Every day at we are grateful for the wonderful volunteers, known as Parkinson’s Foundation Ambassadors, who help make a difference in the lives of people with Parkinson’s disease (PD).

National Volunteer Week is April 17 to 23, and we want to celebrate and thank all the hard-working volunteers across the globe who spread awareness and improve their PD communities.

There are many ways to get involved and start volunteering, from Moving Day to joining our People with Parkinson’s Advisory Council. Finding the opportunity that fits your abilities and passion is key. Below are four volunteers who did just that, and who are excited to share their stories with you in the hopes that you might also find the volunteer role that works for you!

Rebecca

Volunteer, Brother is living with Parkinson’s 

Selfishness is normally considered a negative characteristic, but in this case, I’m proud to be a selfish volunteer for the Parkinson’s Foundation. Luckily, everything I do for the Foundation helps Greg, and vicariously helps others too! I think that’s pretty positive.

Read Rebecca’s story
 

Mike & Angela

Parkinson’s Research Advocates, Mike is Living with Parkinson’s and Angela is his care partner

Back in the day, it was uncommon for older people, especially African Americans, to seek medical attention for physical and mental needs. Now, as a Research Advocate, I can ask questions and help raise awareness for PD. I use this role to spread information about the importance of clinical research and genetic testing.

Read Mike and Angela’s story
 

Darrell

Volunteer, Living with Parkinson’s

There are many volunteer roles in the Parkinson’s Foundation and my interest settled on giving presentations in the community. First, I needed to complete the Ambassador training which was very helpful and increased my PD knowledge. My motivation to pass the training quickly became my reality and I became a Parkinson’s Foundation Ambassador for the Georgia Chapter.

Read Darrell’s story
 

Whether you are interested in becoming a Parkinson’s Foundation Ambassador like Darrell, a research advocate like Mike & Angela, or speaking to people in your community like Rebecca, we want to hear from you! Get to know more of our volunteers through this special volunteer edition podcast episode.

Complete our volunteer interest form to get started. You can also chat with the volunteer engagement team to help us educate others about PD and connect them to life-saving resources.

Already a volunteer? Check out our course offerings today! 

Learn more about how you can become a Parkinson’s Foundation Ambassador.
 

A clinical trial shows that an ultrasound treatment can help with involuntary and impaired movement for people with Parkinson’s.

People with Parkinson’s disease (PD) experienced significant improvement in tremors, mobility, and other movement symptoms after undergoing a minimally invasive procedure using focused ultrasound, a study published in the New England Journal of Medicine shows.

Deep brain stimulation (DBS) has become the main surgical treatment for people with PD who do not fully respond to levodopa. It involves the invasive surgical placement of tiny wires into the targeted brain area, which is then stimulated by sending electrical signals through the wires. Focused ultrasound is a treatment that emits high-intensity sound waves into the brain, guided by magnetic resonance imaging (MRI). Where these waves cross, they create high energy, which creates heat, destroying a specific area in the brain connected to tremor. It is considered non-invasive because it does not involve incisions or holes in the skull.

Both treatments have pros and cons.

• Focused ultrasound is non-invasive. It does not require additional adjustments and creates a permanent change.
• DBS is an invasive surgery that allows for adjustments as movement symptoms worsen through the course of Parkinson’s, even years after surgery. DBS can still be an option for those who undergo focused ultrasound if the disease continues to progress.

The U.S. Food and Drug Administration (FDA) approved focused ultrasound as a Parkinson’s treatment for those with movement symptoms mainly on one side of the body. However, most people with Parkinson’s have movement symptoms on both sides of the body. This study included people who have symptoms on both sides of the body.

About the Study & Results

The focused ultrasound targets a part of the brain called the globus pallidus internus (GPI), which is part of the basal ganglia, a network of brain structures that controls movement. In Parkinson’s, the loss of dopamine-producing neurons disrupts the normal functioning of the basal ganglia. This can ultimately lead to abnormal activity in the GPI and can contribute to the movement symptoms of Parkinson’s.

This study examined the safety and efficacy of focused ultrasound of the GPI in a randomized trial of 94 participants with PD movement symptoms. Only the side of the brain opposite the participant’s most symptomatic side was treated. Of the 94 participants, 69 were randomly selected to undergo the procedure, with 25 receiving the false treatment as a control.

Each participant received a clinical assessment for the severity and progression of their Parkinson's before and after treatment. Nearly 70% of participants in the treatment group had improvements in symptoms after three months of follow-up, compared to 32% in the control group who had an inactive procedure without focused ultrasound.

One year later, a follow-up assessment tracked 60 of the original 69 participants and found that 66% of those who received treatment and initial improvement in symptoms continued to have a positive response to the treatment. Additionally, of the 25 participants who initially had a placebo treatment, 20 chose to undergo treatment three months later. Of the 20 that chose treatment, 70% had a positive response at three months, and 57% had continued success one year later.

A third of the participants had no side effects. Among those who did, most participants experienced only some mild to moderate symptoms, including headaches, dizziness and nausea. However, one person experienced a serious complication related to the procedure: a nonfatal pulmonary embolism. At the three months check-up, adverse reactions were mild to moderate and included slurred speech, disturbances in walking, loss of taste, visual disturbance and facial weakness. 

Highlights

• The clinical trial used focused ultrasound to target movement symptoms of participants with Parkinson’s with the goal of improving them.
• Nearly 70% of participants in the treatment group responded successfully to treatment after three months of follow-up, compared to 32% in the control group who did now undergo the focused ultrasound.
• About 66% of participants in the treatment group who had initial success continued to have a positive response from the treatment a year later.

What does this mean?

This treatment may be effective for improving physical symptoms of Parkinson’s. However, the long-term effects of the procedure are still not known. All participants in the study will be followed for five years to assess the effects and long-term safety of the procedure.

What do these findings mean to the people with PD right now?

Although approved by the FDA, it will be years before we know the long-term effectiveness and impacts of focused ultrasound as a PD treatment. The Parkinson’s Foundation encourages people with PD to work with a movement disorders specialist to make sure a focused ultrasound is a good option.

There are an increasing number of sites offering focused ultrasound for Parkinson’s across the country. For a list of sites that offer the treatment, visit the Focused Ultrasound Foundation website. Be sure to ask about the site’s experience with treating Parkinson’s disease, specifically.

Of note, focused ultrasound is not universally covered by Medicare — eligibility and region vary when it comes to Medicare reimbursement. It will take time for the procedure to become more widely available and to be covered by insurance. Directly contact the center offering focused ultrasound in your area for specific information about insurance coverage.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article below, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

• Other Surgical Options
• Non-pharmaceutical Treatments for PD: DBS and Focused Ultrasound
• Surgical Options: A Treatment Guide to Parkinson's Disease - Updated

As Parkinson’s research advances, experts are discussing how to biologically define and possibly classify Parkinson’s disease.                                   

Right now, a discussion is gaining momentum among scientists researching Parkinson’s disease (PD) to use the latest advances in research to define Parkinson’s for the first time, based upon its biological signature. But why? And more importantly, what does this mean for those living with PD right now and the 90,000 people diagnosed every year?

Currently, diagnosing Parkinson’s is a mix of art and science. A PD diagnosis is made when a doctor weighs the evidence contained in a combination of symptoms (clinical hallmarks), response to dopamine therapy and use of in-office exams. Sometimes, brain imaging or a skin biopsy can be used to help support the diagnosis. Ultimately, there is no single test that can unequivocally confirm a person has Parkinson’s and no test to track disease progression.

Why Scientists Believe We Need to Define Parkinson’s

Parkinson’s research is advancing. We are getting closer to being able to use a biomarker to diagnose Parkinson’s. For example, high blood pressure is a biomarker for hypertension and blood glucose levels are biomarkers for diabetes. For PD, reliable biomarkers could one day potentially lead to an earlier PD diagnosis and help researchers design and test therapies that might slow or stop the disease.

For PD, the protein alpha-synuclein can act as a biomarker. Years of research show that this protein is involved in most but not all PD cases. While the alpha-synuclein protein has a useful role in the body, in PD, it becomes misfolded and damaged. This misfolding, much like a crumpled piece of paper, is associated with the damage of brain cells and the formation of alpha-synuclein clumps called Lewy bodies. These protein depositions pathologically define PD and the related disease, Lewy Body Disease or Dementia with Lewy Bodies. 

We know from pivotal research, some of which was funded by the Parkinson’s Foundation and published in 2008, that misfolded alpha-synuclein can spread in the brain. The alpha-synuclein then acts as a “seed,” causing normal alpha-synuclein to form new clumps that change how brain cells work.

Recent advancements have opened the door for scientists to find misfolded alpha-synuclein in cerebrospinal fluid (CSF) of people with PD. This method for detecting abnormal alpha-synuclein is called alpha-synuclein seed amplification assay (SAA). In 2023, the accuracy of this approach was published. Recently in Nature, researchers from Japan published a blood-based approach to measure alpha synuclein.

Scientists believe the synuclein seed amplification assay could be an effective way to identify Parkinson’s in its “preclinical” stage, years before symptoms appear. However, the assay has its limitations. The testing method is not yet widely standardized and not all scientists have achieved the same results. The fluid required for the testing uses a spinal tap, which is a procedure that removes a small amount of cerebrospinal fluid and is not easily collected. The hope is that more serum and blood-based approaches will replace spinal fluid.

Also, the SAA assay test only confirms the presence of misfolded alpha-synuclein — it does not pick up all cases of Parkinson’s, especially cases of the LRRK2 genetic variant. Results cannot help scientists or doctors track disease progression, nor can it determine if someone who has misfolded alpha-synuclein — but no PD symptoms — will develop PD. Nevertheless, scientists — including those funded by the Parkinson’s Foundation — are working to overcome these limitations with the goal of re-engineering the SAA biomarker test to use a blood draw instead of CSF.

Scientists believe that using biomarkers to biologically define Parkinson’s can help identify early PD with more certainty and help to advance clinical trials. For now, alpha-synuclein is the first validated biomarker to be used in early clinical research. Researchers are already working on finding other PD biomarkers (through an MRI, skin biopsy and others) that can be used to diagnose PD and monitor its progression.

What’s in a name?

With the advancements being made in PD biomarkers, researchers are beginning to think about a new way of describing or “classifying” PD. This would provide a standardized way for researchers, doctors and epidemiologists (those who study disease) to describe PD and its various stages. This is in contrast with how we study PD right now, as Parkinson’s does not have a singular disease classification.

Because Parkinson’s is tied to the abnormal clumping of alpha-synuclein in the brain, some propose reframing “Parkinson’s disease” into a larger disease category. Two new approaches have recently been proposed:

1.  Neuronal Synuclein Disease

The first presumes that alpha-synuclein is an effective, and potentially the only, biomarker to define diseases where alpha-synuclein plays a role, such as Parkinson’s and Lewy Body Disease (LBD). Researchers propose to use “Neuronal synuclein disease” as an umbrella term to describe PD and its alpha-synuclein related diseases as part of a proposed disease staging system (Simuni et al., 2024). This classification requires use of cerebrospinal fluid (CSF) and DaT brain scanning.

2.  SynNeurGe

The second approach to classifying PD also relies on using alpha-synuclein as a biomarker but incorporates other disease features in classifying the disease (Höglinger et al., 2024). Here, researchers also use brain imaging and genetic status to define what is PD and what is not. The researchers do not propose changing the name of Parkinson’s disease but add the classification scheme, called “SynNeurGe” (pronounced synergy) alongside it.

Importantly, these two proposed approaches for defining PD lay important groundwork but also “underscores substantial knowledge gaps that deserve further study,” (Darweesh et al., 2024).

What This Means for The PD Community Right Now

The future of PD research lies in being able to define the disease based on a biological basis, which marks the beginning of more efficient ways to define, diagnose and treat PD. However, the work towards disease classification or a biological definition of PD will take time. Right now, these discussions do not impact how Parkinson’s is currently diagnosed or treated.

As researchers debate the merits of each approach (or even continue to propose new ones), it will take time to reach a consensus and to implement any changes to how PD is classified. If a new classification scheme is implemented, the likely first impact will be how clinical trials are conducted. Researchers may choose to fill research studies with participants who have received a diagnosis via the biomarker test, as they may respond better to certain drug treatments.

“Tying Parkinson’s disease to a new classification or definition is a new, evolving approach that will take time to first develop in research and then move into general use in the clinic. There will be ups and downs along the way, but with feedback from the community and continued advances in research the overall result will hopefully mean better care for people living with PD,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer.

In the meantime, it remains imperative that people who suspect they have Parkinson’s should be aware of the early signs and speak to their doctor. An early diagnosis will always remain the best course of treatment to maintain a high quality of life.

As research advances towards precision medicine, genetic testing is an important way researchers can help advance the field towards better treatments and diagnosis. Studies like PD GENEration: Mapping the Future of Parkinson's Disease are empowering people with Parkinson’s with their genetic status at no cost. These results can be shared with their doctor to guide treatment.

Here For the Parkinson’s Community

As this process unfolds, the Parkinson’s Foundation will continue to support innovative scientific research that improves life for people with PD and report any new information to our community. The Foundation continues to serve as a trusted ally to the Parkinson’s community, providing information that can help people navigate every stage of the disease.

Learn More

Learn more about advances in research by visiting the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.

• A New Test Could Detect Parkinson’s Before Symptoms Appear

• What is a Disease Modifying Therapy in PD?

• Finding A Cure

Since every person has a unique Parkinson’s disease (PD) experience, building a diverse team of health experts allows them to manage their PD symptoms and progression — and maximize quality of life. No one understood this concept better than Ruth Hagestuen RN, MA, the founder of the Parkinson’s Foundation Team Training program, an interactive program designed to train healthcare teams in PD care.

Ruth passed away on February 23, 2024. This article is dedicated to Ruth and how she shaped Parkinson’s care, ultimately evolving how the Parkinson’s Foundation works to bring access to care to more people with Parkinson’s.

In a 2018 podcast episode, Ruth spoke about the Team Training program and its design. “The reason we decided to launch this program is that people with Parkinson’s were going for care and were not able to find professionals that knew PD well enough to give state-of-the-art care,” Ruth said. “We want every person that goes to the program to understand the best we know to date about Parkinson’s.”  

In 2000, Ruth joined the Parkinson’s Foundation as Vice President and Program Director, where she launched the Team Training program in 2003. She worked with affiliates nationally and internationally to develop strategies to better meet the needs of the PD community through research, education, care and outreach. 

2023 marked 20 years for the Parkinson’s Foundation Team Training program. Since inception, more than 2,900 health care professionals have graduated from the program, which has been hosted in cities across the U.S. and offered virtually.

Ruth’s dream to train professionals continues to reach further, as Team Training alumni collectively treat nearly 200,000 people with Parkinson’s across the country each year.

Her legacy continues to impact people living with PD and the healthcare professionals who complete Team Training — including neurologists, nurses, social workers, rehab therapists and others.

“Ruth was a visionary in the Parkinson’s disease space. For decades, as a nurse she personally brought comfort and care to thousands of people living with the disease during her career, she ran one of the early leading PD centers in the U.S., and through Team Training, she helped train thousands of healthcare professionals,” said Eli Pollard, Parkinson’s Foundation Vice President and Chief Training and Education Officer. “She achieved so much and will forever inspire us at the Foundation to do more.”

Ruth’s dedication to helping people goes back to the beginning on her nursing career when she served as an Air Force nurse in the Vietnam War. Afterwards, she lived and worked for 13 years as a nurse and partner in developing health care programs in Madagascar and Bangladesh. 

In 1987, she accepted the position as nurse coordinator and program manager of the multidisciplinary team in the Parkinson’s clinic at Methodist Hospital, which ultimately expanded to become the Struthers Parkinson’s Center, a Parkinson’s Foundation Center of Excellence, where Ruth worked as Program Director.

“Ruth was tenacious in her willingness and endurance in the pursuit to improve Parkinson’s care,” said Denise Beran, Parkinson’s Foundation Associate Director of Professional Programs. “It has been a privilege to know Ruth as a colleague and as a friend over the past 20 years, and it’s an honor to keep her legacy of professional training alive, continuously improving, seeking the best proven therapies and outcomes to share with health care professionals so they can provide the best possible care.”

As a speaker and writer, Ruth co-authored the book Health Connect, a Practical Guide to Community Outreach. She also co-authored two publications based on the effectiveness of team care education and facilitated outreach to underserved communities to provide culturally competent, interdisciplinary PD care — nationally and internationally. She was also the Parkinson’s Foundation consultant to the Edmond J Safra National Parkinson’s Wellness Initiative.

Ruth was also active in the International Parkinson’s and Movement Disorders Society, where she served on the Pan-American Section Education Committee.

Kind Words from Our Parkinson’s Community

“Ruth embodied holistic nursing, recognizing the importance of looking beyond the physical symptoms of Parkinson’s. Her work in promoting interprofessional team care as best practice in Parkinson’s forever changed the landscape of care for families living with Parkinson’s.”

- Joan Gardner, RN, BSN, former colleague and life-long friend, former nursing faculty of Team Training

“Ruth was a creative individual with a passion for ensuring that all individuals with Parkinson’s received comprehensive interdisciplinary care. Her life’s work will always be recognized and celebrated within the Parkinson’s community. I am honored to call her my colleague and friend.”

- Rose Wichmann, PT, former colleague and life-long friend, former PT faculty of Team Training

“When I think about Ruth, she is the reminder to follow what you believe in, and in the end, you reach something even better and bigger than you imagined. She was a force within nursing, patient care and education. She advocated not only the education of people with Parkinson’s and their care partners, but also the education and growth of other medical professionals.

- Jenna Iseringhausen, MS, NP, AGPCNP-BC, mentored by Ruth and currently a nurse faculty of Team Training

The Parkinson’s Foundation remembers Ruth’s contribution to the Parkinson’s care field and her direct influence in helping shape Foundation programs that make life better for people with Parkinson’s. Ruth is survived by her wife, Bonnie, her children and grandchildren. 

Learn More

• Listen to Ruth talk about the Team Training program in this podcast episode, Team Training for Parkinson’s.
• If you are a healthcare professional, explore our team training and professional education resources.
• If you are a person living with Parkinson’s and want to find a PD-trained healthcare professional, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Uniendo el panorama terapéutico

Mi Historia con EP: Gustavo A. Suárez Zambrano, MD, vicepresidente de Asuntos Médicos de Mitsubishi Tanabe Pharma America, Inc.

Mientras crecía en Colombia, su país natal, el Dr. Suárez siempre supo que quería una carrera en la que pudiera ayudar a las personas, aunque no sabía que su camino eventualmente lo llevaría a estudiar la enfermedad de Parkinson (EP) en los Estados Unidos.

El Dr. Suárez trabajó durante varios años como médico general en hospitales de Sudamérica antes de encontrar su verdadera pasión en la neurología. Luego, después de trabajar durante cuatro años como neurólogo general, se dio cuenta de que quería especializarse más aún. Esto hizo que se trasladara a los Estados Unidos, donde consiguió una plaza en la Baylor College of Medicine para estudiar y apoyar la investigación en esclerosis múltiple (EM).

Después de varios años en el ámbito de la EM, el Dr. Suárez decidió asumir un nuevo desafío. Se unió a Mitsubishi Tanabe Pharma America (MTPA) con el objetivo de involucrarse en los trastornos del movimiento y la EP, áreas donde las opciones de tratamiento aún son bastante limitadas. En este momento, muchas personas que viven con la EP experimentan una disminución en la eficacia de los medicamentos orales estándar a medida que avanza su enfermedad, lo que las obliga a tomar múltiples dosis a lo largo del día para tratar de controlar sus síntomas. Como consecuencia, esto puede conducir a la aparición de trastornos motores no controlados, fluctuaciones como movimientos involuntarios o discinesia.²

Hace mucha falta proporcionar opciones terapéuticas que puedan impactar positivamente a los pacientes, especialmente aquellos afectados por fluctuaciones motoras. El trabajo del Dr. Suárez en MTPA se centra en tratar de abordar esta brecha. El doctor comprende la gran necesidad que existe de opciones de tratamiento mínimamente invasivas que puedan ayudar a abordar estos síntomas.

Además de apoyar la investigación y el descubrimiento de nuevas opciones de tratamiento, al Dr. Suárez también le apasiona cerrar la brecha educativa para ayudar a los pacientes. Para esto, ayuda a los cuidadores y a los proveedores de atención médica a comprender nuevos datos y avances en el campo. Las opciones terapéuticas sólo son útiles si quienes viven con la enfermedad y quienes la tratan están informados y son receptivos a ellas.

Después de muchos años en neurología, el Dr. Suárez ahora dedica una gran cantidad de su tiempo a tratar de encontrar nuevas formas de abordar las necesidades y los desafíos insatisfechos de la enfermedad de Parkinson. Entre estos desafíos se incluyen las fluctuaciones motoras, algo con lo que el doctor está comprometido a continuar explorando opciones de tratamiento para las personas que viven con esta enfermedad.

Para obtener más información sobre la EP y comprender las fluctuaciones motoras, visite SpeakParkinsons.com.