Whether you’re planning your next beach escape or gearing up for a road trip, the need for entertainment is key, and what better way to tune out than tuning into our podcast?

Featuring the latest treatments and techniques in the Parkinson’s disease (PD) field, our Substantial Matters: Life and Science of Parkinson’s podcast features the experts in the Parkinson’s community who cover a series of PD topics including employee dynamics, the benefits of exercise, alleviating voice challenges and more!

We’ve made it easy for you by picking out our top recommended podcast episodes for the summer― think of this as your curated PD podcast playlist. Just a click away, these episodes will transport you into the labs, offices and meeting spaces of PD health professionals who are eager to share more about your PD topic of interest.

1. The Benefits of Music Therapy for Parkinson’s

The benefits of music therapy for Parkinson’s have been well established. Rhythm and rhythmic cuing can help with initiation, coordination and maintenance of movement. Benefits can extend to cognitive functions, communications abilities and mood. Some music therapists have furthered their education as academically trained professionals specifically in working with people with Parkinson’s.

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2. Parenting and Parkinson’s: Raising Children While Living with Parkinson’s

Parenting has its challenges and surprises under the best of circumstances, but when a parent has Parkinson’s, it can put added stresses on the family. As parents’ abilities and roles change, children should understand the disease, how it may change their routines and the potential need to take on additional responsibilities. 

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3. More than a Movement Disorder: Addressing Mood and Coping

Parkinson’s is more than a movement disorder. While movement symptoms may be a prominent outward symptom of PD, mood and other emotional changes are also common ― and not just for the person with PD. Care partners may also experience these changes. Often, the best way to recognize these problems and figure out coping strategies may involve other health professionals. 

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4. Talking to Your Employer About PD: Disability Inclusion and Accommodation at Work

Many people with Parkinson’s want to continue to work. Sometimes all it takes is recognition of their condition by their employer and accommodations to compensate for disabilities. In fact, the Americans with Disabilities Act provides certain protections in the workplace for people with disabilities once they reveal their situation to their employers, who are then required to make reasonable accommodations to do the job. 

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5. Alleviating Voice Challenges with PD

Just as Parkinson’s affects movement, it can affect muscles of the face, mouth and throat, leading to problems with speech and swallowing. People with PD may experience voice problems during the course of their disease. The problems tend to increase as the disease progresses but may occur at any stage.

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6. Changing the Hospital Experience Through Aware in Care

People with Parkinson’s need their medications on time, every time. Getting them too soon or too late can cause problems. So when a person with PD enters the hospital, which happens 50 percent more often than their peers, the staff often needs to be educated on the importance of delivering medications at the right dose and at the right times ― times that may differ from the usual times that medications are dispensed.

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7. Encountering Gender Differences: Women and PD Initiative

Given the differences women may encounter when dealing with their Parkinson’s, the Parkinson’s Foundation is leading the first national effort to address gender disparities in Parkinson’s research and care as part of an overall Women and PD Initiative. The Foundation has developed new patient-centered recommendations to improve the health of women living with PD.

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If you like what you hear, be sure to subscribe, rate and review the series on Apple podcasts or wherever you get your podcasts. We want to hear what you think about our podcast! Share your feedback here.

A balanced diet is the foundation of good health for everyone. However, nutrition is even more important for people with Parkinson’s disease (PD). While there are many things about PD that cannot be changed, the informed choice of diet is one that can help people to live better with Parkinson’s.

The right food can optimize medications, ease symptoms, keep bones strong, fight constipation and weight loss and help maintain general health and fitness. A healthy diet can be delicious at the same time. Check out some of the fun and healthy recipes we made this summer for #FoodieFriday on our social media.

Blue Majik Pancakes

This recipe contains antioxidants, such as blueberries and spirulina, that may help defend your cells from damage. Almond flour is a great replacement for regular wheat flour since it is packed with nutrients, is low in carbs and may reduce “bad” cholesterol and insulin resistance. For a fun breakfast, try these healthy blue pancakes.

What makes the pancakes blue? Blue spirulina, sold at health food stores and sometimes the vitamin aisle, is derived from blue-green algae that is high in nutritional content and can help boost the immune system, increase energy and improve digestion.

As a caregiver for a loved one with Parkinson’s disease (PD), your days may include medication alarms, driving to and from appointments and helping your loved one with activities of daily living. Simultaneously, you may be managing finances, cooking, working and trying to keep up with family and friends. It can be easy to forget that your needs require attention too. Self-care is defined as any practice that relieves stress and encourages a healthy mind and body.

We know you are busy, so we’ve compiled 15 realistic ways you can implement self-care…starting now:

1. Eat healthy with less hassle. The better you eat, the better you feel.
2. Manage stress. Determine what helps you relax most: a hot bath, a meditating app, reading a new book or going on a walk. Then devote time to it every day.
3. Exercise regularly. We know that exercise plays a role for your loved one’s PD, and consistent exercise can also help you. Just 30 minutes of daily exercise can help you sustain your energy and lead to better sleep.
4. Set limits and stick to them. This means asking for help when you need it. Try new resources. Bring in outside help (family or paid worker) so you can take a break. Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636). No one can do everything for everyone all the time!
5. Reflect on the rewards of caregiving. Alongside trials and challenges, caregiving offers triumphs and joys. Take pride in how much you have learned and in discovering your own strengths.
6. See to your own health needs. Set up and attend your own medical appointments regularly. Your physical and mental well-being are key to successful caregiving.
7. Find activities you can enjoy with your loved one outside of care. Go to a movie, host a dinner party or sign up for something new. Enjoy time together.
8. Drink plenty of water. Staying hydrated helps flush out toxins, so bring a reusable bottle wherever you go.
9. Socialize with people who uplift you. Nothing can empower you like a feeling of camaraderie. Minimize exposure to negative people. Instead, go out with friends or get involved with a community organization, support group or charity that you believe in.
10. Laugh. Keeping a sense of humor helps beat anxiety. Watch a funny video or read something funny every day. Recognize and enjoy the happy moments with your loved one.
11. Schedule breaks from caregiving and make them a priority. Take time to pursue other aspects of your life or just to relax. Plan these breaks in advance and arrange for help while you’re out.
12. Cultivate a mindfulness practice. Try morning meditations or set a daily reminder to assess how you are coping. If you are stressed, plan your next break.
13. Life plan. Thinking about your future and what you want to achieve in life can help you maintain personal motivation. Can your loved one help you reach your goals?
14. Accept your feelings. Guilt, anger and depression are normal reactions to a progressive disease. Recognize the hidden grief component in these emotions and seek out someone who understands it. Knowing what to expect emotionally can help.
15. Practice being grateful. Recall or write down a few things from your day that made you or your loved one smile. Learn to savor the good times and the things that went right, however small.

Want more caregiver resources? Read Caring and Coping: A Caregiver’s Guide To Parkinson’s Disease or call our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your caregiving questions.

While the leaves may be changing, your favorite podcast isn’t going anywhere! Cozy up, sit back and get ready to learn from our Parkinson’s disease (PD) experts with our top Substantial Matters: Life and Science of Parkinson’s podcast episodes:

1. Stall the Fall
   People with Parkinson’s are two times as likely to fall as other people their age. While healthcare professionals recognize the extent of the problem, there is still a lot to learn about why they happen and what can be done to prevent them.

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2. Depression in Parkinson’s 
   With depression as a common PD symptom, people with Parkinson’s should be conscious of their increased susceptibility to seasonal depression. Learn about the symptoms that accompany depression and how they may overlap with PD itself.  

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3. The Launch of PD GENEration
   Fall means school is in session. Learn about our latest study, PD GENEration: Mapping the Future of Parkinson’s Disease, and how it aims to help uncover key mechanisms responsible for PD and its progression.

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4. Seeking a Second Opinion After a Parkinson’s Diagnosis
   People are being newly diagnosed with Parkinson’s year-round. Learn more about seeking a second opinion from a movement disorders specialist. It may help to confirm the diagnosis and address any lingering unanswered questions.

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5. Addressing Sleep Discomfort with Parkinson’s
   The seasonal time change can lead to trouble sleeping for everyone, but people with PD experience sleep problems as a symptom. Changes in the brain can affect mood, thinking and the sleep-wake cycle. Find out how to address sleep discomfort.

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6. Palliative Care as Supportive Care in PD
   A change in temperature can bring muscle stiffness. As people with PD understand the benefits of palliative care, they are adding it to their regimen. Palliation means to ease the burden of the symptoms of a disease.

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7. Dance Therapy for PD
   A change of season can be the perfect time to try something new. Besides medication, people with Parkinson’s can benefit from many other forms of therapy, including physical, occupational, speech, music, art therapies, along with dance/movement therapy (DMT).

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If you liked what you heard, subscribe, rate and review the series on Apple podcasts or wherever you get your podcasts.

If you have any questions about the topics listed or want to leave feedback on this podcast or any other subject, you can do so here.

Regardless of where your loved one is on their Parkinson’s disease (PD) journey, you are the only one who can define “caregiving.” Especially following a new diagnosis, you might not feel like you are actually “giving” care. Similarly, your loved one might not see himself or herself as someone in need of care. But remember, care is not limited to physical tasks. Care can be emotional and spiritual as well as physical.

With resources created for care partners like our Caring and Coping educational book and Caregiver Summit videos, the Parkinson’s Foundation is here for caregivers. This November, for National Caregiving Month, we are asking our PD community to share their caregiving #KeyToPD. These care partners tell us their #Keys:

“I use a black container to put my husband's medications in when I get them ready for him to take. I used to use the clear or white plastic cups, but since most of his pills are white or light colored it was sometimes difficult for him to see them. Then I found some black sauce cups from an Italian restaurant and he can now see the pills much better.”
– Susan W.

“Being a caregiver is probably the most difficult job you’re ever going to have. The only way you can do it is to take care of yourself. You cannot say, ‘I don’t have time for me.’ The person you’re taking care of wants the best for you because you’re giving the best to them. Don’t be a martyr. It’s okay to take care of yourself.”
– Karen

“Planning. I am the live-in caregiver for my mom with PD.  I set aside a few hours one day a month to set up her pills in four, seven-day containers. That way in case something comes up, at least we have her pills ready. Also, I set alarm timers in both our phones for her pill times. Such a big help!”
– Megan F.

“A ‘couch cane.’ This allowed my mother more independence for a while longer. She could get herself up from her couch using the couch cane. Her walker was right next to it, so once she arose, she could use the walker to move to the bathroom on her own.”
– Jean B.

"When you go to the support groups, when you go to the meetings, you meet other people with the same problems, the same difficulties. It’s a wonderful way to communicate, understand what you’re up against and get advice from other people. As you get together you start talking, you start confiding, and you find that you get people that are very willing to listen. That’s very important to me.”
– Carolyn

“We used to carry 2-ounce slices of cheese and 1.92-ounce single-size candy bars. Whenever my wife's dyskinesia got bad, she would eat one or two slices of cheese and the protein would counteract the excessive Sinemet causing the dyskinesia. Whenever her feet froze to the pavement, she would pop a chocolate bar and that would unfreeze her.”
– George A.

 “Even as life changes, never stop striving to increase the qualities of your life together.”
– Judith

The Parkinson’s Foundation does not endorse products mentioned in this article.

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

• 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.

Learn more about Planning for the Unpredictable Path of Parkinson’s Caregiving at the 2020 Care Partner Summit. Register today at Parkinson.org/Summit.

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.

1. Mental Health in a Medical Setting

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.

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2. Recognizing Non-motor Symptoms in PD

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.

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3. A Western Perspective on PD: Understanding Complementary Medicine

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.

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4. Autonomic Problems

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.

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5. Talking to Children About Parkinson’s

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.

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6. The Benefits of Exercise for People with Parkinson’s

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.

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

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.

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Stephanie De Santiago, DNP, AGNP-C, has a doctorate in nursing (DNP) and is an adult-gerontology nurse practitioner at Banner Sun Health Research Institute, where she specializes in movement disorders and cognitive neurology. She is also a faculty associate for the Doctor of Nursing Practice program at Arizona State University. In this Q&A, Stephanie highlights the Nurse Navigation Program, a program she created at a community wellness center where nurses conduct discussion sessions with members and their care partners to address Parkinson’s disease (PD) management strategies.

How did the Nurse Faculty Award help further the Nurse Navigation Program?

The Parkinson’s Foundation award funded the addition of a Nurse Navigation Program to a Parkinson-specific community wellness center. The 12-week program ― available to wellness center members and their care partners ― was conducted by nurse navigators who held weekly 45-minute individual sessions to discuss critical PD management topics.

Each week, the 24 participants discussed topics such as motor and non-motor symptoms, medication management, hospital preparedness, fall prevention and more. Participants were encouraged to talk about their questions and concerns. The entire plan will soon be published in a scholarly journal.

What self-management tips can you recommend for someone with Parkinson’s?

1. Education. An important aspect of improving self-management of any disease. The more you understand the disease and what to expect, the more confident you will feel in your own ability to manage new symptoms or challenges.

2. Social support. Finding the support from others in a similar situation is a key factor in self-management of any chronic, progressive disease. Have a support system in place to problem-solve with and open up to without fear of judgement.
3. Exercise. People often feel powerless over PD which can decrease self-management ability. Daily exercise is not only great for the body, but it can also restore a sense of control over PD that may have been lost upon diagnosis.

What role do nurses play in community wellness for people with Parkinson’s?

Nurses play an important role in creating and sustaining an interdisciplinary approach to wellness for people with PD. Often there is little communication between members of the healthcare team and visits with movement disorder neurologist. Having a nurse readily available in the community wellness setting can be a great added resource for addressing any issues that come up between neurologist visits.

Nurses can trouble-shoot issues or communicate the situation to the appropriate healthcare team members, taking the burden off the already overwhelmed person with PD or care partner. Additionally, nurses can support patients and families by giving them valuable education and guiding them through the course of the disease. Ultimately, this can instill in people a sense of control over PD.

How did being an Edmond J. Safra Visiting Nurse Faculty Scholar influence this project?

My experience as an Edmond J. Safra Visiting Nurse Faculty Scholar was pivotal to the development and execution of this project. My Safra mentor, Edie Simpson, helped me formulate the premise of this project.

Preparing for the project, I learned about PD management, which helped me create nurse navigation program topics. Lastly, during the clinical experience I gained through the Safra program, I was able to work directly with patients and I met many great movement disorder specialists who I collaborated with not only during the project, but also now, professionally, as a nurse practitioner.

What changes did you see in participants after they completed the nurse navigation program?

Our results showed that after a year of progression of Parkinson’s resulting in an expected decline in quality of life, nurse navigation was able to improve self-efficacy for managing PD. This means that having a nurse navigator as an additional resource for people with PD can improve their confidence in their own ability to manage their PD despite the known progressive nature of the disease.

What is the “Self-efficacy for Managing Chronic Disease 6-item Scale”?

It is a simple scale for researchers to evaluate how much confidence a person has in their own ability to manage a chronic disease, such as Parkinson’s. It is useful to track changes over time. Other wellness centers and programs that evaluate self-efficacy changes can utilize this scale.

What Parkinson’s Foundation resources do you, your team or patients utilize?

Parkinson’s Foundation resources were crucial for this nurse navigation program. We used the Foundation fact sheets and handouts that are available online at Parkinson.org/Library for all of the patient education involved in the program. These are a great reference for people with PD because they are easy to read and understand and they cover almost any topic relating to PD.

Another extremely beneficial resource is the Aware in Care kit. These kits help keep people with PD prepare for possible hospitalization. Everyone with a PD diagnosis needs to have an Aware in Care kit that is appropriately packed in order to advocate for themselves in the hospital setting.

Learn more about the Edmond J. Safra Visiting Nurse Faculty Program.

Parkinson’s Champions participate in the Parkinson’s Foundation's community fundraising and endurance programs to raise funds and awareness for Parkinson’s disease (PD). Together, Parkinson’s Champions have hosted more than 150 annual community fundraisers across the country, run more than 15,000 miles and raised nearly $15 million to help make lives better for people living with Parkinson’s.

Who can become a Parkinson’s Champion?

• Anyone who takes a stand against Parkinson’s on behalf of themselves, a loved one, a friend or the community.
• Anyone who wants to raise funds and awareness to help improve care and advance Parkinson’s research towards a cure.

What does it mean to be a Parkinson’s Champion?

Champions take the lead in planning their own events or they participate in endurance races. From developing an annual craft show to running 26.2 miles in the TCS New York City Marathon, there is never a shortage of creative ways you can raise funds and awareness for Parkinson’s.

When you are ready to start your fundraising, we are here to support and guide you every step of the way!

How to become a Parkinson’s Champion:

1. Visit Parkinson.org/Champions. 
2. Select the category that interests you.
3. Follow the prompts and join an event or host your own!

Whether you have a race you want to join, an idea for your own or looking for some inspiration, you’ll find there are lots of avenues to get you started! Check out some of our favorite Parkinson’s Champions fundraisers below:

Create Your Own

For the past 11 years, Rachel has been challenging herself each summer to an epic adventure. From kayaking with the orca migration in the San Juan Islands, to biking 468 miles across Iowa, she is unstoppable! Every summer she tackles another challenge in honor of loved ones who have battled Parkinson's including her mom and grandfather.

Run for Parkinson’s

Jim is a life-long athlete — he skis, kayaks, bikes, hikes, boxes and more! He uses fitness and exercise to manage living with his Parkinson’s. In November 2019, Jim decided to conquer his first half marathon! He completed the Philadelphia Half Marathon, running with his daughter Jacqueline, and cheered by his wife and number one fan, Colette. Supported by his boxing group, friends and family, Jim raised more than $2,100. He continues to show incredible strength for himself and the 10 million people living with Parkinson’s worldwide. 

Donate Your Day

This year for Shana’s birthday, she wanted to help support her dad, currently battling Parkinson’s, as well as the PD community. In lieu of gifts, she created a Facebook Birthday Fundraiser, inviting friends and family to celebrate with her and donate to the Parkinson’s Foundation. She surpassed her goal, reaching $590!

No matter the occasion, race or do-it-yourself event, make a difference and become a Parkinson’s Champion! We’re here to help you develop your ideas and discover your perfect fundraising event. We can provide training and fundraising tips, fun perks along the way and support you need in order to reach your goal!

Become a Parkinson’s Champion and start your journey at Parkinson.org/Champions.