When the Parkinson’s Foundation held its 2020 Care Partner Summit | Cumbre para Cuidadores, care partners from around the world asked our panelists about self-care.

Self-care can be described as “the practice of taking an active role in protecting one’s own well-being.” As individuals, we all need different things — it’s important to retain a meaningful relationship with yourself and manage your well-being in order to effectively care for your loved one with Parkinson’s disease (PD). Your needs are important, too!

There are several types of self-care that can enhance your ability to thrive and to be a better care partner. Different types of self-care include:

• Physical self-care
  • Ensure you are sleeping and eating well, as well as getting enough exercise.
  • Implement stretching exercises into your daily routine.
• Emotional self-care
  • Take some time to reflect on how you are feeling, even if you are experiencing difficult emotions.
  • Treat yourself like you would treat a friend going through a hard time.
• Intellectual self-care
  • Stimulate your brain with things that are fun for you. This could include reading a book, writing your PD Story, listening to your favorite music or watching your favorite show.
• Spiritual self-care
  • Doing things that feel spiritual to you, such as helping someone else, starting a gratitude journal or self-prayer.
• Adventurous self-care
  • Try something outside of your normal routine. This can help you maintain an identify outside of being a care partner and enjoy other parts of your life.
• Sensory self-care
  • Indulge your five senses. Light your favorite candle, listen to some music or simply sit and enjoy the silence.

Take some time to brainstorm how you can best care for yourself. What needs are currently not being met. How can you meet them? You may find yourself asking some of the following questions:

How can I make time for myself when I do not have any help?

This answer will differ for each care partner because everyone’s journey with PD is so different, but it is possible to make time for yourself while you are a full-time care partner. If you are struggling to get outside help, try to shift the time you have with your loved one into activities that will provide you some level of self-care. Some examples of this are:

• Exercise with your loved one. Join an exercise class that can benefit you both or schedule your exercise class for the same time as theirs. Check out Fitness Friday videos.
• Plan your favorite activities for you and your loved one to do together. This, of course, depends on how independent your loved one with PD is, but can be individualized as needed.
• Strategically plan your schedule around theirs. Waking up an hour before your loved one can give you time to do something on your own ― even if it’s just enjoying a cup of coffee.
• Recruit family members and friends to do fun online activities with your loved one while you get some alone time.

Finding time to take care of yourself will require some creativity but will be worth it in the end.

How can I live my own life, fully, without feeling guilty that I’m leaving my loved one behind while I’m enjoying myself?

Many care partners experience care partner stress and guilt, but it can help to remember that guilt is rarely a productive emotion to feel. What is productive is realizing that you cannot be the best care partner if you do not take care of yourself first.

When we are actively taking care of ourselves, we are actively taking care of the person with PD, similar to putting your mask on first in the event of an airplane emergency. Plan something that your loved one enjoys whenever you are out enjoying yourself ― this way, you can rest assured that you are both enjoying yourselves.

How do my partner and I maintain our identity apart from Parkinson’s?

You must be intentional! Unfortunately, you can’t wait for the time that will make you feel like your old selves again. Plan activities that you both used to enjoy, even if they need to be adjusted. Try these tips: 

• Set one day a week where neither of you say the word “Parkinson’s.” Go through your routines but try to not say the “P” word — this might help you both remember that your world does not revolve around Parkinson’s.
• Remember that your care partner identity overlaps with your other roles (spouse, friend, partner, child, etc.).
• Talk about identity with your loved one. It is important they know you need to step out of your care partner role a little bit, and more into your other roles. You might be surprised how much they want that for you, too!
• Think of small ways your loved one can help you throughout the day — maybe they can get the mail or can give you 30 minutes of uninterrupted time each day.

Being a care partner is hard work, but it is not all that you are or all that you do. Remember to utilize our care partner resources:

• Sign up for a course! The Care Partner Program: Building a Care Partnership is a series of online courses you can take at your own pace.

• Read Caring and Coping at Parkinson.org/Library.

If you have questions about Parkinson's or caregiving, contact our toll-free Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

This article is based off the Parkinson’s Foundation Care Partner Summit presentation, “Your Questions: Self Care” panel, which included PD experts Elaine Book, MSW, RSW, Center Coordinator and Clinic Social Worker at Pacific Parkinson’s Research Center; Joan Hlas, MSW, LISW, CREATE Program Supervisor and Clinic Social Worker at Struthers Parkinson’s Center; and Jessica Shurer, MSW, LCSW, Center Coordinator and Clinic Social Worker at University of North Carolina at Chapel Hill.

The secret to all good relationships is that they take effort. The key to true intimacy is finding the time to connect emotionally, but this can be challenging, particularly for people living with young-onset Parkinson’s disease (YOPD).

Often when navigating careers or raising families while also managing Parkinson’s disease (PD) symptoms, those diagnosed before age 50 and those who love them may put their relationships on the back burner. Prioritizing intimacy is important ― it can spark joy, rekindle romance and lead to deeper connection.

This article is based on a Parkinson’s Foundation Expert Briefing “Partnering: The Dance of Relationships and Romance” presented by Sheila Silver, MA, DHS, ACS, an Oregon-based clinical sexologist with expertise in maintaining physical and emotional intimacy Parkinson's.

Building Intimacy

Tackling everyday life can be demanding, particularly when living with a chronic illness. It can be easy to take our closest relationships for granted. Enacting strategies to foster emotional intimacy ― the closeness that couples share when both feel secure in their relationship and love and trust one another – helps people reconnect when life gets in the way.

Husband and wife clinical psychologists John and Julie Gottman have researched successful relationships for four decades. In interviewing more than 3,000 couples, the Gottmans identified that partners with the deepest emotional connections take care to be calm, kind and considerate with each other. These couples also share several other successful behavioral strategies, including:

• Say “I love you” every day, with meaning. In the thick of problems, disagreements or upsets, couples can lose sight of their love for each other. Take time to look your partner in the eye and say these words daily.
• Keep playing and having fun together. It’s easy to get caught up in the things that we need to do to maintain our health and our well-being, especially when living with Parkinson’s. It’s important to make time to celebrate the joy and fun of our relationships.
• Turn toward each other. If you're feeling distant from your partner, look at your body language. Do you regularly turn away? Turning toward one another can bring you closer.
• Give surprise romantic gifts often. A simple flower or note, or even something small from the grocery store can make a big impact. Surprise gifts tell your partner you are thinking of them while you’re apart.
• Take romantic vacations. As the COVID-19 pandemic continues, travel can be challenging. Planning a romantic trip for the future can give you both something to look forward to. Or taking a short trip to nearby place ― with safety precautions in place ― can also break up the daily routine and help you reconnect.
• Schedule weekly dates. Whether you make an appointment to spend time on the couch together one night a week, or pack sandwiches and go on a picnic, weekly dates can help you shed your daily roles and responsibilities and enjoy each other’s company.
• Stay good friends. Amid your day-to-day responsibilities and obligations, remember to laugh together. Reflect on why you chose each other and what brought you close. Remind yourself that you’re committed to each other and your relationship for the long haul.
• Cuddle and kiss one another passionately. Physical acts of spontaneous affection can rekindle romance.
• Practice physical intimacy. Sensual proximity and touching that expresses your feelings can strengthen a couple’s bond. This can be unique to each relationship and doesn’t have to lead to sex. Schedule time on your calendar to be physically affectionate and show up with a willingness to spend time together.
• Communicate. Talk comfortably about your relationship and sex life. Know what turns your partner on and off erotically and talk about any intimacy challenges ― physical or emotional ― either of you face. Discovering and working through these challenges is key to intimate relationships. A therapist or counselor can help improve communication.

The Little Things

Intimacy doesn’t just happen. It’s the little things, intentional daily efforts, that build closeness and connection in our relationships. While Parkinson’s disease can change relationship dynamics, it can also bring couples closer together. Treating those closest to us with kindness, patience and love ― things that can sometimes fall by the wayside in long-term relationships ― goes a long way.

Remember to share concerns about anxiety, depression and changes or difficulties in sexual performance with a healthcare professional.

PD medications can create hypersexuality or impulse control issues, or affect sexual function. It’s important to discuss those issues with a doctor, who can adjust medications or offer other treatment options.  

For more information, read our Intimacy & Parkinson's article.

When many first hear the term palliative care, they can misinterpret it as end of life care. However, palliative care is an option for anyone with Parkinson's disease (PD) to receive additional support, even at the point of diagnosis. It can help at any PD stage, specifically with treating pain management; encompassing spiritual care and helping people with Parkinson’s and their family navigate emotional challenges. It can also compassionately create a safe space for one to explore, and ultimately share, their end-of-life directives.

What if that level of holistic care wasn’t reserved for the final weeks of life, but rather was incorporated into standard care in the PD population? How might that impact the quality of life and symptom burden for people with Parkinson’s and their caregiver?

Recently published in the journal, JAMA Neurology, “Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial” (Kluger et al., 2020), a one-year comparative study investigated palliative care and its effects on patient and caregiver.

Study participants included 210 patients (135 men, 75 women), predominantly white, married, college-educated, with an average age of mid-60s. The caregiver participants were composed of 175 people (47 men, 128 women) — 143 of whom were the patients’ spouse. The study was conducted at three academic medical centers: University of Alberta (Alberta, Canada), the University of Colorado (Aurora, CO), and the University of California (San Francisco, CA).

Participants were randomly assigned to receive one of two courses of treatment:

• The standard of care option: provided by a neurologist and a primary care physician.
• The integrated palliative care option: included the standard of care, plus a chaplain, a social worker and a nurse using a palliative care checklist — who could also access additional guidance from a palliative medicine specialist. Palliative care visits were performed either in person or by telemedicine every three months.

The study primarily measured a change in quality of life of patient and caregiver burden. Also measured were: symptom burden; patient and caregiver mood (anxiety and depression); patient and caregiver grief and spiritual well-being; patient and caregiver patterns of health care use; motor symptoms; and, cognitive functioning.

Results

Comparing participants receiving palliative care with those who received standard care alone, after six months:

• Patients receiving palliative care had better quality of life
• Patients receiving palliative care had better symptom burden
• Patients receiving palliative care experienced less grief
• Patients receiving palliative care had better rates of completing their Advanced Directive Completion (end-of-life preferences)
• Patients receiving palliative care had statistically and clinically significant benefit in motor symptoms

Comparing palliative care and standard of care caregivers:

• Palliative care caregivers experienced less anxiety
• No other significant differences were found in caregiver burden

What Does It Mean?

This study found that introducing palliative care significantly improves quality of life for people with Parkinson’s — not just emotionally, but also physically. The study authors share that while these motor improvements were unexpected, they may reflect, “an unanticipated benefit of our palliative care team’s general goal of encouraging activities that promoted joy, meaning and connection.” Additionally, the caregivers in the palliative care group also experienced less anxiety themselves — with no increase in caregiver burden. Interestingly, not a single outcome measure favored receiving standard care alone.

Of note, the study’s main limitation was its lack of diversity among study participants; more than 70% of the participants were white. Incorporating a far more diverse population needs to be included as this important research moves forward.

At its core, palliative care is a caring, holistic approach that optimizes quality of life for as long as possible. Loved ones and caregivers benefit as well, often transforming an otherwise frightening, overwhelming and painful journey into a sacred passage. Introducing this level of care and connection could make all the difference in quality of life.

Learn More

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

• Palliative Care and Hospice: 5 Tips for Advocating for Yourself and Your Loved One
• Special Challenges of Caring for Someone with Parkinson’s
• Podcast Episode 41: Palliative Care as Supportive Care in PD
• Parkinson’s Foundation Launches Palliative Care Program Across U.S. Centers of Excellence
• Caring for Someone with Advanced Parkinson’s
• Get Palliative Care: Directory

During the time of COVID-19 are people with Parkinson’s disease (PD) frequently experiencing anxiety? Are they using telehealth services to see their medical team? Are they exercising less or more often than before the pandemic? A Parkinson’s Foundation survey sought to answer these questions and more.

As the COVID-19 pandemic continues, little is known about its impact on the health and day-to-day activities of people with Parkinson’s. The Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence administered a survey to people with Parkinson’s to provide guidance to clinicians, policy makers and the PD community on how COVID-19 has transformed the lives of people with Parkinson’s and their access to care.

“People with Parkinson’s encounter numerous difficulties during normal times, especially when it comes to receiving proper PD medications when admitted to hospitals,” said Phil Gee, Parkinson's Foundation People with Parkinson’s Advisory Council Member. “I am grateful that the Parkinson’s Foundation initiated this COVID-19 survey to capture how people with Parkinson’s disease are coping during this pandemic.”

What did the survey measure?

This survey was administered between May 2020 and June 2020, receiving 1,342 completed responses from people with PD.

The survey asked people with PD about their:

• COVID-19 health status
• Emotional health
• Attitudes and practices related to changes in their routine since the pandemic began
• Telehealth use and satisfaction

Results

Almost all survey respondents came from within the U.S. Respondents live across states that experienced all levels of COVID-19 infection. The average age for respondents was 71, and the average time they have lived with Parkinson’s was seven years.

Diagnosed with COVID-19 and Parkinson’s

Only 17 (1.3%) survey respondents with PD reported a COVID-19 diagnosis by a health provider, five of which had a test to confirm the diagnosis. Within this small group, the most reported COVID-19 symptoms included: fatigue (71%), muscle pain (59%), body aches (59%), cough (63%), headache (47%) and shortness of breath (47%). COVID-19 symptoms lasted an average of 13.5 days.

Mood

More than half of respondents experienced nervousness or anxiety (67%), feeling down or depressed (51%), reduced interest or pleasure in doing things (54%) or sleep disturbances (66%) in the six weeks prior to the survey. Women were more likely to experience these symptoms than men, with the exception of experiencing a reduced interest or pleasure in doing things.

Respondents who reported experiencing frequent mood disruptions (anxiety, worry, depression, reduced interest, sleep disturbances or isolation) during the pandemic where asked to explain why.

• Anxiety was most often attributed to the fear of respondents getting infected (22%) and not knowing when COVID-19 would be resolved (13%).
• Depression was most often attributed to the inability to see or have physical contact with family and friends (16%) and having a history a depression unrelated to COVID-19 (12%).
• Loss of interest was most often attributed to not leaving the house (14%), having lost interest and apathy prior to COVID-19 (14%) and hopelessness or negative feelings about the future (13%).
• Sleep problems were attributed to problems not related to COVID-19 (36%) or worry related to COVID-19 (34%).

Physical and Social Activities

Most people with PD (85%) felt that their personal life had changed during the COVID-19 pandemic. Nearly half of people with Parkinson’s noticed some negative change in their Parkinson’s symptoms during the pandemic, but most people with PD said they had no negative change in their relationship with members of their household (65%) or the frequency of their communication with others (75%).

Almost half of People with Parkinson’s (45%) reported reduced hours of exercise, and 73% reported a reduction in activities outside of their home.  However, most respondents reported that activities were available online (82%), among whom 92% participated. The most common virtual sessions attended included exercise/wellness class (58%), support groups (32%), recreational classes (13%, religious services (46%), educational events (36%) and other (22%).

As a response to COVID-19, to help ease the challenges of physical distancing, the Parkinson’s Foundation launched PD Health @ Home ― an interactive series of virtual events designed for the Parkinson’s community. To date, more than 230,800 participants have participated in the virtual programming. Currently, PD Health hosts innovative weekly expert-led educational webinars, guided mindfulness sessions and tailored fitness videos. See all upcoming PD Health @ Home events.

Telehealth

This survey measured the use of telehealth services for people with PD during COVID-19. Telehealth use increased from 10% prior to the pandemic to 64% during the pandemic. Those with higher income and higher education were associated with telehealth use.

People used telehealth most often for a doctor’s appointment compared to other health therapies (mental health, physical therapy, occupational therapy and speech and language pathology). Among those who had utilized services, almost half (46%) preferred to continue using telehealth always or sometimes after the coronavirus outbreak had ended. However, having received support or instruction for telehealth and having a care partner, friend, or family member help with the telehealth visit increased the likelihood of using telehealth after the pandemic ended.

Key Takeaways

While better understanding the COVID-19 experiences of people with PD, looking at the bigger picture, survey results suggest several urgent unmet community needs.

The most notable shift within the PD community is the widespread use of telehealth. Telehealth use significantly increased 54% during the COVID-19 pandemic. However, results made it clear that the PD community urgently needs the expansion of telehealth services to include additional physical, occupational psychological and speech therapies, along with more support for how to use telehealth services and better reaching underserved (low income) populations.  

New strategies must be developed to make telemedicine more available to all prospective users. The COVID-19 pandemic has differentially impacted people from lower socioeconomic status and extending telemedicine services to economically disadvantaged populations may help reduce disparities.

Depression and anxiety symptoms were prevalent in people with PD during the pandemic. Household income and employment status were found to be important factors in predicting mood disturbances. Our data strongly suggest disparities across socioeconomic status in people with PD during the COVID-19 pandemic, with those of lower income far more affected by financial and employment uncertainties. Interestingly, factors such as location and local COVID-19 rates were not associated with mood symptoms. This suggests that communities deemed at lower risk of spread are not immune from the overwhelming influence of the COVID-19 pandemic on everyday life.

We must further explore the relationship between PD and COVID-19. Given the uncertainty of how long the hardship of COVID-19 and social distancing requirements may persist, we must identify ways to help the PD community throughout this period. Gathering accurate data on COVID-19 risk among people with PD and improving telemedicine by providing a wider range of services and making it more accessible is essential.

Learn More

• Parkinson.org/COVID19
• COVID-19 FAQs
• PD Hospitalization and Coronavirus Preparedness Fact Sheet
• Centers for Disease Control: Coronavirus 

Learn more about Parkinson’s and COVID-19 at Parkinson.org/COVID19 or by calling our Helpline at 1-800-4PD-INFO.

On March 20, the Parkinson’s Foundation in collaboration with the U.S. Department of Veterans Affairs Ralph H. Johnson VA Medical Center, hosted a live online event, “Veterans and Parkinson’s: What You Need to Know.” More than 1,100 veterans and family members from all 50 states and several countries registered to learn more about managing PD. Four panels of experts from the VA and the Parkinson’s Foundation addressed key issues in treatment, care, mental health and available resources and benefits.

These experts discussed how Parkinson’s is treated in the veteran community and highlighted some of the unique factors that make veterans more at risk of not only developing Parkinson’s, but also of receiving later diagnoses and dealing with more complicated mental health challenges.

“A number of conditions that veterans are more likely to experience such as traumatic events, significant head injury, combat deployment and Agent Orange exposure placed them at greater risk of developing Parkinson’s,” said Dr. Travis Turner from the Medical University of South Carolina – a Parkinson’s Foundation Center of Excellence.

“Having spent a number of years working as a neuropsychologist in the VA health care system, I have observed some unique characteristics in the way that PD presents in veterans," said Dr. Turner. "For example, veterans are often less likely to seek medical help for subtle changes in their health. This means that when we see them the disease is often a bit more progressed before it is formally diagnosed and treated. Unfortunately, this means that there will be an extended period of diminished quality of life before we can get them the help that they need. However, with improving quality of care through the VA, access to specialized medical treatment and building patient trust, this is becoming less of an issue.”

Throughout the program, participants heard from experts and had an opportunity to ask questions about PD progression, treatment, as well as accessing specialized care. In addition to hearing from experts, we also heard from three veterans who are currently living with PD. Here’s what they had to say:

How did you manage your Parkinson's diagnosis as a husband and a father on active duty?

Eric Arrington, Army

“I just found out as much as I could about Parkinson’s and dug deep. I started preparing myself for the medical board and, believe it or not, I passed the medical board for the second time in my military career. A year later, I dropped my paperwork. I made sure my wife had everything that she needed and that she understood more about PD. Toward the end of his high school career, I made sure my son had opportunities to participate in different things he wanted to do and made sure my disease didn’t have a negative impact on my family.”

Why was it so important to you to move quickly and to make sure that you see a Parkinson’s specialist?

Jay Phillips, Army

“My first diagnosis came from a regular neurologist, not a movement disorder specialist, who immediately started me on carbidopa/levodopa. As a treatment, that's what we call the gold standard drug. But I learned about three months after that, when I got a second opinion, that it perhaps wasn't the best thing to have started me off on right away because my tremors were minimal and because of the possibility of long-term side effects. So, I decided to join a support group early on where I was exposed to a lot of other patients and I could see how complicated PD is and how everyone is taking different medications for different symptoms. At that point, I decided to seek out expert care.”

As a field hospital nurse in Vietnam, you had many exposures to Agent Orange. When your hand started shaking decades later, did you think it was related to your military service?

Lou Eisenbrandt, Army

“Absolutely not. As a matter of fact, with my nursing background, I suppose I should have been aware that something was going on. But when you go to nursing school, you really don't talk about Parkinson’s very much. Years later when I was looking for information online a lightbulb went off as I read about military exposure to Agent Orange and Parkinson’s. Most of my time in the field was spent in an emergency room where we got guys straight from field. The first thing we did was cut off their fatigues to assess the injuries. Lots of them were in the path of spraying for Agent Orange.”

What went through your mind thinking about life beyond diagnosis? Did you experience depression or anxiety?

Lou Eisenbrandt, Army

“Yes, I remember spending two days on the couch curled up in a fetal position. It caught me by surprise when I finally worked my way out of the depression because I had never experienced it before. Once I started reading more about Parkinson’s, I realized that many of us are not depressed because of our diagnosis but because we don’t have enough dopamine. I usually say I’m running at half-quart low. I learned that you shouldn’t be ashamed of taking antidepressants. I’ve really been on them since day one, and I’ve been living with this for 19 years.”

There is a category of veterans who suffer from post-traumatic stress disorder (about 20 to 30% that we know of). Do you think the Parkinson’s and PTSD influenced one another?

Eric Arrington, Army

“For a while, I thought I was going crazy. I didn’t put it together until I finally got the courage to see a psychologist. You’ve got to get the help that you need, take the medication and see the doctors. Taking the medication is not going to make you less of a warrior. It will enhance your abilities and make you stronger. It also takes the burden off the care partners when they are not the only ones watching out for you.”

What are some final words of advice for other veterans living with Parkinson’s disease?

“Find expert care, get the right medications and remember to take them on time. EXERCISE – it’s so important. Get involved with a supportive community of people. Take care of your care partner, especially as the disease progresses and things become more burdensome for them. The VA has some fantastic programs.” - Jay Phillips, Army

“Make sure you do your own research. What helped me was the Parkinson’s Foundation and the VA websites. Make sure you request books from the Parkinson’s Foundation and use their hospital safety resources so you know what you need to ask and have all your medication information handy. - Eric Arrington, Army

“I want to reinforce the caregiver aspect for caregivers are just indispensable patients. Remember that we cannot hurry anymore so be kind when you’re getting ready to go somewhere. And finally, what I tell everybody at least once when I talk to them, each Parkinson’s patient is just like each soldier. No two are alike. Get help if you need it and do not compare your symptoms to anyone else.” - Lou Eisenbrandt, Army

In 2020, the U.S. Department of Veterans Affairs (VA) and the Parkinson’s Foundation announced a partnership to improve the health, well-being and quality of life of veterans living with PD. This partnership will help expand awareness of VA and Parkinson’s Foundation resources provided to veterans with PD. 

Watch the video recording of this program “Veterans and Parkinson’s: What You Need to Know.” To learn more about veterans and Parkinson’s disease, visit Parkinson.org/Veterans.

The Parkinson’s Foundation, in partnership with the VA, will continue offering educational events focused on the needs of veterans with PD. For more information about upcoming events, please visit Parkinson.org/Events or call 1-800-4PD-INFO (1-800-473-4636) for information about veterans’-specific programming.

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.