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).

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

A serious misconception about Parkinson’s disease (PD) is that rehabilitative care should only come into play in the later stages of the disease. In fact, rehabilitation can play a crucial role in managing and improving PD symptoms, function, and quality of life and reducing disability from day one.

In January 2024, the Parkinson’s Foundation published a paper on the importance of delivering rehabilitation care in Parkinson’s in the Journal of Parkinson’s Disease. This paper was written by the Parkinson’s Foundation Global Rehabilitation Medicine Task Force, which was formed to help healthcare professionals incorporate rehabilitation into PD care.

“Our goal is to raise awareness of the importance of rehabilitation care in PD. We want to motivate people living with Parkinson’s to advocate for their best care, and that means knowing that they can start rehabilitative care at any point in their disease. We also want to motivate professionals to include evidence-based rehabilitation interventions when providing care to every person with Parkinson’s,” said Jennifer Goldman, MD, MS co-chair of the Parkinson’s Foundation Rehabilitation Medicine Task Force.

Parkinson’s rehabilitation services should start early and be assessed every year.

Rehabilitation is defined as a set of treatments and therapies that can help people with Parkinson’s maintain or improve activities of daily living and independence. PD rehabilitation can include:

• Physical therapy

• Occupational therapy

• Speech-language pathology

• Psychology/Neuropsychology

Trained rehabilitation professionals provide care with the goal of keeping people with PD communicating well, engaging in activities they love and moving well. Rehabilitative care plays a crucial role in PD care and improving health outcomes, with growing evidence showing the benefit for movement and non-movement symptom management, activities of daily living and quality of life.

Key Highlights

The Parkinson’s Foundation Global Rehabilitation Medicine Task Force published the following takeaways regarding rehabilitative care and PD: 

• Rehabilitation should involve the person with PD and care partner and should incorporate shared decision-making to promote symptom management and independence.

• Care coordination and communication among the rehabilitation team, the entire PD care team, the person with PD, and care partner are critical for best results.

• Rehabilitative care professionals should have knowledge and expertise in treating people with Parkinson’s disease.

• Since Parkinson’s is a progressive disease, rehabilitative care should be offered at diagnosis and regularly throughout the disease course with repeated assessments and interventions adapted to changes in a person’s condition or needs.

• Rehabilitative interventions are critical in treating PD, alongside medical, surgical and other PD-related interventions.

What is the takeaway for people with Parkinson’s?

More than half of people with PD are never referred to rehabilitative therapy in their lifetime. Research shows that these therapies help with symptom management and help people with PD stay independent longer. Many healthcare professionals and people with PD remain unaware of the potential impact of rehabilitative care, thereby limiting their use and availability in the PD community. These therapies are greatly under-utilized for people living with PD.

Participating in rehabilitation care leads to:

• Decreased care partner strain

• Fewer hospitalizations

• Prolonged participation in meaningful activity

• Longer functional independence

The Parkinson’s Foundation recommends that every person with PD ask their PD doctor at least once a year if they can benefit from rehabilitative services.

Learn more about Physical, Occupational & Speech Therapies. For a referral to a rehabilitation expert near you, call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

People with Parkinson’s disease (PD) are at a higher risk of hospitalization and face many challenges while in the hospital.

Hospital staff may not be familiar enough with PD to understand symptoms or realize they can worsen if you do not receive Parkinson’s medications on time. Careful preparation and clear communication can help minimize complications and recovery time.

People with Parkinson’s and their care partner can use the Five Parkinson’s Care Needs from our Hospital Safety Guide, listed below, to communicate PD needs during a hospital visit, whether planned or unplanned.

1.  I need my hospital chart to include my exact medications and match my at-home schedule.

Why it’s important: Hospitals often follow standardized medication schedules to ensure timely administration for most patients, but this doesn’t prioritize the complex medication routines that people with Parkinson’s follow.

What to look out for: Make sure the hospital records your exact medication times rather than the number of times per day you take them. Otherwise, the hospital will

follow their schedule instead of yours.

What to ask for: Ask to verbally review your hospital medication list and schedule with the hospital care team, confirming that they ordered medications according to the correct specific times. You can also request a printout to review and compare to your Medication Form.

2.  I need to take my Parkinson’s medications within 15 minutes of my usual schedule.

Why it’s important: Delayed or missed doses can lead to falls, difficulty participating in rehabilitation and being less prepared to go home after leaving the hospital.

What to look out for: Many hospitals allow nurses to give medications up to an hour before or after the scheduled time.

What to ask for: Remind nurses when it is almost time for your medications. Ask nurses to help you take your medications according to your home schedule. Describe your symptoms and how they are affected when you do not receive medication on time, every time.

3.  I need to avoid medications that make my Parkinson’s worse. These medications include those that block dopamine, sedatives and certain pain medications.

Why it’s important: Lack of dopamine in the brain is the primary cause of Parkinson’s movement symptoms. When dopamine-blocking medications are given to someone with Parkinson’s, they can worsen the symptoms they are given to treat and cause harmful side effects.

What to look out for: Your care team may prescribe new medications to treat nausea, confusion and psychosis (hallucinations and delusions) without realizing they can worsen Parkinson’s symptoms.

What to ask for: Share the list of harmful medications on the Parkinson’s Care Summary and ask for a safe alternative.

4.  I need to move my body as safely and regularly as possible, ideally three times a day.

Why it’s important: For people with PD, regular movement — often coupled with physical and occupational therapy — is important for controlling PD symptoms, preventing falls and minimizing complications.

What to look out for: In the hospital, your care team may limit your movement to keep you safe, especially if you are weak after surgery, have low blood pressure or have other issues that put you at risk of falling.

What to ask for: Ask for rehabilitation therapy (physical and occupational therapy) if you need help moving safely. If it is safe, continue daily activities, such as dressing, walking to the bathroom, sitting in a chair for meals and taking short walks

5.  I need to be screened for swallowing changes to safely maintain my medication routine and minimize my risk of aspiration pneumonia and weight loss.

Why it’s important: Difficulty swallowing, called dysphagia, is common for people with Parkinson’s. Minor swallowing issues can worsen and create severe complications during a hospital stay.

What to look out for: Staff may order “NPO” (nothing by mouth) with the goal of preventing severe swallowing-related complications, stopping Parkinson’s medications, along with all other food, liquid, and medications. This can make swallowing issues worse!  

What to ask for: Instead of stopping Parkinson’s medications, you want to avoid medication pauses. Ask the nurse about ways to continue Parkinson’s medications safely.

In addition to providing useful information and tools to help you advocate for your best care, and explain the Five Parkinson’s Care Needs to hospital staff, the Hospital Safety Guide provides:

• Forms for you to fill out with personal care details and medication schedules.
• Tips for care partners.
• Parkinson’s care information to share with the hospital care team.

Order and download the free Hospital Safety Guide right now.