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.
As we look towards the new year, we want to help you thrive in 2022. New Year’s Resolutions are a great way to start intentional goals. 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 what you want this year to look like. Resolutions are not supposed to be impossible or cause guilt; they should be goals that are exciting. 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) with motor and non-motor symptoms. There are many options of what kinds of exercises you can try. Participating in a fun workout can help you enjoy your time and strengthen your body.
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 2022, 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 has answers to your Parkinson’s questions at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org.
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. Find your ideal therapist online.
Utilize OnlineTherapy.com to find your ideal therapist -- from anxiety specialists, to relationship counseling, social workers, sex therapists and more. Find a therapist who practices online and can provide counseling straight to your device. The website also features the ability to match you with a therapist and search for in-person options.
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.
Parkinson’s Q&A: How long does it take to accept a Parkinson’s diagnosis?
Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question addressed by the community in PD Conversations.
Question: How long does it take to accept a Parkinson’s disease diagnosis? Are there any resources that can help?
A Parkinson’s diagnosis can be emotionally distressing. Many people may feel stressed, depressed and afraid while some may feel relieved to finally have an answer that explains their symptoms. Feeling a myriad of emotions is a normal part of being newly diagnosed, but that does not mean it is an easy thing to experience.
Many people struggle with accepting their PD diagnosis. It can be tempting to ignore the symptoms you experience or avoid talking about your concerns. Taking the time to respond to your Parkinson’s disease diagnosis is necessary to living well with PD, as it allows you to chart a path forward.
Working toward accepting your diagnosis will look different for each person with PD. Everyone has their own process and pace for making sense of this news and what it means for them. Set aside time to gather your thoughts, collect information and express your emotions with those you trust.
Parkinson's Foundation Helpline
Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to your Parkinson’s questions. Helpline specialists can assist you in English or Spanish, Monday through Friday, 9 a.m. to 7 p.m. ET.
You are not alone with Parkinson’s. Our PD Conversations community has some tips to help with adjusting to a Parkinson’s disease diagnosis:
Make time to continue doing the things and hobbies you enjoy. Self-care can help with getting from one day to the next.
Connect with loved ones and those who can understand what you are going through. It can be helpful to talk to others about your experiences. Find nearby exercise classes and support groups through your local Parkinson’s Foundation Chapter.
Research and learn about Parkinson’s disease. It can be easier to accept your diagnosis once you know what options are available for living well with PD. We have many helpful resources in our PD Library than can help.
Express your concerns about your new diagnosis to your healthcare team. They can offer direction about next steps and refer you to additional resources that can help.
Utilize these newly diagnosed resources and share them with your loved ones:
Accepting a Parkinson's diagnosis is a challenge, but you are not alone in this process. We are here to support you and your family through your concerns. Contact the Parkinson’s Foundation Helpline for answers to your PD questions at 1-800-4PD-INFO (1-800-473-4636).
Top Takeaways About Complementary Therapies and PD
People with Parkinson’s disease (PD) seeking to ease symptoms sometimes explore complementary therapies to support traditional treatments. Whether employing mindfulness to help manage pain or incorporating food as medicine, broad-ranging supplemental wellness strategies can boost well-being. Learn what to consider when exploring these therapies and how to work with your care provider for peak outcomes.
This article is based on Conversations About Complementary Therapies and PD, a Parkinson’s Foundation Expert Briefings webinar exploring treatments sometimes used together with medicine, presented by Natalie Diaz, MD, Neurology, Pacific Movement Disorders Center, Pacific Neuroscience Institute.
Up to 40% of people with Parkinson's in the U.S. incorporate complementary therapies into their self-care.
Advances in Integrative Medicine
Up to 40% of people with Parkinson's in the U.S. incorporate complementary therapies into their self-care.
There are more than 20 available prescription medications available today to treat Parkinson's symptoms. Complementary therapies are supplemental wellness products or strategies sometimes used alongside conventional medicine to alleviate the non-motor symptoms of Parkinson's, such as stress, nausea or constipation, or to improve sleep or well-being. Research shows up to 40 percent of people with Parkinson's in the U.S. incorporate complementary therapies into their self-care.
Integrative medicine — where medical providers combine traditional medicines and complementary therapies in a person's care — is also thriving. Doctors and healthcare experts can now receive board-certified integrative medicine fellowship training. A 2020 study found more than 50 percent of primary care physicians have recommended complementary therapies.
Data shows geographic differences in the use of complementary therapies. Americans tend to incorporate vitamins, dietary supplements and herbs and botanicals. Europeans and Scandinavians rely more on body-based practices, such as yoga and massage. Traditional medical systems in Asian and African countries incorporate a combination of all these practices.
There is also a socioeconomic gap in complementary therapy adoption – with people of greater incomes tending to use them. Many such treatments can be costly and are rarely covered by insurance.
Types of Complementary Therapies
Exercises, like Tai Chi and yoga
Vitamins and Supplements
Acupuncture
Meditation
Healthy Foods
Medical Cannabis
And more!
Benefits of Mind-body Wellness Practices
Types of Complementary Therapies
Exercises, like Tai Chi and yoga
Vitamins and Supplements
Acupuncture
Meditation
Healthy Foods
Medical Cannabis
And more!
Studies show mindfulness practice has physical and mental benefits. People with PD use mindfulness meditation to ease pain, minimize stress, increase focus and boost mood.
Other mind-body wellness practices proven to reduce stress and ease many symptoms of Parkinson's include exercises such as yoga and Tai Chi. These can lessen stiffness, increase flexibility and awareness of movement, and improve alignment, posture and core strength.
Acupuncture, where thin needles are placed at specific body points, is also sometimes used to alleviate PD pain. It's important to work with a qualified, skilled practitioner. Practitioners of reflexology, another mind-body technique, manipulate areas of a person's body to ease stress and aid digestion. As with exercise, effectiveness of these complementary therapies requires regular practice.
Making Sense of Supplements: Proceed with Caution
Despite the eagerness to incorporate supplemental strategies to live well, research shows more than half of Americans using complementary therapies don't consult their doctors before or during use. Open discussion with your care provider can uncover potentially serious side effects, prevent prescription medication interactions and ensure optimal outcomes.
Prescription medications go through rigorous U.S. Food and Drug Administration (FDA) approval processes to monitor and log potential adverse effects. However, alternative therapies such as nutritional supplements are instead regulated by the FDA as food, rather than medication. Although some companies use third-party verification to vet the supplements they sell, ingredients and dosages in over-the-counter vitamin, herb and dietary supplements can vary greatly. Be sure to seek a quality source.
Much of the science around nutritional supplements, herbs and botanicals is limited and inconclusive. Though some substances hold promise, more studies are needed.
Vitamins and supplements studied for complementary therapy by people with PD include:
Vitamin C – antioxidants that may protect brain cells.
Coenzyme Q10 – dosages of up to 2,400 mg daily are shown to be safe and well-tolerated, but there's currently no evidence of clinical benefits. This supplement interacts with blood thinners and aspirin. It can promote blood clotting and lower blood pressure.
Creatine – while studies currently show no effect on PD progression or symptoms, this supplement might possibly boost mood.
Vitamin E – one study shows this vitamin failed to stop Parkinson's progress. It can increase bleeding risk and interact with blood thinners and aspirin.
Glutathione – studied in oral, injected and intranasal formulations to show no PD benefit.
Omega-3 fatty acids – 1,000 mg of flaxseed oil and 400 IU vitamin E may decrease inflammatory markers and improve motor function. However, it can cause gastrointestinal and neurological side effects.>
CDP-choline(cytidine diphosphate) studies show taking 400 mg three times daily may lower levodopa dose.
Phosphatidylcholine studies show using 100 mg three times daily can improve mood and motor function but can interact with other medications.
Resveratrol caninteract with aspirin, blood thinners and anticoagulants. It can also cause mild estrogenic activity.
Beta carotene can cause skin pigmentation.
Vitamin A might create nausea, dizziness and headaches.
Vitamin B3/Niacin can bring on facial flushing and tingling.
Vitamin D3 can lower the effect of statins and elevate blood calcium level when taken with certain diuretics.
Herbs and botanicals investigated for effectiveness in PD are:
Gallic acid
Ginseng
Gingko biloba – shown to cause headache, stomach upset, palpitations and constipation, and can interact with many medications, including blood thinners.
Curcumin, which might cause nausea or diarrhea.
Green, black and oolong teas (camellia sinensis) cancause weight loss, nausea, rash, jitteriness or liver toxicity.
Epigallocatechine-3-gallate (EGCG),can create dizziness and low blood sugar.
Lion’s mane (Hericium erinaceus) can increase bleeding and interact with blood thinners.
Milk thistle can cause abdominal bloating, diarrhea and loss of appetite. It also may lower blood sugar in people with diabetes.
Quercetin can cause headache and nausea.
Vincamine can cause low blood pressure, sedation and irregular heartbeat.
Red clover can cause headache, nausea or muscle aches or estrogen-like effects including bloating, weight gain or tender breasts.
Nutritional supplements potentially useful for Parkinson's include:
Melatonin, which may ease sleep-onset insomnia and dream enactment.
Chamomile or passionflower – to promote sleep and ease anxiety.
Valerian root might also promote sleep, but some people can experience headache, stomach upset and mental fog.
Ginger, which may help indigestion, but can cause heartburn and diarrhea./li>
Peppermint oil might also help indigestion.
Flaxseed or flaxseed oil, which might ease constipation./li>
Cranberry extract – this may reduce the risk of recurrent urinary tract infections.
Mucuna Pruriens (velvet bean)
Seeds of mucuna pruriens, a legume found in tropical and subtropical areas, contain levodopa — the most powerful treatment for PD. Mucuna has been used in traditional medicine for millennia for a number of medical conditions. It's thought to have anti-inflammatory properties, and may benefit diabetes.
It also might work as an antidepressant and has been documented in ancient texts to help what sounds like Parkinson's. A few studies compare this legume to traditional levodopa, however more research is needed to explore its safety and long-term side-effects.
Cannabinoids
Cannabinoids are one group of hundreds of substances found in the cannabis sativa plant, known when dried as marijuana. There are more than 100 known cannabinoids.
Tetrahydrocannabinol (THC) is known for its psychoactive euphoric effects. Cannabidiol (CBD), another psychoactive, is associated with calming effects.
Medical marijuana is now legalized in more than 30 states, while recreational marijuana is legal in 15 states. Small studies have shown cannabis might have potential to ease some PD symptoms — such as anxiety, sleep disturbances, pain or gastrointestinal issues — but more research is needed to determine if there is any medical benefit.
Safety issues from use include potential medication interactions, delayed absorption and effects from edibles, and dangers of lung injuries from vaping. Side effects can also include low blood pressure, fatigue, dizziness, mood or cognitive changes, changes in balance, hallucinations and changes in weight.
The lack of quality control across products also has its dangers. No governing body regulates cannabinoid quality or labelling accuracy. Products can be contaminated with microorganisms, pesticides or other substances. Like nutritional supplements, studies show cannabinoid content differs between manufacturers and deviates from the label.
The Takeaway
Complementary therapies often focus on treating the whole person, rather than symptoms alone. They can inspire a sense of wellness or empowerment. Some therapies have even shown promise in Parkinson's studies, but research is still in the initial stages.
Discuss the pros and cons of any complementary therapy with your care team before beginning. When incorporating complementary therapies, only change one thing at a time. Monitor your progress. Noticeable changes can take time — give it anywhere from a few weeks to a month.
Explore the nonprofit U.S. Pharmacopeia (USP) scientific organization to discover supplement manufacturers who participate in USP's dietary supplement verification program. ConsumerLab.com also independently tests vitamins and nutritional supplements for quality and labelling accuracy.
Looking to amplify your wellness from home? The Parkinson's Foundation has everything you need to live better today. Join us weekly for PD Health @ Home.
Together with Barrow Neurological Institute, a Parkinson’s Foundation Center of Excellence, Debbie was awarded a 2021 Parkinson’s Foundation community grant to bring nutrition, mindfulness and lessons in Argentine Tango to Spanish-speaking people with PD in Phoenix, AZ in a safe, virtual environment.
Read the full issue
This article is featured in the Parkinson Report Special Awareness Issue.
The program, ¡Únete a la fiesta de TU autocuidado!, is a 12 month virtual Spanish-language series that provides Hispanic people with PD and their care partners with a safe community to express themselves weekly in ways that feel culturally familiar and reassuring. In 2022, two live events have been added (with COVID protocol) at two parks, in February and April, where participants dress up (as if going to a party), socialize and share several activities related to the program, including games related to mindfulness, nutrition (food bingo and food label reading) and Argentine Tango.
The use of Argentine Tango is a relatively new tool for engaging the PD community. Research has proven that it facilitates improvement of gait, tremors, flexibility, socialization, musicality and self-confidence for people with PD. Decreases in stress and anxiety and even better sleep outcomes have been reported.
“I started to learn Argentine Tango in 2019, in Argentina, when I visited my parents. My intensive Argentina Tango studies led me to professors who were experts in tango therapy and the use of social tango (vs. ballroom choreography) for health,” said Debbie.
The program starts with a “Positive Mindset Message” breath and movement practice and an Argentine Tango lesson, followed by a demonstration in preparing a simple, healthy recipe and a ‘cheers’ with a healthy drink.
Participants are encouraged to dress as if they were going to a party to contribute to the festive virtual atmosphere. “Hispanic people are used to socializing and place high importance on hugs, love, music, dance and food,” said Debbie. “When PD participants can share and realize they are not alone, both mind and body improve. Further, Argentine Tango creates a sense of feeling safe and loved in a tango embrace.”
There is a strong social media component as well, which is ongoing and connects participants daily. “We have created a close-knit virtual community, with 24/7 resources available to the PD participant and their care partner throughout the whole year,” said Debbie. “Participants inspire each other, share their daily stories, meals, exercises, thoughts and emotions, family photos, happy and sad moments, etc. That has made a real difference in their lives.”
Fostering strong social connections to combat the isolation and depression experienced by many people in response to the COVID-19 pandemic is central to the program’s goals. “The events of the last two years have increased levels of isolation, anxiety, depression, stress, and created reduced access to medical care and loss of self in the PD community,” said Debbie. “So much fear and negativity have been feeding our world. I wanted to use positivity and socialization to combat these issues, and to reach diverse PD communities.”
Debbie further drew inspiration from her late grandfather’s long journey with PD (he lived until 92) and her multicultural upbringing. “As a bilingual healthcare professional raised in Argentine-American culture, I was able to pull together both of my parent’s influences,” said Debbie. “My American Mom instilled in me a love of cooking, music and dance. My Argentine Dad was a cardiologist and a strong believer in stress management. Combining both science and creativity in this engaging program, and educating through entertainment, helps the PD participants make long-term lifestyle changes.”
“I feel this program has allowed us to live longer,” a program participant said. Another said, “Daily advice allows us to reflect and be conscious of our lifestyle actions. It allows us to express ourselves freely.”
Debbie is thankful for the Foundation’s community grant support. “The Parkinson’s Foundation has allowed for a very positive impact on participants; they join in even when they are feeling sad or worried,” said Debbie. “I want to thank the Foundation’s supporters for giving us a chance to share this program.”
Discussions about Parkinson’s disease (PD) often mention a spouse or care partner who helps care for their loved one. However, it is also important to acknowledge that many people with Parkinson’s live alone. Read on to learn about the benefits and challenges of living alone with PD, and where you can find support.
Emotional Challenges of Living Alone
Social Isolation
Living alone with PD offers a sense of independence, but it may also feel isolating. Everyone experiences feelings of isolation and loneliness at times, but it is important to be able to identify when these feelings are negatively impacting your health.
If you experience feelings of apathy or fatigue for more than five days over a two-week period, you may have depression. Reach out to a medical professional to discuss a diagnosis and treatment options.
Accepting Your Situation
As a person living alone with Parkinson’s, your day-to-day experience is different from someone who lives with a spouse or care partner. It can be challenging to find resources that are tailored toward people who live alone. You may also struggle with feelings of inadequacy when comparing your life to those around you.
Remember that just as Parkinson’s disease affects everyone differently, each person with PD lives with and manages the disease in their own way. You and your experience are valid. There is a strong community of people living well alone with PD.
Staying Connected While Living Alone
Living alone does not mean you are alone — there are plenty of people who can help support you. Your network of support may include:
Family
Friends
Neighbors
Coworkers
Therapist/counselor
Medical team
Support group
Faith community
Pets can also provide support. Pets can also be registered as an emotional support animal, which can help ease anxiety and provide therapeutic support in public places.
There are many ways to stay connected to your existing support network or to make new connections. Try these options from home:
Tip: On days when you are struggling emotionally, try to talk to one person or accomplish one task. Making a connection or participating in an activity can help boost your motivation and decrease feelings of loneliness.
Join a support group. Support groups allow you to share your experiences and engage with the PD community. Many support groups now offer virtual meeting options. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) to find a support group near you. Looking for an online network of support? Join PD Conversations.
Volunteer or tutor. Giving back always feels good. Search VolunteerMatch to find opportunities to share your skills with others.
Attend a Parkinson’s Foundation webinar. Register for a Wellness Wednesday event to gain strategies for living well with PD, or attend an Expert Briefing to get the latest updates on Parkinson’s research and care.
Get involved in your local community. Attend a town meeting or an event at your local library.
Participate in an online exercise class. Exercise is a great way to stay active while managing your PD symptoms. Our Fitness Friday series provides free, at-home workouts designed for people with Parkinson’s.
Reach out to a chat service. Chat services like Well Connected allow you to engage in friendly conversation and build social connections.
Tips for Living Alone with PD
Living alone with Parkinson’s involves adapting to your circumstances. Here are a few tips for making everyday tasks easier to manage:
Tailor your living space to your needs. One benefit of living alone is the ability to organize your own space. Place essential items where you can easily see and access them, so you can find what you need when you need it.
Keep a pair of pliers handy. This multi-purpose tool can help assist you with opening jars or bags.
Adjust your phone settings. There are various options that can simplify using a smartphone. Consider turning on these features to better control your phone and stay connected:
Touch Accommodations: This feature changes how the screen on your device responds to taps, swipes and other gestures.
Voice Commands: Voice assistants like Siri or Google Assistant reduce the need to use your hands for phone access. These tools can be used to launch applications, make phone calls and dictate text messages.
Create a scheduling strategy. Schedule commitments around the times of day when you typically feel your best. Identify how many tasks you can usually accomplish on a “good” day or a “bad” day to avoid overscheduling. Set timers for your medications so you remember to take them on schedule.
Reach out to your network of support. Ask for help with challenging tasks. Even if you are able to take care of yourself, shifting some responsibility can help you save energy for things you enjoy, like hobbies or social interaction.
Use our Home Safety Considerations checklist for more tips on how to stay safe while living alone with PD.
Planning for the Future
Living alone adds the responsibility of keeping yourself safe, both now and in the future. Starting the planning process early will ensure that you have control over important life decisions later on, such as choosing an assisted living facility or nursing home.
You may also consider signing a health care proxy form. This document names someone you trust as your proxy and allows them to make health care decisions for you if you are unable to speak for yourself.
It may be difficult to admit you need assistance after living independently for many years, but safety should always be the priority. If you have trouble moving around your space or accomplishing daily tasks, reach out to someone you trust to adjust your living situation.
Just because you live alone does not mean you are alone. The Parkinson’s Foundation is here to help you live better with Parkinson’s disease. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) for help finding resources near you.
Researchers are lasered in on slowing and someday stopping Parkinson's disease (PD) in its tracks. Explore what they've discovered, see what the future might hold and learn how some of the strongest weapons in the fight against Parkinson's progression are practices you can put in place today.
This article is based on Can We Put the Brakes on PD Progression, a Parkinson’s Foundation Expert Briefing webinar presented by Joash Lazarus, MD, Multiple Sclerosis Center of Atlanta.
PD symptoms stem from a protein, called alpha-synuclein, that clumps and accumulates in certain areas of the brain. This process depletes dopamine, which is critical to many body processes, including smooth, coordinated movements. Though dopamine declines for everyone who lives with Parkinson's, each person experiences disease symptoms differently.
But is there a way to slow Parkinson's progression? While scientists are evaluating everything from medications to mindfulness practice for clues, they've discovered some of the biggest benefits start at home.
Healthy Eating and Regular Exercise: A Powerful Combo
Making nutritious food the mainstay of your meals and enjoying regular exercise has countless proven benefits. Studies show targeted nutrition may slow Parkinson's advancement. Eating a whole-food, plant-based, Mediterranean-style diet — including fresh vegetables, fruit and berries, nuts, seeds, fish, olive and coconut oils and more — may be linked to slower PD progression.
When you live with PD, exercise is also critical to optimal health. In fact, the Parkinson’s Outcomes Project shows at least 2.5 hours a week of physical activity can slow PD symptom progression. Research reveals regular exercise also shows neuroprotective effects in animal models with Parkinson's.
Exercise benefits people of all ages. As people get older, their risk for falls increase. For people with PD, the chance of falls is two to three times higher. Up to half of these falls can result in major injury. Exercise is the only thing to notably minimize a person’s risk of falling. Regular physical activity can also boost balance, improve heart and lung function, increase memory, thinking and problem solving, minimize depression and more.
Here's how to make exercise work for you:
Maximize benefits by exercising moderately to vigorously 150 minutes a week.
Plan a weekly routine that includes aerobic activity, strength training, balance and stretching exercises.
Visit a physical therapist with Parkinson’s expertise for a functional evaluation and exercise recommendations.
Reference this Parkinson’s Exercise Recommendations PDF in English or Spanish to help guide your physical activity plan.
Specialized Parkinson's movement and speech therapies, such as the Lee Silverman Voice Treatment (LSVT) BIG and LOUD programs, have also shown potential to lessen symptoms and slow PD progression.
Exploring Therapy Advances
People with Parkinson's take a variety of medications to manage symptoms. PD researchers have spent decades working to discover therapies powerful enough to slow or stop Parkinson's. Some of these include:
Rasagiline
The 2009 ADAGIO study looked at whether rasagiline — a monoamine oxidase-B (MAO-B) inhibitor (these can minimize the enzyme MAO-B's breakdown of dopamine and ease movement symptoms) — could put the brakes on disease progression for people in early-stage Parkinson's. The results suggested the possibility that a 1 mg daily dose of rasagiline might hold disease-modifying potential, but a 2mg daily dose did not.
Despite the study's uncertainties, it still showed ample evidence that rasagiline better controlled symptoms for people with PD, which is why it's used in concert with levodopa, currently the most powerful medication for Parkinson's and a treatment mainstay since its discovery in the 1960s.
Levodopa
Levodopa is a proven effective therapy throughout the Parkinson's journey. In the past, people often delayed starting levodopa therapy based on the myth that it would stop working after a few years. A 2019 study looked at whether starting levodopa earlier or later could change the course of Parkinson's. While research showed levodopa didn't slow PD, it proved starting the medication early on in Parkinson's is safe.
Deep Brain Stimulation
When people who live with PD begin to experience severe motor fluctuations, tremors and dyskinesia, involuntary muscle movements that can't be controlled by optimal medication doses, a surgically implanted deep brain stimulation (DBS) device can deliver electrical pulses to the brain, easing symptoms and boosting quality of life.
Results of a 2020 study proved people with Parkinson's disease can also get long-term symptom relief with DBS. The research shows people who have DBS therapy early on — coupled with optimal medication — generally do better with dyskinesia control. Despite the profound benefits of DBS, it's not proven to delay disease progression.
As researchers work to solve the Parkinson's puzzle, empower yourself by prioritizing your well-being. Wholesome food paired with regular exercise habits and comprehensive team-based treatment are the building blocks of a better life with PD.
