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.

Watch Now
See Upcoming Mindfulness Monday Events

2. Stress and Aging

In this Mindfulness Monday, we discuss Parkinson’s and aging, stress management and what successful aging looks like. Event recorded April 13.

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See Upcoming Mindfulness Monday Events

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.

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See Upcoming Expert Briefing Tuesday Events

4. Mind, Mood & Motion

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.

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See Upcoming Expert Briefing Tuesday Events

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. 

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See Upcoming Wellness Wednesday Events

6. Ask the Expert: Parkinson’s & Hospitalization

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.

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See Upcoming Expert Briefings Tuesday Events

7. Staying Sane through Quarantine

In this Take Time Thursday, we discuss quarantine and social distancing challenges and ways to cope with this new normal. Event recorded April 20.

Watch Now
See Upcoming Take Time Thursday Events

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.

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See Upcoming Take Time Thursday Events

9. Fitness Friday: Posture

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.

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See Upcoming Fitness Fridays Events

10. Fitness Friday: Arms

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.

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See Upcoming Mindfulness Monday Events

VIEW ALL UPCOMING PD HEALTH @ HOME PROGRAMS HERE

Check out our weekly PD Health @ Home events now. Join us and catch up on previous virtual events.

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:

1. Make a scrapbook ― digital or print.

2. Watch old movies or catch up with PD educational videos on our YouTube channel ― watch videos that share tips from people in the PD community to caregiving to videos in Spanish.

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:

5. Read books. Visit our PD library and start with Cognition: A Mind Guide to Parkinson’s. Reading is a complex task that requires multiple parts of the brain to work together.

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.

“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.

“Your Questions: Mental Health” was a popular session held during the Parkinson’s Foundation 2020 Care Partner Summit | Cumbre Para Cuidadores, where care partners from all over the world asked their mental health questions, answered below.

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.

Watch the full recording of this session and all 2020 Care Partner Summit | Cumbre Para Cuidadores sessions now

Learn More

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):

• Watch: Mental Health and PD
• Listen: More Than a Movement Disorder: Addressing Mood &Coping and Mental Health in a Medical Setting
• Read: Mood: A Mind Guide to Parkinson's Disease

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:

1. Parkinson.org/COVID19

With the rise of COVID-19, the Parkinson’s Foundation has continuously published new articles where we address your top questions about Parkinson’s and COVID-19.

LEARN MORE

2. PD Health @ Home

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

Learn More

3. Virtual Moving Day

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.

SIGN UP NOW

4. PD Hospitalization and COVID-19 Fact Sheet

This fact sheet is full of crucial information for healthcare professionals in the case you are hospitalized during COVID-19.

DOWNLOAD NOW

5. Expert Briefing Webinars

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.

6. Podcast

Our podcast has not skipped a single episode in 2020. Join us as we interview a new PD expert every other week. Catch up with recent episodes: Managing Anxiety with PD and Personalized Medicine: The Voice of the Patient.

LISTEN NOW

7. Helpline 1-800-4PD-INFO

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.

CALL 1-800-4PD-INFO (473-4636) OR EMAIL HELPLINE@PARKINSON.ORG

8. Care Partner Summit Videos

Watch our 2020 Care Partner Summit at your convenience. Learn care partner tips from our panels covering key care partner topics including cognitive changes, mental health, self-care, practical planning and more. 

WATCH NOW

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?

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:

1. Turn to a family member or friend, support group member, counselor or spiritual leader for support with existential questions.
2. Seek ways to reconnect with the parts of your identity that are not tied to your diagnosis and symptoms.
3. 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.
4. 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.

For more information read Suicide and Parkinson’s.

For immediate assistance, contact the National Suicide Prevention Lifeline at 1-800-273-8255.

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.

Learn more

• Sexual Health and Parkinson’s
• Navigating Sexuality and Intimacy with PD

• Intimacy Issues and Parkinson’s Disease 101

Impulse Control Disorders

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.

Learn more

• Impulse Control
• New Study Examines Impulse Control, REM sleep and Dopamine

Caregiver Burnout

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.

Learn more

• Balancing Life and Caregiving
• What to Expect Emotionally

Palliative Care

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.

Learn more

• Launching A Modern Supportive Care Program Across U.S. Centers of Excellence
• Advanced PD and Palliative Care in the 21st Century
• Palliative and Hospice Care

End of Life Planning

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.

Learn more

• End of Life
• The Role of Hospice
• Getting Organized
• Caregiving: Preparing for Changes
• Planned Giving

Addressing Uncomfortable Topics with Your Doctor

Doctors usually wait until the end of an appointment to ask, “anything else?” How do you transition into your potentially uncomfortable topic? 

1. Remember that your doctor has heard it all. She/he wants to help you increase your quality of life.
2. 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.
3. 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.”
4. 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).

The Parkinson’s Foundation is dedicated to helping keep our Parkinson’s disease (PD) community safe and healthy during the COVID-19 pandemic that has disrupted so many of our daily routines. Access to gyms and exercise classes have been limited or entirely inaccessible. In-person gatherings are no longer encouraged. Even certain nutritious food items have been harder to find.

With all this in mind, we found it essential to expand our virtual programs. Through PD Health @ Home, we now offer more online health and wellness classes than ever before to ensure you have the resources you need to stay social and active through the foreseeable future.

We asked a few of our friends to share their top tips for managing PD during the pandemic. Here’s what they had to say:

Read how our Center of Excellence network and our community grant recipient promote healthy practices through art therapy.

If you have any questions about Parkinson’s and COVID-19 contact our Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

People living with young-onset Parkinson’s disease (YOPD) ― those diagnosed before age 50 ― are often managing careers, raising families or juggling both at the time of diagnosis. Finding time to take an early, active approach to YOPD care can seem daunting, but it is essential.

Discovering expert team-based health care to treat your Parkinson’s disease (PD) needs can slow Parkinson’s progression and decrease symptoms. This is especially true for people diagnosed with Young-Onset Parkinson’s, where early intervention benefits can be monumental. Younger brains have greater neuroplasticity ― the ability to grow and change in response to therapy.

This article is based on a Parkinson’s Foundation Expert Briefing “Not What I Planned, For Me or My Family” hosted by Allison Allen, MSW, LCSW, from Duke University Medical Center, a Parkinson’s Foundation Center of Excellence.

Young-Onset Parkinson’s Distinctions

About 100,000 of the nearly one million people living with Parkinson’s disease in the U.S. live with YOPD. While there are many motor and non-motor symptom similarities between PD and YOPD, there are also notable differences:

• Young-onset PD symptoms may progress slower.
• People living with YOPD can be more likely to experience involuntary movements and muscle tightening or cramping like dyskinesias and dystonia from common PD medicines, such as levodopa.
• There may be greater fluctuations between “on” and “off” times in YOPD.
• People with YOPD are more likely to carry genes linked to PD, though not all who carry such genes will develop the disease.
• Younger brains are capable of more easily learning or being trained or retrained after an illness or an injury.

Prioritize Early Collaborative Care

Though people with young-onset Parkinson’s are often in one of the busiest stages of life, prioritizing self-care is vital. It is also important to acknowledge your feelings surrounding the diagnosis and those of your family. Treat yourself with compassion.

A movement disorder specialist (a neurologist skilled in movement disorders) is central to living optimally with YOPD. Early collaborative care ― including social workers, physical and occupational therapists, and other health professionals ― also improves quality of life. Baseline assessments with multidisciplinary care specialists can help you determine healthcare goals, discover opportunities to stay well or identify areas for improvement.

Steps to Navigating YOPD After Diagnosis

While a diagnosis can be disruptive and unexpected, it doesn’t have to stop you from reaching your goals. When you are ready, think about your current family and career responsibilities, and set up a new long-term plan. Take one step at a time as you move toward achieving your priorities.

1. Build a Care Team: Work with your movement disorder specialists or neurologist to find the medication that is right for you. Your doctor can also help you determine which collaborative care specialists can help you further your goals. The Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) can recommend PD specialists in your area.

2. Talk to Family: Parkinson’s affects everyone in the family. You may be concerned that telling your children you have Parkinson’s will cause undue worry. Fostering an open, honest and age-appropriate conversation early can help children understand PD-related changes and feel secure.

3. Tell Your Employer When You are Ready. Many people with Young-Onset Parkinson’s are still working. You decide when, with whom and how to share your diagnosis.

4. Discover Community: Whether finding a support group, educational program or getting involved with a non-profit, there are many ways to connect with others living with PD. Consider joining the Parkinson’s Foundation online PD Conversations community, which features a young-onset PD discussion group.

5. Genetic Testing: People with YOPD who have children, or who are considering pregnancy, may wonder whether they carry a PD-related genetic mutation. The Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease national testing initiative offers free, confidential Parkinson’s-related genetic testing and counseling.

Planning

Parkinson’s disease impacts the whole family. While it may seem challenging, planning for the future can alleviate stress and foster security.

• Familiarize yourself with your disability and long-term care insurance policies.
• Take legal, financial and insurance planning into consideration.
• Complete health care power of attorney (HCPOA), advanced directive and family care plans.

These documents are critical to your care ― and that of your family ― in an emergency, and they can always be updated. 

Proactive Ways to Live Well

As important as it is to plan ahead, it is even more important to live well in the present. There are many steps you can take today to live your best life with Parkinson’s, start with these:

• Exercise has known neuroprotective benefits for people living with PD. Good for the mind and body, exercise should be a top priority.
• Stay ahead of symptoms by prioritizing PD-related healthcare visits early in your journey.
• Create a daily routine to realize goals.
• Allow your plans and goals to evolve with you.
• Grow your support system.

Explore the Parkinson’s Foundation 10 Helpful Young-Onset Parkinson’s Resources for more tips on living well with YOPD.