There are more than 110,000 veterans living with Parkinson’s disease (PD). The Parkinson’s Foundation is interested in the differences between those who receive care at the Veteran’s Health Administration (VHA), a government organization within the Veteran’s Administration (VA) that provides primary and specialized healthcare to veterans of the U.S. military, and the veterans who receive care elsewhere.

A Parkinson’s Foundation survey sought to understand the health status, demographics, and health care utilization of veterans living with PD. The goal was to uncover differences between those who received care within the VHA versus those outside of the VHA.

In the U.S. today, there are more than 19 million veterans, yet less than half of these veterans receive care through the VHA. It is important to find out how care can be improved and in what areas care needs to be improved in order to provide the best possible care for veterans living with PD.

Survey Results

Demographics

The Parkinson’s Foundation distributed the survey to 1,532 veterans living with PD in July 2021 and analyzed 409 complete responses. Survey participant demographics include:

• Responses from 47 states
• Average respondent age was 74 years
• Average amount of time living with PD is 7 years
• Primarily white males with around 94% of respondents being white and 92% being male.
• Respondents were mainly retired (85%)

Health Service Utilization

Only one-fifth of participants reported receiving care from the VHA. Among those who utilized care from the VHA, 23% did not know that the VHA offered specialized care. Among all respondents:

• 77% reported seeing a neurologist specializing in PD
• 75% reported being given a referral for either physical therapy, occupational therapy, speech language pathology or mental health therapy from their PD provider
• Physical therapy was the most common referral (67%)

Mental Health

One in three respondents reported mental health concerns in the previous 12 months. Those receiving care at the VHA were more likely to report mental health concerns and were more likely to report poorer mental health, but were also more likely to talk about their mental health concerns with someone (a doctor, friend, family member, etc.).

Reported Falls

Among all respondents:

• One out of five reported falling frequently
• Two out of five reported having frequent near falls
• One-fifth of those who experienced one or more falls, did not report the fall(s) to anyone.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Explore the below Parkinson’s Foundation resources for veterans and their loved ones:

• Veterans and Parkinson’s Disease
• Parkinson’s Foundation Surveys

Diversifying genetic data can help accelerate the pace of Parkinson’s disease (PD) research and get us closer to finding a cure. In our latest Neuro Talk, Parkinson's Foundation Associate Vice President of Research Programs Anna Naito, PhD, shares early results from PD GENEration: Mapping The Future of Parkinson’s Disease. Dr. Naito also highlights what the Parkinson’s Foundation is doing to reach new populations and to increase diversity in genetics research.

Watch the latest Parkinson’s disease videos on our YouTube channel.

Movement disorder specialist and researcher Matthew Burns, MD, PhD, works to improve health outcomes for people with Parkinson’s disease (PD) from two distinct but complementary angles.

Dr. Burns diagnoses and treats patients with all forms of parkinsonism while pursuing lab research focused on the mechanisms of PD and its number one risk factor — the aging brain.

Dr. Burns’ patients at the Norman Fixel Center for Neurological Diseases at the University of Florida, a Parkinson’s Foundation Center of Excellence, benefit from innovative PD care, while the broader community benefits from his scholarly contributions to the field of neuroscience.

“It is an exciting time in neurology, compared to even a generation ago,” said Dr. Burns. “Across the spectrum, there is a greater appreciation that investment in research creates real, meaningful returns.”

The Parkinson’s Foundation has advanced the training of specialized Movement Disorders Specialists like Dr. Burns through the Movement Disorders Fellowship Program.

Awards are made to institutions to support two-year training of a fellow. Since the distribution of the first award in 1980, the Foundation has invested more than $15 million toward the training of more than 150 movement disorders neurologists.

Selected by the University of Florida as a recipient of this Fellowship in 2018-2020, Dr. Burns received training and mentorship on the complex motor and non-motor manifestations of Parkinson’s and other movement disorders.

Dr. Burns explained that most academic fellowships are 12 or 24 months, and that young researchers must complete clinical training, establish collaborations, technical expertise and gather preliminary data to get a grant that supports their research time by month 25. “If you miss this short window of opportunity as a young faculty member, even if you have a strong interest in research and are quite motivated, you have significant clinical obligations that make it very difficult to continue doing this kind of work,” Dr. Burns said.

“In contrast, my fellowship funded by the Parkinson’s Foundation and the supportive environment at University of Florida were both critical in garnering the necessary funding, resources and tools that set the stage for success,” said Dr. Burns.

Dr. Burns was initially inspired to pursue PD research and care during medical school, as he witnessed his parents’ close friends — Uncle Jim and Aunt Pat — struggle with complications of Jim’s PD.

“Uncle Jim was an accomplished trial attorney — public speaking and his public persona were very important to him; his memory was iron-clad. His debilitating non-motor symptoms like memory loss were a significant burden on him and Aunt Pat,” said Dr. Burns. “It had a real impact on me, and I realized how important it was for physicians and researchers to try to address not just the motor symptoms of PD, but also the non-motor symptoms.”

Dr. Burns’ research interests include investigating co-pathologies in PD, where other diseases intersect with PD and cause atypical, often non-motor, symptoms. He is also investigating the processes of aging. Dr. Burns recently received funding from the National Institute on Aging to advance understanding of the root processes that produce aging, and how aging affects cognition in PD.

“How the aging process interacts with disease, and produces the symptoms that we see in clinic, is not well understood at all. Additionally, aging affects performance at work, interactions with family, and quality of life. The research community has begun to focus on aging and particularly how to modulate this physiologic process to produce better health with advanced age and extend lifespan for humans.”

In the last several years, Dr. Burns has studied non-invasive forms of deep brain stimulation in rat models of PD with the potential capacity to slow or stop disease progression. “Really what is lacking in the field is disease modifying therapies, which get at the underlying causes of Parkinson’s. There are a whole host of technologies that have evolved in deep brain stimulation that hold some promise of doing just that,” Dr Burns said. “Early-stage clinical trials of such treatments in humans holds significant promise.”

Dr. Burns, who maintains his connection to the Parkinson’s Foundation as a speaker at educational events, credits the Foundation for being a comprehensive, reliable resource for his patients.

“The Parkinson’s Foundation offers a forum to ask questions, interact with others who are going through the same thing, and connect with physicians and institutions that are doing comprehensive care and translational research in this area,” Dr. Burns said. “The Foundation truly functions as the connective tissue for all these collaborations in the field, and that has a tremendous effect on my patient’s lives.”

Find a movement disorders specialist in your area at Parkinson.org/Search or call the Helpline at 1.800.4PD.INFO (1-800-473-4636).

In 2011, the FDA approved a diagnostic test for Parkinson’s disease. The DaTscan (Ioflupane I 123 injection, also known as phenyltropane) is a radiopharmaceutical agent which is injected into a patient’s veins in a procedure referred to as SPECT imaging. DaTscan, when it was approved, was considered an important addition to the armamentarium of the bedside clinician. In 2011 I wrote a What’s Hot column on DAT scanning, and this month I will update that posting and bring everyone up to date on the impact of this test.

One of the most frequently asked questions about Parkinson’s disease is whether or not to pursue DaT or PET scan to confirm a diagnosis of Parkinson’s disease. The short answer is that the DaT test is over-used in clinical practice, and is only FDA approved to distinguish potential Parkinson’s disease from essential tremor. In fact, the test only tells the clinician if there is an abnormality in the dopamine transporter, and does not actually diagnose Parkinson’s disease (could be parkinsonism). PET is also overused, though it can be a more powerful diagnostic tool when in the right expert hands.

If you have already received a diagnosis from an expert, and are responding well to dopaminergic therapy, in most cases of Parkinson’s disease, PET and DaT scans would not add any new information, and may prove unnecessary. In cases where the expert is not sure of the diagnosis – is it essential tremor or Parkinson’s, for example-- or where a potentially risky procedure is being considered (e.g. deep brain stimulation surgery), it is reasonable for your doctor to recommend a PETscan or DaTscan. It is important to keep in mind that PET and DaT scans should be performed only by experienced neurologists who have executed a large volume of Parkinson’s disease scans, because experience is important in accurately reading the imaging results. One important update is that DAT scans can and have been misread since the FDA approval in 2011. The reason DAT scans can be misread is because the interpretation is performed entirely by the eye (there are no hard numbers to make the diagnosis). This type of “qualitative” interpretation is subject to error. We always recommend that the interpretation be performed in the context of the clinical symptoms of the patient, and when in doubt to get a second opinion from a Parkinson’s expert.

Here is how the scanning process works for DaT: First, the PD patient receives an injection of the imaging agent. After injection, the compound can be visualized by a special detector called a gamma camera. This scan measures something called the dopamine transporter (DaT), and it can help a doctor determine if patients are suffering from essential tremor vs. Parkinson’s disease or another parkinsonism (i.e., other problems affecting dopamine systems that have symptoms that look like Parkinson’s disease). The side effects if they occur are minimal (e.g. headache, dizziness, increased appetite and creepy crawly feeling under the skin). PET scans and DaT/SPECT scans examine the "function" of the brain, rather than its anatomy (appearance). This is an important point because unlike in strokes and tumors, the brain anatomy of a Parkinson’s disease patient is largely normal. These scans can reveal changes in brain chemistry, such as a decrease in dopamine, which may help identify Parkinson’s disease and other kinds of parkinsonism. There are several compounds available for use in both PET and SPECT scanning; however PET scans typically focus on glucose (sugar) metabolism, and DaT/SPECT scans focus on the activity of the dopamine transporter. 

The new DaT scans use a substance that "tags" a part of a neuron in the brain where dopamine attaches to it, thus showing the density of healthy dopamine neurons. Thus, the more of the picture that "lights up", the more surviving brain cells. Dark areas could mean either Parkinson’s disease or parkinsonism.

In Parkinson’s disease, people will lose cells in a part of the brain associated with movement referred to as the basal ganglia. There is a common pattern seen in people with Parkinson’s, with the cell loss starting on just one side, towards the back of the basal ganglia. Over time, the affected area spreads across the entire region. However, as part of the typical aging process, it is normal to lose some of these cells—therefore it takes an expert to read these scans and figure out if the changes are due to normal aging or due to disease. There are typical scan patterns that may emerge. The more widespread the decrease in uptake on the scan, the more advanced the degeneration.

Interpretations of DaT scans can be tricky. The first determination is whether the scan is normal or abnormal. Next, the expert will determine if the scan follows the pattern of Parkinson’s disease or parkinsonism. Finally, a determination will be made as to the severity of the brain cell loss.

PET scans are FDA-approved for the diagnosis of dementia, but not for the diagnosis of Parkinson’s disease. However, if you or your relative has cognitive impairment, the scan can be ordered to examine for the presence of Alzheimer’s changes, as Parkinson’s disease can co-occurs with Alzheimer’s. The cost of a PET scan ranges from $2,500-5,000. Many expert centers perform PET scans for free under research protocols.

Recently, in studies that have attempted to diagnose Parkinson’s early in its course, researchers have found that a subset of patients thought to have Parkinson’s disease have turned up with negative PET or DaT scans. These patients do not seem to develop the progressive symptoms of Parkinson’s disease. The findings are humbling, and they lend credence to the importance of following patients over long periods of time to ensure both accurate diagnosis, and also appropriate treatment. 

An example DaTscan is shown below and it demonstrates essential tremor on the left (normal DaT), and a parkinsonian syndrome on the right (decreased DaT).

An example of a PET scan is below and it reveals: in the top panel a normal scan, in the middle panel abnormalities in the putamen (red uptake in the figure) in a patient with Parkinson’s disease, and in the lower panel a return to an almost normal scan following the introduction of levodopa.

In conclusion, in cases where the diagnosis is uncertain (e.g. Parkinson’s disease versus essential tremor), a DaT or PET scan can be very useful. Patients and their families need to be aware that in general, these scans cannot reliably separate Parkinson’s disease from parkinsonism (multiple system atrophy, corticobasal degeneration, progressive supranuclearpalsy), and thus if you seek a scan you will still need an expert to sort out your clinical picture and eventual diagnosis. If you have already been diagnosed, and your symptoms are progressing, and you have an adequate response to medications, a PET or DaTscan will add little new information and therefore will not be necessary. A scan should never replace a clinical examination, and findings should be correlated to the symptoms of an individual patient. Since the interpretation of these scans is often qualitative (by the eye, especially with DaT), a second opinion in uncertain cases can be helpful.

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

One of the most common questions that we receive on the 1-800-4PD-INFO Helpline is “when should I start medications for my Parkinson’s disease.” This months What’s Hot in PD column will focus on this simple, but critically important question.

The most important factor in initiating medications for an individual patient is whether Parkinson’s symptoms are affecting quality of life, or alternatively whether symptoms are affecting work performance. Bothersome Parkinson’s symptoms commonly include motor issues (tremor, stiffness, slowness, walking, and balance problems), and/or non-motor issues (depression, anxiety, sexual dysfunction, other issues). Most experts agree that there is no benefit to delaying medication therapy if bothersome symptoms appear, and there may be risks in delaying treatment, especially if a treatment delay results in unsteadiness, falls, and fractures.

Over the last 10-20 years the thinking has evolved on when and how to initiate medication therapy for early Parkinson’s disease. Most experts agree that the medication dosage and the timing of the medication dosage should be carefully monitored in order to maximize the control of potentially responsive Parkinson related symptoms. The recommendation that patients should be started on dopamine agonist instead of levodopa (Sinemet) has faded over the last decade, especially with the emergence of impulse control disorders and other dopamine agonist associated side effects.

The best advice we can offer Parkinson’s disease patients is to not fear treatment, and to especially not fear dopaminergic therapy. Sinemet and other Parkinson’s therapies have not been shown to be toxic or to accelerate disease progression. Dopamimergics never “stop working,” however they may require adjustment over time. If Parkinson’s disease symptoms are affecting quality of life, the work performance, or if there exists a risk of falling, treatment should be initiated. Many practitioners will start with a MAO-B drug (selegiline, rasagiline, dissolvable selegiline, other), but Parkinson’s patients should be aware that the symptomatic effects of MAO-B’s are extremely mild. It is in fact rare to remain on this drug without other Parkinson’s drugs for any significant period of time. Dopamine agonists (ropinerole, pramipexole, cabergoline, rotigotine, others) and levodopa (Sinemet, Madopar) are both excellent choices for early Parkinson’s disease therapy. The choice of agent should however, consider the individual’s comprehensive medical picture (age, co-morbidities, types of symptoms, history of neurological/psychiatric issues) as therapy should never be viewed as a “one size fits all.” Finally, patients should remember that if depression, anxiety and other issues persist following dopaminergic treatment, then antidepressant therapy may also be warranted. 

Other drugs such as amantadine may be used early in Parkinson’s disease therapy, however most practitioners reserve amantadine for treatment ofdyskinesia which may or may not occur later in the disease course. Patients should keep in mind that exercise is like a drug, and that a daily routine is often a great symptomatic supplement to any medication regimen. Many practitioners wait to utilize physical therapy, occupational therapy, and speech therapy later in the disease, however these modalities can often be powerful treatments when employed early in the disease. Finally, all Parkinson’s disease patients should have a general practitioner and a dermatologist involved with their care. The reason for involving “other doctors” is because with adequate Parkinson’s treatment, they will be far more likely to encounter difficulties with other medical illnesses (heart disease, prostate cancer, breast cancer, melanoma, etc.). Melanoma occurs more frequently in Parkinson’s disease populations.

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

This past month, the FDA approved DaTscan (Ioflupane I 123 injection, also known as phenyltropane), a radiopharmaceutical agent which is injected into a person's veins in a procedure referred to as SPECT imaging. DaTscan is an important addition because it is anticipated to be more widely available than other techniques and it has received several major endorsements from leading scientists.

One of the most frequently asked questions about Parkinson's disease (PD) we receive is whether or not to pursue DaT or PET scanning to confirm a diagnosis of Parkinson’s disease. In this month’s What’s Hot column, we offer a review of the subject in light of the recent FDA approval.

If you have already received a diagnosis from an expert, and are responding well to dopaminergic therapy, in most cases of Parkinson’s disease, PET and SPECT scans would not add any new information and therefore likely to be unnecessary. In cases where the expert is not sure of the diagnosis — is it essential tremor or Parkinson’s, for example — or where a potentially risky procedure is being considered (e.g. deep brain stimulation surgery), it is reasonable for your doctor to recommend a PETscan or DaTscan. 

It is important to keep in mind that PET and SPECT scans should be performed only by experienced neurologists who have executed a large volume of Parkinson’s disease scans, because experience is important in accurately reading these imaging results.

Here is how it works:   

First, the person receives an injection of the imaging agent. After injection, the compound can be visualized by a special detector called a gamma camera. This scan measures something called the dopamine transporter (DaT), and it can help a doctor determine if patients are experiencing essential tremor, vs. Parkinson’s disease or another parkinsonism (i.e., other problems affecting dopamine systems that have symptoms of Parkinson’s disease). The side effects are minimal (e.g. headache, dizziness, increased appetite and creepy crawly feeling under the skin).

PET scans and DaT/SPECT scans examine the "function" of the brain rather than its anatomy.

This is an important point because unlike in strokes and tumors, the brain anatomy of a person with Parkinson’s disease is largely normal. These scans can show changes in brain chemistry, such as a decrease in dopamine, which identify Parkinson’s disease and other kinds of parkinsonism. There are several compounds available for use in both PET and SPECT scanning; however PET scans typically focus on glucose (sugar) metabolism, and DaT/SPECT scans focus on the activity of the dopamine transporter.

The new DaT scans use a substance that "tags" a part of a neuron in the brain where dopamine attaches to it, showing the density of healthy dopamine neurons.  Thus, the more of the picture that "lights up", the more surviving brain cells. If the parts of the brain where dopamine cells should remain dark in the scan, an expert reader may diagnose early brain degeneration.  This could mean either Parkinson’s disease or parkinsonism.

In Parkinson’s disease, people will lose cells in a part of the brain associated with movement referred to as the basal ganglia. There is a common pattern seen in people with Parkinson’s, with the cell loss starting on just one side, towards the back of the basal ganglia, and deep down.  Over time, the affected area spreads across the basal ganglia. However, as part of the normal aging process, it is completely normal to lose some of these cells — therefore it takes an expert to read these scans and figure out if the changes are due to normal aging or due to disease. There are typical scan patterns that may emerge. The more widespread the decrease in uptake on the scan, the more advanced the degeneration.

Interpretations can, however, be tricky.  The first determination is whether the scan is normal or abnormal.  Next, the expert will determine if the scan follows the pattern of Parkinson’s disease.  Finally, a determination will be made as to the severity of the brain cell loss.  There are only a few centers that regularly perform very high-quality PET scans for Parkinson’s disease, and these centers usually have experts in interpretation. Two centers with leading reputations include Long Island Jewish Hospital in New York (North Shore) and Washington University Hospital in St. Louis, although there are others.

PET scans are FDA-approved for the diagnosis of dementia, but not for the diagnosis of Parkinson’s disease. However, if you or your relative has cognitive impairment, the scan can be ordered to examine for the presence of Alzheimer’s changes as Parkinson’s disease often co-occurs with Alzheimer’s. The cost can range from $2,500-5,000.  Many expert centers perform PET scans for free under research protocols.

Recently, in studies that have attempted to diagnose Parkinson’s early in its course, researchers have found that a subset of people thought to have Parkinson’s disease have turned up with negative PET or SPECT scans. These people do not seem to develop the progressive symptoms of Parkinson’s. These findings are humbling, and they lend credence to the importance of following people over long periods of time to ensure both accurate diagnosis, and also appropriate treatment. 

An example DaTscan is shown below and it demonstrates essential tremor on the left (normal DaT), and a parkinsonian syndrome on the right (decreased DaT).   

An example of a PET scan is below and it reveals: in the top panel a normal scan, in the middle panel abnormalities in the putamen (red uptake in the figure) in a person with Parkinson’s, and in the lower panel a return to an almost normal scan following the introduction of levodopa.  

Conclusion

In cases where the diagnosis is uncertain (e.g. Parkinson’s disease versus essential tremor), a DaT or PET scan can be very useful. 

People with Parkinson's and their families need to be aware that in general, these scans cannot reliably separate Parkinson’s disease from parkinsonism (multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy), and thus if you seek a scan you will still need an expert to sort out your clinical picture and diagnosis. If you have already been diagnosed, if your symptoms are progressing, and you have an adequate response to medications, most likely a PET or DaTscan would add little new information and therefore not be necessary.

Conclusion

Explore these Parkinson's Foundation resources:

• 10 Early Signs of Parkinson's
• Getting Diagnosed
• Living with Parkinson's

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

People with Parkinson’s disease (PD) are in critical need of new, more effective therapies to treat the symptoms of the disease like dyskinesia and to stop its progression.

Currently, an anti-viral drug called amantadine is used off label to treat dyskinesia — episodes of involuntary movements of the arms, legs and head. But amantadine carries risk of side effects such as insomnia and hallucinations.

Fortunately, the U.S. Food and Drug Administration (FDA) approved Gocovri, an extended release amantadine preparation, to treat dyskinesia. It is the first drug FDA approved for this specific purpose. According to one randomized double-blinded and placebo-controlled study (the gold standard of research), patients who received Gocovri experienced improvements in their symptoms. Subjects were followed for six months. When patients were evaluated using the Unified Dyskinesia Rating Scale, a clinical scale for measuring response to therapies, the Gocovri group gained eight points over those in the placebo group. And two other recently published studies have confirmed the benefits of Gocovri for the treatment of dyskinesia.

Here’s What You Need to Know

Gocovri is a one-a-day treatment designed to limit side effects. However, because no head-to-head test of generic amantadine versus Gocovri has been done, we do not know whether this new formulation is more effective. Still, many studies show that amantadine — in any formulation —can be effective in suppressing dyskinesia. A recent Parkinson’s Foundation study found that regular release amantadine alleviated dyskinesia.

Overall, patients who are doing well on multiple doses per day of generic amantadine will likely not benefit from switching to one-a-day Gocovri. However, those experiencing side effects from amantadine now have another option. It could provide a one-a-day solution to dyskinesia that previously could only be managed with multiple doses per day.

A Diabetes Drug to Treat Parkinson’s

Recently a small study published in the journal Lancet suggested that Exenatide, a medication used to manage diabetes (more specifically, a glucagon-like peptide-1 receptor stimulator) may slow the progression of Parkinson’s. Exenatide is being studied as a neuroprotective pharmacological treatment for people living with Parkinson’s.

Exenatide has shown neuroprotective benefits in animal models, but not in humans. To see if this diabetes therapy has disease-modifying effects in people with Parkinson’s, British investigators performed a double-blind, placebo-controlled study on 62 patients. Of those, 30 received two-milligram injections of Exenatide, and 32 received a placebo once a week for four months. Both groups then stopped the study drugs for three months for what is called a “wash out” period.

The primary outcome was an improvement of motor symptoms, as measured on the Unified Parkinson Disease Rating Scale (a scale used in clinical studies to measure behavior, activities of daily life, motor symptoms and other components over the course of PD). A Parkinson’s motor score was calculated at the beginning of the study and after the intervention. Study results showed an improvement of one point on the Unified Parkinson Disease Rating Scale among the Exenatide group, and a decline of 2.1 in the placebo group.

Here’s What You Need to Know

This is an exciting finding suggesting Exenatide provides some neuro-protection to people with Parkinson’s. However, because the results of this small study are preliminary, there is not enough data to prove neuro-protection. The bottom line is that Exenatide is a promising drug, but larger trials are needed to determine if it indeed has disease modifying effects in people with Parkinson’s. 

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

JAMA Neurology, “Viewpoint”, 11/13/17

Authors: E. Ray Dorsey, MD, Department of Neurology, University of Rochester Medical Center, Rochester, NY; and Bastiaan R. Bloem, MD, PhD, Radboud University Medical Center, Department of Neurology, Nijmegen, the Netherlands.

In June 2017, the Parkinson’s Foundation brought together the thought leaders in the Parkinson’s community to discuss the future of Parkinson’s research at an event called, “World Without Parkinson’s” in New York City. At this event, Drs. Dorsey and Bloem stressed the importance of caring for people with Parkinson’s today, and the increasing need for systems to extend the reach and expand the scale of care.  They asked the audience: How can we shift the paradigm within the health care system to be more patient-focused?

People are at the heart of the issue.  At the World Without Parkinson’s event, Drs. Dorsey and Bloem pointed out that if you look at how public health and healthcare are changing lifespans around the world, the resulting growth in the over 65 population will effectively result in a pandemic of Parkinson’s disease. They have now published in JAMA Neurology, a major scientific journal, an opinion piece issuing a clarion call to action to make the voices of the Parkinson’s community heard. They pose the question: if the worldwide number of people with Parkinson’s disease (PD) will double from 6.9 million in 2015 to 14.2 million in 2040, do our efforts reflect the urgency commensurate with the challenge?  What are we doing to treat these millions of individuals to lead healthy lives?  They write that increasing access to care and increasing funds for Parkinson’s research are the answer.

For decades, the Parkinson’s Foundation has been educating and empowering people living with Parkinson’s and their families. We are at the forefront of improving lives for people with Parkinson’s today.  Starting with our focus on today’s patients through the first Parkinson’s advisory council and people with PD research training program, we have extended this vision to include the Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s ever conducted and the only major study with a singular focus on how to improve the lives of everyone living with Parkinson’s today. We ensure better care through our global network of 42 Centers of Excellence and we work to close the gaps in Parkinson’s care by training doctors, nurses, physical therapists, speech language therapists and social workers so they can provide better care to their Parkinson’s patients across the nation and around the world.

We will remain at the forefront of addressing disparities in Parkinson’s care and engaging patients to advocate for better care. As Parkinson’s reaches epidemic-like proportions, it’s clear that this work is more important than ever. We will continue to invest in research and improving lives until a world without Parkinson’s is in reach.

#WorldWithoutParkinsons

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

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

Milton Biagioni, MD, received a research grant to study the "At-home Non-Invasive Brain Stimulation for Fatigue and Cognitive Slowing" at The Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone, a Parkinson’s Foundation Center of Excellence. 

Q: Can you explain your study in less than 100 words?

A: I am studying the likelihood and usefulness of a portable, non-invasive, brain stimulation device to alleviate fatigue and cognitive slowing in people with Parkinson’s. These are two of the most prevalent symptoms responsible for disability and for reducing quality of life in people with PD. To date there are no proven effective treatments available for either symptom. In this study we use a specially designed transcranial direct current stimulator (tDCS) device through a new method of remote supervision. The therapy is done in the participant’s home through video-conferencing.

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

A recent study by Inga and colleagues at the Mount Sinai Beth Israel Parkinson’s Foundation Center of Excellence in New York examined the incidence of Parkinson’s disease in inflammatory bowel disease patients. The authors were also interested as to whether exposure to anti-tumor necrosis factor therapy (anti-TNF) could possibly reduce the risk of the later development of Parkinson’s disease. In this month’s What’s Hot in PD? blog we will discuss the links between inflammatory bowel disease and also examine the intriguing possibility that anti-TNF or related approaches may one day be used as Parkinson’s disease treatments.

The idea that inflammation is an important factor in the development of Parkinson’s disease is not new and systemic inflammatory diseases may provide an important clue to pathogenesis. There are almost two million people in the United States suffering from inflammatory bowel disease and there has been great interest in its potential links to neurodegeneration. The LRRK2 (leucine-rich repeat kinase 2) gene is a well-established risk factor for Parkinson’s disease. LRRK2 has also been strongly linked to Crohn’s disease, and this link has raised the question as to whether there is a relationship between inflammatory bowel and Parkinson’s disease. Ulcerative colitis is the other common inflammatory bowel disease, and although much less is known about its links to Parkinson’s disease there has been recent interest in exploring this area. Many inflammatory bowel disease studies include both Crohn’s disease and ulcerative colitis patients.

Inga and colleagues, in a recent issue of JAMA Neurology, examined administrative health insurance claims from approximately 170 million people (Truven Health MarketScan administrative claims database and the Medicare Supplemental Database) and observed that inflammatory bowel disease patients were 28% more likely to develop Parkinson’s disease. Even more intriguing was the observation that exposure to anti-TNF therapy was associated with a 78% reduction in Parkinson disease incidence.

Though the studies were observational and the results derived from analysis of data from health insurance claims, the idea that systemic inflammation plays a key role in Parkinson’s disease is intriguing. Anti-TNF or other anti-inflammatory therapies may be candidates for future clinical trials.

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.