We rely on the energy, skill and passion of our volunteers to help make life better for people with Parkinson’s disease. In honor of National Volunteer Week, we are sharing the stories of five standout volunteers who have made a real impact by lending their time and expertise to the Parkinson’s Foundation.

Glenn Kasman, People with Parkinson’s Council member

Glenn Kasman is proud to volunteer with the Parkinson’s Foundation. He was diagnosed with Parkinson’s in 2015 and experiences a variety of motor and non-motor symptoms that affect many aspects of his life. When he was diagnosed, the Parkinson’s Foundation provided him with educational resources and tools to live better with PD. Since then, Glenn has participated in community awareness and fundraising events, community grant reviews, the development of best practice care guidelines, research, outreach programs, advocacy and more. Perhaps most notably, Glenn is one of the current members of the Parkinson's Foundation People with Parkinson's Advisory Council. When reflecting on his volunteer impact, Glenn said, “Volunteering is a way for me to give back and help others. I have learned much, made friends and received more back than I could have imagined. I am sure that no matter what type of volunteer activities you might like, the Foundation has a place for you too!”

The People with Parkinson's Council ensures that the perspective of people living with Parkinson’s is integrated into our program development and priority setting. To learn more about the Council visit Parkinson.org/Council.

​​​​​​​Jenna Palek, Parkinson’s Champion

Jenna Palek loves running, and she is making a difference while putting in her miles! Jenna registered for Champions @ Home after her father was diagnosed with Parkinson’s disease, and she now runs marathons while fundraising for the Parkinson’s Foundation. Jenna says, “Fundraising for Parkinson's Champions gave me a way to educate others, raise awareness and make a financial contribution towards fighting the disease. It also connected me with others who are going through the same situation.” This past year, several members of Jenna’s family joined her team. “It gave us something fun and purposeful to bond over during a time that was otherwise kind of bleak due to COVID.”

Join our virtual Champions @ Home team with Jenna! Track your mileage online and compete with runners across the country while raising funds and awareness for people living with Parkinson’s. Register here to #Run4PD

Kathy McMurray, Aware in Care Ambassador

Kathy McMurray became an Aware in Care Ambassador because she wanted to help the three out of four people with Parkinson’s who do not receive their medications on time when hospitalized. As an Aware in Care Ambassador, she works directly in her local community in the Evansville, Indiana area to educate the public and share Parkinson’s Foundation resources. Kathy is working to create connections at Deaconess Hospital in Evansville and change the culture and policies around Parkinson’s care. When asked about her impact, she said “We have made the physicians and staff aware of the critical need for Parkinson's disease medications to be given on the patient's schedule. I am so thankful to advocate for Parkinson's in my city and to volunteer for an organization that honors its volunteers.”

To order your own Parkinson’s Hospital Kit, visit Parkinson.org/AwareInCare. Learn more about becoming an Ambassador at Aware in Care Ambassadors.

​​​​​​​Melanie Lomaglio, Moving Day Jacksonville

Melanie Lomaglio recently completed her third Moving Day Jacksonville event. She says, “Despite the pandemic, I was determined to raise more money than ever before! I know how important it is that the Foundation keeps their mission moving forward during this time of isolation.” Melanie’s business, STARS Rehab, and surrounding St. Augustine community rallied together to sell hundreds of raffle tickets for the Foundation. They celebrated Moving Day Jacksonville with a socially distanced beach walk on event day. Inspired by her participation, Melanie applied for and received a Parkinson’s Foundation Community Grant, enabling her to directly impact people living with Parkinson's disease. Since July 2020, Melanie and STARS Rehab have reached over 50 people with Parkinson's and provided over 150 free voice, nutrition, educational and movement classes in a COVID-friendly environment!

Join Melanie and thousands of others this year as we continue to make a difference in the lives of people with Parkinson’s. Find a Moving Day near you at MovingDayWalk.org or join Moving Day USA virtually from anywhere in the world.

Shirley Chan, Special Events Volunteer Intern

Shirley Chan supports Parkinson’s Foundation special events across the country, putting on amazing events and raising critical funds for people with Parkinson’s. Shirley says her volunteer work with the Foundation has impacted her in such a positive way. “I have learned more about the mission of the Parkinson's Foundation and seen what really goes into a fundraising event from the backend. Working on different events has allowed me to see what a difference we are making in the community, and I'm glad to be part of that collaborative effort.”

Visit Parkinson.org/InYourArea to find your local Parkinson’s Foundation chapter and learn more about special events taking place near you, or learn more about Parkinson’s Foundation Volunteer Internships by contacting Volunteer@Parkinson.org.

Be sure to check out Parkinson.org/Volunteer to learn how you too can make an impact or contact Volunteer@Parkinson.org.

Did you know our books are now available on Kindle? Read all 12 of our books using your Kindle or Kindle app on your tablet. Every book is written and designed to make life a little easier for people with Parkinson’s disease (PD), caregivers and family members.

Check out all of our books available on Kindle now:

 These books in Spanish are also available on Kindle:

Download our Books on Kindle Now!

More Ways to Access Our Free Resources

Visit Parkinson.org/Library

All our books and fact sheets are always available at Parkinson.org/Library, where you can download them or read them on our site. Visit our PD Library now.

Call Our Helpline

Not sure where to begin? Talk to a Helpline specialist for personalized book and resource suggestions. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.

We are only able to provide Parkinson’s resources like these because of our generous supporters. Consider donating to the Parkinson’s Foundation today.

Whether you have Parkinson’s disease (PD), are a care partner or a loved one to someone with PD, your mental health should never be neglected. Just as we prioritize the importance of exercise and physical health, taking care of the mind is just as impactful to overall wellbeing.

In honor of National Mental Health month, we’ve highlighted the podcast episodes developed to show the importance of managing mental health, featuring experts in the Parkinson’s field.

Tune in to learn about the many ways we can navigate, address and prioritize mental health this month and beyond.

Managing Anxiety with PD

“Anxiety is one of the most common non-motor symptoms we see in Parkinson’s disease. Published estimates suggest that about 30% of people with PD will experience anxiety during the course of the medical condition.”

– Dr. Roseanne Dobkin

Featuring findings on anxiety in PD from the Parkinson’s Outcome Project this episode focuses on the anxiety that people with PD face. Tune in for a discussion with clinical psychologist Roseanne Dobkin, PhD, of Rutgers University about symptoms of anxiety and management strategies.

Download our fact sheet on Anxiety in PD for more information.

Depression in Parkinson's

 “I don’t think it’s a coincidence that a lot of the signs and symptoms of depression overlap with those of Parkinson’s disease. And that’s because of the pathways and circuitry that are responsible for controlling motor function are really interwoven with those that control emotions.” 

– Dr. Irene H. Richard

Depression in PD can be hard to recognize. In this episode, Irene H. Richard, MD, professor of neurology at the University of Rochester, talks about how symptoms of depression are often mistaken for common PD motor symptoms. Listen to the full podcast for more information on depression symptoms and symptom management in PD.

Download our fact sheets Combatting Depression and PD: A Non-Drug Treatment Option to learn more about depression in Parkinson’s disease.

Mental Health in a Medical Setting

“When you’re dealing with a chronic illness, you’re dealing with chronic and perpetual loss: your loss of identity, your grief about things you didn’t get to do, or that you did wrong…” 

– Kara Barton, MSW, LCSW

Mental health issues in PD are not always related to symptom management, but also relate to the feelings of loss associated to the diagnoses. Kara Barton, MSW, LCSW of the Keck Medical Center, refers to the struggles one might face while living with PD. This episode explores how to recognize mental health issues, where and when to access care and even how to access care if insurance doesn’t cover it.

How Mindfulness Techniques Impact the Nervous System: Part 1 & Part 2

“The most commonly used working definition of mindfulness… is really the awareness that emerges through paying attention, on purpose, in the present moment.”

– Angela M. Johnson, DACM, MSTOM, MPH, Lac, Dipl OM

In part one of this series, Dr. Jordan Staenberg, a certified yoga therapist at the Barrow Neurological Institute’s Muhammad Ali Parkinson Center, a Parkinson’s Foundation Center of Excellence, shares how mindfulness can be used to control the body’s emotional and physical state. She also discusses how mindfulness can help the stiffness that some people with Parkinson’s experience.

In part two of this series, we hear from Dr. Angela Johnson, a doctor of acupuncture and Chinese medicine at Rush University in Chicago. She shares mindfulness techniques that focus on being aware of external and internal senses, and how that can translate into relaxation and a mindful existence.

More Than a Movement Disorder: Addressing Mood and Coping

“Not only are there non-motor symptoms such as depression, anxiety and apathy that can occur in addition to sleep changes and cognitive changes, but you’re also coping with a chronic and progressive disorder… it all intermingles with the physiological aspect and can affect you emotionally.”

– Jessica Shurer, MSW, LCSW

Jessica Shurer, MSW, LCSW of the University of North Carolina, Chapel Hill, a Parkinson’s Foundation Center of Excellence breaks down the complexities of mood in PD. Not only can mood changes be a direct symptom of PD, but they can also be a symptom of the changes that the disease has on your life. These changes in mood are not exclusive to people with PD — their care partners and loved ones can also experience the feelings of loss and grief from losing the life they had original planned for. Jessica lays out some coping strategies for people with PD and care partners alike.

Download or order our book Mood: A Mind Guide to Parkinson’s Disease for more information on how Parkinson’s affects mood.

More Than Movement: Addressing Cognitive and Behavioral Challenges in Caring for PD

“For many years, the emphasis in Parkinson’s has been on its motor features —so it’s cardinal features of tremor, slowness, stiffness or changes with walking, but in more recent years in particular there’s been a shift in recognizing that patients can experience these non-motor symptoms and neuropsychiatric symptoms either individually or in combination with these different symptoms throughout the course of their Parkinson’s disease.”

– Jennifer Goldman, MD, MS

Many people with PD experience cognitive and behavioral challenges, some before motor symptoms present themselves and others after motor symptoms have begun. Regardless of the timeline of these non-motor symptoms, Dr. Jennifer Goldman, of Rush University Medical Center, a Parkinson’s Foundation Center of Excellence talks about the importance of treating them just as seriously as motor symptoms. Dr. Goldman has set up an Integrated Cognitive Behavioral Movement Disorder Program at Rush University for such situations.

Download or order our book, Cognition: A Mind Guide to Parkinson’s Disease, for more information on managing cognitive changes in PD.

Neuropsychological Evaluations for PD

“Typically, patients will come in with a very close family member or spouse, and I’ll just begin a general discussion by asking them if they have noticed any changes in their memory or their problem-solving ability or their speech… After I have a good understanding of what a person can do well and what is giving them trouble, I’ll ask about mood and anxiety. Certainly, we know that people with Parkinson’s have problems with a depressed mood and feeling anxious… It’s very important for us to understand if there are any issues going on with mood or anxiety, how might they be relating to what appears to be a problem with cognition.”

– Travis Turner, PhD

Dr. Travis Turner, a neuropsychologist at the Medical University of South Carolina, looks at how the brain influences one’s thinking, behavior and mood. In this episode, Dr. Turner breaks down the process of a neuropsychological evaluation and how it can help patients better manage their Parkinson’s.

Do You See What I See Hallucinations and Parkinson’s Disease

“Until recently, our only options were to reduce Parkinson’s medicines or try antipsychotic medicines that were our best alternatives but were imperfect in many ways. A new class of medicine has recently come along that… has no direct effect on dopamine…”

– Joseph Quinn, MD

Dr. Joseph Quinn, of the Oregon Health and Science University in Portland, a Parkinson’s Foundation Center of Excellence, discusses exciting advancements in Parkinson’s psychosis treatment and management. Dr. Quinn explains that until recently, medications used to treat auditory and visual hallucinations caused dramatic side effects, were burdensome to obtain and effected the dopamine in the brain. Newer medications, that have been approved for Parkinson’s use, do not target dopamine and still treat the auditory and visual hallucinations.

Hallucinations and Delusions in Parkinson’s

“Most people with Parkinson’s don’t develop hallucinations until a number of years into their course — 10 years, 12 years ore even more.”

– Martha Nance, MD

Hallucinations and delusions in Parkinson’s can vary in person to person — in fact, some people with Parkinson’s never experience these symptoms in their disease course. Dr. Martha Nance from the Struthers Parkinson’s Center, a Parkinson’s Foundation Center of Excellence, talks about the different ways hallucinations and delusions can manifest in Parkinson’s, as well as coping mechanisms for those who do experience them.

For more information or questions on mental health and PD contact our Helpline at 1-800-4PD-INFO (473-4636)

Parkinson’s disease (PD) progression, aging and medications can all sometimes impact mental well-being and memory. Identifying what’s behind thinking changes and prioritizing wellness can help you live optimally with Parkinson’s.

This article is based on the Parkinson’s Foundation Expert Briefing presentation Mental Well-being and Memory, with Gregory Pontone, MD, MHS, Director, Parkinson’s Neuropsychiatry Clinical Programs, Johns Hopkins University School of Medicine, a Parkinson’s Foundation Center of Excellence, and Lisa Cone, retired healthcare services executive, Parkinson’s Research Advocate and People with Parkinson's Council member.

Parkinson’s and Cognitive Changes

Parkinson’s disease progression can cause thinking, memory and mood changes for some people. It’s important to address cognitive changes with your PD doctor, especially time and place disorientation, poor judgment or forgetfulness. While these symptoms can indicate disease progression, they can be treated.  

Executive function changes – decreased ability to pay attention, multitask and solve problems – can be frequent in Parkinson’s disease. Take the time needed for tasks.

Memory can also be impacted, such as the ability to learn new information, store and retrieve it. Prompts or clues can be helpful to someone with Parkinson’s.

Some people with PD may have difficulty with familiar tasks, such as using a remote control or computer, organizing medications, or even finding the right word.

Tackle these changes by slowing down, minimizing stress and reducing distractions. Physical therapy can help maintain movement and occupational therapy can help you better navigate your environment.

Staying Well

Research has shown these strategies can also help keep your mind sharp:

• Exercise – especially aerobic – is critical to living well with PD and aging well, too. It’s been shown to improve cognition and minimize medical risk factors for dementia. Find an activity you love and do it regularly.
• Engage in mentally stimulating hobbies such as reading, puzzles, board games, playing an instrument or learning a new language. There's increasing evidence that video games can increase your processing speed, visual-spatial perception and reaction time, too.
• Connect through meaningful social interaction: going to dinner with friends, having people over or joining in community activities can improve memory and boost emotional well-being.
• Sleep well – a minimum of 6 hours nightly is important for attention and executive tasks. Create an 8-hour sleep opportunity window and make it habit to go to bed and wake up at the same time every day. If you nap, try to do it on a schedule. Sleep helps us stabilize memories, retain learning and allows our brains to perform essential glymphatic system operations – brain waste clearance critical to healthy cognitive function.

PD cognition concerns include sudden changes over hours, days, or weeks. These are usually not Parkinson’s related. Often due to a medical issue, acute mental status changes should be quickly addressed. Abrupt disorientation or confusion requires immediate medical attention. Causes can include infections, dehydration and medication side effects.

Other possible cognition challenges can include depression. While not always an emergency, depression can also cause a somewhat sudden change in people's cognitive ability.  

Neurogenic orthostatic hypotension – a condition where blood pressure drops sharply when someone stands up getting out of bed or rising from a chair – affects up to 70% of people who live with PD. Its side effects can include dizziness and difficulty thinking.

Other Causes of Cognitive Change

Aging, medications or other influences can cause mental and memory changes in PD, too.

As we age, we tend to maintain our long-term know-how. Vocabulary and general knowledge can remain stable, or even increase, throughout a person’s 70s. Visual perception of objects also remains stable and older people may be more accurate in judging distances than younger folks. Language remains stable, too, at least until age 70.

Aging, however, can impact:

• Focused and divided attention – such as multitasking.
• Working memory – remembering directions or instructions, for example.
• Multitasking abilities. 
• Processing speed.

Reversible cognitive impairment issues can impact thinking, also. They can include:

• Sleep disturbances, such as obstructive sleep apnea.
• Vitamin B12 deficiency, diagnosed through a simple blood test.
• Hypothyroidism, which can also be detected through blood tests.
• Depression, or severe depression, which can masquerade as dementia.

Medications can impact PD too. Parkinson’s results in the loss of dopamine-producing neurons in the brain. Anything that further interferes with dopamine production can worsen cognition and other symptoms. Parkinson’s is also associated with a lower level of the brain chemical acetylcholine, important to cognition. Anticholinergic medications – used in many therapies, including some asthma, antihistamine and antidepressant medications – block acetylcholine.

Other medications can interfere with cognition too, including:

• Some psychiatric and antipsychotic therapies.
• Certain bowel motility (movement) medications.

Work with your doctor, who can help pinpoint what’s behind any cognitive changes, recommend the best therapy and make medication changes or adjustments.

Discover More

• Cognition: A Mind Guide to Parkinson’s Disease
• More Than Movement: Addressing Cognitive and Behavioral Challenges in Caring for PD
• Do You See What I See Hallucinations and Parkinson’s Disease

The Parkinson's Foundation is here for you at every stage of your journey. Call our Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org for expert resources near you or answers to your questions.

The Parkinson's Foundation, in collaboration with the American College of Sports Medicine, created new Parkinson’s disease (PD) exercise recommendations to ensure that people with Parkinson’s are receiving safe and effective exercise programs and instruction. The guidelines are the result of a convening including 34 exercise professionals and thought leaders who met in March 2020 to help develop the framework for these guidelines.

The new exercise guidelines include recommended frequency, intensity, time, type, volume and progression of exercises that are safe and effective for people with Parkinson’s across four domains: aerobic activity, strength training, balance, agility and multitasking and stretching. Each recommendation is paired with specific types of activity and special safety considerations for people with PD.

It is recommended that people with PD see a physical therapist specializing in Parkinson’s for full functional evaluation and recommends exercise during ‘on’ periods, when taking medication. The guidelines also recommend 150 minutes of moderate to vigorous exercise per week for people with Parkinson’s. Other key recommendations include:

• Aerobic activity: 3 days a week for at least 30 minute per session of continuous or intermittent movement at moderate or vigorous intensity
• Strength training: 2-3 non-consecutive days per week of at least 30 minutes per session for 10-15 repos for major muscle groups; resistance, speed, or power focus
• Balance, agility and multitasking: 2-3 days per week with daily integration if possible
• Stretching: 2-3 days per week with daily stretching being most effective

Research from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s, suggests that people with PD do at least 2.5 hours of exercise a week for a better quality of life. The new Parkinson’s exercise guidelines aim to support the Parkinson’s community in staying active. The guidelines also provide an important framework for exercise professionals, who play a vital role in developing safe and effective programs to improve quality of life for the PD community. 

Learn more:

• Read the Parkinson’s Foundation exercise recommendations
• Read see the full Exercise Convening Summary Report
• Exercise professionals can review the professional version of these guidelines

In the same way no two people with Parkinson’s disease (PD) experience identical symptoms, there is no one-size-fits-all approach to caregiving. Regardless of where you are in you care partner path with your loved one ― from newly diagnosed to advanced stages ― finding your support system is invaluable.

We asked caregiver support group leaders what advice they would give care partners:

1. “Take care of yourself first and get involved in a support group.”
   – Jan B., Touchmark Caregiver Support Group Leader, Ridgefield, WA
2. "Seek out others who are walking this same journey; you are not alone and need to be able to share honestly and openly with someone who can really understand what you are experiencing.”
   – Virginia D., care partner, Team Spark Support Group Leader, Grand Rapids, MI
3. “Learn as much as you can about the disease and know that you are not alone. There is help out there all around you.”
   - Rae Marie E., care partner, Coaches Huddle Support Group Leader, Napa, CA

4. “Take care of yourself first so that you have energy to support your loved one. Take breaks, don't be too hard on yourself and don't feel guilty doing things that you enjoy.”
   – Lynda E., care partner, Brainerd Lakes Area Parkinson's Support Group Leader, Baxter, MN

5. “I would encourage someone to PLAN ahead but to LIVE in the moment. Each day is so unique, and each moment can be joyous or difficult. ALL emotions are valid ― even the ones commonly viewed as negative. They are each allowed to feel exactly as they need to in the moment.”
   – Celeste H., Houston Area Parkinson Society Caregiver Support Group Leader, Houston, TX

6. “I cared for my mother who had atypical PD. I would advise caregivers to be patient and make time for themselves. I would also encourage people to simply spend time with their loved ones. Spending time with them in the present moment is the greatest gift for them now, and something you will cherish after they are gone.”
   – Nicole H., former care partner, Pioneer Memorial Rest Home Support Group Leader, Mullen, NE

7. “Understand grief in children and how it can manifest itself. You aren't only caring for the person with Parkinson’s, but the people who surround that person as well, including yourself.”
   – Michelle F., young-onset care partner, KCPWP: Kids and Caregivers of People With Parkinson’s Support Group Leader, Mapleton, UT

8. “Join a support group.”
   – Pat F., care partner, Whine & Dine Caregivers Support Group Leader, Knoxville, TN

9. “Be involved in your partner’s doctor visits and medication. Take care of yourself!”
   – Elizabeth H., care partner, Fearington Parkinson Support Group Leader, Pittsboro, NC

10. “We have PD. You are in this together. Learn all you can about the disease. Take the LSVT BIG program as soon as possible. Learn about all the specific programs for PD for your partner to participate: Rock Steady Boxing, PWR, Let’s Ride, Dance for PD, other exercise.”
    – Paula H., care partner, Central Bucks Parkinson's Support Group Leader, Colmar, PA

11. “Keep active and be happy with what you are able to do rather than looking at what you can’t do.”
    – Myra H., former care partner, Cherry Hill Parkinson’s Support Group Leader, Willingboro, NJ

12. “Be patient, read all you can, talk to as many people as you can, share info.”
    - Mary Ellen P., care partner, Partners with Parkinsons Support Group Leader, Richmond, VA

13. “Be sure to open your mind up to joining support groups and sharing your journey. You will find you are not alone and can learn so much from hearing others story, find much needed support and your story will be relatable and helpful to others.”
    – Dawn R., Aloha Carepartner PD Support Group Leader, Marietta, GA

14. “Take it day by day and make sure you are carving out time for yourself on a regular basis or you will not have the energy/health for the long run.”
    – Kristen S., care partner, Northwest Ohio Caregiver Support Group Leader, Waterville, OH

15. “Live each moment. Not everyone's walk with PD is the same, but meaningful information, encouragement and strength can be found at support group meetings.”
    – Darla D., care partner, Western Oklahoma PD Support Group Leader, Weatherford, OK

16. “Attend as many doctors appointments with their partner as possible to learn about the disease, expectations for the future and care plans. Do not to Google anything!”
    – Kelly W., person with Parkinson’s and care partner to her father with PD, NorthShore Active Life PD Support Group Leader, Chicago, IL

17. “Patience, patience and a bit more patience .... with yourself and your person with Parkinson’s.  This was told to me someone living with PD for 20+ years. It has served my wife when she was living and myself very well.”
    – Jarrig V., former care partner, St Albans Parkinson's Outreach Program Leader, Swanton, VT

For more articles and resources devoted to care partners visit Parkinson.org/Caregivers.

It’s summertime! After a particularly challenging 2020, taking care of yourself and managing your Parkinson’s disease (PD) has never been more important. Whether you’re eager to resume in-person social activity or you feel more comfortable at home, read on for five ways to make the most of summer 2021.

1. Move your body

The sun is shining, the weather is warm — get outside and move! Exercise not only feels great, but it can also improve your physical PD symptoms and slow the progression of the disease. Here are ways you can get started right now:

• Sign up for a non-contact boxing class at your local gym or use our chapter resources to find a PD-tailored class near you.
• Design your own at-home exercise plan with our Fitness Friday workouts.
• Sign up for a Moving Day event in your area to raise awareness for Parkinson’s and connect with other members of the PD community.

2. Join a Parkinson’s support group

Summer is a great time to make new friends! Support groups give people living with PD and their care partners the opportunity to learn from peers and share their experiences in an understanding environment. Let us help you with this process:

• Listen to our podcast to better understand what PD support groups offer and how participating in one can benefit you.
• Join a local in-person support group or attend a virtual support group from home.
• Looking for a new support group? Check out PD Conversations to join our online network of support.

3. Get creative in the kitchen

Switch up your everyday dinner routine and try out a new summer recipe! Practicing good nutrition can help alleviate PD symptoms and offer other health benefits as well. Follow these tips to get cooking:

• Take a cooking class. Bring a friend and learn to cook together – or go solo and surprise everyone with your new skills.
• Challenge yourself to cook one new recipe every week. Our Foodie Friday video series demonstrates how to make quick, delicious meals at home!

4. Take a meditation class

Mental wellness is equally as important as physical wellness. Incorporating mindfulness into your weekly routine will keep you relaxed and ready for more summer fun! These ideas will keep you calm:

• Go to a meditation or yoga class at your local wellness center to relax your mind and body.
• Register for an upcoming Mindfulness Monday virtual event to learn guided relaxation techniques and start your week with calmness.
• Meditate using an app in nature – find a quiet space in your backyard, at a local park or the beach.

5. Learn more about Parkinson’s

Part of living well means understanding how Parkinson’s disease plays a role in your life. Gaining more knowledge about PD now can benefit you and your family in the future! Start learning with our online resources:

• Participate in our PD GENEration study, which offers genetic testing and counseling at no cost for people with Parkinson’s disease. In-person testing is available at participating Centers of Excellence, or you can register for an at-home appointment.
• Listen to our podcast for information on PD-related topics like exercise, clinical trials and nutrition.

No matter where your summer plans take you, the Parkinson’s Foundation is here for you. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find resources in your community. Stay healthy and safe!

For more than a decade, the Parkinson’s Outcomes Project has captured the experiences of people with Parkinson’s disease (PD) and care partners on topics such as medications, treatment, exercise and lifestyle. How has this essential data helped make life better for people with Parkinson’s?

When researchers analyze the experiences of more than 13,000 people living with PD who seek treatment within the Parkinson’s Foundation global Centers of Excellence network, they can identify new and better ways to provide care and manage Parkinson’s. The goal of this study is to improve health outcomes and quality of life for people with Parkinson’s and care partners.

Parkinson’s Outcomes Project research has led to several findings that have already improved care within the PD community. Four primary landmark findings include:  

Exercise and Physical Therapy

Increasing physical activity to at least 2.5 hours a week can slow the decline in quality of life and help people with Parkinson’s live fuller lives. At the same time, referrals to physical therapy during the early stage of disease can help prevent hospitalization and falls. These findings led to the establishment of the Exercise Initiative, partnering with physical therapists and exercise professionals nationally.

Mental Health 

Depression and anxiety are the top factors impacting the overall health of people with Parkinson’s. This understanding has led to greater supports across Parkinson’s Foundation Centers of Excellence as well as a dedicated sub-study looking at mental health.

Hospital Care

People with Parkinson’s are hospitalized 1.5 times more often than their peers without Parkinson’s, and these visits bring with them a host of complications. These findings resulted in the Foundation’s Hospitalization Initiative to drive culture and policy change at the hospital administration level. Learn more about the Parkinson’s Foundation hospitalization kit now.

Caregiving

The cost of caregiving increases 180% from early to advanced stages of Parkinson’s, with female care partners predominantly (72%) carrying the weight of care. Acknowledging these factors and how to best provide day-to-day care will help improve the quality of life for those with Parkinson’s and their care partners.

The Next Generation of Parkinson’s Research

The impact of the Parkinson’s Outcomes Project continues to direct the work of the Parkinson’s Foundation. Next, the study will next focus on recruiting more participants who are part of traditionally underrepresented populations in clinical research. The study will work to better understand the PD experiences of people with Young-Onset Parkinson’s, newly diagnosed, early and late-stage disease progression and broader ethnic and racial diversity.  

The Foundation is underway with the next phase of the study, genetic testing offered through PD GENEration: Mapping the Future of Parkinson’s Disease. Genetic testing is a powerful tool that can help people learn more about their own disease, uncover biological pathways that cause Parkinson’s and can accelerate the development of improved treatments and care for all people with Parkinson’s. 

“Together, the Parkinson’s Outcomes Project and PD GENEration will help researchers understand why and how Parkinson’s develops,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer. “These initiatives may also answer questions that researchers may never have asked, providing hope and a vision towards a cure for PD.”

For the full update from the field, read Parkinson’s Outcome Project: Improving the lives of people living with Parkinson’s through research. In this publication, we highlight landmark findings, how this research guides Foundation priorities, what’s next for the study and more. Read it now. 

Download the PDF

Learn more about the Parkinson’s Outcomes Project at Parkinson.org/Outcomes.

In the context of the COVID-19 pandemic, telehealth medicine has emerged as an essential tool for accessing healthcare. This trend has led to increased demand for evidence-based digital treatments, known as digital therapeutics. In response to the demand, the development of digital therapeutics is being fast-tracked in the scientific research community and utilized among people with Parkinson’s disease (PD). Although anyone can create and offer downloadable wellness apps, digital therapeutics require they be based upon rigorous, evidence-based studies that clinically demonstrate their effectiveness. 

Since digital therapeutics is an evolving, new technology, still lacking extensive data, it is essential that potential real-word benefits and shortfalls be investigated. A recently published study in the Journal of Parkinson’s Disease, titled, “Digital Therapeutics in Parkinson’s Disease: Practical Applications and Future Potential,” (Ellis & Earhart, 2021), explored recent and emerging evidence for using digital therapeutics to facilitate lifestyle changes and motor (e.g., walking) and non-motor (e.g., sleep, anxiety) Parkinson’s symptoms, with the goal of determining whether participant outcomes might be improved.

As part of this research, researchers reviewed multiple studies. Information provided concerning the length of studies, types of studies, study design, study demographics, number of participants and statistical significance varied greatly. Additionally, most studies were not PD population-specific. 

Researchers analyzed the following studies: 

Results

Digital Therapeutics to Improve Walking  

A one-year, single-blinded randomized controlled trial of people with mild to moderate PD in which participants were given a video-taped custom-tailored exercise program designed to help with walking. After uploading the video as a mobile app for their personal use, participants were required to enter personal data related to their adherence to the program, pain, and level of difficulty. This data was monitored remotely by a physiotherapist with whom the participants could message, ask for help, receive encouragement, etc. The physiotherapist would also adapt the exercises based on the progress achieved. 

An increase in daily steps and moderate intensity minutes was experienced by both groups, with clinically meaningful improvement achieved by the less active group.

Digital Therapeutics to Improve Non-Motor Outcomes

A six-session, single-blinded randomized controlled study of 1,711 adults compared digital cognitive behavioral therapy (CBT), delivered via web or mobile, with standard sleep education hygiene, for insomnia on health, psychological well-being, and sleep-related quality-of-life. Treatment consisted of a behavioral component (e.g., relaxation), a cognitive component (e.g., mindfulness) and an educational component (e.g., sleep hygiene). Participants could view their progress, treatment strategies, sleep schedule and educational materials via the platform at their convenience. An interactive, animated virtual therapist provided support and advice based upon the goals set by the patients at the beginning of the study. Participants also uploaded daily data in the form of a sleep diary. 

The CBT approach resulted in a small improvement in functional health and psychological well-being. It also resulted in a large improvement in sleep-related quality-of-life compared with sleep hygiene education — after four weeks and 24 weeks. This study was not conducted among people with PD but suggests potential benefits for people with Parkinson’s.

Digital Therapeutics for Virtual Coaching & Healthy Lifestyle Promotion  

A 12-week study used an artificial intelligence virtual coach to provide instant messaging (to personal devices) focused upon fostering a Mediterranean-style diet and an increase in physical activity. Eighty-one inactive (mostly overweight or obese) adults, ranging in age from 45 to 75 participated in a proof of concept study (testing whether the concept could realistically work). Weekly check-ins concerning participants’ step counts and dietary choices were recorded. 

Physical activity was increased by an average of 109 minutes per week. There was also an overall average weight loss of about 2.8 pounds. Thus, practicality was excellent in terms of recruitment, retention (90% at 12 weeks) and safety. Limitations of this study include a lack of a control condition and a relatively short follow- up period.

What Does This Mean?

The COVID-19 pandemic put the need for remote healthcare in fast-forward. Digital therapeutics — which combines sophisticated technology with evidence-based medicine — shows great promise. It is a meaningful step forward towards more personalized medicine, and could enhance the preferred, more holistic, interdisciplinary approach for managing PD. 

However, there is much work to be done. Digital therapeutics remain underdeveloped and underutilized. In addition, while proof-of-concept studies in the general population are valuable, more studies specific to the PD population are needed. 

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about telehealth, COVID-19 and its impact on the PD population by visiting the below Parkinson’s Foundation resources, or by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

• COVID-19 & Parkinson’s
• Parkinson’s Foundation Shares PD GENEration Remote Recruitment Findings at American Academy of Neurology Annual Meeting
• Telehealth and Parkinson's
• Telehealth Use Up Markedly Among Parkinson’s Patients

Being a care partner for a loved one can be meaningful, but the stress of this role can be exhausting as well. Finding the time and energy to take care of yourself while being a care partner is difficult, but it is important to be intentional with your own physical and mental health.

During the Parkinson’s Foundation Care Partner Program: Staying Healthy as a Care Partner, Amy Goyer, AARP’s Family and Caregiving Expert, answered the most common questions about staying healthy while also being a care partner to a person with Parkinson’s disease (PD).

Why is it important for care partners to stay healthy?

It can be easy to ignore your needs while being a care partner, but your needs are just as important as your loved one’s needs. Care partners often prioritize those who need care over themselves. This can result in caregiver burnout.

Like a car, we cannot run on empty. You have to keep putting gas in your car, it is not a one-time thing. The same is true for yourself — you are going to run out of energy if you do not make time to care for yourself. Self-care is necessary to caring for your loved one and staying healthy. Remember that healthy habits sustain us.

You and your loved one are on the same team. As a team you are taking care of them and taking care of you. Be honest and discuss your needs, together.

What role can support groups play in helping care partners share their feelings?

A support group is a safe place for care partners and loved ones. This is a great opportunity to express your feelings and process through your journey. You should look for a support group that fits your needs and personality. Tips to find a support group:

• Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a support group in your area.
• Ask your loved one’s neurologist or specialists for support group recommendations.
• Utilize the Parkinson’s Foundation In Your Area search.
• Ask your questions in the online forum, PD Conversations.

Once you have found a potential support group, reach out to the support group leader to discuss what to expect within the group.

What can care partners do on a daily basis to ensure their loved one’s ongoing needs are met, without derailing their day?

There needs to be an expectation for interruptions. As a care partner, you have to prepare for change. is vital to nurture your own ability to be flexible and expect the unexpected. Flexibility will mean these interruptions do not feel as unsettling, but rather every interruption is an obstacle that can be worked out. You should also get more help as your loved one’s needs increase, so you can continue to live your life.

Your self-care routine and time are important. Many care partners view their self-care routine as not necessary, but self-care is key to having a healthy lifestyle. Everyone’s self-care routine and timing are unique, but just because your loved one’s needs may be increasing, does not mean your needs are decreasing. There will be times when your routine is interrupted, but it is important to return to your self-care routine and prioritize your needs.

How can care partners regularly assess their mental health to ensure they are getting the support that they need?

It is important to regularly assess your mental health. Oftentimes care partners can experience guilt when taking time for themselves. Guilt is a natural emotion, but it is not something you have to carry on your own. Here are some ways to check-in on your mental health and find support:

• Reach out to friends and family.
• Meet with a mental health professional on a consistent basis.
• Journal to process your experiences.
• Practice mindfulness to ease stress and expand your perspective.
• Participate in our PD Health @ Home events.

It can be difficult to maintain a healthy lifestyle as a care partner, but you are not alone in this journey. The Parkinson’s Foundation has many resources to help you as a care partner, and we want to help you find what works best for you.

Sign up for self-paced courses today through our Care Partner Program.