All November we’ll be raising awareness about caregiver burnout. Learn more about how to combat caregiver burnout. Read more.
Navigating Parkinson’s disease (PD) is a life-long process for care partners, but you don’t have to do it alone. We’re here for you with these top 10 caregiver resources:
1. Helpline
Our Helpline specialists answer all Parkinson’s and care partner questions and refer health care professionals. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.
2. Care Partner Guide
This comprehensive guidebook was written for care partners at every stage of PD. In addition to practical tips, you'll find encouraging insights from other care partners, as well as activities, worksheets and resources.
3. Podcast
As a caregiver, it is important to stay up-to-date on Parkinson’s. Listen to our podcast, Substantial Matters: Life and Science of Parkinson’s, as we cover PD treatments, research and techniques to help you and your loved one live better every day. Subscribe or listen online.
Our YouTube playlist features tips, interviews with care partners, advice for those caring for a loved one with advanced Parkinson's and more.
6. Care Partner Courses
This set of one-of-a-kind self-paced online courses offers videos, journal prompts and opportunities to connect with care partners about the topics that are most important to you. Enroll now in our Care Partner Program: Building a Care Partnership.
7. Expert Briefings
Find out what leading PD doctors and other experts have to say through our Expert Briefings webinar series.
Whether you care for someone who only requires help with basic tasks or for someone who requires daily physical care, utilizing the proper tools can help care partners provide the best support for their loved one with Parkinson’s disease (PD).
Think of caregiving as a home: when you move into a new house, you furnish it, make it a place you feel comfortable in and invite your friends and family over to celebrate. Moving into this new role as a care partner requires a similar level of rearranging. It will take time to get used to the new normal, but you will feel that comfort again. The first step is to learn what coping skills work for you.
Research shows that care partners face risks to their own emotional and physical health, which is why it is vital to prioritize coping tools to address the stress associated with caregiving. Examples of declined physical health in care partners include higher incidences of heart disease, high blood pressure, decreased immunity to sickness, anxiety and sleep deprivation.
By exploring ways that help you identify and relieve stressful tasks, you have the capability to create a better space for you and your loved one with Parkinson’s. As with building a safe, happy, and healthy home, it can help to establish the below coping tools early on:
“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 DeWitt, care partner, Team Spark Support Group Leader, Grand Rapids, MI
“Keep active and be happy with what you are able to do rather than looking at what you can’t do.”
– Myra Hirschhorn, former care partner, Cherry Hill Parkinson’s Support Group Leader, Willingboro, NJ
“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. I would also remind each new care partner that 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 Harris, Houston Area Parkinson Society Caregiver Support Group Leader, Houston, TX
Identify stress triggers. A first step in coping with stress is identifying and acknowledging the causes. Identify the moments that cause tension as a care partner and determine how you can make that task or time of day easier.
Connect with other caregivers. No one will understand your experience as well as other care partners. Join a support group for care partners to learn other methods of caring and how to better cope with the role of caregiving. TIP: Register for our 2020 Care Partner Summit to hear experts discuss caregiving, coping mechanisms and connect with other caregivers.
Acknowledge your right to feel what you feel. It is okay if you feel grief, anger, anxiety, guilt or depression. Seek out someone you can talk to, whether a professional or a friend.
Seek out activities that bring you pleasure. Do the things you love. Read a book, see a movie or make time to enjoy your coffee each morning. No matter how big or small, it’s important to find joy in your daily life.
Build in regular breaks. Treat scheduled breaks as appointments. You cannot be a good caregiver to someone else if you do not take care of yourself.
Delegate. No one expects you to do it all. Determine what your limits are and ask others to help where you need it. Most people are more than willing to help, especially when given specific tasks.
Seek out joy in your relationship with the person with Parkinson’s. Your hands-on duties, such as bathing and dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.
Develop a habit of participating in activities together outside of care tasks. Shared time as husband-wife, mother-daughter, siblings or other relationship — rather than as caregiver and care recipient — allows you to enjoy each other and build happy memories.
Podcast Playlist: 7 Podcast Episodes to Get You Through Winter
With cold temperatures and short days, winter may also coincide with feelings of isolation or loneliness. Know that you are not alone. The winter blues are common and can be triggered by the smallest occurrences. Whether you’re feeling down or simply need an escape, tune into our Substantial Matters: Life and Science of Parkinson’s podcast episodes and tackle the seasonal lows with some of our most popular podcast episodes featuring Parkinson’s disease (PD) experts.
Mental health issues are often a part of a chronic disease such as Parkinson’s, but no one comes into a disease as a blank slate. Therefore, distress in the setting of a disease should not only be ascribed to having the disease but should also take the whole person into account.
In addition to tremor or stiffness, people with PD are often troubled by common non-motor symptoms such as fatigue, pain, disturbed mood or cognition. Visits to PD specialized therapists, exercise, dance and other movement regimes can help alleviate these problems.
While the traditional medicine from a Western perspective typically include drugs, rehabilitation therapies or surgical operations, many Eastern cultures take a holistic approach to treatment through the use of herbs, acupuncture, dietary therapy and other techniques aimed at restoring a healthy balance.
A comprehensive, team approach can help people with PD improve quality of life issues that may not come up during routine doctor visits due to the associated stigma or potential feelings of embarrassment. These issues can include sexual/intimacy matters, blood pressure drops or urinary symptoms and often have easy solutions when addressed.
Receiving a Parkinson’s disease diagnosis, especially at an early age, can be seen as disrupting an entire life plan. But it doesn’t have to. This episode offers advice about how to talk to children about the disease, where to turn for resources, and how having a relative with a chronic disease can have positive aspects for a child.
Regular exercise is essential for people with Parkinson’s and has been shown to improve many PD symptoms including balance, mobility, issues with depression and constipation. Additionally, research shows that exercise may have a protective effect on the brain, slowing the degeneration of brain cells.
Addressing cognitive, behavioral, emotional and other neuropsychiatric issues may be challenging for physicians and for those they treat. This episode highlights an integrated cognitive behavioral movement disorder program addressing these challenges.
PD Health @ Home features new weekly Parkinson’s disease (PD) wellness and education virtual events designed for the PD community. We have new, exciting upcoming events scheduled that help promote mindfulness, highlight COVID-19 issues, exercise classes and more. Remember to join us and catch up on previous virtual events now.
These are the top 10 most popular PD Health @ Home episodes YOU found to be the most helpful:
1. Emotional Stress, Mindfulness Meditation and Mindful Movement
In this Mindfulness Monday, we introduce you to mindfulness and discuss the role emotional stress plays on the brain. Event recorded April 6.
3. Expert Briefing: PD and Medication: What’s New?
In this Expert Briefings Tuesday event, Fernando Pagan, MD, highlights the latest PD medications and what is next in Parkinson’s treatments. Event recorded April 14.
In this Expert Briefing Tuesday, we highlighted the changes that can occur in thinking and memory for people with Parkinson’s and their care partners and the steps you can take to reduce the effects these symptoms might have. Event recorded April 7.
5. Ask the Expert: How Can I Benefit from Telemedicine?
In this Wellness Wednesday, Roy Alcalay, MD, explains what to expect from a telehealth appointment, the benefits of telemedicine and provides helpful tips for your next appointment.
In this Wellness Wednesday, Dr. Okun reviews hospital safety for people with Parkinson’s who may be experiencing COVID-19 symptoms and answers questions from our Facebook community. Event recorded April 8.
8. Overcome Exercise Apathy with Live Fitness Demos
In this Take Time Thursday, we help you break some exercise apathy habits while at home and show you some exercises that get you out of your chair. Event recorded April 23.
In this Fitness Friday, Physical Therapist Joellyn Fox leads you through our PD-tailored at-home fitness class. This session will help you improve your posture through seated stretching and core exercises. Event released April 10.
In this Fitness Friday, Joellyn Fox will guide you through exercises that can help improve arm strength, highlighting correct form, chair and standing exercises. Event released April 24.
Summer is here! Even though coronavirus and social distancing may still play a part in our day-to-day lives, we want to help you feel “on” all summer long. Bring the sunshine into your home with new ways to stay mentally active.
This summer, exercise your brain with these exercises that will help you remember the good times, make new memories and plan for what’s next.
Remember the Good Times
Having difficulty with memory is a common cognitive symptom of Parkinson’s disease (PD). When it comes to long-term memory, memories from the distant past are often more preserved than recent memories.
Exercise you mind and stimulate your long-term memory with these activities:
3. Stay social. Contact an old friend or make new ones by calling our Helpline at 1-800-4PD-INFO (473-4636) to find your nearest support group or wellness class.
4. Listen to your favorite summer songs.
Make New Memories
As Parkinson’s progresses, some may experience trouble with short-term memory and retaining new information. Exercise is a the most important activity you can do to keep your body and brain healthy.
Challenge this part of your brain with these activities:
6. Listen to our podcast. New to podcasts? Challenge yourself to learn how to subscribe and listen to the episodes that interest you the most.
7. Host a virtual game or karaoke night.
8. Exercise. Commit to a new at-home workout routine with virtual Fitness Friday exercise classes. Intense exercise can improve efficiency of your brain cells using dopamine and lessen PD symptoms.
9. Enjoy the outdoors. Remember to be safe, use your face mask and practice social distancing.
10. Bring nature indoors. Order a birdhouse kit online and hang it near a window, learn how to compost or start a garden!
Plan for the Future
The global pandemic most likely interrupted some of your plans for 2020. Take this at-home time to exercise optimism and plan for the new memories you would like to create.
Think big with these activities:
11. Make a travel bucket list. Engage your brain’s executive function and begin planning the options that seem most appealing, like a 2021 family trip or weekend getaway.
12. Try an educational webinar. Register for all the upcoming free Expert Briefings webinars that interest you. Stimulate some neurons by learning something new.
13. Write your PD story. Creativity provides excellent mental stimulation. Vary your activity to keep the mind strong and healthy. Submit your My PD Story.
14. Plan to attend a Parkinson’s Foundation event. Whether in-person or online, attending social events help you retain cognitive sharpness.
15. Take steps to #Plan4PD. It is never too late or early to plan for Parkinson’s. Not sure where to start? Order our hospital safety kit and check out different ways you can plan for PD from home.
Join us on social media to #SummerOn with the Parkinson’s Foundation for summer activities, tips, resources and more.
Answering the Top Care Partner Questions About Mental Health
“Mental health includes our emotional, psychological and social well-being. It affects how we think, feel, and act,” according to the Centers of Disease Control. When it comes to living with Parkinson’s disease (PD) ― in any stage ― or caring for a loved one with Parkinson’s, it can become difficult to manage and maintain your optimal mental health.
Panelists included: Linda Pituch, Helpline Senior PD Information Specialist; Travis Turner, PhD, Assistant professor and Director of the Neuropsychology Division, Medical University of South Carolina; Caryn Balaban, MPH, Care Partner, former Parkinson’s Foundation People with Parkinson’s Council member.
People with PD have problems managing the dopamine levels in the brain, which can also be responsible for changes in mood. Common mood changes in PD are depression, apathy and anxiety. Anger and irritability are also common, whether as symptoms, side effects of medication or simply frustration that arises from feeling a loss of control.
Mood swings are a common symptom of Parkinson’s and “it’s important to know where the swing is to and from,” said Dr. Turner. This can help the care partner better understand what is causing their loved one’s change in mood, and how they can help their loved one pivot.
Active listening skills can be effective in de-escalating frustrations and mood changes because your loved one will feel understood. Examples of active listening include asking questions such as, “I think (this) is what you’re saying.” If your loved one with PD is struggling with mental health changes ask yourself: have they been sleeping well? Have they been socializing?
Exercise:Exercise is the best way to combat Parkinson’s symptoms. This is no different with mental health! Maintain an exercise schedule and make it fun. Rock Steady Boxing classes, virtual exercise classes or planning a weekly socially distanced walk with a friend can keep exercise in the routine while being fun.
Socialize: Spending time with friends and family is a great way to help alleviate depression, apathy and other mood changes. Get involved with a PD support group, volunteer, meet others through in your place of worship or an exercise group. There are even singing groups designated for people with PD. If you have a specific interest, consider starting your own group.
Being a care partner is a full-time job and it is important to take care of your own mental health, too. Linda reminds care partners to “give yourself a pep talk that not every day can be a good day. Not every hour can be a good hour — but you have gotten this far and you will do what is needed,” she said.
“We conduct regular maintenance on our cars — why don’t we regularly check up on ourselves?” Seek help professionally or from a trusted friend if you need it. Remember to take breaks — utilize people in your life, or external resources, to allow you respite from caregiving.
It can be difficult to work up the drive to exercise when we feel good, much less when apathy strikes. However, exercise can help. Exercise groups are great resources for community, accountability and it helps with symptom management.
Understandably, in the time of COVID-19 it can be more difficult to exercise and socialize. Maximize Zoom media and virtual meeting apps, texting, calling friends and family in the comfort of your own home. Motivating your loved one with Parkinson’s can be especially difficult when they are apathetic. Linda advises that you ask yourself: “what caught their interest before the diagnosis? What was it that always used to perk them up?” and use that answer to help them feel engaged in something.
When Caryn’s husband was diagnosed, he compared his social experiences to the flu. He disliked that he had to wear his disease rather than hold it inside — and that every person could see his disease. A tactic suggested by the panelists is to embrace the fact that your loved one might look and/or act differently than they used to, but people are less concerned with us than we are with ourselves. Oftentimes, friends and family quickly adapt to changes in your loved one’s communication or abilities.
Dr. Travis points out that psychotherapy or counseling is an effective way to help people process change. Affordability can be an obstacle, but some Medicare plans cover some individual psychotherapy sessions per year. A type of therapy, Cognitive Behavioral Therapy can help you see things differently so that you create new behaviors and patterns.
Staying Social During A Pandemic
As COVID-19 continues to keep us social distancing at home, we know that staying social can be difficult and feel like a low priority. Try our virtual resources for care partners and people with Parkinson’s until you find the one that works best for you:
2. PD Health @ Home: Join us for new weekly online events designed for you.
3. Expert Briefings: These educational webinars are led by an expert and dive into critical PD topics. Register for upcoming webinars and participate in the live broadcasts.
Learn more about Parkinson’s and mental health in the following Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):
8 Useful Parkinson’s Foundation COVID-19 Resources
With so many people with Parkinson’s disease (PD) staying safe indoors, the Parkinson’s Foundation has launched resources articles and virtual programs designed to support the PD community during the COVID-19 pandemic.
Our new virtual programs and content focuses on priority topics like exercising at home, COVID-19 preparedness, stress management, telemedicine and more. Remember, our Helpline 1-800-4PD-INFO (473-4636) is always here to help, especially now.
“As someone living with Parkinson’s disease, I know the importance of communications and providing online resources while the more at-risk PD community is socially distancing at home,” said Denise Coley, a member of the Parkinson’s Foundation People with Parkinson’s Council.
Get engaged and stay up to date with these free virtual events:
Our newest program PD Health @ Home was designed to keep the PD community engaged and moving, our new weekly online events address can help you ease the challenges of isolation. Join us for:
Mindfulness Mondays: learn relaxation techniques and boost your brainpower
Wellness Wednesdays: an expert speaker addresses a critical PD topic every week
Fitness Friday: PD-tailored online fitness program
This fall, Moving Day is going virtual! Every event will host a local, virtual version you can follow and MOVE with at home. All funds raised through Moving Day help us fund cutting-edge research and provide expert care for the one million Americans living with Parkinson’s.
Join us at a fall Moving Day: Fargo Moorhead, Rochester, Buffalo, New Jersey, Boston, Columbus, Venice, DFW, Atlanta, Nashville, Northwest Arkansas, Chicago, NC Triangle, Jacksonville, Palm Beach, Los Angeles, Phoenix and Miami.
Announcing our new season of Expert Briefing webinars! Every live broadcast will feature a PD expert and an opportunity to ask questions. Sign up for an upcoming webinar now.
Contact our Helpline specialists for your PD questions ― from COVID-19, hospitalization and more. Available in English and Spanish, weekdays from 9 a.m. to 7 p.m. ET.
From a person newly diagnosed who feels a heavy dread from their uncertain future to someone distraught about their changing abilities, the Parkinson’s Foundation Helpline occasionally receives calls from people living with Parkinson’s disease (PD) experiencing a level of despair that has become unbearable.
People with Parkinson’s are at an increased risk of suicide. When asked, up to 30% of people with PD have thought about it. Why suicide?
"I don’t want to live this way. I’m tired of it all."
"I wish an accident would happen so I could die."
"When my symptoms become bad enough, I plan to kill myself."
“For some, the thought of suicide may feel like an option, a sense of control in what seems like their only way out,” said a Parkinson’s Foundation Helpline specialist. “They may feel like they would be doing their loved ones a favor. Isolated individuals may feel no one would really notice if they died, while others may feel they are sparing themselves from a poor quality of life.”
Welcome the Discomfort
Suicide is never the only option. It is also a subject that goes unacknowledged since many find it uncomfortable. It is natural to experience fear when a loved one brings up the topic, however that feeling of discomfort can lead to silence, leaving the person with the suicidal thoughts to feel alone — when they need support the most.
What if allowing an uncomfortable and uncertain conversation to unfold meant your loved one with PD felt less alone? If you are the person thinking of suicide, what if you felt like you could have an open and honest conversation with your loved one about your thoughts?
In ideal world, every person with Parkinson’s who is thinking about suicide and every family member or friend would feel comfortable enough to candidly address their thoughts and fears. However, most people feel unprepared or don’t know how to talk about it.
You do not have to do this alone. If you or a loved one is thinking of suicide, contact the National Suicide Prevention Lifeline, available 24 hours a day at 1-800-273-8255 or virtual chat. If you think they may harm themselves immediately, please call 911.
Connecting to appropriate support to help you or a loved one stay safe from suicide is essential. If present, depression or other mental health concerns should be treated by your care team and could involve psychotherapy, medications or both.
Envision a Way Through
Establishing safety from suicide does not necessarily mean the suicidal thoughts have completely stopped. Thoughts and intentions can change from day to day, so continue having candid conversations and accessing help from trained professionals as needed.
If you or your loved one has decided to move forward with a commitment to safety, what comes next?
Find A Specialist
In some cases, better managing PD symptoms can provide relief from despair. Partner with a Movement Disorder Specialist who you trust. A PD specialist can help you optimize medication options and explore surgical options, if recommended. Seeking additional specialists like physical therapists, occupational therapists and speech language pathologists and licensed clinical social workers or neuropsychologists with PD training can also help you manage symptoms. Talk to your care team about depression and suicidal thoughts.
Try other forms of therapeutic support: music therapy, dance/movement therapy, art therapy, massage therapy or acupuncture and other complementary medicines. Engaging in counseling, Parkinson’s support groups, exercise and wellness programs can also help you manage your PD symptoms. Explore palliative care as an added layer of support.
Plan Ahead
End-of-life planning is more than establishing who will handle your affairs after you die. End-of-life planning includes making plans for what could happen before we die, allowing us to assert some control over one’s future and one’s death.
Arranging a living will and durable powers of attorney for healthcare and finances, partnering with your doctor to sign a portable medical order (POLST/MOLST), and/or completing a Five Wishes advance directive are all ways to plan ahead. This effort can also bring peace of mind and comfort to our loved ones. Learn more about planning ahead.
Death with Dignity / Medical Aid in Dying
People with Parkinson’s may think of the challenges or complications that can occur during late-stage PD and decide they prefer dying on their own terms. Some Helpline callers have inquired about assisted dying or assisted dying laws. According to Death with Dignity, “Death with dignity laws allow qualified terminally-ill adults to voluntarily request and receive a prescription medication to hasten their death.
As of September 2019, aid in dying statutes are in effect in California, Colorado, District of Columbia, Hawaii, Maine, New Jersey, Oregon, Vermont and Washington. More information about Death with Dignity can be found on their website or by calling 503-228-4415. The Parkinson’s Foundation acknowledges that assisted dying is one among many end-of-life options that some might consider.
Re-establish Your Identity and Meaning
Our identity, sense of self and understanding of our purpose or reason for living can be challenged when we feel disempowered, disheartened or in despair. People at any point along the journey of PD may struggle with these challenges. Try these approaches:
Turn to a family member or friend, support group member, counselor or spiritual leader for support with existential questions.
Seek ways to reconnect with the parts of your identity that are not tied to your diagnosis and symptoms.
Help or mentor other people with PD. Offer to make telephone check in-calls to members of your exercise class or support group. Utilize your experiences to answer questions posted on online PD forums.
Volunteer outside the PD community. Many local senior service organizations or grief support agencies look for volunteers to help with telephone-based support programs. Visit a site like VolunteerMatch.
Anyone who has considered suicide has their own reason for doing so and their own journey to find hope again. If you have been there, share what has helped you. Consider submitting a My PD Story as we continue to open the dialogue on this under-discussed topic.
Parkinson’s disease (PD) is much more than a movement disorder. It can have wide ranging effects throughout the body. In terms of the brain, people with PD may experience changes in cognition, mood, emotion, perception, attention, sleep, memory, motivation, and the senses, as well as drug-induced behavioral changes. One of the key professionals on a comprehensive PD treatment team is the neuropsychologist, a person with training and expertise in asking questions and administering screening and assessment tests to evaluate a person’s mental abilities and psychological state. Deficits in one or more of these areas can make it difficult to control motor symptoms such as tremor and balance.
Depending on the results of the evaluations, the neuropsychologist can work with other team members to implement therapies and teach strategies to improve the life of the person with PD. Also, it may be useful to have a neuropsychological evaluation early in the course of the disease to establish a baseline so that a neurologist can later determine if changes, especially in cognition, are related to medications, to progression of the PD itself, or to other factors such as depression. In this episode, Dr. Travis Turner, Director of the Division of Neuropsychology and chief liaison to the Movement Disorders Program at the Medical University of South Carolina in Charleston, a Parkinson’s Foundation Center of Excellence, discusses the role of the neuropsychologist, the process of neuropsychological evaluation, and some of the kinds of problems he deals with.
Released: June 2, 2020
Travis H. Turner, PhD, is assistant professor and director of the Neuropsychology Division at the Medical University of South Carolina. He is also senior clinical director of Movement Disorders at VeraSci. He studied psychology and neuroscience at the University of Pittsburgh, earned his doctorate in clinical psychology through San Diego State University and the University of California, San Diego, and completed internship and postdoctoral training at MUSC. He has been active in clinical and research efforts with the Movement Disorders program for over 10 years. Clinical activities include neuropsychological evaluations and focused interventions for patients with Parkinson’s disease and related disorders. His research program is aimed at developing new ways to measure and treat neuropsychiatric symptoms in Parkinson's disease. Current projects include standardization of computerized behavioral saccade tests, neuropsychological assessment via videoconferencing (i.e., telemedicine), and clinical trials. He supervises neuropsychology postdoctoral fellows and provides training to graduate students, medical students, interns, and residents. When he’s not working, he enjoys fishing, building furniture, and spending time with his family.
For many, it is embarrassing to bring up taboo topics with your doctor ― from sexual dysfunction to incontinence. However, when it comes to living with Parkinson’s disease (PD), sometimes these topics can be connected to the disease itself or side effects to PD medications.
No topic should be considered off limits to discuss with your healthcare team. The more we normalize and bring awareness to these issues, the less taboo they become. Scroll down to view some of these topics and their connection to Parkinson's, or click to jump straight to a specific topic.
Sexual Dysfunction
Sexual dysfunction is common in men and women with PD. The issue often goes unaddressed as patients, spouses and healthcare providers may not be comfortable discussing sex. Parkinson’s itself may cause sexual dysfunction due to the loss of dopamine. Medications, such as anti-depressants, can also contribute to sexual dysfunction. To note, most PD drugs are not associated with impotency or loss of libido.
Hypersexuality can also be linked to certain dopamine agonists. There are many ways to address PD-related sexual dysfunction, and it all starts with speaking to your doctor. Try writing your symptoms down before your next appointment and telling your doctor you have a sensitive issue you want to discuss.
Dopamine medications have improved life for millions of people, but researchers believe that some people with PD on dopamine agonists or monoamine oxidase (MAO) inhibitors can develop impulse control disorders: unhealthy levels of gambling, shopping, eating or sexual activity.
If you believe that you or a loved one has an impulse control disorder, try to identify a trend in unhealthy behaviors and discuss it with your doctor. These disorders usually respond to medication changes. Your doctor can often work with you to reduce your dosage or switch to another medication.
For many, stress can be a part of life when caring for someone with a chronic illness such as PD. However, some care partners may have a tough time coping with the fact that they need help. Care partners and their loved ones should address caregiver burnout as soon as you notice warning signs: feelings of anxiety, anger followed by guilt, bitterness towards family members and depression.
In general, 40 to 70 percent of caregivers are significantly stressed, and about half of these meet the criteria for clinical depression. While a challenge in itself, learn your limits as a care partner and find a support network that works for you. Many times, you can work with your loved one’s care team or a social worker to find additional help and resources that work best for you.
For many, the term palliative care is associated with fear. Think of palliative care as supportive care, defined as helping people with Parkinson’s and care partners plan for the future, address non-motor symptoms and provide an extra level of support. Palliative care can help people with PD and their families at any stage.
Palliative care is not the same as hospice care. It does include hospice, which is end-of-life palliative care, but also provides support for patients and families from the time of diagnosis.
Many adults avoid the subject altogether. However, all adults, even if their health is excellent, should document their wishes and preferences should a health emergency occur. If you have a spouse, partner, children or others you care about, as your disease progresses estate planning can help you ensure that they are provided for and cared for, if necessary.
Get organized. Consider creating a binder with the following main document categories: Medical, Family, Insurance/Property and Finance. Make sure that a close family member or friend knows where to find them in case they are needed. Taking the time to make advance preparations for this inevitability is practical and necessary. Honest conversations about end-of-life planning and care may not be comfortable or easy, but they are important so you can ensure that your wishes are honored.
Doctors usually wait until the end of an appointment to ask, “anything else?” How do you transition into your potentially uncomfortable topic?
Remember that your doctor has heard it all. She/he wants to help you increase your quality of life.
Give yourself a quick pep talk. Your symptom or issue has been impeding on your quality of life. The conversation will only last a few minutes and may have a simple solution.
Write it down. Give yourself a natural transition in the conversation to bring up your topic. Try something like, “I wrote down some symptoms and/or issues I want to discuss, and they are sensitive in nature.”
Add details. Try to remember when the issue began, how long it has been a problem, when it occurs and all your symptoms.
Your doctor will work with you to address the issue and can often provide guidance or a recommendation.
For more information visit our non-movement symptoms page. You can also discuss any topic with our Helpline at 1-800-4PD-INFO (473-4636).
