The microbiome is a hot topic in Parkinson’s disease (PD). The microbiome is the network of microorganisms, along with viruses and bacteria, that help the body stay healthy. In the PD community, when we talk about the microbiome, we’re referring to the bacteria found in the gut. Leading experts have suggested that the microbiome has a potential role in the pathogenesis (way a disease develops) and in the treatment of Parkinson’s. This has sparked the idea that we might be able to improve PD symptoms if we change the microbiome through diet or other ways. In this month’s What’s Hot in Parkinson’s disease, we will explore the not so hidden viruses within the gut.

What is in the human gut microbiome? The microbiome has many living creatures, such as bacteria and fungi. Most people are not aware that viruses live in your gut, which are called bacteriophages. Fun fact: the human gut houses more viruses than bacteria.

George Tetz, MD, and colleagues, in a recent issue of Scientific Reports examined bacteriophages in Parkinson’s disease. Dr. Tetz looked at the gut phagobiota (the combination of all gut bacterias). He and his colleagues analyzed existing data and calculated the phage (virus) to bacteria ratio in early untreated people with PD. The researchers also compared their findings to a group of people without Parkinson’s.

People with Parkinson’s have less of a specific type of bacteria that produces lactic acid. These bacteria play a role in the processes that produce dopamine and affect the intestine’s ability to absorb. According to the study, people with PD did not have less bacteriophages than people without PD, but people with Parkinson’s were found to have an increased number of a specific kind of bacteriophage called the lytic-phase bacteriophage.  

Though there were only 31 people with Parkinson’s in this study, the results were fascinating. If a person received bacteriophages, it would shift the microbiome and change the intestine’s ability to absorb. Another study recently reported that consuming dairy is associated to developing Parkinson’s later in life. Dr. Tetz and his colleagues speculate that dairy impacts bacteriophages and specifically Lactococcus (a type of lactic acid bacteria).

The idea that change in the gut microbiome and bacteria found within may be important to Parkinson’s has gained momentum. We need to be careful in interpreting this study, as study participants with PD had not been exposed to dopamine and the number of participants was small.

We cannot automatically assume that this gut virus study shows a direct link to the cause of Parkinson’s. We also do not yet know if altering the viruses or other components of the microbiome will improve treatment or alter PD progression. However, we are hopeful that more research will lead to better diets, novel treatment approaches and may even help current medications work more effectively. Considering there are more viruses in the human gut than bacteria, these viruses are now more visible to clinicians and future researchers than ever.

References

1. Tetz G et al. Parkinson’s disease and bacteriophages as its overlooked contributors. Sci Rep 2018 Jul 17; 8:10812.
2. Okun MS. Bacteriophages, the Microbiome, and Parkinson Disease: Possible Treatment Implications. Journal Watch Neurology, 2018.

You can find out more about our National Medical Advisor, 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.

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

In 10 to 15 percent of people with Parkinson's disease (PD), the disease is familial (tied to genetics), while the rest are nonfamilial. Mutations in the LRRK2 gene are the most common cause of familial PD. In fact, researchers have identified more than 100 LRRK2 gene mutations in families with PD. 

It’s important to understand that all human beings, regardless of their PD status, have the LRRK2 gene. LRRK2 serves a variety of important functions. It is active in the brain and is also found in many other organs and tissues throughout our bodies. This matters because new findings suggest LRRK2 may play a key role in all forms of Parkinson’s, even in people that do not have a LRRK2 genetic mutation. This may be the linchpin scientists have been seeking for treating all people with PD.

A recently published research article in Science Translational Medicine titled “LRRK2 activation in idiopathic Parkinson’s disease” (Di Maio et al., 2018) sought to investigate whether the wild-type (normal, as opposed to mutated) LRRK2 plays a role in idiopathic PD. What they found is stunning. By developing two new tests to determine the activation state of LRRK2 under different conditions, the research scientists revealed a series of connections that may lead to breakthrough PD therapies. In short, there might be a new way to help treat all people with PD.

Results

The research scientists:

• Developed a genetically engineered detection technology that could identify whether the LRRK2 was active or inactive (on or off), with better resolution than other available tests.  
• Validated their tests in human embryonic kidney cells that had either normal LRRK2, mutated LRRK2 or no LRRK2 at all.

From this test, scientists learned:

• LRRK2 is activated in both dopamine neurons and in immune cells in the brain (microglia) in post-mortem brain tissue from people with idiopathic PD but not in normal, healthy brain tissue.
• LRRK2 activation occurs in dopamine cells in two different rat models of PD. In one model, rats were given a mitochondrial toxin (called rotenone) that causes oxidative damage. In the other model, rats were engineered to make too much alpha-synuclein  — the protein known to accumulate in PD brains, which leads to Lewy body formation. In both cases, LRRK2 was activated even though the rats had normal LRRK2.
• LRRK2 activation occurs early and before any brain cells have died, is triggered by oxidative damage, plays a role in alpha-synuclein accumulation in the brain, and has downstream effects on waste management in cells (tested in the rotenone rat model).

What Does This Mean?

To understand why this study places LRRK2 at such a pivotal point in PD, here’s the essential background information you need to know:

In a normal, healthy cell, LRRK2 is inactive. However, in a cell where there is oxidative damage, LRRK2 becomes activated, then:

• Activated LRRK2 inactivates other proteins that are important to the cells’ waste management process, leading to the build-up of alpha-synuclein.
• Clumps of alpha-synuclein interfere with mitochondrial function, which results in oxidative stress.
• Oxidative stress activates even more LRRK2, forming a vicious cycle.
• Ultimately, this results in large clumps of alpha-synuclein, called Lewy bodies, which are the hallmark of PD.

This new study developed tests so we can now see the evidence of activated LRRK2, which we couldn’t see before, as well as where LRRK2 is located, e.g., in dopamine neurons and microglia. Previous detection technologies could not specifically identify LRRK2 activation in idiopathic PD and/or the images were not helpful.

Taken together, this data suggests that LRRK2 activation may play a central role — not only in familial PD with LRRK2 mutations — but also, in nearly all cases of PD. Further, this study shows evidence that LRRK2 kinase inhibitors, which are currently in development by several pharmaceutical companies, can break the vicious circle of LRRK2 activation, suggesting a new avenue of PD therapy development.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about LRRK2 by visiting the Parkinson’s Foundation resources below or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Genetics and Parkinson's
• PD GENEration: Mapping the Future of Parkinson's
• Podcast Episode: Genetics and PD: What do we know so far?

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.

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.

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.

The Parkinson’s Foundation, in collaboration with the Brain Donor Project, is working to shed light on the critical need for brain donation to advance Parkinson’s disease (PD) research. According to the National Institutes of Health (NIH), there are vastly inadequate brain donations to meet the research demand of several disorders, in particular Parkinson’s.

“Because Parkinson’s is exclusively a human disease, we are entirely dependent on brain donation to help us truly understand how Parkinson’s affects the human brain,” said James Beck, PhD, Parkinson's Foundation’s Chief Scientific Officer.

As suggested in a JAMA Neurology article, the aging population is poised to see a global spike in the number of people diagnosed with Parkinson's.  Authors Ray Dorsey, MD, University of Rochester Medical Center, and Bastiaan R. Bloem, MD, PhD, Radboud University Medical Center, both Parkinson’s Foundation Centers of Excellence, liken this surge to a pandemic requiring immediate action. Expert care and research remain our only chance to fight this disease in time to help future generations.

Since one brain can provide tissue for up to hundreds of research studies, an individual brain donation is a highly valuable gift that almost anyone can make.

What are the steps of brain donation?

1. Decide whether this is the right option for you.
2. Register to become a brain donor through the Brain Donor Project.
3. Match with a brain bank in the NIH NeuroBioBank network. Receive forms and additional information needed to finalize your registration. 
4. Let your family know of your decision so they can ensure your wishes are carried out. Consider using the NIH NeuroBioBank brochure for reference.
5. Provide designated family members with the brain bank contact information. Your family will not incur any expense for the donation.
6. Help hundreds of researchers further their Parkinson’s research.

Timing is everything — in the last 20 years, neuroscientists have learned more about the human brain than at any other point in recorded history. Your donation to The NIH NeuroBioBank will ensure that scientists continue to advance PD research. According to the NIH, increasing the amount of brain tissue available for research allows scientists to better understand how to prevent, diagnose, treat and cure brain disorders, like Parkinson’s.

Through a coordinated network of brain banks in the United States, the NIH NeuroBioBank arranges for donated brain tissue to be evaluated and made available to researchers while following the highest standards for research and providing brain tissue to the greatest number of scientists possible. With just one brain, multiple researchers can further their studies.

“From the discovery of levodopa, the first true therapy for PD, to the next generation of therapies in clinical trials today, each critical advance has been made because of the generosity of people contributing their brains to help solve Parkinson’s,” said Dr. Beck.

According to the Brain Donor Project, many donors and their families share a mutual feeling of satisfaction knowing that they are contributing to the health and well-being of future generations. Brain donation makes it possible to advance science and work toward cures for neurological diseases.

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.

Last week, 300 Parkinson’s disease (PD) advocates from nearly all 50 states convened in Washington, D.C. for the 2018 Parkinson’s Policy Forum. This annual event brings people with PD and their loved ones to our nation’s capital for two days of education and training followed by a day of advocacy action and engagement. Despite a snowstorm that closed Congress’ doors and shut down the streets of Washington, advocates made sure the Parkinson’s community was heard on Capitol Hill.

This year’s Forum was co-sponsored by the Parkinson’s Foundation and The Michael J. Fox Foundation (MJFF). Nine other PD organizations also contributed time and resources to help make the event possible.

“When Parkinson’s groups come together to advocate for change, we amplify our message and have a greater chance of influencing public policy,” says John Lehr, CEO of the Parkinson’s Foundation. “This collaborative approach is key, and we look forward to working together in this way long after the Forum is over.”

The event began with two days of educational panels where advocates learned about recent research advances and current policy issues affecting people with Parkinson’s, their families and care partners. Attendees also received training on how to build relationships with lawmakers and be an effective advocate. Six sessions were streamed live on Facebook and have already garnered nearly 59,000 total views.

Senator Cory Booker, whose late father lived with Parkinson’s, delivered a keynote speech on the morning of Tuesday, March 20. “I tell each and everyone one of you, what you do matters,” he said, underscoring the importance of advocacy. (View the senator’s full remarks.)

On the final day of the event, advocates were scheduled to head to Capitol Hill for congressional meetings but the government shut down due to a snowstorm. Attendees, determined to make their voices heard, rallied and spent the day calling and emailing each of their senators and representatives to ask for increased Parkinson’s research funding in Fiscal Year (FY) 2019. (Congress just passed the FY 2018 spending deal, including a $3 billion boost for the National Institutes of Health, and is now negotiating funding for FY 2019). Advocates also recorded short videos on this topic and posted them to their legislators’ social media feeds. (Search for the hashtag #act4PD on Twitter to see our community in action!)

“I couldn’t see my members of Congress in Washington, but that’s not going to stop me. I know there are many other ways to speak up for the issues that are important to me. I’m already working on setting up meetings with my legislators when they come back to my home state of New Mexico,” said advocate Karen St. Clair. “Advocacy is an activity we must engage in all year round, and I’m going to continue to use what I learned at the Forum to educate my elected officials on what matters to people with PD and their families.”

At the same time Forum attendees were advocating from their hotel, thousands of people across the country joined these efforts by participating in Parkinson’s Advocacy Day. PD community members sent an impressive 14,000 emails to their lawmakers on this day of action, emphasizing the importance of robust federal research funding.

“While the government was closed, some congressional phone lines were open. The staffers who answered our calls told us that they were hearing from many people with PD,” says Ted Thompson, JD, senior vice president of public policy at MJFF. “Our voices are getting through, and Congress is taking note of our needs and priorities. We couldn’t be on Capitol Hill in person, but there’s no doubt in my mind that we made an impact in Washington.”

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

Eating well can help you take control of your health. In fact, choosing to eat healthy foods can improve your Parkinson’s disease (PD) symptoms. And some research suggests that sound nutritional choices could have disease-modifying effects, meaning that they could potentially slow PD progression. Changing your eating habits can be a challenge, but there are many small adjustments you can make to your diet that will add up to big benefits. Learning about them is the first step.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about nutrition, hosted by John E. Duda, M.D., from Philadelphia VA Parkinson’s Disease Research, Education & Clinical Center (PADRECC).

Managing PD Symptoms with Diet

Research supports these strategies for managing the following PD symptoms and medication side effects:

Fluctuations. Some people who take levodopa (Sinemet) notice that their medication is less effective when taken with a high-protein meal (a meal including foods like meat, fish and eggs). To address this difficulty, your doctor may recommend taking levodopa 30 minutes before, or 60 minutes after, you eat. That’s because levodopa is absorbed into the digestive system by the same route as protein — when taken together, both compete to be absorbed into the body.

Even after adjusting medication timing, some people still have difficulty absorbing it. This can lead to fluctuations — the levodopa wears off too soon or you experience changes throughout the day between the medicine working well and not having any benefit at all.

A protein-redistribution diet is a popular solution for fluctuations. That means eating most of your daily protein at dinnertime — the last meal of the day — to minimize Sinemet interference during most of the rest of the day. In research studies, fluctuations improved in about 80 percent of people who made this dietary change. People who benefitted most were those who started the regimen early in the course of their PD, before fluctuations became severe.

Iron also can prevent your body from taking up levodopa medications. Do not take iron supplements or multivitamins with iron within two hours of Sinemet.

Daytime sleepiness. Studies show that taking caffeine in two to four cups of coffee a day can improve daytime sleepiness.

Orthostatic hypotension is sustained low blood pressure and dizziness on standing. There are several ways to reduce this symptom:

• Avoid large meals, as they divert blood to the digestive system.
• Increase the amount of salt in your diet.
• Reduce alcohol consumption.
• Drink one and a half to two quarts a day of fluids (six to eight 8-ounce glasses, including water, coffee and other beverages). You can also use a tall cup that has lines to mark your progress and help you keep track throughout the day.

Constipation. If you have less than one bowel movement per day, try to:

• Drink more fluids.
• Consume more fiber, from fruits, vegetables, beans, whole grains, nuts and seeds. Aim for 30-40 grams of fiber per day. Choose foods that have five or more grams of fiber per serving.

Cognitive changes. Many studies have shown that the Mediterranean diet can lower the risk of cognitive impairment for everyone. This diet is rich in whole grains and vegetables. It also includes fish, as well as small servings of low-fat dairy and lean meat, and uses olive oil instead of butter.

Bone health. People with PD often have low blood levels of vitamin D, which is essential for strong bones and may also play a role in warding off depression and cognitive change. Make sure your doctor tests your vitamin D. It can be difficult to get enough vitamin D through diet. Your doctor may recommend supplements.

Malnourishment and weight loss. If your food tastes bland, you’ve probably lost some of your sense of smell — a common PD symptom. To make food more appealing, so that you feel like eating more, try seasoning it with herbs, spices and other flavors. If you or your loved one with PD has experienced significant weight loss, ask your doctor for a referral to a nutritionist. This member of your health care team can offer different strategies for maintaining a healthy weight depending on your age and PD symptoms.

Your Diet and the Microbiome

One of the big stories in medicine is the role of the gut microbiome (the bacteria and other microorganisms that live in the digestive system) in health and disease.

Several studies have found that people with PD have much lower levels of Prevotella species of bacteria — a type thought to be good for maintaining gut health. They also have higher levels of bacteria associated with inflammation, which can be harmful.

How does that relate to your diet? What you eat affects which bacteria can thrive in your digestive system. Studies have shown that eating a Mediterranean, or whole-food plant-based diet, creates an environment where Prevotella and other healthy bacteria can flourish. Fiber and other components of whole plant foods and sometimes referred to as ‘prebiotics’ because they feed the “good” bacteria in the gut, which may be beneficial for people with PD.

Can eating well alter the course of PD?

Scientists know a lot about the molecular changes that underlie Parkinson’s. You may have heard of alpha-synuclein, the protein that forms clumps in brain cells, oxidative stress, mitochondrial dysfunction, and inflammation. The search is intense for therapies that can stop or reverse these processes. Can nutrition or dietary choices do anything to change them or alter the course of PD?

Some laboratory and animal research suggest that diet could have an effect, especially plant-based foods like fruits, vegetables, legumes, nuts and seeds. Every plant-based food contains hundreds of chemicals called phytochemicals. These are not nutrients, but substances that may, alone or in combination, affect many of the processes thought to be involved in PD including oxidation, chronic inflammation, protein aggregation and mitochondrial dysfunction.

Phytochemicals have not been proven to change disease progression in people with PD, but neither is there typically any harm in eating a diet that includes whole, unprocessed plants. This diet has proven benefits for preventing heart and vascular disease and can reduce PD symptoms, like constipation and risk of cognitive change. 

The best way to increase anti-oxidants and anti-inflammatory compounds in your blood and brain is by eating plants — all the different parts of them. Choose fresh, or frozen whole foods and avoid boxed or canned foods as much as possible. There is no one food that is best — aim for variety every day. And be sure to include nuts and seeds. Sprinkling a tablespoon of ground flax seeds on other foods is a simple way to improve your diet.

Healthy Eating with PD

Eating a whole food, plant-based diet, often called a Mediterranean diet, can help you live well with PD. Eat what you need to eat to be happy — but also eat more of the food that is good for your health.

If you have Parkinson’s, every healthy lifestyle change can help. Choosing to eat well also leads to a feeling of empowerment that helps you in your daily life with PD. While it can be challenging to eat better, most people make minor diet changes gradually that become major changes over time. Always consult your physician before making major changes.

To learn more about nutrition and Parkinson’s, visit Parkinson.org/Nutrition.

Learn more by tuning in to our podcast episodes “The Role of the Microbiome in PD: Part Two” and “Nutrition Advice - Part 2.”