Neuro Talk: Top Findings from the Parkinson’s Outcomes Project
What challenges are people with Parkinson’s disease (PD) facing and how can research help improve their lives? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, outlines top findings from the largest-ever clinical study of Parkinson’s disease, the Parkinson’s Outcomes Project. This study captures the experiences of people with Parkinson’s and their care partners over time, to identify new and better ways to provide care and manage Parkinson’s disease.
Being a care partner can be a fulfilling but stressful role. Care partners may experience feelings of frustration and self-deprecation. Ignoring these experiences can lead to burnout, and eventually, compassion fatigue. You do not have to carry these concerns on your own; the Parkinson’s Foundation has resources to support you as a care partner.
What is compassion fatigue?
Compassion fatigue can be defined as the feelings of frustration and exhaustion when a care partner experiences self-blame and loss of energy due to caregiving (Mattioli et al., 2018). The care partner role can mean stressful and emotional situations.
As time passes, compassion fatigue may become a part of your experiences without proper mental health care. In some cases, compassion fatigue can result in giving up on the role of being a care partner.
What is the difference between compassion fatigue and care partner burnout?
Compassion fatigue is different from burnout. Care partner burnout can involve short-term moments of exhaustion that require self-care to be rejuvenated. Compassion fatigue is a long-term process that can result in major emotional distress if not treated and prevented. Compassion fatigue occurs if the care partner’s burnout is not addressed and treated.
What are signs of compassion fatigue?
Compassion fatigue can be shown through a variety of symptoms. Possible symptoms include:
Irritability towards the person being cared for or other people in the care partner’s life. Frustration is built up within the care partner experience if there is no outlet to rest and process.
Tiredness due to the lack of self-care. Being a care partner means giving up much of your time and energy to caring for someone. Not getting enough rest and relaxation time, can easily lead to exhaustion.
Isolation from the person being cared for, friends and family. When a care partner is overwhelmed, they may feel the need to be alone and disconnected from those who love them.
Insecurity with role and ability as a care partner. As compassion fatigue develops in a care partner, it is common to have feelings of failure and self-doubt.
Every care partner’s experience will look different, but intense feelings of exhaustion and frustration are common signs of compassion fatigue.
Preventing Compassion Fatigue
Compassion fatigue is completely preventable. It is necessary for a care partner to practice self-care. Self-care includes a range of activities, but the important aspects of self-care are rest and healthy boundaries.
Care partners should practice activities that are restful. These activities should be continual and built into a self-care plan. A self-care plan is a set of strategies and timelines for self-care. There needs to be healthy boundaries in every relationship within the care partner’s life. It is also important for care partners to develop coping skills. Coping skills are created through intentional self-care. Taking the time to work through emotions and advocate for your mental health can prevent compassion fatigue and create strong, healthy relationships.
Self-Care for Care Partners
Self-care is an important practice for every person’s life. As a care partner, it is vital for you to set aside time for self-care activities. Self-care should be personalized, so find what works for you. Try to incorporate these different types of self-care into your plan:
Physical self-care: this could include sleep and exercise.
Emotional self-care: reflect on your emotions by talking to a mental health professional or journaling.
Intellectual self-care: find ways to stimulate your brain through reading or music.
Spiritual self-care: do things that feel spiritual to you, such as practicing gratitude or prayer.
Adventurous self-care: try new things outside of your normal routine.
Sensory self-care: indulge in your five senses by being mindful of your surroundings.
Resources for You
You are not alone in your role as a care partner to someone with Parkinson’s disease. The Parkinson’s Foundation has many resources available to you:
PD Conversations. Ask experts your Parkinson’s questions and be part of a network of support. Check out our Caregiver discission group.
In Your Area. Find resources local to your community.
PD Library. There are factsheets, videos and books on the most important Parkinson’s topics.
The Parkinson’s Foundation wants to remind you as a care partner, you are enough. If you are experiencing compassion fatigue or burnout, it is important to take time to rest and practice self-care. Check out one of our many care partner resources to support you in your caregiving journey.
For answers to your caregiving questions or support, call our Helpline at 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.
This article provides gift ideas for someone you know who is living with Parkinson’s disease. It includes:
20 Parkinson’s-friendly gifts
Gift ideas designed to make life a little easier
Gifts that a person with Parkinson’s can use in different disease stages
Unsure of what to gift your loved one with Parkinson’s disease (PD) for an upcoming holiday or birthday? Parkinson’s is a disease that progresses over time and brings with it a myriad of symptoms —and sometimes, a small gift can help make life a little easier.
The below products are not endorsed by the Parkinson’s Foundation.
1. For the one who wants to get moving
Research shows that regular exercise can help ease Parkinson’s symptoms. Help energize your loved one to work out. Light weights can bring the gym to their living room, while a portable bike pedal exerciser can help get circulation going, from any chair. A new pickleball paddle can inspire movement and community-building. For on-demand workouts, explore our Fitness Friday videos.
2. For the one who needs to simplify self-care
Maintaining dental health is important for people with Parkinson’s, as symptoms can complicate dental care. An electric toothbrush or toothpaste dispenser helps with daily dental tasks. Simplify other self-care tasks with an electric razor for men and women.
3. For the one who loves seeing their loved ones
Seeing your loved one in person can be the best gift of all! In between visits, help them go hands-free with a smart video calling device, like the Amazon Echo Show. These devices often have the added benefit of a voice-activated calendar and alarms. Help your loved one set up other smart features, like connecting it to lamps and appliances through smart plugs.
4. For the one who needs help trying new things
Forty percent of people with PD utilize complementary therapies to find relief from symptoms. Consider gifting an experience your loved one can try nearby, such as a Tai Chi or yoga class, acupuncture session or a massage.
5. For the one who loves good food
It is common for people with PD to experience weight changes: some lose weight while others gain. A failsafe gift for any foodie can be to schedule a delicious meal delivery from a local restaurant or buy their groceries for the week using a delivery service like Instacart or AmazonFresh.
Parkinson’s can sometimes interfere with activities of daily living — like getting dressed. Stylish slip-on shoes can simplify the challenge of wearing sturdy shoes with grip for people with PD. A long-handled shoe horn can also help.
9. For the one in need of quality sleep
Aromatherapy shower steamers and bath bombs can help promote relaxation before bed. Silk sheets and satin pajamas are not only comfortable but have the added bonus of making it easier to slide out of bed.
Make television watching and snacking more comfortable with an adjustable TV tray. For the one who has seen it all, gift a monthly subscription for a streaming service your loved one hasn't tried yet.
12. For the one who wants to show their support
Explore the Parkinson's Foundation online store for thoughtful gifts that give back. From cozy sweatshirts, T-shirts, water bottles, tote bags and stickers to more — we have something for everyone. Every purchase raises PD awareness and supports our mission to make life better for people with Parkinson's. It's a meaningful way to make an impact. Shop now.
13. For the one who loves reliving memories
A custom photo book has limitless possibilities and can be a great conversation piece. Pick a theme with sentimental value — previous family vacations, a dedicated page to each person in the family, favorite locations. Viewing photos from the past can help with memory.
14. For the one who loves the outdoors
If your loved one can’t wait for spring or summer activities, a new sunhat can help keep them protected from the sun. Trekking poles (or walking sticks) can also help them enjoy outdoor walks and hikes.
15. For the one who needs to treat themselves
Self-care is essential for people with Parkinson's and care partners. A light therapy lamp can help ease or prevent seasonal depression, while a spa setof lotions can help address skin changes, another PD symptom. Look for products that address oily, itchy, dry and inflamed skin ― all symptoms of PD.
16. For the one who likes to exercise the brain
Puzzle books can help mix up the day and promote mental stimulation. While reading books can help people with PD retain mental clarity.
17. For the one who loves to tell stories
Help your loved one tell their story. Every week, Storyworth books sends you (or your loved one) a prompt. At the end of the year, the answers are bound into a book. For a shared experience, schedule a weekly call with your loved one and answer the prompt together.
Audiobooks can make reading hands-free and an enjoyable activity for walks or long drives. Gift an Audible membership for one to 12 months. Alternatively, ebook readers, such as a Kindle, can also make reading a little easier for people with Parkinson’s. Help set the Kindle up with large text and other personalized settings.
20. For the one who has it all
Never underestimate the gift of your company. Invite your loved one to a movie, park or just help them around the home. Looking for something you can do together? Check out local experiences, such as museums or a PD exercise class. Find your nearest Parkinson’s Foundation chapter for classes near you.
Still not sure what to get your loved one? Consider making a Tribute Gift to the Parkinson’s Foundation in their name. As part of your donation, you can send an eCard or print a card.
How Stress and Stress Management Impact Parkinson’s
In today’s fast-paced society, with more people spending large amounts of time connected to technology, stress has become the norm. Whether it is short-term, acute stress that comes from situations — such as moving to a new apartment — or long-term, chronic stress caused by long lasting problems — such as ongoing financial or health worries — stress can negatively impact mental and physical health. People with Parkinson’s disease (PD) commonly report that acute stress worsens their motor symptoms, such as freezing of gait, dyskinesiaand tremor. People with PD also notice that chronic stress seems to worsen non-motor symptoms, particularly anxiety and depression.
Of note, there are also PD mice studies suggesting that chronic stress can accelerate PD disease progression. A better understanding of how stress impacts PD — and an exploration into possible coping mechanisms — are key to improving PD management.
A recently published study in the journal, Parkinson’s Disease, “Stress and mindfulness in Parkinson's disease - a survey in 5,000 patients” (van der Heide, Speckens, et al., 2021) sought to investigate four questions:
Do people with PD experience more stress than a control group?
Which personality and disease characteristics are associated with stress?
Which PD symptoms are especially sensitive to stress?
What strategies might successfully help reduce stress for people with PD — with particular attention to mindfulness (defined in the study as moment-to-moment, non-judgmental awareness).
Study participants included 5,000 people with PD (average age of 67.3 years, average time living with PD 5.9 years, and 48% women) and 1,292 people without Parkinson’s (average age 60.8 years, 78.0% women). Of those that responded to the survey, 93.9% were Caucasian, 0.5% African American, 1.0% Alaska native, 1.5% Asian, and for 3.0% race was unknown. The majority (82.6%) lived in the U.S. A multitude of well-respected, validated scales were used to measure perceived stress, anxiety, awareness of one’s thoughts and feeling in the moment (dispositional mindfulness), excessive and intrusive negative thoughts (rumination), and self-compassion. Additionally, the study allowed for open-ended feedback from participants, allowing them to list other symptoms affected by stress.
Results
Understanding the effects of stress:
People with PD scored significantly worse than those without PD in nearly every category, including anxiety, perceived stress and depressed mood.
Stress worsened all PD symptoms measured in the survey, including sleeping problems, depression, dyskinesia (involuntary movements), freezing of gait (feeling stuck in place), and bradykinesia (slowness of movement).
The PD symptom with the strongest stress effect was tremor — experienced by 81.8% of patients.
Participants with PD with higher stress levels ruminated more, scored lower on quality of life, lower in dispositional mindfulness and lower in self-compassion.
People with PD under higher levels of stress reported worse disease severity on a daily basis.
Self-compassion did not differ between people with and without PD.
People with PD also added to the list of stress symptoms cognitive impairment, loss of focus, confusion, impaired executive function, speech and communication issues, emotional symptoms (anger and frustration, anxiety, nervousness, and apathy, and pain).
Studying stress management methods:
Exercise (walking, cycling, swimming, sports, yoga, Pilates, or Tai Chi) was most frequently used to reduce stress (83.1%) – with beneficial effects reported on all motor and non-symptoms.
Mindfulness, practiced by 38.7% of study participants with PD, was linked to improvements in both motor and non-motor symptoms — most notably 60.2% noticed improvement in depression and 64.7% in anxiety.
Of the 38.7% of people with PD practicing mindfulness, 85.7% recommended it to others with Parkinson’s.
The more often mindfulness was practiced by people with PD, the greater the perceived improvement in their Parkinson’s symptoms; approximately half (53.2%) practiced mindfulness at least once a week, and 21.5% practiced once a month or less.
Mindfulness was experienced as helpful, regardless of PD medication use, and regardless of how long a person had been diagnosed with PD.
Among the non-mindfulness users, 43.4% were interested in gaining mindfulness skills.
Mindfulness users in both groups scored higher on dispositional mindfulness and perceived stress.
These study findings clearly suggest that people with PD experience greater levels of stress than the general population. It is of particular concern that extra sensitivity to stress translated into a significant worsening of both motor and non-motor symptoms.
Mindfulness (the intentional, active awareness of the present moment, observed without judgment) may improve PD symptom severity. This study demonstrated a significantly positive effect of mindfulness on anxiety and depressed mood. Physical exercise also had a positive effect. Whether or not exercise improved symptom severity in PD directly, by reducing stress, is unclear.
Previous studies have found mindfulness to be a helpful complementary therapy. According to the National Institute of Mental Health, over time, the continued strain on the body fromchronic stress may contribute to serious health problems, such as heart disease, high blood pressure, diabetes, and other illnesses, including mental disorders such as depression and anxiety. Chronic stress can also disturb the immune, digestive, cardiovascular, sleep, and reproductive systems, as well as trigger headaches, sleeplessness, sadness, anger, and irritability.
As stated by the study authors, stress has been shown to have a “considerable and detrimental influence on quality of life and on symptom severity” in the PD population. This study also suggests that there are self-management strategies that the PD population can incorporate that are potentially beneficial - particularly mindfulness. However, additional studies are needed with greater diversity of study participants to better understand how mindfulness and physical exercise might be optimized to maximize benefits to motor and non-motor functions.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about stress and mindfulness in the population by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.
van der Heide, A., Meinders, M. J., Speckens, A. E. M., Peerbolte, T. F., Bloem, B. R., & Helmich, R. C. (2021). Stress and Mindfulness in Parkinson's Disease: Clinical Effects and Potential Underlying Mechanisms. Mov Disord, 36(1), 64-70. doi:10.1002/mds.28345
van der Heide, A., Speckens, A. E. M., Meinders, M. J., Rosenthal, L. S., Bloem, B. R., & Helmich, R. C. (2021). Stress and mindfulness in Parkinson's disease - a survey in 5000 patients. NPJ Parkinsons Dis, 7(1), 7. doi:10.1038/s41531-020-00152-9
A Beginner's Guide to Managing Pain Through Mindfulness
For most people, pain can be part of daily life. Pain expresses itself and manifests physically, emotionally, spiritually and mentally. Those who live with pain, look for ways to manage it throughout the day — consciously or subconsciously. For people with Parkinson’s, pain is a common non-motor symptom.
Emotional pain can be brought on by stressful situations, from the holidays to a Parkinson’s diagnosis. While physical pain can be brought on by Parkinson’s symptoms or the physical demands of caregiving.
There are many ways to manage physical pain, including:
There are different types of pain, and other ways to manage it. The mind plays a significant role in pain management. When you start to think about how the mind responds to pain, you can start to redirect your thoughts and how to address that sensation, adopting a new technique for managing pain.
Below are six steps to managing pain through mindfulness:
1. Acknowledge your pain.
Which type of pain are you experiencing? Pain can take shape in multiple ways:
Physical pain: felt in the body — tingling, burning, throbbing, aching
Emotional pain: feelings of grief, loneliness, panic or worthlessness
Mental pain: feelings of anxiety or depression
Spiritual pain: feeling disconnected from yourself and others
2. Work on redirecting your response to pain.
Notice where you are experiencing pain. Say, “Hello. I feel you. I hear you. And I accept you.” Repeat this mantra as many times as you need to acknowledge your pain and to begin cultivating a relationship with the sensation or thoughts you are feeling.
A mantra is a sound, or vibration to help reduce stress, anxiety or pain. Mantras can help adapt the brain to how it responds to pain.
3. Recognize your strength.
Your strength comes in many forms — physical, mental, spiritual and emotional — the same ways pain manifests. When living with chronic pain, some people may feel they are not as strong as they should be. Chronic pain can also cause fatigue. Our body and minds also work hard to avoid pain, to push it away. This can lead to exhaustion and forgetting about the strength you do have.
Any amount of strength is reason to celebrate. Find your reason to celebrate — what strength and motivation did you find today? Did your strength look like taking a walk, folding the laundry, cooking, calling a friend to catch up or spending time resting? How did your strength show up today? And tell yourself, “I am strong. I am resilient. I trust my body.”
4. Reduce your stress.
Triggers are events or everyday things that can set you off. They increase blood pressure, anxiety and pain. For example, being stuck in traffic or unable to button a shirt. How you respond to stressors can cause the same stress response in your body. Stress can also make Parkinson’s symptoms worse.
Does stressing about the traffic help the situation? Does feeling frustrated make you feel better? Does looking for your phone with anger improve your search skills? Probably not. In fact, stress slows us down.
Try to categorize your stressors. Ask yourself, “is this situation a mountain or a mole hill?” Next, breathe. Once you can bring yourself to see the significance of a stressor, you can start to feel relief. Pain is also associated with feelings of uncertainty and insecurity, which can manifest itself to become anxiety.
5. Make yourself feel safe when experiencing pain.
Understand that it is common to worry when experiencing pain, but recognize that fear or uncertainty, and work towards making your body and mind feel safe. How can you reduce your anxiety?
Mindful meditation can help — using our breath to calm the nervous system, along with using words and phrases, like mantras.
Calming smells, like essential oils of lavender or jasmine.
Be gentle with yourself. Refrain from judgement and return to objective awareness.
Show yourself some extra love. Be kind to yourself. When your body is hurting, do something kind for it— take a bath, drink herbal tea, breathe into your body and say: “I am safe, I am loved.”
During flare ups, or bad days, it’s even more difficult to remind yourself how far you have come.
6. Stop and think about the positive things.
Our brains find it much easier to hold onto negative memories and emotions than the positive ones. Help your mind, help your brain, remember the positive memories and emotions. Close your eyes and silently say: “Look how far I’ve come” and then add something positive you have accomplished.
It’s a complicated conversation when you start to talk to your pain. Create a deeper connection with your body and how your mind reacts to your body. What kind of conversation do you have with yourself? Can you redirect the language you use to a more supportive, positive and optimistic tone?
Try utilizing a mantra in your daily like. Use a mantra below to help guide your supportive relationship with yourself, your body and your pain — or think of a new one that inspires you.
I feel you. I hear you. And I accept you.
I am strong. I am resilient. I trust my body.
Is this a mountain or a molehill?
I am safe, I am loved.
Look how far I’ve come.
This article is based on a PD Health@Home Mindfulness Monday event, Mantra for Pain Relief with Parkinson’s Disease. Watch the video now.
For more guided mindfulness and relaxation events and videos, visit Parkinson.org/PDHealth.
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.
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.
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.
Start 2026 Strong: Simple Resolutions for Better Health
As we enter 2026, we're here to help you start the year strong! Setting New Year's Resolutions is the perfect way to kickstart intentional goals and positive habits. These resolutions can change your behavior throughout the rest of the year.
New Year’s resolutions can often mean having goals that last for a short time. It is important to create resolutions that are personal to you and reflect what you want this year to look like. Resolutions are not supposed to be impossible or cause guilt; they should be goals that bring excitement and hope. We have fun tips and suggestions on what kinds of resolutions you can make!
Exercise
It is important to find an exercise plan you enjoy and that fits well into your schedule. Exercise helps people with Parkinson’s disease (PD) manage movement and non-movement symptoms. There are many options for what kinds of exercises you can try.
Participating in a fun workout can help you enjoy your time and strengthen your body. Trying a new sport like pickleball can make staying active feel social and motivating. Setting an achievable goal, such as joining a pickleball league, can help turn exercise into a habit you look forward to instead of a chore. A new pickleball paddle can also inspire community-building.
Resources for You!
Try new exercises from the comfort of home with Fitness Fridays
Use our In Your Area search to find exercise classes near you
Nutrition is an important part of your physical and mental health. Good nutrition can help manage Parkinson’s and promote overall well-being. It is also fun to try out new recipes and change up what you eat.
Practicing self-care can be a challenge to incorporate in your daily life but creating a self-care plan is a great way to start. A self-care plan looks like a personalized schedule to enjoy what brings you rest. Self-care can promote mindfulness and resiliency throughout the year.
There are many ways to get plugged into your community. It can be helpful to have people around you for support through the year. In times of stress, a community can remind you that you are not alone. The Parkinson’s Foundation has many resources for you to connect with a strong support system.
There are also many opportunities to serve your community. Find your local Parkinson’s Foundation chapter and the events coming up. Volunteering and fundraising can create a positive impact on your community while helping you feel connected to those around you.
Resources for You!
Get connected to your local chapter to find support groups and events
Sometimes resolutions can feel overwhelming and impossible. It can be easy to feel guilt and frustration when things do not go as planned. Follow these tips to make your New Year’s resolutions fun:
Find goals that excite you.
Create goals that are achievable. It is good to challenge yourself, but resolutions should not be impossible.
Talk to a loved one about your resolutions so that you have someone to support you.
Remember it is never too late to create or adjust goals.
Throughout 2026, use your resolutions to try new things and develop personal growth. The Parkinson’s Foundation is happy to support your goals with our many resources.
The Parkinson's Foundation is here for you. Our Helpline can not only answer your Parkinson’s questions but can help you find local exercise classes and support groups. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636).
Just as physical health is affected by lifestyle and exercise, so is your mental health. Cognition, mood and sleep all play integral roles when it comes to maintaining proper mental health.
Most people living with Parkinson’s disease (PD) experience changes and symptoms that impact cognition, mood and sleep as time goes on. Some people even experience cognition, mood and sleep symptoms as early PD signs. Below we highlight tips for how to support your mental health with changes in your cognition, mood and sleep.
Cognition Tips
Cognition is the act of mental processing. While tremors are a recognizable PD symptom, Parkinson’s may also impact cognition. Cognitive changes can include shifts in your thinking and behavior, along with slowness in memory. This non-movement symptom can impact quality of life. It can be scary to experience cognitive changes, but there are ways to support your mental health:
Create coping strategies like developing a routine and staying engaged with fun hobbies.
Find a counselor to help you adjust to these changes. You can see a counselor individually or with your care partner.
Everyone experiences mood changes; however, Parkinson’s can influence mood as a non-motor symptom. Mood changes may negatively affect your social life and emotional well-being. They may include depression, anxiety and other mood-related changes. Your mood may be affected by major life changes or medication. It is important to evaluate your mood and mental health. We have tips to help support you through these mood changes:
Create an exercise plan to support your emotional and physical health.
Connect with those around you to provide social support. Attend a support group and build your community — try attending a local PD event by using our In Your Area search tool.
Talk to a mental health professional who can help you process mood changes.
Focus on your nutrition. Eating healthy is important for helping manage Parkinson’s symptoms and optimizing PD medications.
Talk to a doctor about a treatment plan, especially if your mood changes are associated with pain.
Sleep is a vital part of mental health; our bodies and minds need rest. Parkinson’s can often affect your ability to sleep and daytime alertness. Sleeping problems may be the result of sleeping disorders like insomnia and sleep apnea. Your mental health may be affected by unhealthy sleeping patterns. Here are five tips that can help with sleep and Parkinson’s:
Set a schedule around sleep: avoid naps and try to set a consistent sleep pattern.
Practice exercise to get your body moving and ready for rest.
Avoid using electronic devices right before sleep.
Set aside time to relax intentionally as you get ready for bed. Avoid doing things that cause stress.
Discuss sleep issues with your doctor and healthcare team.
Although changes in your cognition, mood and sleep may feel overwhelming, you are not alone. It is very important to care for your mental health. The Parkinson’s Foundation has many resources to support you through these changes.
7 Helpful Tips for Finding Your Ideal Mental Health Counselor
You have decided to look for a mental health counselor. Where do you begin? What type of counseling is right for you? Are there counselors who understand Parkinson’s disease (PD)? The following six tips may help you feel more informed as you start your search and begin counseling.
1. Some counselors will be a better fit for you than others.
Counseling and psychotherapy (talk therapy) can be offered by a variety of mental health professionals. They can include counselors, psychologists, clinical social workers, chaplains, marriage and family therapists — it can be overwhelming to make sense of all these different titles. While there are differences in their training and approach, all of them can be suitable choices.
Think about what is most important to you when considering your options. Here are some questions that can help you narrow down your search:
Do they accept your insurance or are their services affordable for you?
Are their hours and location convenient?
Can you meet with them in-person or virtually?
Do they specialize in helping clients in your age group and with similar concerns?
Do you get the impression they will be affirming and competent to support you?
If you have access to many counselor choices, perhaps you could meet with a few different ones until you find a good fit. If your options are limited, the counselor you partner with should at least be someone who helps you feel safe and respected, heard and validated, empowered and acknowledged as the expert you are in your own life.
2. Finding a counselor well-versed in Parkinson’s can be challenging.
It is natural to want your counselor to be familiar with Parkinson’s, especially if the reason you’re seeking support is related to PD. Consider turning to the PD community for recommendations. Ask other people with PD, your healthcare team, support group facilitator, or exercise class instructor if they know of counselors who are familiar with PD.
Keep in mind that many counselors are offering services virtually these days, which can expand the options available to you if a counselor is located too far from home.
3. Partnering with a counselor who isn’t familiar with Parkinson’s can still be worthwhile.
If you cannot find a counselor who is knowledgeable about PD, consider looking for a counselor that has supported clients with challenges common to PD, such as: adjusting to life with a chronic illness, navigating life transitions, and coping with depression, apathy, anxiety and grief.
Counselors strive to understand important elements of their clients’ lives, so it is likely any counselor you see would be open to learning more about PD. Ask yourself, “What do I want to be sure my counselor understands about Parkinson’s?” If you want to guide them to information about PD, this list of resources may be a good place to start.
4. Remember your experience is unique, no matter how much the counselor knows about Parkinson’s.
Explain that since Parkinson’s affects everyone differently, you would like to describe what PD looks like for you. Consider sharing with the counselor how life has changed since your diagnosis, what your range of motor and non-motor symptoms are and how you manage them. Describe how PD has impacted your identity, relationships, outlook and day-to-day life.
Try making a list of why you are seeking counseling and what you hope to gain from the sessions, so they understand your needs and priorities. If making a list feels too overwhelming, try not to be discouraged — the counselor can help you sort out your concerns and goals.
5. You are not limited to talk therapy when you engage in counseling.
Some counselors are specially trained to offer mental health therapy using movement, music or art. Partnering with a dance/movement therapist, music therapist or art therapist offers you a creative way to engage in counseling — and you don’t need to be a good dancer, singer, or artist to do it!
Often these therapists sub-specialize to work with specific age groups and in certain settings, or with clients who have a specific type of need or concern. The links above will connect you to provider directories.
6. Search for your ideal therapist who offers in-person and/or virtual sessions.
Counselors often offer in-person and virtual sessions. Many insurance plans cover therapy, so long as your counselor is in-state. Visit Psychology Today to find a therapist in your city or state and use the website's filter to find someone who provides in-person and/or virtual sessions.
7. There are many places to look for a counselor.
Options to help you find counselor recommendations may include:
Your PD community and health care team
Your insurance provider for a list of in-network mental health professionals
The role of a care partner can be very meaningful, but the stress and change of caring for someone can be emotionally draining as well. Care partner burnout occurs when the care partner feels overwhelmed and begins to remove themselves from their role, leading to the care partner no longer caring for themself or their mental wellness.
A care partner who is experiencing burnout may isolate and lack the energy to care for their loved one. Knowing how to recognize burnout can help you prevent and treat it.
Care Partner Strain vs. Care Partner Burnout
Care partner strain: when a care partner begins to lack empathy for the person they care for. Precedes care partner burnout.
Care partner burnout: when a care partner feels overwhelmed and begins to remove themselves from their role, leading to the care partner no longer caring for themself or their mental wellness.
Before burnout comes care partner strain — when a care partner begins to lack empathy for the person they are caring for. Through emotional exhaustion and frustration, a care partner begins to lose compassion for their loved one. Strain can lead to care partner burnout.
Oftentimes the higher the care partner strain, the lower the quality of care. The care partner and the person being cared for both suffer when the care partner is experiencing care partner strain. A social worker or physician may be the best person to identify care partner strain and give you strategies to help you recover.
If care partner strain starts to progress to burnout, take a minute to identify what you are experiencing. Begin to incorporate a self-care plan if you have not already done so. It is important to consider how you will practice and make time for self-care while also taking care of your loved one.
Recognizing Care Partner Burnout
There are multiple ways to measure and identify care partner burnout. It is important to first recognize you are experiencing care partner burnout because you can then move on to treating it. Signs of care partner burnout include:
Fatigue
Anger
Withdrawal
Aches and pains
Cognitive changes
Prioritizing Your Needs
You cannot pour from an empty cup. It is normal to feel stress and guilt when trying to prioritize your needs as a care partner. You must give yourself time and rest to fill up. Here are suggestions to help you find the energy to care for yourself:
Work with a social worker who can recommend resources
Look into respite care
Explore in-home care support options
Respite care can be a viable option. It can range from a few hours to longer and can be achieved in a variety of ways. Respite care looks different for everyone depending on financial situations and individual needs. Facilities often offer respite care packages that give you a place for your loved one to stay if you need time for yourself. This is typically private pay and will not be an option for everyone. If finances are tight, consider asking loved ones to chip in towards your “respite fund” for any holiday you celebrate where gifts are exchanged.
You can also explore in-home care support, which is usually for shorter periods of time. This can be a secondary care partner. A secondary care partner can either be a professional, through an agency or a family member or friend you ask to help.
Asking for Help
Be honest about your needs, it is okay and healthy to ask for help. Remember that just because you need help does not mean you are failing as a care partner. You do not have to do it all by yourself; caregiving is a team sport. The best way to prevent care partner burnout is to have a community of support.
Explore Parkinson’s Foundation resources that can help:
The Helpline 1-800-4PD-INFO (1-800-473-4636) can answer your care questions and help you find additional resources and support groups.
PD Conversations is a great place to discuss and share with other care partners in the PD community.
Take A Minute
Are you experiencing care partner strain or burnout? If so, say some of your stresses out loud. Next, take a few minutes to think about what simple self-care activity you can implement today, like going for a brisk walk or spending two minutes focused on your breathing.
When you take on the care partner role, you may put the person you are caring for as the top priority. When all your energy is going to someone else, you may stop caring for yourself. Try shifting your perspective. Caring for someone with Parkinson’s is a role, and it is not the only role you have in life. Tend to your self-care, find what feels safe, and build a community.
Recovering from Burnout
You can always come back from care partner burnout but try to make adjustments to prevent burnout in the future. These changes may include more time to practice self-care, better communication between you and your loved one, and seeking professional help.
Be intentional about your personal healing. To prevent burnout in the future, find a support community that works for you.
