 2018 Graduate Research Symposium in St. Louis, MO.

Denise Dion, MSN, RN, Central Arizona College, presented “A Process Improvement Project:  Nurse Faculty Approach to Improving Care Across the Continuum for patients with Parkinson’s Disease” at the 2018 QSEN Forum.

Amy Rex Smith, PhD, RN, Belhaven University, Jackson, MS, traveled to Taipei May 31-June 8, 2018 to present “The Art and Science of Spiritual Care”, work she is pursing in relationship to Parkinson’s disease.

Denise Johnson-Dawkins, DNP, MSN, RN, CNL, California State University, presented her PD simulation addressing ethics to her university’s 2018 Ethics Across the Curriculum Faculty Development Workshop.

Upcoming Programs and Webinars

Continuing education programs in Parkinson’s for nurses being held in fall 2018 as part of the Edmond J. Safra Visiting Nurse Faculty Program at the Parkinson’s Foundation include:   

• October 16 to 19: University of Alabama, Birmingham, AL
• October 25 to 26: Muhammad Ali Parkinson’s Disease Center, Phoenix, AZ
• October 31 to November 1: Weill Cornell Medicine at New York Presbyterian, New York, NY

On October 17 to 20, in Atlanta, GA, the Parkinson’s Foundation will also host the Allied Team Training for Parkinson’s (ATTP) event. All nurses who would like to continue learning about Parkinson’s and how to deliver optimal clinical care through interprofessional teams are eligible to register for ATTP.

Parkinson's disease is a chronic neurodegenerative disease that can cause a multitude of physical discomforts and psychosocial stressors. Spiritual practices may help mitigate stress and provide a source of inner strength for those with chronic diseases, yet health care workers may lack an understanding of how spirituality impacts holistic care or how to help patients in their spiritual journey. This webinar will discuss the gap that exists between PD, spiritual research and theories of uncertainty in illness as related to Parkinson’s disease. The program will explore the use of spirituality in managing PD care and provide examples of work done by nurses in this area. The webinar is led by: Diane Reynolds, EdD, RN, OCN, CNE, Former Associate Professor of Nursing, Long Island University, NY; Amy Rex Smith, PhD, RN, ACNS, BC, Professor of Nursing, Belhaven University, Jackson, MS; Lourdes Santoni, PhD, MSN, RN, CRNP- Nurse Practitioner and Educator, Northeast Center for Behavioral Health, Philadelphia, PA.

Latest Parkinson’s Research

Prior research has shown a link between moderate and severe TBI and increased risk of PD. A recently published Neurology study, “Mild TBI and risk of Parkinson’s Disease: A Chronic Effects of Neurotrauma Consortium Study,” showed that even a mild brain injury increases risk of PD in the population of veterans studied.

Immediate release amantadine has been used off label for mitigating dyskinesias in people with Parkinson’s who have fluctuations. GOCOVRI™ (ADS-5102 amantadine extended release capsules) is now available. An open label study shows an incremental reduction in baseline UPDRS Part IV scores without exacerbating adverse events.

Resource Corner

Parkinson’s Foundation Research Advocates live across the nation and are trained to assist professors teach nursing students about Parkinson’s. These advocates share their Parkinson’s experiences and advocate for PD research. If you are interested in working with a research advocate, please contact Karlin Schroeder, Parkinson’s Foundation Community Engagement Director, at KSchroeder@Parkinson.org or (800) 473-4636.

To order free Parkinson’s Foundation educational resources, please contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636).

Over time, surgical therapies have improved treatment options for a generation of people with Parkinson’s disease (PD) who experience worsening motor fluctuations and dyskinesia. Lesion therapies, such as deep brain stimulation (DBS), are powerful options for people with these troublesome symptoms. Levodopa/carbidopa intestinal pump therapy (Duopa) provide an option for symptom relief without brain surgery. In this month’s edition of What’s Hot in Parkinson’s disease, we examine the results of the recently completed apomorphine TOLEDO pump trial, a new study examining subcutaneous apomorphine infusion (a pump therapy that delivers PD medication similar to insulin pumps for diabetes). These results may influence an individual’s decision to pursue levodopa/carbidopa intestinal gel pumps (Duopa) or deep brain stimulation.

About subcutaneous apomorphine treatment

Recently, there has been hope among the PD community that subcutaneous apomorphine treatment may  provide a less invasive option to directly address troublesome motor fluctuations. A person with Parkinson’s or a caregiver can administer the setup and procedure of a pump. A small delivery tube is placed under the skin and connected to an external pumping device filled with apomorphine. Duopa pump therapy a similar option, however is more prone to complications associated with the gastroduodenal levodopa/carbidopa gel delivery tube.

Prior to the recently published TOLEDO trial, subcutaneous apomorphine infusion had only been tested in open-label studies, which lacked control groups or the use of a placebo to more accurately test the treatment. Regina Katzenschlager, MD, and colleagues conducted a randomized placebo controlled multicenter double-blind study — the gold standard of research studies — utilizing 23 clinical trial centers across Europe and published their findings in the July issue of Lancet Neurology. 

How does the TOLEDO trial help people with Parkinson’s?

Though there were 107 people with Parkinson’s enrolled in the study, 36 did not complete the full double blind observational period. Participants had to be diagnosed at least three years prior to enrollment. Researchers were most interested in studying people with PD who have persistent motor fluctuations, despite medication. Over the course of the 12-week study, participants were randomized, some receiving three to eight milligrams per hour of apomorphine subcutaneous injections, while others received a placebo saline infusion. The infusions were only administered during waking hours — approximately 16 hours a day. The flow rates for the devices and the PD medications could be adjusted during the first four weeks of therapy. 

Apomorphine infusion improved off time by more than two hours a day; however, it surprisingly did not influence quality of life. The primary outcome variable for the study was the change in daily dopaminergic off medication time. The apomorphine infusion reduced off time compared with placebo. Data from 106 participants was analyzed. Six subjects in the apomorphine group withdrew and 44 percent had nodules (growth of tissue) where the pump was infused. The most common side effects were erythema (reddening of skin) at the infusion site, nausea and dyskinesia.

The dyskinesia scores among participants were so mild that it would be hard to judge how the apomorphine therapy would have performed if administered to moderate to severe dyskinesia cases. However, one could speculate that the apomorphine infusion would likely worsen dyskinesia as it did in 15 percent of subjects who were randomly chosen to receive the apomorphine. Finally, the four-week period where medications and apomorphine could both be simultaneously adjusted in the study, made the results difficult to evaluate. Regardless, since the study design was double blind, there was a clear benefit in improving on dopaminergic time in the apomorphine, but not in the placebo group.

What is the bottom line for the PD community? 

If you are experiencing mild to moderate Parkinson’s motor fluctuations, apomorphine infusion treatment may be beneficial — even though it is not FDA-approved in the U.S. It would make sense to try a subcutaneous apomorphine before trying the more invasive levodopa/carbidopa intestinal gel pumps or deep brain stimulation.

Unlike apomorphine infusions, both the Duopa levodopa/carbidopa intestinal gel pump and DBS have been associated with improvements in quality of life. Collectively, research suggests that both the Duopa pump and DBS approaches would have greater benefits than apomorphine infusions but have increased risks. 

Deep brain stimulation remains the most powerful treatment for severe dyskinesia. In some cases, apomorphine infusions may worsen dyskinesia. The implications of forming nodules and erythema where the pump is inserted, for short and long term apomorphine infusion treatment, remains unknown. Future and hopefully larger comparative studies can help guide people with Parkinson’s and doctors in therapy choices. 

Selected References:

Regina Katzenschlager, Werner Poewe, Olivier Rascol, Claudia Trenkwalder, Günther Deuschl, K Ray Chaudhuri, Tove Henriksen, Teus van Laar, Kevin Spivey, Senthil Vel, Harry Staines, Andrew Lees. Apomorphine subcutaneous infusion in patients with Parkinson’s disease with persistent motor fluctuations (TOLEDO): a multicentre, double-blind, randomised, placebo-controlled trial. Lancet Neurology. Published online July 2018.

Okun MS. Subcutaneous Apomorphine Treatment: Results of the TOLEDO Trial. NEJM Journal Watch Neurology, 2018.

Every day, potentially groundbreaking Parkinson’s disease (PD) research ideas are explored in labs funded by the Parkinson’s Foundation. Since research never stops, I am excited to share our latest Parkinson Report newsletter with you that focuses on a topic that is critical to the Foundation and our community: research.

In this special issue, we are excited to announce four new Research Centers. These centers will receive Foundation funding dedicated to developing the latest in treatment and better understanding this disease. Read more about these centers and how we will work together to find the next PD breakthrough.

Scientists play a critical role in advancing Parkinson’s treatments. More than 500 scientists have received funding from the Parkinson’s Foundation, like James Dahlman, PhD (page 9), who conducts thousands of drug delivery tests at the same time.

In addition, learn more about the future of PD research with these articles:

• Announcing New Centers of Excellence
• Ask the Doctor: Research Edition
• PD Medications: What’s New
• Women and PD Research

We are optimistic and excited to fund the most innovative and dedicated research initiatives among those new to our field and experts, alike. It is only a matter of time until we evolve precision treatment, revolutionize therapy options and ultimately, cure Parkinson’s.

Sincerely,

James Beck, PhD
Chief Scientific Officer
Parkinson’s Foundation

Welders exposed to fumes containing low levels of the metal manganese had a high rate of Parkinson-like symptoms, which progressed with increasing cumulative exposure to the metal, according to research published in the December 28 online edition of Neurology. The results make a case for better worker protection. They also help scientists understand the underlying mechanisms by which exposure to substances in the environment may contribute to Parkinson’s disease (PD).

The law limits occupational exposure to high levels of manganese because it is known to lead to a severe movement disorder with Parkinson-like symptoms. Yet, in an earlier study, researchers led by Brad A. Racette, M.D., at the Washington University School of Medicine in St. Louis, MO, found that many welders with chronic exposure to low manganese levels had stiffness, slowness and other symptoms similar to those of PD. This is called manganism. While manganism is similar to PD in that it produces PD-like symptoms, such as slowness of movement and is characterized by a disruption of normal dopamine signaling, it is a different disease. In fact, it affects a different part of the brain than PD and not the substantia nigra.

For the new research, the scientists recruited 886 study participants who worked as welders at two Midwestern shipyards and a heavy machinery fabrication shop. Movement disorders specialists examined all participants at the start of the study and followed 398 of them for up to 10 years, using standard tests to assess Parkinson’s-like symptoms. The workers filled out questionnaires about their job types and length of employment as a basis for estimating their manganese exposure.

Results

• The average exposure to manganese was estimated to be 0.14 milligrams per cubic meter, below the legal limit of 0.2 milligrams per cubic meter.
• Of the total number of study participants, 135 (15 percent) had Parkinsonism, meaning Parkinson-like movement problems.
• Parkinson’s symptoms were progressively more severe among participants with higher cumulative manganese exposure.
• The symptoms that progressed were slowness of movement in the arms and hands, and stiffness in arms and legs, as well as speech problems and less facial expression. Symptoms tended to appear on both sides of the body (as opposed to PD which is often asymmetric).
• Welders who did flux core arc welding in a confined space, and those who were examined within the first five years of their welding experience, had the fastest progression of PD-like symptoms.

What Does It Mean?

This study is the first to report that long-term, near-threshold exposure to welding fumes containing low manganese levels can lead to progressive parkinsonism, a disease that mirrors symptoms of Parkinson’s but is a separate disease.

A strength of the study is that it followed a large number of participants over several years. Combined with research in which study participants also had brain scans, these results shed light on the mechanisms underlying manganese exposure. It remains unknown if manganese contributes to the development of PD, which is also associated with Lewy body pathology in the brain.

The study authors also advocate that steps should be taken to broadly monitor worker exposure to manganese and to reduce workplace exposure levels to below the current limits.

One year after the Parkinson’s Foundation awarded $500,000 in research grants to address critical unmet needs in Parkinson’s disease (PD), we check in with one of three of the researchers making a difference right now. 

Researchers were tasked with jumpstarting practical solutions to ease difficulties related to cognition, fatigue and sleep, all debilitating yet under-recognized symptoms in Parkinson’s. They have each received a grant funded through the Parkinson’s Foundation Community Choice Research Awards, the first program to set research priorities based on the insights of people living with Parkinson’s.

Amy W. Amara, MD, PhD, received a research grant to study "Impact of Exercise on Executive Function and Sleep" at the University of Alabama at Birmingham.

To learn more about Parkinson’s research visit Parkinson.org/Research.

One year after the Parkinson’s Foundation awarded $500,000 in research grants to address critical unmet needs in Parkinson’s disease (PD), we check in with one of three of the researchers making a difference right now. 

Researchers were tasked with jumpstarting practical solutions to ease difficulties related to cognition, fatigue and sleep, all debilitating yet under-recognized symptoms in Parkinson’s. They have each received a grant funded through the Parkinson’s Foundation Community Choice Research Awards, the first program to set research priorities based on the insights of people living with Parkinson’s.

Hengyi Rao, PhD, recieved a research grant to study "Using Brain Imaging to track Fatigue in Parkinson's Disease" at The University of Pennsylvania, a Parkinson’s Foundation Center of Excellence.

To learn more about Parkinson’s research visit Parkinson.org/Research.

When a large population of people have a disease, like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. In our latest research initiative, we established the Parkinson’s Prevalence Project to determine a more accurate representation of people living with PD today through a study called the Parkinson’s Foundation Prevalence Project.

The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number will rise to 1.2 million by 2030.

"Our knowledge of Parkinson’s has changed significantly and so has our understanding of how many people have this disease,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer and contributing author on the study. “This study will help the Parkinson’s Foundation attract the attention of federal and state government as well as the pharmaceutical industry to the growing need and urgency in addressing PD.”

About The Study

The Parkinson’s Foundation formed the Parkinson’s Prevalence Project in 2014 to find an accurate estimate of PD prevalence because prior estimates were widely varied. The 1978 estimate extrapolated data for how many people in the nation have Parkinson’s based on 26 cases of PD in a rural Mississippi county. The new Parkinson’s Prevalence Project estimate is nearly double the 1978 study count.

The new study sought to answer two main questions:

1. Is the prevalence of PD uniform throughout North America or does it vary by study and/or geography?
2. What will the data tell us about the prevalence of Parkinson’s and about the disease itself?

The goal of the Parkinson’s Foundation Prevalence Project is to establish the epidemiological (the incidence, distribution and control of a disease) prevalence of PD throughout North America. The study establishes a more precise estimate of PD burden through combining data from four different regions across North America: California, Minnesota, Hawaii, and Ontario, Canada. Researchers then compared these estimates to nationwide Medicare data to ensure accuracy.

The study combined data using a multi-study sampling strategy, which means large populations were divided into smaller clusters to get accurate numbers that are then applied to an entire population.

5 Facts You Should Know About the Study

1. The 2018 Prevalence Project estimate draws from large and diverse populations.
2. The new study estimate is nearly double the 1978 study prevalence number.
3. By 2020, 930,000 people in the U.S. will be living with Parkinson’s.
4. The new study confirms that men are more likely to have Parkinson’s than women and that the number of those diagnosed with PD increases with age, regardless of sex.
5. The new study found that the prevalence of people diagnosed with PD varies by region. Study researchers will devote more time to find out how.

Next Steps

Prevalence estimates of Parkinson’s will prove vital in public health planning. Updated numbers can ultimately help establish how much money and resources should go towards helping treat people with PD in each state.

“Like Alzheimer’s disease, Parkinson’s disease affects primarily older individuals and poses a significant health care burden and a real challenge on how to care for the aging population over the coming decades,” said Connie Marras, MD, PhD, lead author on the study and movement disorder neurologist at the Movement Disorders Centre at Toronto Western Hospital, Parkinson’s Foundation Center of Excellence, and the Edmond J. Safra Program in Parkinson’s research.

The Importance of the Study

Parkinson’s Foundation Prevalence Project numbers highlight the growing importance of optimizing expert Parkinson’s care and treatment for people with Parkinson’s, which would help future caregivers and ease the strain on health and elder care systems.

By supporting this study, the Foundation works to better understand Parkinson’s with the goal of solving this disease. Establishing these numbers and using them to educate PD communities and influence legislation will help the foundation provide aptly tailored resources, outreach and advocacy to the underserved PD populations across the nation.

The entire study is available and was recently published in the Parkinson’s Foundation scientific journal, npj Parkinson’s Disease.

Read more about the study and what it means for the Parkinson’s community at Parkinson.org/PrevalenceProject.