Raise Awareness

Parkinson’s Foundation Hosts First Parkinson’s Symposium in Puerto Rico

raising hands in a conference

Claudia Martinez, MD, Hispanic Outreach Coordinator at the Muhammad Ali Parkinson Center in Phoenix, AZ, a Parkinson’s Foundation Center of Excellence, did not hesitate when she was asked to join the planning committee for the first Parkinson’s Foundation conference held in the Caribbean. She knew how important this conference would be for the community and what a massive impact it would have on those living with Parkinson’s on the island.

woman at Parkinson’s Foundation conference

The goal of the conference was to listen to and understand the needs of the Puerto Rico Parkinson’s disease (PD) community and provide information and resources to help people live better lives. The event also sought to establish a network for people with PD and local organizations that provide support.

The committee’s first action was to contact PD organizations and leaders in Puerto Rico. They would need to find speakers who were Spanish-speaking health professionals who understood the challenges faced by everyone in the PD community.

Weeks before the conference was to take place, Hurricane Maria hit Puerto Rico. All 3.3 million people on the island were affected. The Foundation quickly accounted for committee members and their families who lived in Puerto Rico, but many of them had lost their homes and left the country while infrastructure was being rebuilt.

Women at Parkinson's Foundation conference

While the island recovered from the category 4 hurricane, the conference committee moved ahead, choosing a new date and revising their plan. “We knew this would be a big challenge,” Dr. Martinez said. “We decided to continue because now more than never Puerto Rico needed us.”

“When we arrived in Puerto Rico on April 28, we saw the PD community’s enormous needs firsthand. It was amazing to see how people came together, and regardless of the situations they had at home, did their best to attend the conference,” said Clarissa Martinez-Rubio, PhD, co-organizer and Parkinson’s Foundation’s Director of Research and Centers Programs, who was born and raised on the island.

woman at Parkinson’s Foundation conference

As caregivers, people with PD and healthcare specialists arrived at the conference room, they were welcomed by Foundation staff and a goody bag full of books and resources. Everyone was eager to participate and ready to learn.  

All 250 participants grew silent as the first speakers took the stage. Ramon Rodriguez, MD, born in Puerto Rico and now working at UCF Health, and Angel Viñuela, MD, from Dorado, Puerto Rico, are two neurology specialists with a PD focus. They explained the different stages of PD.

Dr. Martinez-Rubio then spoke about the bilingual resources and services the Parkinson’s Foundation provides, such as the HelplineAware in Care kiteducational books and website. She also highlighted the importance of patients being active participants and advocates in their own care and within their community.

woman at Parkinson’s Foundation conference

Over lunch, patients and family members enjoyed a concert while health professionals underwent a training session led by Fernando Cubillos, MD, Parkinson’s Foundation director of research programs, on neurogenic orthostatic hypotension.

Next, physical therapist Betsaida Cruz, PT, and language therapist Leslie Ledee spoke about the role of exercise and the positive impact of therapies on people with Parkinson’s. They guided the crowd through a series of exercises to help them get a better understanding of speech therapy.

Keynote speaker Alfredo Ruiz, who is living with PD, closed the symposium. Alfredo rode his stationary bike throughout his speech, sharing his powerful story of personal growth. Alfredo not only motivated the audience, but helped them see the connection between passion, persistence and empowerment.

“This is a remarkable effort and we are thankful for that,” conference participant Aura Jimenez said.

Dr. Martinez-Rubio made it a point to speak to multiple people with PD, caregivers and health professionals. “Everyone approached me with gratitude; they were immensely thankful because they felt we gave them hope,” Claudia said. “The energy in the room was powerful. I was able to feel how people were empowered and motivated to continue working for their health and their quality of life.”

Iris Ortiz was thrilled to be given the opportunity to attend. “Thank you for guiding us and giving us information about Parkinson’s and for dedicating your time to create educational activities like this conference to help improve quality of life for us,” Iris said.  

“I participated in every activity and they were all a complete success,” said attendee Didi Alice Fatmagul. “I hope to see you all soon.”

The conference was made possible by support from Lundbeck and Abbvie.

Raise Awareness

Painting with Parkinson’s: All About Art Therapy

Woman painting

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 issuesnew therapies in trialoral 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.

woman painting

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.

group of women doing paint night

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

Advancing Research

Parkinson’s Disease Featured at the 2018 Quality and Safety in Nursing International Forum

Talking to a nurse

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.

Gerry with John Baumann

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

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, 2018 QSEN Forum

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).

Advancing Research

What’s Hot in PD? Choosing Between Subcutaneous Apomorphine Infusions, Intestinal Pumps (Duopa) and Deep Brain Stimulation: Implications of the TOLEDO Trial

stethoscope

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.

Science News

Elastic Abdominal Binders May Prevent Dizziness on Standing

Parkinson's Foundation Science News blogs

Wearing an elastic abdominal binder (a medical version of a girdle available in most drugstores) may help prevent low blood pressure on standing in people with Parkinson’s disease (PD), according to research published in the November 27 online edition of Movement Disorders Clinical Practice.

PT stretching a man

Many people with mid- and late-stage PD experience a sharp drop in blood pressure when standing up from a sitting position. This symptom is also common among people living with the atypical parkinsonism known as multiple system atrophy (MSA). The medical term for it is neurogenic orthostatic hypotension (nOH), and it can make a person feel dizzy, lose their balance and fall or even lose consciousness. Treating orthostatic hypotension with drugs that raise blood pressure is tricky — the medicines can prevent dizziness when standing up, but can make blood pressure too high when lying down.

Studies in people with other conditions that lead to orthostatic hypotension, including diabetes, have suggested that wearing an elastic abdominal binder — a wide elastic band that supports the stomach — helped them maintain a steady blood pressure.
Researchers led by Klaus Seppi, M.D., at the Innsbruck Medical University in Austria tested the treatment in 15 study participants who had PD and orthostatic hypotension. First, they monitored each study participant’s blood pressure during a “tilt test,” during which participants lay on a flat examining table, which is then raised to a seated position. Then participants wore either an elastic abdominal binder or a placebo binder — one that did not put pressure on the abdomen — for two hours and repeated the test. On a different day the participants switched binders and were tested again. Then all participants wore the elastic binders a few hours a day for four weeks and were assessed again.

Results

  • On average, blood pressure was about 10 mm Hg higher when participants sat up wearing the elastic abdominal binder versus the placebo binder.
  • Lying-down blood pressure remained the same no matter which binder the participants wore.
  • Using an elastic abdominal binder daily for four weeks improved symptoms of orthostatic hypotension.

What Does It Mean?

The study authors conclude that elastic abdominal binders may provide a simple tool to alleviate the troublesome PD symptom of orthostatic hypotension. For some, it may be worth trying because it involves no drugs that might interact with other PD medications, and there is no risk of raising overall blood pressure in people whose blood pressure is already generally high.  
Limitations of the study include the fact that the number of study participants was small and the study was not double blinded (participants knew which group they were in).

In addition, one side effect that remains to be investigated is the possibility that abdominal binders exacerbate varicose veins in the legs. Therefore, a larger, controlled trial will likely need to be performed before abdominal binders receive broad endorsement. In the meantime, talk with your physician to see if you might benefit from this simple tool to help manage orthostatic hypotension.

Advancing Research

Update From our Chief Scientific Officer + Ways to Engage in Research

Every day, potentially groundbreaking Parkinson’s disease (PD) research ideas are explored in labs funded by the Parkinson’s Foundation. Since research never stops, I am excited to share our latest Parkinson Report newsletter with you that focuses on a topic that is critical to the Foundation and our community: research.

In this special issue, we are excited to announce four new Research Centers. These centers will receive Foundation funding dedicated to developing the latest in treatment and better understanding this disease. Read more about these centers and how we will work together to find the next PD breakthrough.

Scientists play a critical role in advancing Parkinson’s treatments. More than 500 scientists have received funding from the Parkinson’s Foundation, like James Dahlman, PhD (page 9), who conducts thousands of drug delivery tests at the same time.

In addition, learn more about the future of PD research with these articles:

neurotalk-blog-jim

We are optimistic and excited to fund the most innovative and dedicated research initiatives among those new to our field and experts, alike. It is only a matter of time until we evolve precision treatment, revolutionize therapy options and ultimately, cure Parkinson’s.

Sincerely,

James Beck, PhD
Chief Scientific Officer
Parkinson’s Foundation

Five ways to engage in research infographic
Raise Awareness

Feel the Rhythm: Music Therapy and Parkinson's Disease

Group of people singing

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 music therapy led by Concetta M. Tomaino, DA, LCAT, MT-BC, Executive Director and Co-Founder of the Institute for Music and Neurologic Function in New York City. Read the articles covering some of the other topics discussed: intimacy issuesnew therapies in trial and oral health.

Music therapists are professionals who are academically trained and board certified to improve the everyday lives of their patients. More specifically, when people with Parkinson’s disease (PD) work with a music therapist they see improvements in movement symptomsspeech, cognitive issues and mental health. Through dance programs, choirs and drumming programs, music therapy helps people with PD maintain function, express creativity and experience a better quality of life.

Music therapy can help someone with PD with:

  • Balance: Stride length, posture and side-to-side movement can improve with music therapy.
  • Communication: Singing can increase volume and articulation, as well as swallowing function. Humming exercises can relax tense vocal folds.
  • Cognition: Singing lyrics can improve memory issues. Music-based cues can help with recall, recognition and attention span.
  • Mental Health: People with PD often experience anxiety, fatigue, sleep problems, depression and more. Music allows for self-expression and self-discovery that can combat these feelings.
  • Social Isolation: Music therapy, particularly group activities, allow for building connections with others, which can help with isolation.

What does a Parkinson’s music therapy class consist of? Led by a music therapist, a group class generally begins with a vocal warm-up that can be accompanied with drumming or hand instruments. While each class varies, they can include singing songs while following lyrics displayed on a large screen, singing familiar songs to motivate participants and jog memories, and singing exercises. Music therapy can also include dancing or seated exercises that help people with PD maintain range of motion, endurance, strength, coordination and balance.

Music therapy uses rhythm, melody and preferred movement to address issues that commonly affect people with PD, such as bradykinesia (a slowness of movement that can lead to difficulties with activities of daily living).

Why is rhythm so effective? Rhythm becomes a template for organizing a series of movements, as well as combat cognitive issues that affect movement function, such as attention and focus. Rhythm helps coordinate movement, stimulate attention spans and induce relaxation.

As long as participants can feel the beat, music therapy can help lead to better outcomes in physical exercise programs. Sometimes finding that is a challenge, but a music therapist can work to find a rhythmic pattern or musical style that resounds with you — making music therapy both effective and enjoyable.

For more information about music therapy or where to find a music therapist near you, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

Tips for Daily Living

The Basics of Oral Health and Parkinson’s

Man brushing his teeth

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 oral health by neuroscientist Cameron Jeter, PhD, The University of Texas Health Science Center at Houston; speech-language pathologist Linsey Heidrick, MA, CCC-SLP, University of Kansas Medical Center; geriatric dentist Marsha Pyle, DDS, University of Missouri-Kansas City; and moderator Irene Litvan, MD, UC San Diego School of Medicine. Read the articles covering some of the other topics discussed: intimacy issuesart therapynew therapies in trial and music therapy

Maintaining oral health is important for people with Parkinson’s disease (PD). Parkinson’s symptoms can easily complicate dental care. A panel of PD experts at a Parkinson’s Foundation conference recently discussed oral health and saliva management – two PD-related issues not discussed often enough.

When it comes to Parkinson’s and oral health, the goals are to preserve dental health and minimize the negative impact disease treatment may have. People with PD commonly experience problems related to the four “dreaded D’s” of oral health:

  • Dry mouth
  • Drooling
  • Dysphagia (difficulty swallowing)
  • Deadly oral bacteria

Why are these conditions dreaded? Beyond the discomfort and inconvenience, they impact quality of life and can even have the potential to create life-threatening situations for people with PD.

While many people think drooling is caused by excess saliva, in PD it is actually attributed to dysphagia. When severe, drooling can be an indicator of serious problems swallowing, which can cause people to choke on foods and liquids. In extreme cases, it can lead to aspiration pneumonia — the leading cause of death for people with PD.

Oral health problems arise directly and indirectly from the progression of PD. For example, people with PD often have dry mouth, which can be caused by the disease process or medication side effects.

Movement-related symptoms also present a challenge in PD oral care. Tremors can interfere with brushing and flossing. These problems can be compounded by depression or cognitive changes when some people’s ability and willingness to engage in routine dental care decreases. Then, as people have tooth and gum loss, their ability to chew well also decreases.

However, there are ways people with Parkinson’s can maintain oral health. These 11 tips from the experts can help with oral health and swallowing problems:

  1. Engage in frequent and thorough oral care. Be sure to brush right after every meal.
  2. Stay hydrated.
  3. Eat and drink in an upright position.
  4. Take small bites and sips.
  5. Avoid talking when eating.
  6. After eating a meal or snack, check the inside of cheeks for any food pocketing.
  7. Consider a special toothbrush (www.colliscurve.com) or adaptive grip aids to make toothbrushing easier. If you prefer an electric toothbrush, be sure it is an oscillating, rotating power toothbrush.
  8. If you experience dry mouth, try over-the-counter remedies. The ideal product will be sugar-free, have preventative qualities, be easy to apply and have a pleasant taste.
  9. Avoid products that include alcohol; they make dry mouth conditions worse.
  10. Your doctor or dentist can recommend special products like toothpaste and gels that can help with dry mouth and other oral health problems.
  11. Have your oral health providers work collaboratively with your other healthcare providers to improve oral health-based quality of life.

Visit our Dental Health page to learn more about Tips for Preventing Dental Problems and Treating Dental Issues.

Advancing Research

What’s Hot in PD? Tips for the Diagnosis and Treatment of Dizziness, Vertigo and Parkinson’s Disease

Woman sitting on bed holding head because she's feeling dizzy

Though dizziness and vertigo have been commonly reported in the setting of Parkinson’s disease (PD), the diagnosis may be missed and treatment may not be optimal. The terms dizziness and vertigo can be defined in many ways. Most experts agree that the terms refer to a sensation of spinning or whirling and that the sensation has been frequently associated with balance problems. The Parkinson’s Foundation 1-800-4PD-INFO (473-4636) Helpline and PD Conversations have received many questions on the topic of dizziness, vertigo and Parkinson’s disease. In this month’s What’s Hot in PD? column, I will review the topic and summarize the most common management strategies.

Van Wenson and colleagues recently analyzed a consecutive cohort of Parkinson’s disease patients. There were 305 patients and 49% complained of dizziness. Of these cases, 38% had orthostatic hypotension and 8% had benign paroxysmal positional vertigo. There were another 3% suffering from a less classical type of benign paroxysmal positional vertigo. The prevalence of benign paroxysmal positional vertigo in Parkinson’s patients was 5.3% and over 90% of cases improved with treatment (Van Wenson, 2013).

Common Causes and Tips to Cope with Dizziness and Vertigo in PD:

  • Orthostatic hypotension: a change in blood pressure when changing position from sitting to standing or from lying to sitting or standing. This condition is treated with hydration (6-8 glasses of water a day), compression stockings, adding salt to the diet and possibly by medications such as Florinef, Midodrine, Droxidopa, or Mestinon. Orthostatic hypotension, which can also be associated with syncope or “passing out,” is the most commonly overlooked cause of dizziness in Parkinson’s disease patients.
  • Medication-induced dizziness or vertigo: the most common drugs associated with dizziness or vertigo in PD are dopamine agonists. Medication-induced dizziness is typically treated by weaning the dosage and by slowly discontinuing the offending drug(s). Common drugs associated with dizziness include anticonvulsants, antihypertensives, antibiotics, antidepressants, antipsychotics, pain medications and anti-inflammatory drugs.
  • Deep Brain Stimulation (DBS): this surgical procedure can be associated with dizziness or vertigo. The issue usually emerges soon after surgical implantation. It is important to determine if the dizziness is present with the device activated or when the device is in the off position. The first step is to turn off the device and to observe and document if the sensation resolves. If the dizziness resolves, then check the location of the electrode in the brain and consider re-programming the device.
  • Benign Paroxysmal Positional Vertigo (BPPV) can be diagnosed using examination maneuvers such as the Dix-Hallpike maneuver. A common complaint of BPPV is dizziness when turning in bed or dizziness lasting only a few seconds. Referral to a physical therapist who is an expert in vestibular rehabilitation can be helpful. Alternatively, teaching the patient to use a maneuver such as the Semont maneuver can be a reasonable approach.
  • Migraine headaches: dizziness or vertigo can sometimes be the effect of migraine headaches. In most cases, treatment of the headache can resolve the dizziness. Some experts refer to this entity as migraine-induced vertigo.
  • Transient ischemic attack or stroke: sudden onset of dizziness, usually in the presence of other neurological signs, could possibly be a transient ischemic attack or stroke. If a stroke is suspected, you should seek medical attention immediately and undergo appropriate imaging and potentially stroke-related therapies.

Selected References:

Dr. Michael S. Okun
  1. Van Wensen E, van Leeuwen RB, van der Zaag-Loonen HJ, Masius-Olthof S, Bloem BR. Benign paroxysmal positional vertigo in Parkinson's disease. Parkinsonism Relat Disord. 2013 Dec;19(12):1110-2. doi: 10.1016/j.parkreldis.2013.07.024. Epub 2013 Aug 13. PubMed PMID: 23948517.

  2. Zeigelboim BS, Klagenberg KF, Teive HA, Munhoz RP, Martins-Bassetto J. Vestibular rehabilitation: clinical benefits to patients with Parkinson's disease. Arq Neuropsiquiatr. 2009 Jun;67(2A):219-23. PubMed PMID: 19547812.

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.

Science News

Resting Tremor and DBS. Sooner Better Than Later?

Parkinson's Foundation Science News blogs

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

Usually, the first Parkinson’s disease (PD) symptom that causes people to seek medical attention is resting tremor. Three out of four people in the early Parkinson’s stages experience it. Done without conscious control or choice, a resting tremor is an involuntary, rhythmic muscle contraction that causes shaking/tremor. Most often initially detected in the hand, resting tremor may also begin in the foot or face. While the term “resting tremor” may sound benign, people with PD describe it as a symptom that is impossible to escape, socially isolating, career-ending and a constant reminder that the disease will only get worse.

Standard, first-line treatment for PD resting tremor is the combination therapy of carbidopa and levodopa. Its success rate is variable and with long-term use, commonly leads to abnormal involuntary movements called dyskinesiasDeep brain stimulation (DBS) — which involves surgically implanting small electrodes into specific brain regions — is another treatment for PD tremors. DBS delivers pulses of electricity into the brain and works like a pacemaker to help counteract abnormal brain activity in PD. Traditionally, doctors have reserved DBS for later stages of PD, when medications are no longer working and quality of life is deemed unacceptable. However, that delay in recommending DBS may be changing.

A recently published study in the journal, Neurology, titled, “Effects of deep brain stimulation on rest tremor progression in early-stage Parkinson disease” (Hacker et al., 2018), involved a post hoc analysis (an additional analysis after the study finished that was not part of the original study design) as to whether having DBS in the early stages of PD might specifically improve resting tremor.

Doctors looking at a brain scan on an ipad

A total of 28 people with PD (25 men, 3 women) ranging in age from 50 to 75, and with no history of dyskinesia or motor fluctuations, participated in the two-year study. Patients were randomly assigned to receive either optimal drug therapy alone (ODT), or DBS with drug therapy. A well-accepted, reliable, battery of tests designed to evaluate motor function, called the Unified Parkinson’s Disease Rating Scale–III (UPDRS-III), was conducted at baseline. The UPDRS-III was accessed on medication, and also off medication (after a one-week therapeutic washout). These on and off medication measurements were then repeated every six months for 24 months. Areas evaluated included the limbs, defined as hands, legs, and face. A participation satisfaction survey was also administered.

Results

From baseline to 24 months:

  • 86% of medication-only patients developed a resting tremor in previously unaffected limbs, as compared to only 46% of patients receiving DBS and medication.
  • While the total UPDRS-III scores off medication did not differ between the groups, rest tremor measured off medication was 3.1 points better for the patients receiving DBS and medication, compared to the patients receiving medication only. Rest tremor was the only measure from the UPDRS-III that showed a statistically significant improvement­ – meaning, these findings are unlikely random or due to chance, but are instead meaningful and potentially causal, i.e., DBS + medication worked better.
  • Rest tremor scores measured on medication improved over the two years for the DBS and medication group, while they worsened for the medication only group. At the end of the two years, the difference between the two groups was statistically significant. 
  • In the medication-only group, the average number of limbs affected by tremor doubled, whereas it decreased slightly in the DBS and medication group.
  • In the patient satisfaction survey, nearly half said the greatest benefit of undergoing DBS was the management of their tremor. Note: DBS is also used for bradykinesia (slowness of movement), and rigidity.

What Does This Mean?

This Hacker et al. (2018) study suggests that having DBS in the early stages of PD may not only improve resting tremor, it may also slow the progression. The possibility of diminishing such a distressing symptom could be a game changer for those who have had to put activities, work, and interests on hold due to their tremor. As with any surgery, DBS is not without risk. This is brain surgery, involving two holes being drilled into one’s head. Serious or permanent complications are rare, but they happen.

This study does have some limitations. It was a small study, involving just 28 people. In addition, some of the analyses done were post hoc, which means they were conducted after seeing the data. In most clinical trials, the primary outcome measure (what the researcher thinks will demonstrate the greatest therapeutic benefit) is decided before the trial ever takes place. While the post hoc analysis showed an interesting relationship between DBS and slowed rest tremor progression, more studies are needed to further test this hypothesis.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. For more information on medications and deep brain stimulation, read our books Parkinson’s Disease: Medications and A Guide to Deep Brain Stimulation.

For more insights on this topic, listen to our podcast episode “What is Deep Brain Stimulation?”.

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