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.

For decades, we have known that inflammatory changes occur in the brain of people with Parkinson’s disease (PD). But in the last few years, inflammation has been studied as a possible cause of the progressive nature of the disease and not just a result of it.

Catherine (Chi) Weindel, PhD, is studying this connection, specifically focusing on how one variant or mutation of the Parkinson’s disease-linked gene LRRK2 impacts immune health. She hopes this research will pave the way for a deeper understanding of how Parkinson’s starts and progresses, along with avenues for potential new therapies.

“My research involves the study of the immune system. What I am interested in is determining how the immune system might be different in people with Parkinson’s genetic mutations, which would cause a difference during an infection or in response to an environmental toxin,” said Dr. Weindel. “I am studying how alterations or modulations in an immune response could build up over time, piece by piece, and might predispose someone to develop Parkinson’s later in life.”

When Dr. Weindel first began investigating Parkinson’s, she suspected that immune system inflammation, triggered by illnesses and loss of dopamine neurons outside the

brain, could ultimately lead to the development of the disease. This line of thinking led to her Parkinson’s Foundation Postdoctoral Fellowship, where she designed a study to explore how a LRRK2 G2019S mutation may impact mitochondria, which provide energy for a cell, when immune cells have been stressed by infection.

She discovered that during an infection, when immune cells with LRRK2 mutations die, they uniquely increase inflammation that promotes the spread of bacteria throughout the body. This cell death seems similar to what researchers find in brains of people and mice with PD.

Now, as a 2022 Parkinson’s Foundation Launch Award recipient, Dr. Weindel is taking her research a step further to gain a deeper understanding of how LRRK2 gene mutations cause cell death in immune cells in the brain. This will lead to the identification of new targets for Parkinson’s therapy that may better control inflammation, for instance. Her research will also help design improved genetic tests to give families with a history of Parkinson’s better insight into their risk for developing PD.

According to Dr. Weindel, genetics research is vital to understanding the connection between Parkinson’s disease and the immune system’s response because even when family members have the same PD mutation, the disease may present itself differently in each person. By looking at complex genetic interactions, we can see alternative pathways impacting specific individuals, which can dictate better clinical trials or potential therapies.

“My goal is to develop therapeutics that will allow for a more personalized medical approach,” Dr. Weindel said. “Because Parkinson’s is such a diverse disease, a cure-all is very unlikely. Ideally, a particular therapeutic can one day be designed for an individual based on the genetic makeup of their Parkinson’s.”

Explore ongoing Parkinson’s Foundation research, including our landmark genetics study, PD GENEration at Parkinson.org/PDGENEration.

Pain is a common, often overlooked symptom of Parkinson’s disease (PD). If you live with unaddressed pain, it can significantly impact your quality of life. Tracking, assessing and effectively managing your pain can make it easier to continue doing day-to-day activities. Find out how to begin taking control.

This article is based on Understanding Pain in Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented by Apurva Zawar, PT, DPT, Board Certified Geriatric Clinical Specialist, University of California, San Francisco volunteer assistant clinical professor and Beyond Rehab founder.

Research shows people living with Parkinson’s experience significantly higher levels of pain compared to people without PD. Pain in PD can make movement difficult and amplify stress, anxiety and depression. One of the best medications for PD symptoms is an active, social lifestyle. But when you feel overwhelmed, you are less likely to exercise, stay mentally active and connect socially. This can create a vicious cycle. Recognizing your pain patterns can help you take control and get back to living well.

Pain is a personal experience. It is important to communicate what you are feeling. Acute pain is often directly connected to an injury, while chronic pain can last three months or more. Use the tips below to track your pain experience a few days before you meet with your Parkinson’s doctor.

Determine whether your pain is linked to Parkinson’s

(Mylius et al., 2021)

If you answer yes to one or more of the below questions, your pain is likely PD-related:

• Has my pain started or become more severe since the onset of PD symptoms?
• Does my pain worsen when rigidity, tremors, or slowness of movements are more intense?
• Is my pain associated with excessive or abnormal movements (choreatic dyskinesia)?
• Does my pain improve when taking PD medications?

Classify your pain

There are three types of Parkinson’s pain:

1. Musculoskeletal and dystonic (nociceptive) pain

   Musculoskeletal aches include muscle tenderness, joint pain, decreased joint mobility and postural changes. Most people report lower limb and low back pain. In early Parkinson’s 34% of people experience musculoskeletal pain. It can impact nearly 50% of people living with advanced Parkinson’s (Valkovic et al., 2015).

   Dystonic pain is tied to abnormal, involuntary cramping movements in PD that can happen when the effect of levodopa medication wears off between doses. Over 10% people experience this type of pain around the time of diagnosis, while 23% of people who have lived longer with Parkinson’s are affected (Valkovic et al., 2015).

2. Neuropathic (radicular) pain can include burning, tingling, numbness and the feeling of being pricked by pins and needles. Nearly 20% of people experience this in the earlier PD stages. As symptoms advance, close to 35% of people feel neuropathic pain (Valkovic et al., 2015).
3. Central (nociplastic) pain is a constant, dull aching pain experienced by nearly 20% of people in early Parkinson’s and 25% of people living with advanced PD (Valkovic et al., 2015).

Rate your pain level

Ask yourself:

• How intense is the pain on a scale of 1 to 10, with 10 being the greatest possible pain?

• How often do you experience pain: occasionally, frequently or constantly?
• What is the level of impact pain had on your quality of life: minimal, moderate or major?

It’s important to note:

• What makes the pain worse or better?
• What does it feel like: achy, electric shock-like, dull?
• Is the pain in one place or does it move around the body?
• When did it start, and is it affected by the timing of PD medications?

Be sure to also list every medication you are taking and how frequently, including any over-the-counter drugs.

The Impact of PD Pain

Unmanaged pain in Parkinson’s can have a major bearing on well-being (Choi et al., 2017). It can occur at any time throughout the course of Parkinson’s, including:

• Pre-motor stages: Pain can begin one to two years before PD-related slowness, stiffness and balance issues (known as movement symptoms).
• Early Parkinson’s: People often report pain as one of their most bothersome non-movement symptoms. Research shows 20% percent of people with Parkinson’s experience chronic pain at the time of diagnosis (Mylius et al., 2021).
• Advanced PD: People living with Parkinson’s for five years or more reported experiencing 35% more pain than people in early stages of PD.

What Causes PD Pain?

Pain affects nearly 80% of people throughout the course of Parkinson’s (Mylius et al., 2021). PD-related pain can stem from many causes, such as:

• Decreased dopamine production. Parkinson’s diminishes this feel-good brain chemical that influences movement, mood and more.
• Dysfunction of pain pathways. Parkinson’s impairs the nerve pathways that control sensation and pain in the brain, brainstem and spinal cord.
• Musculoskeletal pain. People with Parkinson’s often feel aching muscles and joints.
• Altered inflammatory signals. The body sends chemical messages to initiate healing after injury. Parkinson’s can interrupt or change these messages.

Getting Pain Management Right

Relief is often most effective for people who are empowered to take an active, educated role in pain recovery. Parkinson’s pain and other symptoms can change over time. Treatment should be tailored to your needs. Building a team of healthcare professionals well-versed in PD who collaborate in your care can help you address challenges as you face them.

Managing pain often begins with a neurologist or movement disorders specialist, who can work with you to optimize Parkinson’s medication and help you find the right interdisciplinary care. Tell your doctor about any mood changes you are experiencing. Depression and anxiety are common PD symptoms. Untreated, these can intensify other Parkinson's symptoms.

You might receive a referral to a physical or occupational therapist (or both), speech-language pathologist, psychologist, wellness coach or other professional to help you build a pain-management toolbox. Healthy habits, exercise and education are all essential to easing discomfort.

Recovery in Action

Participants in PD PowerUp, a four-week Parkinson’s pain management study funded in 2023 by the Parkinson’s Foundation, reported increased movement and the ability to actively manage their pain symptoms following the program. This program gave them tools to:

• Interpret and understand what causes pain.
• Increase confidence in pain management.
• Gain active coping skills.
• Boost engagement with others.

People who participated decreased dependency on over-the-counter pain medications by 20% and increased use of active coping strategies by 30%.

Tips to Recognize Pain

Look out for these pain triggers:

• Watch your posture: sitting or sleeping in an uncomfortable position can activate pain.
• Notice whether seasonal changes (which can influence hormonal changes) impact how you feel.
• Can your pain be related to stiffness or sedentary activity? Take time to stretch. Try our PD-tailored Fitness Friday: Flex and Flexibility video that you can do from home, at any time.
• If you experience other inflammatory conditions, including age-related stiffness such as osteoarthritis, talk to your healthcare team about ways to address and manage your discomfort.

Learn More

Explore our resources about pain management in Parkinson’s:

• Pain in Parkinson's Disease

• A Beginner's Guide to Managing Pain Through Mindfulness
• Understanding Pain
• PD Health @ Home Fitness Friday exercise videos