Imagine being diagnosed with an incurable neurological disease, but afraid to reveal your identity because you might be denied care or enrollment in a clinical trial. Unfortunately, for many within the LGBTQ+ population living with Parkinson’s disease (PD), this is a common reality. Chi-Ying Roy Lin, MD, MPH, is an incoming neurologist at Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence, who is advocating for the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning plus other sexual identities (LGBTQ+) Parkinson’s community through research.

In his previous role as a Parkinson's Foundation Movement Disorders Fellow at New York-Presbyterian Hospital/Columbia University Medical Center, Dr. Lin noticed some life-altering issues his patients were grappling with. “Movement disorders is one of the least researched areas in the LGBTQ+ neuroscience field,” Dr. Lin said. The LGBTQ+ Parkinson’s community is so under-researched, there are currently no population estimates.  

Dr. Lin’s published study titled, “Expanding Sexual and Gender Minority Research In Movement Disorders: More Than Awareness and Acceptance” identifies the most urgent LGBTQ+-related Parkinson’s issues. 

Estrogen and Testosterone in Parkinson’s Research 

Estrogen and testosterone can be given as medically necessary gender-affirming hormones to match transgender people’s gender identity. How does this relate to Parkinson’s? At this point, testosterone was not found to affect Parkinson’s symptoms. On the other hand, the influence of estrogen on Parkinson’s symptoms remains inconclusive. Some research has shown that estrogen can play a role in providing protective benefits, such as lessening certain symptoms. Researchers also found that women with PD could have more motor fluctuations than men, challenging the idea of estrogen’s “protective effect” In PD.

What does this mean for trans women with PD who take estrogen therapy? “It is possible that trans women with Parkinson’s who take estrogen may see better or worse motor symptoms, which requires future research to tell us,” Dr. Lin said. “This is particularly important, as counseling about the stopping or altering of gender-affirming hormone for a transgender person, if necessary, is drastically different from that for postmenopausal or contraception purpose, considering the medical necessity of gender-affirming hormone to maintain mental health and life quality.”

Worse Parkinson’s Care Access and Experience

“There is a disparity in care among those in the sexual and gender minorities,” Dr. Lin said. “I have had patients who are reluctant to reveal their identity because of fear they will get denied healthcare.”

“We need to create a safe environment in healthcare institutions to disclose sexual orientation and gender identity to better impact care and access to resources,” Dr. Lin wrote in his study. Sex is a biological identifier generally determined at birth (male or female), while gender is a person’s identity (man, woman, transgender, non-binary). 

Unfortunately, there is no LGBTQ+ patient guidance for multidisciplinary teams or care facilities. This coupled with ongoing discrimination and stigma against LGBTQ+ patients in healthcare, many people do not feel comfortable telling their doctor they are in a same-sex marriage or they identify as transgender. Seniors within the LGBTQ+ are particularly vulnerable. “It is not uncommon to see higher rates of violence or verbal abuse in nursing homes aimed at LGBTQ+ residents,” Dr. Lin said.

Identity Issues

Research, education, and advocacy can help address all these issues. The biggest obstacle right now for the LGBTQ+ Parkinson’s community is data. On a national level, most medical records list sex (female or male), but not gender (how a person identifies). “This continues to limit our research,” Dr. Lin said. 

Knowing if a patient with Parkinson’s identifies as LGBTQ+ may help doctors provide customized treatments for movement and mood disorders. For instance, LGBTQ+ members typically experience higher rates of social isolation, so do people with Parkinson’s. If someone is LGBTQ+ and has Parkinson’s, they would be extremely prone to experience graver isolation issues that can lead to the worsening of non-movement PD symptoms, like depression or anxiety. To provide better evidence-based care, Dr. Lin would like to answer, “How does identity affect access to research and care?”

Helping the LGBTQ+ Parkinson’s Community

Policy-making and advocacy would change the course of treatment and care for the LGBTQ+ Parkinson’s community. “There are currently no guidelines at national or state level to help provide better care for the LGBTQ+ community,” Dr. Lin said. “There is a critical need for literature and best practices.” 

Once created, guidelines would begin to address the disparity of care experienced by the LGBTQ+ community along with providing more tailored treatment options and help healthcare professionals follow best practices when treating LGBTQ+, Parkinson’s patients. For example, a nation-wide LGBTQ+ Parkinson’s guidelines can include affirming terminology for healthcare workers, an LGBTQ+-friendly and culturally competent provider list and proven ways to help the LGBTQ+ population feel more comfortable speaking to their care team. 

“Do not be afraid to reveal your identity and community, said Dr. Lin when asked for his advice to the underrepresented LGBTQ+ Parkinson’s community. “I feel people in the medical community are relatively open-minded. If you are uncomfortable with your current specialist, reach out to other providers who may be able to give LGBTQ+ customized care. Telemedicine allows most people to find the right provider now. Also, try to be active in participating in clinical research and trials. Don’t be afraid to reveal who you are.” 

Learn more about the Foundation’s commitment to diversity, equity and inclusion at Parkinson.org/DEI.

Grief for a Parkinson’s care partner does not begin when your loved one with Parkinson’s dies; it changes shape. To some degree, grief has been a familiar emotion from the point of your loved one’s diagnosis with Parkinson’s disease (PD) and as their disease progressed.

As a care partner you grieved alongside your loved one as they faced the difficult parts of PD, while also offering them encouragement, hope and support, where you could. You may have cheered your loved one on when they engaged in Parkinson’s exercise classes and support groups. You most likely helped your loved one advocate for their best care, build a PD care team, and manage symptoms and medication. You learned all you could about PD and searched for helpful resources. You worked through the challenging moments, looking for ways to bring small joys into your loved one’s life, to remind them of the little pleasures that make the hard days easier. You saw your loved one for who they were as a whole person, honoring their personhood and identity as being so much more than just their diagnosis.

During your loved one’s journey with Parkinson’s, you developed a whole new skillset: being a care partner in addition to being their significant other, child, sibling, parent or friend. Now that your loved one has passed away and you are navigating this new shape of grief, consider how your care partner skillset may help you at this tender time.

Here are eight ways to draw upon what you already know from caregiving:

1. Just as you probably encouraged your loved one to do, allow yourself to grieve. Try to maintain hope that you can make it through this.
    
2. Do what you can to treat your body kindly, as your body holds your grief and needs to heal, too.
    
3. Visit your primary care doctor for a check-up if you have not been able to tend to your own health lately.
    
4. Learn what you can about grief. See our resources below.
    
5. Think about who can be on your grief care team, which could be any combination of informal and formal supports that makes sense for you and may include: family, friends, neighbors, members of your spiritual, civic, or virtual communities, a bereavement counselor or social worker, other bereaved care partners or a support group.
    
6. When you feel ready, ask your grief care team to help you reconnect with life outside PD and to help you find the little pleasures that make these hard days easier.
    
7. Remember your loved one for who they were as a whole person. Acknowledge the gifts they brought into your life and ponder what values of theirs you want to bring with you into your future.
    
8. Be gentle and kind to yourself.

Every care partner had a unique relationship with their loved one with PD and offered them support in unique ways, which means every care partner will have a unique grief journey.

Parts of your care partner experience may have looked nothing like what you would have hoped for; trust that you did the best you could with the circumstances you were under. Try to avoid comparing your grief experience, as no two people grieve in the exact same way. If it feels right for you, stay active with the Parkinson’s community you have been part of, as other care partners can benefit from your expertise and lessons learned over the years. Otherwise, allow yourself to create distance from the Parkinson’s community if you need to.

Remember to take the advice from others that helps and leave behind what does not feel right to you. Give yourself the time and space to grieve at your own pace and in your own way.

Grief Resources

• Center for Loss: The Mourner's Bill of Rights
• National Institute on Aging: Mourning the Death of a Spouse
• CaringInfo: Coping With Grief and Loss
• What's Your Grief
• Care Partner Program: Ambiguous Loss

For more information or questions on grief and caregiving contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).

On August 11, 2014 actor and comedic genius Robin Williams passed away. Williams not only amplified awareness of the life-changing, prevalent disease known as Lewy Body Dementia, but his passing brought much-needed attention to the importance of mental health and the non-movement symptoms of depression and anxiety that often accompany a neurodegenerative disease.

A decade after his passing, what do we know about Lewy Body Dementia? How can we help people with a neurological disease experiencing suicidal thoughts?  

What is Lewy Body Dementia? 

Lewy Body Dementia (LBD), also known as Dementia with Lewy Bodies, is a progressive brain disorder that is diagnosed when cognitive decline is an early symptom. It can also be diagnosed when cognitive decline and motor symptoms begin and develop together. 

“Lewy Body Dementia is a common type of dementia — it is the second most common neurodegenerative dementia behind Alzheimer’s,” said Jennifer G. Goldman, MD, MS, section chief of Parkinson’s Disease and Movement Disorders at Shirley Ryan AbilityLab and a Professor in Physical Medicine and Rehabilitation and Neurology at Northwestern University Feinberg School of Medicine, a Parkinson’s Foundation Center of Excellence. “It is thought to affect 1.4 million people in the U.S. but is not widely recognized. With greater education and awareness, with Lewy Body Dementia including both Dementia with Lewy Body and Parkinson’s disease (PD) dementia, we can start to change that landscape.”

What is the difference between Lewy Body Dementia and Parkinson’s disease dementia?

Lewy Body Dementia is a term used for both Parkinson’s disease dementia and Lewy Body Dementia. They have some things in common, but their progression and treatment are different. 

While many people with Parkinson’s can experience cognitive changes, it is important to know that not everyone with Parkinson’s will develop dementia. “When we see more severe cognitive changes, particularly when they affect someone’s function or ability to act independently for activities of daily living, their work or hobbies, we think of that as being a form of dementia,” said Dr. Goldman.

“With Parkinson’s dementia, the motor symptoms precede the dementia. In dementia with Lewy Body the initial core symptom is dementia — cognitive changes are early, and motor features, if present, occur either after the onset of dementia or concurrently,” said Dr. Goldman. 

Fight For a Diagnosis

Before Robin Williams was diagnosed with Lewy Body Dementia, it was reported that he had been experiencing paranoia, confusion, insomnia, constipation and lacking the ability to smell. For many, the wide range of early symptoms — not all related to brain function — makes Lewy Body Dementia difficult to diagnose. 

Dr. Goldman urges patients to fight to find their diagnosis. “Continue to seek the answers and seek out a specialist to help identify the cause of the cognitive issues or type of dementia,” said Dr. Goldman. “The right doctor can change one’s management, prognosis, and eligibility for participating in research studies. It’s important to have the best understanding of the disease for the chance to have the best outcomes.”

Depression and Suicide

People with neurological conditions, like Parkinson’s, are at higher risk for suicide, according to a study published in in the Journal of the American Medical Association in February 2020. Depression can be a common symptom for both PD and LBD. 

People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach that includes a mental health professional. With a team in place, should depression or suicidal thoughts occur, you have an established relationship with a professional you trust. However, it is never too late to add a mental health professional to your care team. 

If you or your loved one is having thoughts of suicide:

• Find the resource that works for you: 24-hour suicide prevention hotlines can help, such as the National Suicide Prevention Lifeline at 1-800-273-8255.
• Seek professional help: Find a psychologist, therapist, counselor, or social worker you can trust and lean on. 
• Stay engaged: It can be easy for people with Parkinson’s to distance themselves. Try to connect with family and friends, schedule regular phone calls and seek out a support group or wellness class. 
• Build your support crew: call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (473-4636) for help finding a local or online support group. 

If you are a care partner or family member, learn about suicide warning signs and how you can help here.  

Ongoing Hope

There are treatment options for Lewy Body Dementia and Parkinson’s disease dementia. Healthcare teams are finding that the most effective approach is a combination of medication, physical and mental exercises, and incorporating a mental health professional as part of a care team. 

“There is quite a bit of research going on in Lewy Body Dementia,” said Dr. Goldman. “Researchers are trying to understand why it occurs, and whether there are differences between Parkinson’s disease dementia and Lewy Body despite the fact that they share many clinical symptoms and pathology. Ongoing research ranges from trying to predict or detect early changes in people who might go on to develop Lewy Body Dementia all the way to studying different treatments — from medications to newer trials starting to look at the roles of mental and physical exercises.”

More Resources

The Parkinson’s Foundation believes in empowering the Parkinson’s disease community through education. Learn more: 

• Podcast Episode 87: What is Lewy Body Dementia and How Does it Relate to Parkinson’s?
• Lewy Body Dementia Association
• Dementia with Lewy Bodies
• Caregiver Corner: Lewy What? Explaining Lewy Body Dementia
• Suicide and Parkinson’s

Contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) for more information about any of these topics and Parkinson’s. 

Restorative sleep is vital for optimal physical, mental and emotional health. Sleep disorders are one of the most disabling non-motor symptoms of Parkinson’s disease (PD), affecting more than 75 percent of people with PD.

A recently published study in the Journal of Parkinson’s disease, “Slow Wave Sleep and EEG Delta Spectral Power are Associated with Cognitive Function in Parkinson's Disease” (Wood et al., 2021), investigated the relationship between sleep and cognition.

There are four stages of sleep: one for rapid eye movement (REM) and three others for non-REM (NREM) sleep. Stage three, or slow wave sleep (SWS), is one of the three non-REM sleep stages, and is considered to be the deepest and the most restorative of the four stages of sleep. During SWS, the brain produces slow, deep waves, called delta waves, and can be measured using an electroencephalogram (EEG) in a medical office during a sleep study.

Cognitive issues affect about 30% of all people with PD. These symptoms can negatively impact everything from thinking and memory to problem-solving. People with PD may experience:

• Mild cognitive impairment: feelings of distraction or disorganization, along with finding it difficult to plan and accomplish tasks.
• Significant cognitive impairment: inability to perform common tasks such as making coffee, comprehending complex sentences and problems telling apart non-familiar faces. Often associated with caregiver distress, worse day-to-day function, diminished quality of life, poorer treatment outcomes, greater medical costs and increased mortality.

In this observational study, 32 people with PD were enrolled; 16 had high levels of deep sleep (more than 15.8% in SWS) and 16 had low levels (less than 15.8% in SWS). There were no significant differences between the groups in terms of age, disease duration, stage or medications taken known to affect sleep — although more women had high levels of deep sleep than men. All were evaluated with polysomnography (a type of sleep study that monitors sleep stages and cycles to identify if or when sleep patterns are disrupted). Sleep was measured in all participants with an actigraph (a wearable wristwatch-like device that records total sleep time, how long it takes to fully fall asleep, wakefulness after sleep onset, nocturnal awakening and quality of sleep).

To obtain a Composite Cognitive Score (CCS) — the measurement used in this study — the researchers analyzed a wide variety of neurocognitive tests, such as Attention/Working Memory Domain (letter-number sequencing), Hopkins Verbal Learning Test (total immediate recall and delayed recall), Spatial Recall Test (immediate and delayed), Processing Speed and Language. Additional tests were also used to measure estimated intellectual function and overall cognitive function.

Results

Participants with high amounts of slow wave sleep performed better in the following areas:

• Global cognition: the main measurement of overall cognitive function
• Executive function: brain functions that include attention or concentration, needed to multitask and solve problems
• Language: analyzes cognition decline through a neuropsychological test that asks participants to name as many similar items (such as animals) as possible in a minute
• Processing speed: helps show how the brain processes information. Participants are asked to name a color that is written using a different color

What do these results mean?

Sleep dysfunction is common in people with PD. While it is well-known that poor sleep worsens motor symptoms, this study demonstrates a significant relationship between slow wave sleep (SWS) and cognitive function: Those with higher SWS had better cognition than those with lower SWS.  These findings have far-reaching quality-of-life implications.

As suggested by the study authors: the percentage of SWS is potentially a modifiable protective factor. For example, there are prescription medications (such as sodium oxybate) that increase SWS in Parkinson’s, as well as non-pharmacologic interventions, such as exercise, which have been shown to increase SWS in both non-PD populations. Thus, it is imperative that sleep quality issues in the PD population garner more attention, including, but not limited to, a more robust exploration of possible interventions, and an improvement in disseminating currently known sleep improvement information.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about sleep by visiting the Parkinson’s Foundation resources below, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Parkinson's Disease, Sleep and Me
• Care Partner Program: The Role of Sleep
• Sleep Disorders
• New Study Examines Impulse Control, REM sleep and Dopamine

How can care partners help their loved one with Parkinson’s disease (PD) manage the interplay between the Parkinson’s symptoms of sleep, cognition and mood?

Parkinson’s experts Aleksandar Videnovic, MD, Joseph F. Quinn, MD, and Martha Anne Tudor, MEd, NCC, LAPC, highlight these symptoms and ways care partners can help manage them. For a deeper dive on each topic, register for Parkinson’s Foundation Care Partner Program: Building a Care Partnership, a series of self-paced online courses designed with care partners in mind featuring PD experts.

How does exercise impact sleep, cognition and mood?

It is widely known that exercise is important in managing Parkinson’s symptoms, but how does it help?

• Cognition: Exercise is the single most valuable intervention for promoting cognition. Aerobic exercise has been indicated to enhance protective functions in brain tissue.
• Sleep: With the help of regular exercise our bodies will be more receptive to quality sleep at night.
• Mood: Having a regular exercise regimen can also help combat the depression and anxiety that can be associated with Parkinson’s.

What Parkinson’s medications could impact decline in sleep, cognition or mood?

When there is an issue with sleep, cognition or mood, there are many areas that should be considered when finding a solution.

• Cognition: Cognitive changes (including hallucinations) can be brought on by certain PD medications. Discuss PD medications with a doctor if you or your loved one are experiencing cognitive changes.
• Sleep: Medications with alerting properties should be avoided in the afternoon or evening to increase sleep quality. Taking carbidopa/levodopa before bed to ensure less “off” time during the night can help. Talk to your doctor about taking an anti-depressant to help increase quality of sleep.
• Mood: Many PD medications have mood side effects that can be managed if discussed with your prescribing doctor.

Ultimately, talk to your doctor about any medication concerns you may have.

How does a lack of sleep over time impact cognition and mood?

Sleep is vital for the body and mind.

• Cognition: Without good, consolidated sleep our ability to store and make memories is impacted, as is our ability to perform mental tasks.
• Mood: When we do not get enough sleep, we can experience symptoms that look like depression, but can also be a sign that our bodies are not functioning their best. Once we get the person’s sleep back on track, we can find out what else we are dealing with.
• Sleep: During sleep, our bodies “clean up” our pathways. Without good sleep, our body is not properly getting rid of toxins and waste.

How can cognitive changes and lack of sleep impact driving for a person with PD?

Driving is an important discussion to have before a person with Parkinson’s is no longer able to drive.

• Cognition: Allied health professionals, such as occupational therapists, are trained to monitor the ability to perform cognitively complex tasks such as driving.
• Mood: Driving schools are an objective accessor that can take the stress off the care partner to make the ultimate decision.
• Sleep: Sleep and fatigue are important considerations when deciding if a person with PD is safe to drive. Does the person with PD experience fatigue or need frequent naps? Do they fall asleep without warning?

Remember, it can be incredibly difficult to have driving privileges taken away. Approach this conversation with care and consideration. Consider speaking to a social worker or your support group for advice on the topic.

Which mood, cognition or sleep challenges tend to be the most challenging for care partners?

Care partners often experience Parkinson’s right along with their loved one and have a unique experience and viewpoint. You are not alone in your struggles!

• Cognition: Care partners can often experience frustration with the apathy or impulsivity that people with PD might experience.
• Mood: It is common for care partners to experience anger and frustration, specifically when witnessing the changes and limitations in their loved one’s day-to-day abilities. It can be helpful for care partners to try to “see it for the disease” rather than “just try harder.”
• Sleep: If the person with PD and the care partner shares a bed when the person with PD is not getting quality sleep, chances are that the bed partner isn’t either!

When it comes to mood, cognition or sleep challenges, always talk to your loved one’s doctor and care team about your questions and concerns. You can work together to find solutions that may improve with quality of life.

This article is based on the 2021 Care Partner Summit | Cumbre Para Cuidadores session Sleep, Cognition and Mood. Watch all sessions from the 2021 Care Partner Summit | Cumbre Para Cuidadores now.

Register for the Parkinson’s Foundation Care Partner Program: Building a Care Partnership to explore classes created for care partners.

Grief is part of the human experience and a natural response to loss we experience. We meet grief regularly throughout our lives as we lose or say goodbye to what we hold dear, be it the people we loved, the things and routines in our life that were important to us, or the plans or hopes we dreamed one day would come true. Grief is also part of the Parkinson’s disease (PD) journey as you experience changes to your body and life that you did not plan for or expect.

However, grief resulting from Parkinson’s-related losses can sometimes go unrecognized; you or others may recognize a change but not consider it a loss you are allowed to grieve. When you can identify your grief, you can begin to honor it. When you honor your grief, you can better understand your emotions and needs, and begin to chart a path forward.

Below are six questions to ask yourself as you start to explore the honoring of your grief:

1. Do I feel pressured to ignore my losses or hold back my grief?

In an effort to live well with PD, some people think they should always focus on the positive and never on the disease-related losses they experience along the way or the grief they feel in response. Never creating space for your grief is like denying part of what makes you human. Give yourself permission to acknowledge and respect all the feelings that arise for you — the positive ones and the ones rooted in grief.

2. Am I comparing how I feel about my losses? Am I judging how I am coping?

A Parkinson’s-related change to your life can be a mere inconvenience for you, but that same change for someone else with PD can be experienced as a traumatic loss, and vice-versa. The changes you are forced to adapt to because of Parkinson’s will mean something unique to you, and your response to that change will be unique to you. Avoid comparing or judging yourself harshly about what you consider a loss or about the type of support you need to cope with it.

3. What is my primary style of grieving?

Some people grieve primarily through their emotions while others grieve primarily through their actions. Neither way is right or wrong and both have their benefits and drawbacks. Identifying your primary grieving style can help you better understand your approach to grief; it is what works for you. If you feel like your grief style is not working for you, it may help to seek extra support.

Here are two common ways people process their grief:

1. Intuitive Grieving: People who are primarily intuitive grievers work through grief by expressing their emotions and talking about their feelings.
    
2. Instrumental Grieving: People who are primarily instrumental grievers work through grief by asking questions, gathering information and completing tasks.

• Tip: Although you may have a primary style of grieving, most people fall along a continuum of these styles and not squarely within one or another. Some people think they are “doing grief wrong” if they are not crying enough or because they are “too emotional.” Again, there is no right or wrong way, but reach out for support if you feel stuck.

4. What does my body need to navigate this grief I’m feeling?

The feelings you experience from a PD-related loss don’t just sit in your heart or your head. Your body holds your grief, too. When you are struck by a new loss or are having a day when you are remembering several losses, consider what your body needs to get through this difficult time. Your body may need rest or exercise, hydration or a nutritious meal, a hug or massage, space or fresh air, patience or forgiveness.

5. Who can I turn to when I’m having a heavy grief day?

Sometimes grief is just too much for one person to navigate on their own, so it helps to know who you can call on for support. This might be a trusted family member, friend, or neighbor, someone on your PD care team like a social worker, counselor or support group, or members of your spiritual, civic, or virtual communities.

If you are navigating this hard day on your own, consider what you would tell your best friend if they were going through what you are experiencing, and act as your own best friend as you grieve. Think about how you have navigated difficult times in the past and whether you can apply any of that wisdom to your grief today. Identify how you can show your mind, body, and heart some compassion and tenderness. Reflect on whether a distraction from your grief might help right now or whether it might help to just cry.

For more grief resources please see our list at the end of this article.

6. Who or what helps me feel like the whole person that I am, despite my losses?

Having a chronic condition like PD can change the way you see yourself. Sometimes if PD-related losses accumulate, you might feel like important parts of your identity are also lost. Especially when you are grieving, it is important to remember that you remain a whole person and that you are still growing as a person, despite what has changed or been lost. Think about who or what in your life helps you feel like yourself, the whole you, and try to reconnect with whatever or whomever that is. If you are struggling with this, reach out to someone you trust or a member of your care team.

As you consider the idea of honoring your grief, remember that you are honoring yourself in the process. Share your story of how you honor your grief and yourself by submitting a My PD Story.

Grief resources that can help:

• Healthline: Disenfranchised Grief
• The Center for Loss and Life Transition: Embracing the Sadness of Grief
• What’s Your Grief
• Care Partner Grief: 8 Ways to Care for Yourself During Bereavement
• Care Partner Program: Ambiguous Loss

Find your nearest support group and more information on Parkinson’s by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636).

For more than a decade, the Parkinson’s Outcomes Project has captured the experiences of people with Parkinson’s disease (PD) and care partners on topics such as medications, treatment, exercise and lifestyle. How has this essential data helped make life better for people with Parkinson’s?

When researchers analyze the experiences of more than 13,000 people living with PD who seek treatment within the Parkinson’s Foundation global Centers of Excellence network, they can identify new and better ways to provide care and manage Parkinson’s. The goal of this study is to improve health outcomes and quality of life for people with Parkinson’s and care partners.

Parkinson’s Outcomes Project research has led to several findings that have already improved care within the PD community. Four primary landmark findings include:  

Exercise and Physical Therapy

Increasing physical activity to at least 2.5 hours a week can slow the decline in quality of life and help people with Parkinson’s live fuller lives. At the same time, referrals to physical therapy during the early stage of disease can help prevent hospitalization and falls. These findings led to the establishment of the Exercise Initiative, partnering with physical therapists and exercise professionals nationally.

Mental Health 

Depression and anxiety are the top factors impacting the overall health of people with Parkinson’s. This understanding has led to greater supports across Parkinson’s Foundation Centers of Excellence as well as a dedicated sub-study looking at mental health.

Hospital Care

People with Parkinson’s are hospitalized 1.5 times more often than their peers without Parkinson’s, and these visits bring with them a host of complications. These findings resulted in the Foundation’s Hospitalization Initiative to drive culture and policy change at the hospital administration level. Learn more about the Parkinson’s Foundation hospitalization kit now.

Caregiving

The cost of caregiving increases 180% from early to advanced stages of Parkinson’s, with female care partners predominantly (72%) carrying the weight of care. Acknowledging these factors and how to best provide day-to-day care will help improve the quality of life for those with Parkinson’s and their care partners.

The Next Generation of Parkinson’s Research

The impact of the Parkinson’s Outcomes Project continues to direct the work of the Parkinson’s Foundation. Next, the study will next focus on recruiting more participants who are part of traditionally underrepresented populations in clinical research. The study will work to better understand the PD experiences of people with Young-Onset Parkinson’s, newly diagnosed, early and late-stage disease progression and broader ethnic and racial diversity.  

The Foundation is underway with the next phase of the study, genetic testing offered through PD GENEration: Mapping the Future of Parkinson’s Disease. Genetic testing is a powerful tool that can help people learn more about their own disease, uncover biological pathways that cause Parkinson’s and can accelerate the development of improved treatments and care for all people with Parkinson’s. 

“Together, the Parkinson’s Outcomes Project and PD GENEration will help researchers understand why and how Parkinson’s develops,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer. “These initiatives may also answer questions that researchers may never have asked, providing hope and a vision towards a cure for PD.”

For the full update from the field, read Parkinson’s Outcome Project: Improving the lives of people living with Parkinson’s through research. In this publication, we highlight landmark findings, how this research guides Foundation priorities, what’s next for the study and more. Read it now. 

Download the PDF

Learn more about the Parkinson’s Outcomes Project at Parkinson.org/Outcomes.

What challenges are people with Parkinson’s disease (PD) facing and how can research help improve their lives? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, outlines top findings from the largest-ever clinical study of Parkinson’s disease, the Parkinson’s Outcomes Project. This study captures the experiences of people with Parkinson’s and their care partners over time, to identify new and better ways to provide care and manage Parkinson’s disease.

Watch the latest Parkinson’s disease videos on our YouTube channel.

Being a care partner can be a fulfilling but stressful role. Care partners may experience feelings of frustration and self-deprecation. Ignoring these experiences can lead to burnout, and eventually, compassion fatigue. You do not have to carry these concerns on your own; the Parkinson’s Foundation has resources to support you as a care partner.

What is compassion fatigue?

Compassion fatigue can be defined as the feelings of frustration and exhaustion when a care partner experiences self-blame and loss of energy due to caregiving (Mattioli et al., 2018). The care partner role can mean stressful and emotional situations.

As time passes, compassion fatigue may become a part of your experiences without proper mental health care. In some cases, compassion fatigue can result in giving up on the role of being a care partner.

What is the difference between compassion fatigue and care partner burnout?

Compassion fatigue is different from burnout. Care partner burnout can involve short-term moments of exhaustion that require self-care to be rejuvenated. Compassion fatigue is a long-term process that can result in major emotional distress if not treated and prevented. Compassion fatigue occurs if the care partner’s burnout is not addressed and treated.

What are signs of compassion fatigue?

Compassion fatigue can be shown through a variety of symptoms. Possible symptoms include:

• Irritability towards the person being cared for or other people in the care partner’s life. Frustration is built up within the care partner experience if there is no outlet to rest and process.
• Tiredness due to the lack of self-care. Being a care partner means giving up much of your time and energy to caring for someone. Not getting enough rest and relaxation time, can easily lead to exhaustion.
• Isolation from the person being cared for, friends and family. When a care partner is overwhelmed, they may feel the need to be alone and disconnected from those who love them.
• Insecurity with role and ability as a care partner. As compassion fatigue develops in a care partner, it is common to have feelings of failure and self-doubt.

Every care partner’s experience will look different, but intense feelings of exhaustion and frustration are common signs of compassion fatigue.

Preventing Compassion Fatigue

Compassion fatigue is completely preventable. It is necessary for a care partner to practice self-care. Self-care includes a range of activities, but the important aspects of self-care are rest and healthy boundaries.

Care partners should practice activities that are restful. These activities should be continual and built into a self-care plan. A self-care plan is a set of strategies and timelines for self-care. There needs to be healthy boundaries in every relationship within the care partner’s life. It is also important for care partners to develop coping skills. Coping skills are created through intentional self-care. Taking the time to work through emotions and advocate for your mental health can prevent compassion fatigue and create strong, healthy relationships.

Self-Care for Care Partners

Self-care is an important practice for every person’s life. As a care partner, it is vital for you to set aside time for self-care activities. Self-care should be personalized, so find what works for you. Try to incorporate these different types of self-care into your plan:

• Physical self-care: this could include sleep and exercise.
• Emotional self-care: reflect on your emotions by talking to a mental health professional or journaling.
• Intellectual self-care: find ways to stimulate your brain through reading or music.
• Spiritual self-care: do things that feel spiritual to you, such as practicing gratitude or prayer.
• Adventurous self-care: try new things outside of your normal routine.
• Sensory self-care: indulge in your five senses by being mindful of your surroundings.

Resources for You

You are not alone in your role as a care partner to someone with Parkinson’s disease. The Parkinson’s Foundation has many resources available to you:

• Care Partner Courses. Self-paced online courses designed with care partners in mind. We have courses on Staying Healthy as a Care Partner and What is Care Giver Burnout?
• PD Conversations. Ask experts your Parkinson’s questions and be part of a network of support. Check out our Caregiver discission group.
• In Your Area. Find resources local to your community.
• PD Library. There are factsheets, videos and books on the most important Parkinson’s topics.

The Parkinson’s Foundation wants to remind you as a care partner, you are enough. If you are experiencing compassion fatigue or burnout, it is important to take time to rest and practice self-care. Check out one of our many care partner resources to support you in your caregiving journey.

For answers to your caregiving questions or support, call our Helpline at 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.

Resource

Mattioli, D., Walters, L., & Cannon, E. J. (2018). Focusing on the Caregiver: Compassion Fatigue Awareness and Understanding. MedSurg Nursing, 27(5), 323–328.

Unsure of what to gift your loved one with Parkinson’s disease (PD) for an upcoming holiday or birthday? Parkinson’s is a disease that progresses over time and brings with it a myriad of symptoms —and sometimes, a small gift can help make life a little easier. 

The below products are not endorsed by the Parkinson’s Foundation.

1. For the one who wants to get moving

Research shows that regular exercise can help ease Parkinson’s symptoms. Help energize your loved one to workout. Light weights can bring the gym to their living room, while a portable bike pedal exerciser can help get circulation going, from any chair. For on-demand work outs, explore our Fitness Friday videos.

2. For the one who needs to simplify self-care

Maintaining dental health is important for people with Parkinson’s, as symptoms can complicate dental care. An electric toothbrush or toothpaste dispenser helps with these daily dental tasks. Simplify other self-care tasks with an electric razor for men and women.

3. For the one who loves seeing their loved ones

Seeing your loved one in-person can be the best gift of all! In between visits, help them go hands-free with a smart video calling device, like the Amazon Echo Show. These devices often have the added benefit of a voice-activated calendar and alarms. Help your loved one set up other smart features, like connecting it to lamps and appliances through smart plugs.

4. For the one who needs help trying new things

Forty percent of people with PD utilize complementary therapies to find relief from symptoms. Consider gifting an experience your loved one can try nearby, such as a Tai Chi or yoga class, acupuncture session or a massage.

5. For the one who loves good food

It is common for people with PD to experience weight changes: some lose weight while others gain. A failsafe gift for any foodie can be to schedule a delicious meal delivery from a local restaurant or buy their groceries for the week using a delivery service like Instacart or AmazonFresh.

6. For the one in need of caffeine and hydration

Gift the incredibly trendy Stanley tumbler (break-resistant) or help them up their coffee accessories game. If tea is more their speed, consider an electric kettle with an auto-shut off feature. Research shows that drinking caffeine in moderation can benefit the motor symptoms of PD.

7. For the one with body aches

This remote-operated leg massager will bring some built-in relaxation to your loved one with PD. Hand-held massagers and a heating pad can help ease the muscle stiffness and pain that are commonly associated with PD.

8. For the one with style

Parkinson’s can sometimes interfere with activities of daily living — like getting dressed. Stylish slip-on shoes can simplify the challenge of wearing sturdy shoes with grip for men or women with PD. A long-handled shoe horn can also help.

9. For the one in need of quality sleep

Aromatherapy shower steamers and bath bombs can help promote relaxation before bed. Silk sheets and satin pajamas are not only comfortable but have the added bonus of helping them slide out of bed a little easier.

10. For the one who wants to eat healthier

Research shows that the Mediterranean diet can lower the risk of cognitive impairment for everyone. A Mediterranean diet cookbook or a meal planner magnetic pad can help your loved one stay organized and try new recipes. Keep in mind that mealtime can also look different. This weighted dishware set can help. Learn more about PD and nutrition.

11. For the TV buff

Make television watching and snacking more comfortable with an adjustable TV tray. For the one who has seen it all, gift a monthly subscription for a streaming service your loved one hasn't tried yet.

12. For the one who loves reliving memories

A custom photo book has limitless possibilities and can be a great conversation piece. Pick a theme with sentimental value — previous family vacations, a dedicated page to each person in the family, favorite locations. Viewing photos from the past can help with memory.

13. For the wordsmith

Writing may get more difficult as PD progresses. An easy-to-grip pen can help while a gratitude journal can help them keep track of all the things that bring joy.

14. For the one who loves the outdoors

If your loved one can’t wait for spring or summer activities, a new sunhat can help keep them protected from the sun. Trekking poles (or walking sticks) can also help them enjoy outdoor walks and hikes.

15. For the one who needs to treat themselves

Self-care is essential for people with Parkinson's and care partners. A light therapy lamp can help ease or prevent seasonal depression, while a spa set of lotions can help address skin changes, another PD symptom. Look for products that address oily, itchy, dry and inflamed skin ― all symptoms of PD.

16. For the one who likes to exercise the brain

Puzzle books can help mix up the day and promote mental stimulation. While reading books can help people with PD retain mental clarity.

17. For the one who loves to tell stories

Help your loved one tell their story. Every week, Storyworth books sends you (or your loved one) a prompt. At the end of the year, the answers are bound into a book. For a shared experience, schedule a weekly call with your loved one and answer the prompt together.

18. For the one who loves to cook or bake

Simplify kitchen tasks with accessories that can save time. Explore adaptive cutting boards, a batter dispenser, vegetable chopper or electric jar opener.

19. For the one who is always reading

Audiobooks can make reading hands-free and an enjoyable activity for walks or long drives. Gift an Audible membership for one to 12 months. Alternatively, ebook readers, such as a Kindle, can also make reading a little easier for people with Parkinson’s. Help set the Kindle up with large text and other personalized settings.

20. For the one who has it all

Never underestimate the gift of your company. Invite your loved one to a movie, park or just help them around the home. Looking for something you can do together? Check out local experiences, such as museums or a PD exercise class. Find your nearest Parkinson’s Foundation chapter for classes near you.

Still not sure what to get your loved one? Consider making a Tribute Gift to the Parkinson’s Foundation in their name. As part of your donation, you can send an eCard or print a card.