During the time of COVID-19 are people with Parkinson’s disease (PD) frequently experiencing anxiety? Are they using telehealth services to see their medical team? Are they exercising less or more often than before the pandemic? A Parkinson’s Foundation survey sought to answer these questions and more.

As the COVID-19 pandemic continues, little is known about its impact on the health and day-to-day activities of people with Parkinson’s. The Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence administered a survey to people with Parkinson’s to provide guidance to clinicians, policy makers and the PD community on how COVID-19 has transformed the lives of people with Parkinson’s and their access to care.

“People with Parkinson’s encounter numerous difficulties during normal times, especially when it comes to receiving proper PD medications when admitted to hospitals,” said Phil Gee, Parkinson's Foundation People with Parkinson’s Advisory Council Member. “I am grateful that the Parkinson’s Foundation initiated this COVID-19 survey to capture how people with Parkinson’s disease are coping during this pandemic.”

What did the survey measure?

This survey was administered between May 2020 and June 2020, receiving 1,342 completed responses from people with PD.

The survey asked people with PD about their:

• COVID-19 health status
• Emotional health
• Attitudes and practices related to changes in their routine since the pandemic began
• Telehealth use and satisfaction

Results

Almost all survey respondents came from within the U.S. Respondents live across states that experienced all levels of COVID-19 infection. The average age for respondents was 71, and the average time they have lived with Parkinson’s was seven years.

Diagnosed with COVID-19 and Parkinson’s

Only 17 (1.3%) survey respondents with PD reported a COVID-19 diagnosis by a health provider, five of which had a test to confirm the diagnosis. Within this small group, the most reported COVID-19 symptoms included: fatigue (71%), muscle pain (59%), body aches (59%), cough (63%), headache (47%) and shortness of breath (47%). COVID-19 symptoms lasted an average of 13.5 days.

Mood

More than half of respondents experienced nervousness or anxiety (67%), feeling down or depressed (51%), reduced interest or pleasure in doing things (54%) or sleep disturbances (66%) in the six weeks prior to the survey. Women were more likely to experience these symptoms than men, with the exception of experiencing a reduced interest or pleasure in doing things.

Respondents who reported experiencing frequent mood disruptions (anxiety, worry, depression, reduced interest, sleep disturbances or isolation) during the pandemic where asked to explain why.

• Anxiety was most often attributed to the fear of respondents getting infected (22%) and not knowing when COVID-19 would be resolved (13%).
• Depression was most often attributed to the inability to see or have physical contact with family and friends (16%) and having a history a depression unrelated to COVID-19 (12%).
• Loss of interest was most often attributed to not leaving the house (14%), having lost interest and apathy prior to COVID-19 (14%) and hopelessness or negative feelings about the future (13%).
• Sleep problems were attributed to problems not related to COVID-19 (36%) or worry related to COVID-19 (34%).

Physical and Social Activities

Most people with PD (85%) felt that their personal life had changed during the COVID-19 pandemic. Nearly half of people with Parkinson’s noticed some negative change in their Parkinson’s symptoms during the pandemic, but most people with PD said they had no negative change in their relationship with members of their household (65%) or the frequency of their communication with others (75%).

Almost half of People with Parkinson’s (45%) reported reduced hours of exercise, and 73% reported a reduction in activities outside of their home.  However, most respondents reported that activities were available online (82%), among whom 92% participated. The most common virtual sessions attended included exercise/wellness class (58%), support groups (32%), recreational classes (13%, religious services (46%), educational events (36%) and other (22%).

As a response to COVID-19, to help ease the challenges of physical distancing, the Parkinson’s Foundation launched PD Health @ Home ― an interactive series of virtual events designed for the Parkinson’s community. To date, more than 230,800 participants have participated in the virtual programming. Currently, PD Health hosts innovative weekly expert-led educational webinars, guided mindfulness sessions and tailored fitness videos. See all upcoming PD Health @ Home events.

Telehealth

This survey measured the use of telehealth services for people with PD during COVID-19. Telehealth use increased from 10% prior to the pandemic to 64% during the pandemic. Those with higher income and higher education were associated with telehealth use.

People used telehealth most often for a doctor’s appointment compared to other health therapies (mental health, physical therapy, occupational therapy and speech and language pathology). Among those who had utilized services, almost half (46%) preferred to continue using telehealth always or sometimes after the coronavirus outbreak had ended. However, having received support or instruction for telehealth and having a care partner, friend, or family member help with the telehealth visit increased the likelihood of using telehealth after the pandemic ended.

Key Takeaways

While better understanding the COVID-19 experiences of people with PD, looking at the bigger picture, survey results suggest several urgent unmet community needs.

The most notable shift within the PD community is the widespread use of telehealth. Telehealth use significantly increased 54% during the COVID-19 pandemic. However, results made it clear that the PD community urgently needs the expansion of telehealth services to include additional physical, occupational psychological and speech therapies, along with more support for how to use telehealth services and better reaching underserved (low income) populations.  

New strategies must be developed to make telemedicine more available to all prospective users. The COVID-19 pandemic has differentially impacted people from lower socioeconomic status and extending telemedicine services to economically disadvantaged populations may help reduce disparities.

Depression and anxiety symptoms were prevalent in people with PD during the pandemic. Household income and employment status were found to be important factors in predicting mood disturbances. Our data strongly suggest disparities across socioeconomic status in people with PD during the COVID-19 pandemic, with those of lower income far more affected by financial and employment uncertainties. Interestingly, factors such as location and local COVID-19 rates were not associated with mood symptoms. This suggests that communities deemed at lower risk of spread are not immune from the overwhelming influence of the COVID-19 pandemic on everyday life.

We must further explore the relationship between PD and COVID-19. Given the uncertainty of how long the hardship of COVID-19 and social distancing requirements may persist, we must identify ways to help the PD community throughout this period. Gathering accurate data on COVID-19 risk among people with PD and improving telemedicine by providing a wider range of services and making it more accessible is essential.

Learn More

• Parkinson.org/COVID19
• COVID-19 FAQs
• PD Hospitalization and Coronavirus Preparedness Fact Sheet
• Centers for Disease Control: Coronavirus 

Learn more about Parkinson’s and COVID-19 at Parkinson.org/COVID19 or by calling our Helpline at 1-800-4PD-INFO.

Did you know our books are now available on Kindle? Read all 12 of our books using your Kindle or Kindle app on your tablet. Every book is written and designed to make life a little easier for people with Parkinson’s disease (PD), caregivers and family members.

Check out all of our books available on Kindle now:

 These books in Spanish are also available on Kindle:

Download our Books on Kindle Now!

More Ways to Access Our Free Resources

Visit Parkinson.org/Library

All our books and fact sheets are always available at Parkinson.org/Library, where you can download them or read them on our site. Visit our PD Library now.

Call Our Helpline

Not sure where to begin? Talk to a Helpline specialist for personalized book and resource suggestions. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.

We are only able to provide Parkinson’s resources like these because of our generous supporters. Consider donating to the Parkinson’s Foundation today.

Whether you have Parkinson’s disease (PD), are a care partner or a loved one to someone with PD, your mental health should never be neglected. Just as we prioritize the importance of exercise and physical health, taking care of the mind is just as impactful to overall wellbeing.

In honor of National Mental Health month, we’ve highlighted the podcast episodes developed to show the importance of managing mental health, featuring experts in the Parkinson’s field.

Tune in to learn about the many ways we can navigate, address and prioritize mental health this month and beyond.

Managing Anxiety with PD

“Anxiety is one of the most common non-motor symptoms we see in Parkinson’s disease. Published estimates suggest that about 30% of people with PD will experience anxiety during the course of the medical condition.”

– Dr. Roseanne Dobkin

Featuring findings on anxiety in PD from the Parkinson’s Outcome Project this episode focuses on the anxiety that people with PD face. Tune in for a discussion with clinical psychologist Roseanne Dobkin, PhD, of Rutgers University about symptoms of anxiety and management strategies.

Download our fact sheet on Anxiety in PD for more information.

Depression in Parkinson's

 “I don’t think it’s a coincidence that a lot of the signs and symptoms of depression overlap with those of Parkinson’s disease. And that’s because of the pathways and circuitry that are responsible for controlling motor function are really interwoven with those that control emotions.” 

– Dr. Irene H. Richard

Depression in PD can be hard to recognize. In this episode, Irene H. Richard, MD, professor of neurology at the University of Rochester, talks about how symptoms of depression are often mistaken for common PD motor symptoms. Listen to the full podcast for more information on depression symptoms and symptom management in PD.

Download our fact sheets Combatting Depression and PD: A Non-Drug Treatment Option to learn more about depression in Parkinson’s disease.

Mental Health in a Medical Setting

“When you’re dealing with a chronic illness, you’re dealing with chronic and perpetual loss: your loss of identity, your grief about things you didn’t get to do, or that you did wrong…” 

– Kara Barton, MSW, LCSW

Mental health issues in PD are not always related to symptom management, but also relate to the feelings of loss associated to the diagnoses. Kara Barton, MSW, LCSW of the Keck Medical Center, refers to the struggles one might face while living with PD. This episode explores how to recognize mental health issues, where and when to access care and even how to access care if insurance doesn’t cover it.

How Mindfulness Techniques Impact the Nervous System: Part 1 & Part 2

“The most commonly used working definition of mindfulness… is really the awareness that emerges through paying attention, on purpose, in the present moment.”

– Angela M. Johnson, DACM, MSTOM, MPH, Lac, Dipl OM

In part one of this series, Dr. Jordan Staenberg, a certified yoga therapist at the Barrow Neurological Institute’s Muhammad Ali Parkinson Center, a Parkinson’s Foundation Center of Excellence, shares how mindfulness can be used to control the body’s emotional and physical state. She also discusses how mindfulness can help the stiffness that some people with Parkinson’s experience.

In part two of this series, we hear from Dr. Angela Johnson, a doctor of acupuncture and Chinese medicine at Rush University in Chicago. She shares mindfulness techniques that focus on being aware of external and internal senses, and how that can translate into relaxation and a mindful existence.

More Than a Movement Disorder: Addressing Mood and Coping

“Not only are there non-motor symptoms such as depression, anxiety and apathy that can occur in addition to sleep changes and cognitive changes, but you’re also coping with a chronic and progressive disorder… it all intermingles with the physiological aspect and can affect you emotionally.”

– Jessica Shurer, MSW, LCSW

Jessica Shurer, MSW, LCSW of the University of North Carolina, Chapel Hill, a Parkinson’s Foundation Center of Excellence breaks down the complexities of mood in PD. Not only can mood changes be a direct symptom of PD, but they can also be a symptom of the changes that the disease has on your life. These changes in mood are not exclusive to people with PD — their care partners and loved ones can also experience the feelings of loss and grief from losing the life they had original planned for. Jessica lays out some coping strategies for people with PD and care partners alike.

Download or order our book Mood: A Mind Guide to Parkinson’s Disease for more information on how Parkinson’s affects mood.

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

“For many years, the emphasis in Parkinson’s has been on its motor features —so it’s cardinal features of tremor, slowness, stiffness or changes with walking, but in more recent years in particular there’s been a shift in recognizing that patients can experience these non-motor symptoms and neuropsychiatric symptoms either individually or in combination with these different symptoms throughout the course of their Parkinson’s disease.”

– Jennifer Goldman, MD, MS

Many people with PD experience cognitive and behavioral challenges, some before motor symptoms present themselves and others after motor symptoms have begun. Regardless of the timeline of these non-motor symptoms, Dr. Jennifer Goldman, of Rush University Medical Center, a Parkinson’s Foundation Center of Excellence talks about the importance of treating them just as seriously as motor symptoms. Dr. Goldman has set up an Integrated Cognitive Behavioral Movement Disorder Program at Rush University for such situations.

Download or order our book, Cognition: A Mind Guide to Parkinson’s Disease, for more information on managing cognitive changes in PD.

Neuropsychological Evaluations for PD

“Typically, patients will come in with a very close family member or spouse, and I’ll just begin a general discussion by asking them if they have noticed any changes in their memory or their problem-solving ability or their speech… After I have a good understanding of what a person can do well and what is giving them trouble, I’ll ask about mood and anxiety. Certainly, we know that people with Parkinson’s have problems with a depressed mood and feeling anxious… It’s very important for us to understand if there are any issues going on with mood or anxiety, how might they be relating to what appears to be a problem with cognition.”

– Travis Turner, PhD

Dr. Travis Turner, a neuropsychologist at the Medical University of South Carolina, looks at how the brain influences one’s thinking, behavior and mood. In this episode, Dr. Turner breaks down the process of a neuropsychological evaluation and how it can help patients better manage their Parkinson’s.

Do You See What I See Hallucinations and Parkinson’s Disease

“Until recently, our only options were to reduce Parkinson’s medicines or try antipsychotic medicines that were our best alternatives but were imperfect in many ways. A new class of medicine has recently come along that… has no direct effect on dopamine…”

– Joseph Quinn, MD

Dr. Joseph Quinn, of the Oregon Health and Science University in Portland, a Parkinson’s Foundation Center of Excellence, discusses exciting advancements in Parkinson’s psychosis treatment and management. Dr. Quinn explains that until recently, medications used to treat auditory and visual hallucinations caused dramatic side effects, were burdensome to obtain and effected the dopamine in the brain. Newer medications, that have been approved for Parkinson’s use, do not target dopamine and still treat the auditory and visual hallucinations.

Hallucinations and Delusions in Parkinson’s

“Most people with Parkinson’s don’t develop hallucinations until a number of years into their course — 10 years, 12 years ore even more.”

– Martha Nance, MD

Hallucinations and delusions in Parkinson’s can vary in person to person — in fact, some people with Parkinson’s never experience these symptoms in their disease course. Dr. Martha Nance from the Struthers Parkinson’s Center, a Parkinson’s Foundation Center of Excellence, talks about the different ways hallucinations and delusions can manifest in Parkinson’s, as well as coping mechanisms for those who do experience them.

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

Parkinson’s disease (PD) progression, aging and medications can all sometimes impact mental well-being and memory. Identifying what’s behind thinking changes and prioritizing wellness can help you live optimally with Parkinson’s.

This article is based on the Parkinson’s Foundation Expert Briefing presentation Mental Well-being and Memory, with Gregory Pontone, MD, MHS, Director, Parkinson’s Neuropsychiatry Clinical Programs, Johns Hopkins University School of Medicine, a Parkinson’s Foundation Center of Excellence, and Lisa Cone, retired healthcare services executive, Parkinson’s Research Advocate and People with Parkinson's Council member.

Parkinson’s and Cognitive Changes

Parkinson’s disease progression can cause thinking, memory and mood changes for some people. It’s important to address cognitive changes with your PD doctor, especially time and place disorientation, poor judgment or forgetfulness. While these symptoms can indicate disease progression, they can be treated.  

Executive function changes – decreased ability to pay attention, multitask and solve problems – can be frequent in Parkinson’s disease. Take the time needed for tasks.

Memory can also be impacted, such as the ability to learn new information, store and retrieve it. Prompts or clues can be helpful to someone with Parkinson’s.

Some people with PD may have difficulty with familiar tasks, such as using a remote control or computer, organizing medications, or even finding the right word.

Tackle these changes by slowing down, minimizing stress and reducing distractions. Physical therapy can help maintain movement and occupational therapy can help you better navigate your environment.

Staying Well

Research has shown these strategies can also help keep your mind sharp:

• Exercise – especially aerobic – is critical to living well with PD and aging well, too. It’s been shown to improve cognition and minimize medical risk factors for dementia. Find an activity you love and do it regularly.
• Engage in mentally stimulating hobbies such as reading, puzzles, board games, playing an instrument or learning a new language. There's increasing evidence that video games can increase your processing speed, visual-spatial perception and reaction time, too.
• Connect through meaningful social interaction: going to dinner with friends, having people over or joining in community activities can improve memory and boost emotional well-being.
• Sleep well – a minimum of 6 hours nightly is important for attention and executive tasks. Create an 8-hour sleep opportunity window and make it habit to go to bed and wake up at the same time every day. If you nap, try to do it on a schedule. Sleep helps us stabilize memories, retain learning and allows our brains to perform essential glymphatic system operations – brain waste clearance critical to healthy cognitive function.

PD cognition concerns include sudden changes over hours, days, or weeks. These are usually not Parkinson’s related. Often due to a medical issue, acute mental status changes should be quickly addressed. Abrupt disorientation or confusion requires immediate medical attention. Causes can include infections, dehydration and medication side effects.

Other possible cognition challenges can include depression. While not always an emergency, depression can also cause a somewhat sudden change in people's cognitive ability.  

Neurogenic orthostatic hypotension – a condition where blood pressure drops sharply when someone stands up getting out of bed or rising from a chair – affects up to 70% of people who live with PD. Its side effects can include dizziness and difficulty thinking.

Other Causes of Cognitive Change

Aging, medications or other influences can cause mental and memory changes in PD, too.

As we age, we tend to maintain our long-term know-how. Vocabulary and general knowledge can remain stable, or even increase, throughout a person’s 70s. Visual perception of objects also remains stable and older people may be more accurate in judging distances than younger folks. Language remains stable, too, at least until age 70.

Aging, however, can impact:

• Focused and divided attention – such as multitasking.
• Working memory – remembering directions or instructions, for example.
• Multitasking abilities. 
• Processing speed.

Reversible cognitive impairment issues can impact thinking, also. They can include:

• Sleep disturbances, such as obstructive sleep apnea.
• Vitamin B12 deficiency, diagnosed through a simple blood test.
• Hypothyroidism, which can also be detected through blood tests.
• Depression, or severe depression, which can masquerade as dementia.

Medications can impact PD too. Parkinson’s results in the loss of dopamine-producing neurons in the brain. Anything that further interferes with dopamine production can worsen cognition and other symptoms. Parkinson’s is also associated with a lower level of the brain chemical acetylcholine, important to cognition. Anticholinergic medications – used in many therapies, including some asthma, antihistamine and antidepressant medications – block acetylcholine.

Other medications can interfere with cognition too, including:

• Some psychiatric and antipsychotic therapies.
• Certain bowel motility (movement) medications.

Work with your doctor, who can help pinpoint what’s behind any cognitive changes, recommend the best therapy and make medication changes or adjustments.

Discover More

• Cognition: A Mind Guide to Parkinson’s Disease
• More Than Movement: Addressing Cognitive and Behavioral Challenges in Caring for PD
• Do You See What I See Hallucinations and Parkinson’s Disease

The Parkinson's Foundation is here for you at every stage of your journey. Call our Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org for expert resources near you or answers to your questions.

The Parkinson's Foundation, in collaboration with the American College of Sports Medicine, created new Parkinson’s disease (PD) exercise recommendations to ensure that people with Parkinson’s are receiving safe and effective exercise programs and instruction. The guidelines are the result of a convening including 34 exercise professionals and thought leaders who met in March 2020 to help develop the framework for these guidelines.

The new exercise guidelines include recommended frequency, intensity, time, type, volume and progression of exercises that are safe and effective for people with Parkinson’s across four domains: aerobic activity, strength training, balance, agility and multitasking and stretching. Each recommendation is paired with specific types of activity and special safety considerations for people with PD.

It is recommended that people with PD see a physical therapist specializing in Parkinson’s for full functional evaluation and recommends exercise during ‘on’ periods, when taking medication. The guidelines also recommend 150 minutes of moderate to vigorous exercise per week for people with Parkinson’s. Other key recommendations include:

• Aerobic activity: 3 days a week for at least 30 minute per session of continuous or intermittent movement at moderate or vigorous intensity
• Strength training: 2-3 non-consecutive days per week of at least 30 minutes per session for 10-15 repos for major muscle groups; resistance, speed, or power focus
• Balance, agility and multitasking: 2-3 days per week with daily integration if possible
• Stretching: 2-3 days per week with daily stretching being most effective

Research from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s, suggests that people with PD do at least 2.5 hours of exercise a week for a better quality of life. The new Parkinson’s exercise guidelines aim to support the Parkinson’s community in staying active. The guidelines also provide an important framework for exercise professionals, who play a vital role in developing safe and effective programs to improve quality of life for the PD community. 

Learn more:

• Read the Parkinson’s Foundation exercise recommendations
• Read see the full Exercise Convening Summary Report
• Exercise professionals can review the professional version of these guidelines

In the same way no two people with Parkinson’s disease (PD) experience identical symptoms, there is no one-size-fits-all approach to caregiving. Regardless of where you are in you care partner path with your loved one ― from newly diagnosed to advanced stages ― finding your support system is invaluable.

We asked caregiver support group leaders what advice they would give care partners:

1. “Take care of yourself first and get involved in a support group.”
   – Jan B., Touchmark Caregiver Support Group Leader, Ridgefield, WA
2. "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 D., care partner, Team Spark Support Group Leader, Grand Rapids, MI
3. “Learn as much as you can about the disease and know that you are not alone. There is help out there all around you.”
   - Rae Marie E., care partner, Coaches Huddle Support Group Leader, Napa, CA

4. “Take care of yourself first so that you have energy to support your loved one. Take breaks, don't be too hard on yourself and don't feel guilty doing things that you enjoy.”
   – Lynda E., care partner, Brainerd Lakes Area Parkinson's Support Group Leader, Baxter, MN

5. “I would encourage someone to PLAN ahead but to LIVE in the moment. Each day is so unique, and each moment can be joyous or difficult. ALL emotions are valid ― even the ones commonly viewed as negative. They are each allowed to feel exactly as they need to in the moment.”
   – Celeste H., Houston Area Parkinson Society Caregiver Support Group Leader, Houston, TX

6. “I cared for my mother who had atypical PD. I would advise caregivers to be patient and make time for themselves. I would also encourage people to simply spend time with their loved ones. Spending time with them in the present moment is the greatest gift for them now, and something you will cherish after they are gone.”
   – Nicole H., former care partner, Pioneer Memorial Rest Home Support Group Leader, Mullen, NE

7. “Understand grief in children and how it can manifest itself. You aren't only caring for the person with Parkinson’s, but the people who surround that person as well, including yourself.”
   – Michelle F., young-onset care partner, KCPWP: Kids and Caregivers of People With Parkinson’s Support Group Leader, Mapleton, UT

8. “Join a support group.”
   – Pat F., care partner, Whine & Dine Caregivers Support Group Leader, Knoxville, TN

9. “Be involved in your partner’s doctor visits and medication. Take care of yourself!”
   – Elizabeth H., care partner, Fearington Parkinson Support Group Leader, Pittsboro, NC

10. “We have PD. You are in this together. Learn all you can about the disease. Take the LSVT BIG program as soon as possible. Learn about all the specific programs for PD for your partner to participate: Rock Steady Boxing, PWR, Let’s Ride, Dance for PD, other exercise.”
    – Paula H., care partner, Central Bucks Parkinson's Support Group Leader, Colmar, PA

11. “Keep active and be happy with what you are able to do rather than looking at what you can’t do.”
    – Myra H., former care partner, Cherry Hill Parkinson’s Support Group Leader, Willingboro, NJ

12. “Be patient, read all you can, talk to as many people as you can, share info.”
    - Mary Ellen P., care partner, Partners with Parkinsons Support Group Leader, Richmond, VA

13. “Be sure to open your mind up to joining support groups and sharing your journey. You will find you are not alone and can learn so much from hearing others story, find much needed support and your story will be relatable and helpful to others.”
    – Dawn R., Aloha Carepartner PD Support Group Leader, Marietta, GA

14. “Take it day by day and make sure you are carving out time for yourself on a regular basis or you will not have the energy/health for the long run.”
    – Kristen S., care partner, Northwest Ohio Caregiver Support Group Leader, Waterville, OH

15. “Live each moment. Not everyone's walk with PD is the same, but meaningful information, encouragement and strength can be found at support group meetings.”
    – Darla D., care partner, Western Oklahoma PD Support Group Leader, Weatherford, OK

16. “Attend as many doctors appointments with their partner as possible to learn about the disease, expectations for the future and care plans. Do not to Google anything!”
    – Kelly W., person with Parkinson’s and care partner to her father with PD, NorthShore Active Life PD Support Group Leader, Chicago, IL

17. “Patience, patience and a bit more patience .... with yourself and your person with Parkinson’s.  This was told to me someone living with PD for 20+ years. It has served my wife when she was living and myself very well.”
    – Jarrig V., former care partner, St Albans Parkinson's Outreach Program Leader, Swanton, VT

For more articles and resources devoted to care partners visit Parkinson.org/Caregivers.

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