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. 

Slow and steady weight loss is a known feature of Parkinson’s disease. Weight loss may initially be a positive and popular disease related feature. However, as patients dip below their ideal body weight, this may possibly impact quality of life and other outcomes (Akbar, 2015). In this month’s What’s Hot in PD?, we will discuss a recent article on weight loss in Parkinson’s disease.

In this month’s issue of Neurology, the Parkinsonism Incidence in North-East Scotland (PINE) focused on weight loss (Cumming 2017). The study examined newly diagnosed patients and followed them, as well as matched controls, longitudinally for about five years. Of 515 participants and 240 controls, 187 had Parkinson’s disease and 88 had atypical parkinsonism (diagnoses such as Progressive Supranuclear Palsy, Multiple System Atrophy or Corticobasal Degeneration). In general, both Parkinson’s disease and atypical parkinsonism cases had lower body weights and lost weight faster when compared to controls. Atypical parkinsonism cases had the lowest body weights and most rapid weight loss. Older age was the factor that was most associated with weight loss; however, in cases with weight loss in the first year, there was a strong association with dependency on a caregiver, dementia and death (Okun, 2017).

The PINE study, along with other recent publications on weight loss in Parkinson’s disease and atypical parkinsonism, would suggest that we need to become more aware of this issue. Your doctor should track your weight at each visit and consider the possibility of intervening with dietary changes to address any weight loss. Whether any intervention could potentially affect outcomes remains unknown and it will be important for researchers to pursue a prospective randomized study. Finally, if you have one of the atypical forms of parkinsonism you may need to be more aggressive in addressing weight loss.

Selected References

1. Cumming K, Macleod AD, Myint PK, Counsell CE. Early weight loss in parkinsonism predicts poor outcomes: Evidence from an incident cohort study. Neurology. 2017 Nov 28;89(22):2254-2261. doi: 10.1212/WNL.0000000000004691. Epub 2017 Oct 27. PubMed PMID: 29079685.
2. Mun JK, Youn J, Cho JW, Oh ES, Kim JS, Park S, Jang W, Park JS, Koh SB, Lee JH, Park HK, Kim HJ, Jeon BS, Shin HW, Choi SA, Kim SJ, Choi SM, Park JY, Kim JY, Chung SJ, Lee CS, Ahn TB, Kim WC, Kim HS, Cheon SM, Kim JW, Kim HT, Lee JY, Kim JS, Kim EJ, Kim JM, Lee KS, Kim JS, Kim MJ, Baik JS, Park KJ, Kim HJ, Park MY, Kang JH, Song SK, Kim YD, Yun JY, Lee HW, Song IU, Sohn YH, Lee PH, Park JH, Oh HG, Park KW, Kwon DY. Weight Change Is a Characteristic Non-Motor Symptom in Drug-Naïve Parkinson's Disease Patients with Non-Tremor Dominant Subtype: A Nation-Wide Observational Study. PLoS One. 2016 Sep 13;11(9):e0162254. doi: 10.1371/journal.pone.0162254. eCollection 2016. PubMed PMID: 27622838; PubMed Central PMCID: PMC5021347.
3. Akbar U, He Y, Dai Y, Hack N, Malaty I, McFarland NR, Hess C, Schmidt P, Wu S, Okun MS. Weight loss and impact on quality of life in Parkinson's disease. PLoS One. 2015 May 4;10(5):e0124541. doi: 10.1371/journal.pone.0124541. eCollection 2015. PubMed PMID: 25938478; PubMed Central PMCID: PMC4418600.
4. Okun MS. Poor Outcome Associated with Weight Loss in Parkinson’s Disease and Parkinsonism. New England Journal of Medicine Journal Watch Neurology, 2017.

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.

It is estimated that at least 50 percent of people living with Parkinson’s disease (PD) experience depression at some time during the course of their disease. The Parkinson’s Foundation Parkinson’s Outcomes Project found that taken together, mood, depression and anxiety have the greatest impact on health status, even more than the motor impairments commonly associated with the disease.

The sadness and hopelessness that accompanies depression make the challenges of living with PD even greater. The good news is that depression is a Parkinson’s symptom that can be controlled. No one chooses Parkinson’s, but they can choose how to cope with it.

Learn the skills that will empower you take control of your mood, worry less and find meaning in daily life. These skills are modeled on a non-drug therapy called cognitive behavioral therapy, which has been found to be helpful for Parkinson’s-related depression. To cope with depression, you can put these skills into action.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about depression, hosted by Roseanne D. Dobkin, PhD, from Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School.

What Is Cognitive Behavioral Therapy?

Cognitive behavioral therapy (CBT) is a non-drug approach to developing the skills and actions that change patterns of thought and behavior related to depression.

Many factors can cause a person to become and stay depressed. How people think and interpret what goes on around them influences how they feel. As does behavior — what people do, or don’t do, in response to the stresses of life.

Depression can also have a biological cause. Brain changes that underlie PD may contribute to depression. However, it is important to remember that biology is not the only cause; thoughts and behaviors play a significant role. These three factors influence one another and intervening anywhere in the interconnected cycle can help treat depression.

Setting Goals to Change Behavior

The first step in positively changing behavior is to make plans and set goals for activities. Emotions can take control when feeling depressed or anxious. Instead, set clear goals and let these action plans guide you. Think strategically about increasing your involvement in meaningful activities — avoiding being busy for the sake of it. Goals should be small and realistic.

Focus on three areas when goal-setting:

1. Exercise. Identify a reasonable daily exercise goal, whether it’s Tai Chi or seated exercises. Ask for guidance from a physical or occupational therapist.
2. Socialize. Keep social goals small and do-able. Don’t jump to hosting a dinner party, instead try simple things like answering the phone or saying hello to a cashier.
3. Self-soothe. Take time every day for an activity that will lead to a positive emotion — something that just feels good. For instance, relax with a cup of hot tea, take a bath or listen to music.

While planning activities that guide your day, consider these questions:

• Are there things you used to love to do that fell off the radar with a PD diagnosis? Consider re-introducing those activities.
• If the daily activities you used to enjoy are no longer feasible, are there new activities that can replace them?
• Can you modify an activity that used to be enjoyable?

Dr. Dobkin’s friend Howard used CBT to gradually take control over and improve his mood. Howard was a career firefighter. Five years into his PD diagnosis, he was no longer physically able to fight fires. He became depressed and withdrawn, cutting off ties with his firefighter friends, who were like family to him.

During therapy, Dr. Dobkin and Howard tested different ways he could re-connect with his friends. First, he went to a chili dinner — and it wasn’t embarrassing like he thought it would be. Then, he began attending (not participating in) weekly training sessions and pool games at the firehouse. Gradually, Howard began to reconnect. He even helped with the fire department’s fundraising campaign. He realized that even though he couldn’t ride a fire truck, he could stay connected and contribute in many meaningful ways.

Tips to help you set daily goals:

• Make them small and meaningful.
• Choose activities that make you feel productive and satisfied.
• Plan around your physical limitations and “off” time.
• Pace yourself.
• Be flexible. If you can’t walk for 30 minutes, start with 15.
• Ask your doctor for referrals to physical, occupational and speech therapy.

Examine Negative Thoughts to Achieve Balance

When depressed or anxious, thoughts tend to include a lot of negative predictions — the typical response is to think that things will not go right. Most of the time, these predictions are not accurate. Yet, negative thoughts influence what people do and how they feel.

Cognitive behavioral therapy aims to recognize, analyze and test negative thoughts, evolving them into a more balanced, healthier mindset.

Try this cognitive behavioral therapy technique:

• Write down negative thoughts. For example, “my PD makes my friends uncomfortable.”
• Share the thought with a loved one and discuss it together.
• Recognize that it is your opinion and ask, “do others share my perception? Is there evidence against it? Is there an alternative explanation?”
• Revise your thought or prediction in a way that helps you cope with the challenges of PD more objectively.
• Fight the urge to think in worst-cases.

If possible, find a way to test your thinking. Perhaps you think you can’t eat at a restaurant because of your tremor. Find out. Make plans to test your thought. Increase your chances of success by taking your symptoms into account — for example, go when the restaurant is not crowded, order food you don’t need to cut or ask for a lid and straw for your drink.

Then see what happens. Identify what worked. Can you revise your original negative thought? Going forward, try using more balanced, accurate thoughts to guide how you feel and what you do during the day. Healthy thoughts will help you cope effectively with PD, whereas destructive ones derail your efforts.

Care Partners

Caregivers play an essential role in supporting people with PD who cope with depression. Research has shown people with Parkinson’s using CBT have more improvement in their depression, and for longer, when their care partners receive educational sessions on CBT. Additional benefits for people with PD included less anxiety, fewer negative thoughts and better ability to reframe them, more social interaction and better motor function. The more a loved one was involved with therapy for a person with PD, the better the outcome. 

Reinforcing Success

For a person who is depressed, taking action is hard. A surprising effect of cognitive behavioral therapy is that it is self-reinforcing. Set small, specific goals and let the goal guide your behavior, no matter how you feel. When you feel a glimmer of success, your enthusiasm to do more will kick in. A small change in activity can improve a person’s mood. A better outlook can inspire more activity, and a more objective assessment of the future.

Conclusion: Don’t Suffer in Silence

Your mood is a critical aspect of living with PD that you can control. Talk to your friends, family, and doctor about your mood. Any feelings of sadness or hopelessness that negatively impact your day deserve attention. If symptoms are severe, you and your medical team might consider one of the many antidepressant medications. But effective, non-drug treatments also are available, both in combination with drug therapies and on their own. If you are depressed, speak up and seek help.

For more information on depression, anxiety and treatment, read the Parkinson’s Foundation book, Mood: A Mind Guide to Parkinson's Disease or call the foundation’s free Helpline at 1-800-4PD-INFO (473-4636) to speak with a Parkinson’s specialist.

Tips for Better Sleep to Help Ward Off Anxiety and Depression

• Go to bed and get up at around the same time every day.
• Use the bed for sleep only.
• Limit daytime naps.
• Don’t lie in bed unable to sleep for long periods — get up and do something else until you feel tired, then try to sleep again.
• Limit caffeine and alcohol in the evening.
• Read more tips.

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.

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

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

What’s in Marijuana?

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

The best-known plant-based cannabinoids are:

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

Marijuana Research

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

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

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

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

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

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

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

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

Warning: Synthetic Marijuana

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

Clinical Studies

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

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

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

Side Effects

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

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

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

Guidelines for Medical Marijuana and Parkinson’s

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

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

Conclusion

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Every year, the top Parkinson’s experts from around the world who treat people with Parkinson’s at a Parkinson’s Foundation-designated Center of Excellence (a department or clinic within a hospital that specializes in PD) convene to discuss the latest Parkinson’s research and treatments. This article summarizes the 2018 Center Leadership Conference presentation on art therapy led by art therapist and consultant Kimberly Faulkner, ART-BC, LCAT. Read the articles covering some of the other topics discussed, such: intimacy issues, new therapies in trial, oral health and music therapy. 

Center coordinators play a critical role in the Parkinson’s Foundation Center of Excellence network. Not only do they support research activities, coordinate clinical trials and plan outreach services; they act as the liaison between the Parkinson’s Foundation, the center’s care team and patients. They advocate for a multidisciplinary approach to PD care, and work with all members of the care team to make Foundation resources available to patients and their families.

While center coordinators stay up-to-date on the latest PD treatments, they rarely get to experience them firsthand. That’s what made their session about the benefits of art therapy for people with PD so unique; after watching an educational presentation, coordinators from around the world picked up their paint brushes and became art therapy session participants.

Even if someone with PD has not picked up a paint brush since grade school, art therapy can help improve physical, psychological and social functioning.

Symptoms reported to improve with art therapy include:

• Tremor: About 70 percent of people with PD experience tremors at some point of the disease. Stress, as well as fatigue and intense emotions, can temporarily make tremors worse. Most people find art therapy relaxing, and therefore an effective way to reduce tremor in times of stress.
• Freezing: Some people with PD experience the temporary, involuntary ability to move, called freezing. Because art therapy introduces novel motions that are not part of everyday life, it conditions your body to operate less on autopilot, which decreases likelihood of freezing.
• Impaired speech: Art therapy is a powerful communication tool that creates avenues of self-expression that are invaluable to those struggling with speech problems. Even if participants do not have speech problems, it can sometimes be easier to express difficult thoughts and feelings visually instead of verbally.
• Isolation and depression: About half of people with PD can experience some form of depression during the course of the disease. Art therapy creates a sense of community and emotional support that can alleviate feelings of isolation that often make depression more likely.

After coordinators finished their art therapy session, they said they felt relaxed and reconnected with their past as their paintings reminded them of loved ones and allowed them to express themselves through color and shape. They learned that the joy found in art therapy is through the experience rather than the completed artwork. Many admitted that their final piece was far from what they had intended — a butterfly turned into a stingray; a fish evolved into an abstract masterpiece.

Kimberly Faulkner, the art therapist leading the session, encouraged her participants to share their paintings and experiences with their patients when they returned to their centers. “It may give someone else the opportunity to talk about their concerns, fears and anxieties because as adults, we want to make sure everything is so put together and organized,” Kimberly said. “But at some point, we’re all making a mess here and there and that’s okay.”

To find a Parkinson's wellness class near you, contact the Parkinson’s Foundation toll-free Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Upcoming Programs and Webinars

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

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

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

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

Latest Parkinson’s Research

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

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

Resource Corner

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

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

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

About subcutaneous apomorphine treatment

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

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

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

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

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

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

What is the bottom line for the PD community? 

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

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

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

Selected References:

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

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