To offer more support to the nearly one million people in the U.S. living with Parkinson’s disease (PD), the Parkinson's Foundation has expanded its Helpline hours. You can call with the Helpline with your PD questions at 1-800-4PD-INFO (473-4636), in English and Spanish, Monday through Friday from 9 a.m. to 7 p.m. ET.

The Parkinson’s Foundation Helpline provides guidance on:

• current disease information
• medical issues including symptoms and treatments
• health and social care
• emotional support
• referrals to local health professionals

We recently asked the trained Parkinson's information specialists who answer Helpline calls to share the answers to the most frequently asked questions below. If you have a question that is not listed below, please call our Helpline!  

Q: Can the Helpline provide me with Parkinson’s specialists, exercise classes and support groups? 

A: Yes. The Helpline can provide names of Parkinson’s movement disorder specialists, neurologists and other Parkinson’s specialists — like a physical therapist, occupational therapist, speech therapist and more — in your area. Helpline specialists can also provide nearby exercise classes and support groups.

Q: Is there a special diet that can help with my Parkinson’s?

A: A balanced, nutritious diet is important in Parkinson’s. The best plan is to maintain a full diet with all the daily nutritional requirements — try to eat lots of fruits and vegetables, lean proteins and whole grains. Many doctors recommend the Mediterranean diet for its ability to help reduce blood pressure and cardiovascular disease. Also, try to drink plenty of water to help with constipation.

Q: My family member told me about a vitamin/supplement/tea that can relieve PD symptoms. Does it work?

A: Many people add vitamins to their treatment regimen, incorporating antioxidants such as vitamin B6, vitamin E, vitamin C, Coenzyme Q10, glutathione, in the hope of slowing the disease. Be wary of new supplements that claim to cure multiple symptoms, as they often lack rigorous testing. Since Helpline specialists stay up-to-date on PD treatments, call to discuss any supplement you hear about.

Q: Should I not eat protein when I take carbidopa/levodopa (brand name Sinemet)?

A: Most people who are newly diagnosed will not have a problem. For some people, particularly those living with PD for many years, eating protein-rich foods limits the effectiveness of levodopa. Most people who have trouble with Parkinson’s related to a diet high in protein report that their medications are not working. Levodopa works best when taken on an empty stomach. Taking it 30 to 45 minutes before eating can help.

Q: As the primary caregiver, I find myself frequently feeling overwhelmed and unable to keep up with my own needs. What should I do?

A: Up to 70 percent of caregivers are significantly stressed and half meet the criteria for clinical depression. Take immediate action when you find you are ignoring your own needs, feel isolated, experience anxiety, resentment, demoralization or depression. Try to alleviate caregiver stress by recruiting friends and family or hiring a paid caregiver to help with care. Don’t wait, and get help managing caregiver-related anxiety, stress or depression by seeing a psychologist or therapist. Remember that you need to take care of yourself to be well enough to take care of others.

Q: Is there financial assistance available for people with Parkinson’s?

A: While the Foundation does not give financial aid, Helpline specialists provide referrals to organizations that may be able to help with financial assistance for medication, transportation, basic needs and respite or nursing home care. A good place to start is to locate your nearest Area Agency on Aging office through the Eldercare Locator Service for help finding financial aid and related programs. Our specialists can also give information about various government social service programs.

Q: What other therapies can help with my Parkinson’s symptoms?

A: A comprehensive and multi-disciplinary approach to health care can be very beneficial at any stage of Parkinson’s. Building a healthcare team involves taking advantage of not only the expertise of a PD specialist, but the help of a physical therapist, occupational therapist, speech therapist, nutritionist, social worker and others. Some may be able to find all of these professionals in one practice or center, but many will have to explore their community’s resources.

While we are happy to discuss any issue with you, calling our helpline is not a substitute for seeing a doctor.

No one should have to face Parkinson’s alone. Call the Parkinson’s Foundation Helpline today at 1-800-4PD-INFO (473-4636) or email us at Helpline@Parkinson.org with your Parkinson’s questions in English or Spanish.

This isn’t a solicitation for a financial donation. But I am going to ask for something valuable that is in short supply and critical to getting an approved therapy to slow the progression of Parkinson’s disease (PD), and move us closer to a cure. It is something you can do to improve the lives of people with PD and take an active role in the Parkinson’s community. Only you have the power to do this. 

The discovery that clumping of a misfolded protein in the brain (called alpha-synuclein) causes loss of dopamine neurons and dysfunction in other areas of the brain and nerves that control bodily functions provides opportunities for new Parkinson’s therapies. The research community is excited that preventing this protein clumping process or clearing these toxic clumps may be able to slow or stop the progression of Parkinson’s disease.

However, we still don’t have biomarkers, such as a blood test, that allows us to assess PD progression and test promising therapies in people with PD. Therefore, our best opportunity to test a new potential disease modifying therapy is to see if it can slow progression of PD signs and symptoms in people who were recently diagnosed with early PD and who are not taking symptomatic medications (like levodopa, dopamine agonists, amantadine, or MAO-B inhibitors).

But this poses a difficult challenge! Those diagnosed with early PD based on a combination of bradykinesia (slow and small movement), rigidity (stiffness) and tremor (shaking), can usually only go about six to twelve months before they will want or need medication to relieve symptoms.

Ideally, researchers would like to observe patients in a clinical trial to test a potential disease slowing medication immediately following diagnosis, and for as long as possible. This gives us the best chance of identifying a difference in the rate of progression between those treated with active (“real”) study medication and those treated with placebo. The shorter the testing period, the more difficult it is to identify the beneficial effect of a disease slowing medication. Conversely, the longer the testing period, the more obvious a slowing effect should be.

However, if the proposed time period to test the new medication is too long, many patients will need symptomatic treatment, and researchers will lose their ability to monitor clinical disease progression. Therefore, most trials of potential disease slowing medications in early PD observe patients for about six months to a year.

The key problem is that patients with early PD who are able and willing to enroll in a clinical trial, and whose PD symptoms are mild enough to go up to a year before starting symptom medications are in short supply. To test promising disease slowing therapies, patients with early PD must be identified as early as possible and referred to centers hosting a clinical trial before beginning symptomatic PD medications. Unfortunately, this process fails too often. Patients often wait to seek treatment until their symptoms become troublesome. After all, why see a doctor when you don’t need treatment? However, research-wise it is then too late to participate in an early PD disease slowing trial. Additional unwanted delays may also occur between the time it takes to make an appointment and be seen.

In another disappointing scenario, patients with early PD are diagnosed and immediately placed on symptom medication, even though it’s not immediately required. The doctor may do so instinctively and without considering the lost research opportunity. Of course, immediately beginning medication may be necessary in cases where progression has been swift or if necessary to maintain employment.

The critical time of about one year from an early PD diagnosis until symptom medication is required is called the “Golden Year” for participation in disease slowing clinical trials. It is critical that care providers and patients don’t unknowingly waste this Golden Year.

Therefore, I ask this of care providers and patients:  

Care Providers: When you diagnose early PD, please don’t unnecessarily institute symptomatic therapy. Evaluate whether a clinical trial for early untreated PD patients is being conducted within a reasonable distance and discuss the possibility of participating with your patient. At a minimum, let your patient know that there are early PD disease modifying trials being conducted and they may want to learn more about the trials before beginning therapy. Centers conducting such trials would be delighted to discuss ongoing trials with your patient.

Patients: If you have new onset of tremor or slowness, or if a care provider says you may have PD, don’t wait until your condition worsens to the point that you feel you need treatment. Seek evaluation with a specialist as soon as possible. If you are diagnosed with PD, ask about clinical trials. Search online for open trials you can enroll in by visiting ClinicalTrials.gov and Parkinson.org/ClinicalTrials. In addition, if you are diagnosed with PD and your doctor wants to begin medication immediately, consider seeking a second opinion from a center that conducts clinical trials. If you explain that you were recently diagnosed and interested in learning about clinical trials that center will often quickly provide you with an appointment.

Our ability to test promising new potential disease slowing therapies depends on both patients and health care providers understanding the critical value of the Golden Year in PD. I hope that individuals with early PD will consider participating in clinical trials, and the earlier, the better.

The journey to a cure will likely be incremental. If a medication does not work, we want to find out, discard it, and move on to other promising new therapies. Once we demonstrate that a therapy can slow disease progression, we will want to improve on it or find other therapies that can also slow progression and perhaps use them together.

We also need to ensure that clinical trials are designed to meet the needs and priorities of the PD community. This can only be done by working with people with PD to design and implement clinical trials, such as is done in the Parkinson’s Foundation Parkinson's Advocates in Research program. This model of patient engagement in research is being increasingly mandated by regulatory agencies and study sponsors as critical to the research process. Finally, we must be sure study participants and people with PD involved in research represent the diverse PD population to ensure that new treatments benefit the greater PD community. Once we can slow disease progression sufficiently and can identify patients early enough (even before the onset of slowness, stiffness and tremor), the result will be equal to having a cure. 

This article was written by Robert A. Hauser, MD, MBA, University of South Florida Parkinson's Disease and Movement Disorders Center, a Parkinson’s Foundation Center of Excellence. Dr. Hauser’s primary research interest is in the development of new medical and surgical treatments for Parkinson's, tremor, tardive dyskinesia, dystonia, and restless legs syndrome. 

As your Parkinson’s disease (PD) journey evolves, so do your questions about symptoms, treatment options, research and medications. Whether you live with Parkinson’s or care for someone who does, you are not alone in looking for answers to your big PD questions.

The Parkinson’s Foundation has recently released Frequently Asked Questions: A Guide to Parkinson’s Disease, a new and improved booklet that provides answers to the most frequently asked questions our Helpline receives. Pro tip: every section in the booklet provides additional free resources you can check out to learn more. Order the free book now, read it online or check out some questions and answers below:

Q: Can Parkinson’s be cured?

A: Not yet. However, many PD symptoms can be treated and researchers are making advances in understanding the disease, its causes and how to best treat it.

Q: What are the stages of Parkinson’s?

A: The stages of Parkinson’s correspond to the severity of movement symptoms and to how much the disease affects a person’s daily activities. At all stages of Parkinson’s, effective therapies are available to ease symptoms and make it possible for people with PD to live well.

• Mild Parkinson’s: movement symptoms, often tremor, occur on one side and may be inconvenient, but do not affect daily activities. Regular exercise improves and maintains mobility and balance, it also reduces depression and constipation.
• Moderate Parkinson’s: movement symptoms occur on both sides of the body. The body moves more slowly and trouble with balance and coordination may develop. Regular exercise combined with physical or occupational therapy can help with mobility and balance.
• Advanced Parkinson’s: a person may have great difficulty walking; may be in a wheelchair or bed most of the day. The person will need assistance with all daily activities. Balancing the benefits of medications with side effects becomes more challenging.

Q: How can I find a doctor who can treat Parkinson’s?

A: Treating Parkinson’s requires a team approach involving the person living with Parkinson’s, family members, a physician and other healthcare professionals. People with Parkinson’s are best served by a movement disorder specialist who is an expert in all aspects of the disease, knowledgeable regarding the full range of treatment options and familiar with the cutting edge of clinical and scientific research. The ideal Parkinson’s physician is available to provide advice and care. Our Helpline at 1-800-4PD-INFO (473-4636) can help you find your nearest Parkinson’s specialist.

Q: Is it okay to drink alcohol?

A: Consult your doctor first. Generally, moderate consumption (an occasional drink) should be acceptable for people with PD, if there are no medical conditions or medications that prohibit alcohol use.

Q: Are there any new Parkinson’s drugs on the horizon?

A: There are always several promising new pharmaceutical compounds “in the pipeline” of discovery or development. New surgical approaches and gene therapies for Parkinson’s are also currently being tested. If you are interested in testing new Parkinson’s drugs, consider participating in a clinical trial.

Q: How can I get involved with PD research?

A: You can consider becoming a research advocate and educating your PD community about clinical studies or the development of new therapies. Advocate for funding PD research by joining the Parkinson’s Foundation Parkinson’s Advocates in Research (PAIR) program is a network of research advocates who work to bring educated consumer voices to important issues in Parkinson’s therapy development. 

Visit Parkinson.org/Library or call our free Helpline at 1-800-4PD-INFO (1-800-473-4636), to order Frequently Asked Questions along with any of our educational materials and to speak to a 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.

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?

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.