Advancing Research

What's Hot in PD? Should I get a DaTscan or PET scan to confirm my diagnosis of Parkinson’s disease?

Doctor showing brain scans

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. 

DaTscan example 1

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.  

DaTscan example 2

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:

Dr. Michael S. Okun

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.

Advancing Research

What's Hot in PD? Will Drinking Tea Help My Parkinson’s Disease?

Drinking tea together

Tea is an ancient, centuries-old beverage that is consumed by virtually all of the world’s population. Tea is composed of polyphenols, methylxanthine, caffeine, fats, amino acids and other substances. Tea has been thought to reduce cancer risk, prevent heart disease and even aid in weight loss. The flavonoids, caffeine and theanine have been tested in animal models of Parkinson’s disease and have shown protection against cell loss in similar areas of the brain that are affected in the human Parkinson’s patient. In this month’s What’s Hot in PD?, we will examine what is known about tea and Parkinson’s disease.

A recent meta-analysis of all studies on tea and Parkinson’s risk revealed that across 1,418 cases and 4,250 control patients, there was a protective effect of tea drinking on Parkinson’s disease risk. Interestingly, whether you drink one or more cups a day did not impact the risk (1,2,3)

Louis Tan, one of the authors of the Singapore Chinese Health study, reported differential effects of black versus green tea. People in his study who drank at most one cup of black tea a day (but not green tea) decreased their risk of developing Parkinson’s disease. Caffeine also reduced the risk of Parkinson’s disease. This study lends support to the mounting evidence supporting a caffeine Parkinson’s-related benefit. Interestingly, most black teas have more caffeine than green teas (1,2,3).

What should patients understand about coffee and tea drinking and Parkinson’s disease? Consumption of coffee or tea seems to reduce the risk of developing Parkinson’s disease. Once you have been diagnosed with Parkinson’s disease, no matter how much time you spend in Starbucks, you can no longer alter your risk profile. The cat is out of the bag. Consumption of caffeine in moderate doses does however seem to benefit the motor symptoms of Parkinson’s disease. A nice cup of tea might just be what the Parkinson’s doctor ordered.

Dr. Michael S. Okun

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.

Tips for Daily Living

Parkinson’s Disease and Strength Training: Benefits

Women exercising with weights

Exercise is vital for improving balance, mobility and overall health in persons diagnosed with Parkinson's Disease (PD). PD is the second most common neurological disease in the world(1). It is characterized by a deficit in dopamine resulting from a progressive loss of neurons in areas of the brain responsible for movement and coordination(2).

Recently, literature has demonstrated that participating in strength training regularly can improve symptoms, make dopamine use more efficient and possibly even slow the progression of PD! In this article, we will look at why strength training has benefits specific to PD, and discuss ways to make it safe and fun.

Why Exercise?

Exercise is amazing because it changes the way our brain functions. Studies have shown that in people who regularly exercise, brain cells use dopamine more efficiently. This occurs because areas of the brain responsible for receiving dopamine signals – the substantia nigra and basal ganglia, are modified. Exercise also increases the number of D2 receptors in the brain, meaning dopamine has more places to go. Additionally, researchers at the University of Pittsburgh were able to demonstrate that in animal models, exercise increased the amount of a neurotrophic factor called GDNF, which helps protect dopamine neurons from damage(3).

Choose Strength Training

The benefits of strength training include increasing muscular strength, endurance, dynamic balance and cognitive functioning. Recent studies have demonstrated that there are decreases in gross muscular strength in people diagnosed with PD, most notably in the back and hip extensors4. Researchers have speculated that this occurs secondary to postures developed throughout the course of the disease. As people begin to hunch their shoulders and lean forward instead of standing upright, postural muscles become weaker. When postural muscles become weaker, it is more difficult to balance, or recover from perturbations. This increases the likelihood of falling. Strength training is an excellent, safe way to increase strength, stability and confidence for those with PD.

Where to Start

Beginning a new exercise program can be intimidating at first. My suggestion is to find a fitness buddy – a friend or family member to start with, and help you stick to your program. Then, do your research. Build a strong program, and execute it with good form. A great resource for learning to perform exercises correctly is Exrx.net. You can also consult a local fitness expert, or ACSM guidelines for strength training. When exercising, be sure to focus on all 5 major muscle groups – chest, back, legs, arms and core (abdominals).

Tips for Exercising Safely

  1. Check with your doctor before beginning any new exercise program, and continue to take all medications prescribed by doctors. Strength training is not an alternative to medication.
  2. Make sure you hydrate! Drink water before, after and during your exercise to feel better and stay safe.
  3. Bring a copy of your workout with you, so you don't forget any exercises!
  4. Progress slowly. Make goals, and work towards them by perfecting your form and starting with light weights first. Remember, all good things take time. Have patience and enjoy the ride!

Danielle Leshinsky is a Certified Strength and Conditioning Specialist (CSCS) and a doctoral candidate at Emory University School of Medicine's DPT program. She is currently researching with Dr. Madeleine Hackney and the Atlanta VA Center for Visual and Neurocognitive Rehabilitation , looking at the effects of Tango on Parkinson's Disease. She is also working in the INSPIRE laboratory at the Emory Rehabilitation Hospital. Danielle chose to pursue a career in physical therapy because she finds it both challenging and rewarding. She plans to obtain a Specialist Certification in Neurology upon graduation in May 2016.

Tips for Daily Living

Tips for Daily Living: Protect Yourself From Skin Cancer

Woman sitting outside in the sun

Summer is the time for long drives, late sunsets and the outdoors. However, direct and prolonged exposure to the summer sun can also result in sunburns and over time, skin cancer. Skin cancer is the most common cancer in the U.S. and it is even more of a threat for people with Parkinson’s disease (PD) because they have a higher risk of developing malignant melanoma.

Skin cancer is preventable. Taking proper precautions and knowing what to look for can save your life. If promptly treated, early-stage melanoma can have a nearly 100 percent cure rate.

Here are some ways you can enjoy the sun year-round while protecting yourself from its rays:

Use sunscreen with a sun protection factor (SPF) of 30 or more. Apply sunscreen daily before leaving your house, year-round. If you drive often, keep sunscreen in your car so that you can apply it to your hands before driving.

Examine yourself from head to toe. Melanoma can occur in hidden spots that can be easily overlooked. Once a month, look for odd marks and black spots on your skin and nails. Ask a loved one to help you for the areas you can’t see.

Know your spots. Look for a skin growth, mole or beauty mark that changes in size, color or texture.

Protect yourself from sun exposure. Wear protective clothes and a hat. Sunscreen alone may not be enough to protect you from direct sunlight.

Schedule a yearly screening with a dermatologist. At your annual visit ask your dermatologist for a skin cancer screening. During the visual inspection point out any abnormal spots.

Be mindful of medications that increase sun sensitivity. The medication label or warning would list the drug as sun-sensitizing. These medications can increase your chances of sunburns.

Use sunscreen when around reflective surfaces. Water, snow and sand all reflect sun rays and increase sun exposure. Even in winter, these surfaces increase your odds of getting a sunburn.

Get treated. If diagnosed with skin cancer, get treated right away. Early-stage melanoma has a 98 percent survival rate.

Learn more by reading our Skin Changes article.

Science News

New Evidence Links Traumatic Brain Injury with Parkinson’s

Science News Blog header

A new study finds that traumatic brain injury from a blow to the head, with loss of consciousness, may increase a person’s risk of developing Parkinson’s disease (PD) later in life. The results appear in the July 11 online edition of JAMA Neurology. The researchers did not find an association between head injury and Alzheimer's disease.

The neurological effects of head injuries are much in the news, with worry over repeated, relatively mild, concussions among athletes, and with the recent death of boxing great Muhammad Ali, who lived with Parkinson's disease. This new study, however, focused narrowly on the long-term effects of even one instance of trauma to the head — especially injuries involving loss of consciousness — among older people more representative of the general population.

Researchers led by Paul K. Crane, M.D., M.P.H., at the University of Washington in Seattle, analyzed self-reported data, collected between 1994 and 2014, from 7,130 people who had enrolled in other studies that gathered data on memory, cognition and aging. On average, study participants were 80 years old at the time of this report, and did not have dementia, PD, or Alzheimer’s disease when they enrolled in the original studies. Forty percent were men. Brain tissue was examined on autopsy for 1,589 participants, to search for signs of PD and Alzheimer’s disease.

Results

  • Eight hundred sixty-five study participants reported having had a traumatic brain injury with loss of consciousness at some time in their lives.
  • During the time study participants’ health was followed, 117 new cases of PD were diagnosed among the total of 7,130 participants.
  • A past traumatic brain injury with loss of consciousness longer than an hour was associated with three and a half times increased risk of developing PD.
  • History of traumatic brain injury was also associated with the accumulation of Lewy bodies in brain cells, the toxic clumps of alpha-synuclein protein that are the hallmark of PD.
  • Traumatic brain injury was not associated with mild cognitive impairment (MCI)|, dementia, Alzheimer’s or brain changes associated with Alzheimer’s.
  • Microinfarcts — microscopic strokes in the brain that may be a cause of dementia — were found more often in the brains of people who had traumatic brain injury that lost consciousness for more than one hour.

What Does It Mean?

Head injuries are common, even among non-athletes. Earlier studies have suggested that they might be related to developing Alzheimer’s.

But the new research found instead that just one traumatic brain injury with loss of consciousness of more than one hour was associated with Parkinson’s, and not Alzheimer’s. Although most people recover to normal functioning after a traumatic brain injury, this study suggests that the consequences from even a single head injury may take decades to develop.

The finding underscores the importance of preventing head injuries. It also suggests that additional research to understand the relationship between brain injury and Parkinson's, and why they are linked, might provide ideas for possible interventions for reducing risk of PD.

Beth Vernaleo Ph.D., Associate Director of Research Programs, PDF added, “While previous research has linked head injuries to neurodegenerative disease, this study illustrates a more specific finding — that a single blow to the head causing a loss of consciousness for more than an hour, even in one’s 20s, may lead to a three-fold increased risk of Parkinson’s decades later. Although the vast majority of people who experience head injury will not develop Parkinson’s, this study may provide clinicians with an additional diagnostic tool. For example, asking patients about history of head injury, amongst other symptoms and risk factors, may prove a valuable means of ascertaining the likelihood of a PD diagnosis.”

Raise Awareness

Expert Care Experience: Dance/Movement Therapy

Group of people dancing at exercise class

This blog is the fifth in a series detailing the roles of each member of a comprehensive care team, covering social workoccupational therapy, speech-language pathology and physical therapyLearn more about the healthcare professionals that are part of a comprehensive care team and how you can put your care team together today.

What Is Dance/Movement Therapy?

Dance/movement therapy is a form of psychotherapy that uses movement, in all forms, as a means of observation, assessment and intervention in the therapeutic relationship. Unlike dance, dance/movement therapy does not focus on a stylized choreography, specific set of skills or technique. Instead, it allows individuals to move and find comfort in their bodies and to express what words might be too difficult to uncover.

Dance/movement therapy can help support people with Parkinson’s disease (PD) in the moment, even when it is hard to be present to physical sensation and symptoms.

What Do You Do During a Dance/Movement Therapy Session?

There is no one-size-fits-all session, though there are some common basic components. In an individual session, you will likely start with a warm-up where the therapist guides you through movements, from head to toe.

You will be encouraged to move each body part, no matter how small. This allows you to become more aware of your body and experience your capacity for movement. Next, the therapist will coach you to use your body to express behaviors and thoughts or to explore movement patterns and preferences.

Group sessions might incorporate elements from a support group, a social dance or mindful movement class. For example:

When asked how she felt at the beginning of the dance/movement therapy group, Sally reported feeling isolated, standoff-ish and unsure of her ability to participate because of her tremor and poor balance. The therapist invited Sally to show what that looked like using her body. Sally slumped over in her chair, crossed her arms and lowered her gaze. Sally then lifted her chest, looked up to the ceiling and threw her arms up in the air. With a smile on her face, Sally said, “A weight has been lifted. Now, I feel free!”

Who Is a Dance/Movement Therapist?

Dance/movement therapists are registered or board-certified individuals with a master’s degree in dance/movement therapy. Depending on where they practice, dance/movement therapists may be clinical counselors, social workers, creative arts therapists or psychologists. Most have a background in psychology and dance, with a focus on dance as an outlet for mental health and expression. Dance/movement therapists are required to fulfill clinical internships in such settings as hospitals, treatment facilities, day programs, nursing homes, day schools or even private practice.

A dance/movement therapist is an integral part of the care team because he/she can mesh clinical counseling or social work with movement observation and assessment. The therapist’s keen ability to observe the relationship between movement and mental health helps foster a more holistic, mind-body approach to medicine.

Dance/movement therapists receive referrals from other care team members and often co-treat, co-facilitate and collaborate with them. As part of the team, your dance/movement therapist should communicate with other care team members about treatment plans, symptom management and disease progression.

What Symptoms Can Dance/Movement Therapy Help Treat?

Dance/movement therapy addresses motor and non-motor symptoms of Parkinson’s. It focuses on balance, coordination, gait and mobility, but also uses movement to address depression, digestive complications, anxiety and fatigue.

Furthermore, dance/movement therapy encourages individuals to prioritize their mental health. Embracing the arts as a mode of psychotherapeutic intervention and expression seems to help reduce stigma around mental health issues.

Research specifically on dance/movement therapy with PD is taking off. For example, Northwestern University in Illinois recently conducted a study on the effects of dance/movement therapy on fatigue in people with PD. More researchers are becoming interested in this topic, so expect to hear more about the impact of dance/movement therapy in the future. In the meantime, try it for yourself.

How Do I Find a Therapist or Program?

Dance/movement therapists and programs are all over the country. To find one nearest you, go to The American Dance Therapy Association’s website at www.adta.org. You can find a list of resources and a directory of therapists in your area. The toll-free Parkinson’s Foundation Helpline can also help connect you to information and resources: 1-800-4PD-INFO (473-4636).

Dance/movement therapy is often a wonderful complementary or adjunct therapy for individuals affected by movement disorders. Some dance/movement therapy sessions may be covered by private health insurance, which can make it an affordable and accessible option for treatment of symptoms and maintenance of quality of life. 

Erica Hornthal, LCPC, BC-DMT, is CEO of Chicago Dance Therapy. She is a clinical counselor and board-certified dance therapist who specializes in working with individuals living with movement and cognitive disorders. Additionally, Erica works with people of all ages and abilities to connect the mind and body to promote self-awareness, self-expression, healthy attachments, compassion and improved quality of life. 

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

Tips for Daily Living

Tips for People with Parkinson’s Who Want to Take Over the Counter Medications During Flu Season

Picking out medication

People with PD often tell us that when they get sick with cold and flu-like symptoms, their pharmacist and healthcare professionals warn them to stay away from the medication aisle of the pharmacy. They are told that any over-the-counter medication has the potential to worsen Parkinson’s symptoms. Unfortunately, many people interpret this potential worsening as a recommendation to never use these medications.

Also contributing to this issue is a series of reports that medications such as anticholinergics (like Benadryl) may cause acute confusion and even contribute to long-term cognitive changes. It is important to keep in mind when selecting a cough or flu medication that the intent is not to treat long-term issues.

This flu season we wanted to provide the PD community with some tips to help you navigate Parkinson’s while simultaneously addressing cold and flu symptoms:

  • If memory or thinking problems are present, take caution with drugs that may be sedating (such as Sudafed) or that contain an anticholinergic (for example, Trihexyphenidyl, Benadryl, Cogentin, Parsitan). Because of memory and thinking issues, anticholinergics are only rarely used to address cough and cold symptoms.
  • Cough syrups with pain medication (such as codeine) could lead to memory issues, thinking problems or sedation. If you take one of these medications your memory and thinking should be monitored as confusion could lead to falls and other negative consequences.
  • Pain medication (such as meperidine) can interact with other medications and can result in sedation.
  • It may be useful to temporarily stop monoamine oxidase (MAO-B) inhibitor drugs (such as selegiline, rasagiline, safinamide) to avoid drug-drug interactions with cyclobenzaprine, dextromethorphan (often found in cough medicine), meperidine (also sold as Demerol), methadone, St. John's wort or the pain medicine tramadol. Talk to your doctor before making changes to your medications.
  • Psuedoephedrine, phenylephrine and phenylpropanolamine can be found in any cold or flu medication and could increase blood pressure and possibly increase the risk of stroke, especially in those with high blood pressure.
  • Aspirin, acetaminophen and other nonsteroidal anti-inflammatory drugs are usually safe, but can have side effects (particularly gastrointestinal).
  • Antihistamines can sometimes cause drowsiness, but many people with PD can tolerate them for short courses.

In 2014, Kim Painter wrote a great article in the USA Today to help individuals and families stay safe in the cold and flu aisle.

Here are some of Kim’s tips:

  • Treat only symptoms you have and be wary of multi-symptom products.
  • Know your dose and don’t overdose.
  • Know your health risks (for example, decongestants can cause blood pressure spikes, especially if you have hypertension; acetaminophen can lead to liver damage for heavy alcohol users).
  • Don't double up and accidentally take two medicines with similar ingredients.
  • Consider trying alternatives (rest, fluids, saline nasal sprays, salt-water gargles, honey for cough).

Where does this leave people with Parkinson’s when they find themselves in the medicine aisle? The most important take home is that it is possible to take over the counter medications if you have Parkinson’s disease. However, there are potential risks and benefits, as well as strategies and alternatives that may also address cold and flu concerns.

Dr. Michael S. Okun

The commonly used strategy of telling a person with Parkinson’s to suffer through cold and flu symptoms may not always be the best strategy. Working through a solution with your healthcare team makes a lot of sense and can alleviate some of the discomfort associated with cold and flu-like illnesses.

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.

Advancing Research

What’s Hot Medication Edition: Exenatide and Gocovri

Taking medication

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. 

Advancing Research

What's Hot in PD? Should We Be More Aggressive in Preventing Weight Loss in Parkinson’s disease?

Older man talking to nurse

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.
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Dr. Michael S. Okun

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.

Advancing Research

Depression and PD: A Non-Drug Treatment Option

Cells

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.

CBT: How to Find a Therapist

  • Ask your doctor or neurologist for a referral
  • Ask support group members for referrals
  • Call the Parkinson’s Foundation’s free Helpline at 1-800-4PD-INFO (473-4636) 

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.
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