Tips for Daily Living

Cover, Control, Contain: Navigating the Holidays with Parkinson’s

Family enjoying Thanksgiving together

With climbing COVID-19 numbers, the Centers for Disease Control and Prevention (CDC) recommends not traveling for the holidays. If you are planning to visit members of your family this holiday season, we have information and planning tips to help get you through the rest of this year.

On November 12, Michael S. Okun, MD, Parkinson’s Foundation National Medical Director, led our Facebook Live event “Navigating Parkinson’s and COVID-19.” Dr. Okun highlighted tips for the PD community to survive and to thrive during the 2020 holiday season.

Question: What advice would you give for those living with chronic conditions like Parkinson's disease (PD) this holiday season, especially when holding family gatherings?

Dr. Okun: Follow the three C’s all holiday season, and well into 2021:

  • Cover. Always wear a two- or three-ply face mask (like a surgical mask) when you are around others or in public. Don’t wear bandanas or gaiter face coverings.
  • Control. Control your environment. If possible, attend holiday gatherings or family events outdoors. It is safer to not be in close proximity to others indoors.
  • Contain. Keep your gatherings to 10 people or less. Walk or sit six feet or more away to eat or drink. Don’t take your mask off to eat or drink around people who don’t live with you (in your house).

Should I get the flu shot?

COVID-19 or not, get the flu shot. Our hospital and other hospitals are seeing people who can get COVID-19 and the flu together, a potentially deadly combination. I advise every patient to take the flu shot.

What unique considerations should people with PD and their families keep in mind to celebrate the holidays?

First, follow the 3 Cs. Next, if you travel, try to travel by car. Getting on airplanes can add another layer of risk. If you want to be extra cautious, wait out the holidays this year. Keep in mind that research already shows that people with chronic diseases (like Parkinson’s and diabetes) have a hard time recovering from COVID-19. It is important that you treat this virus with gravity and seriousness.

Should I travel by plane?

COVID-19 numbers are high right now and air travel may not be the best idea. If you plan to travel by plane, remember that planes have closed environments. Keep your mask on, consider wearing two masks (or a N95 mask), try to keep a distance from others and wear protective eye wear (not just glasses).

Does cold weather make Parkinson’s symptoms worse?

Stress, anxiety, sleep deprivation and cold weather can all make PD symptoms worse. Stay warm. Keep in mind that when you are bundled up and wearing your mask, sometimes you can’t see your feet, which can make people with balance issues prone to falling. Curbs, uneven or icy surfaces can be particularly tricky for people with Parkinson’s, so when outdoors hold on to your loved one to stabilize yourself.

I have Type I diabetes and Parkinson’s. Anything I should keep in mind for the holidays?

Having both makes it more difficult to recover from COVID-19. If you have either one, and especially both, be extra careful when thinking of attending holiday gatherings. Consider wearing a double mask (or N95) and follow the three C’s. The CDC has asked that the public not buy up all the N95 masks unless someone is at a high risk.  If you buy a N95 mask you should contact your local hospital to do a fitting and see if it is appropriate for the contours of your face.

Can I catch COVID-19 through a holiday meal?

You can safely eat food that others have cooked. If you eat takeout food, we are not seeing a lot of hard evidence that food packages can transmit the virus to you. Nonetheless, to be safe, before serving food, place it on another plate or in another bowl and wash your hands.

What should I do if I have an immune deficiency syndrome and also have Parkinson’s?

Talk to your doctors, but in this scenario, you may want to take the extra precaution of staying home this holiday season. Your doctor can outline a risk benefit ratio for you.

Do you have any tips for managing depression, demoralization and loneliness during the holidays?

People with Parkinson’s are already apt to experience higher levels of stress, anxiety, depression and demoralization. The holidays can exacerbate any of these Parkinson’s related symptoms. Additionally, more than half of caregivers experience caregiver strain. These are all issues we need to do a better job addressing. Here are some tips:

  • Talk to your doctor. You may have medication options available that can help. 
  • Stay engaged. The Parkinson’s Foundation PD Health @ Home program has a steady stream of new weekly events you can attend online.
  • Try new things. There are a lot of guided meditation and stress management programs out there. There is even guided meditation through a virtual reality machine called an Oculus.
  • Virtually volunteer. If you do not plan on leaving the house, look for ways you can volunteer virtually through local PD programs or the Parkinson’s Foundation. Learn more at Parkinson.org/Volunteer.

Are you excited about the COVID-19 vaccine?

If one of the vaccines reported in the news is 90-95% effective, then it will be more effective than we hoped. We need the data and we need more details before making a judgement. There will be a few types of vaccines and we are excited to see the data, which will soon be publicly available. The top scientists in the world will be looking at this data. We want to observe how certain age groups and people with chronic illnesses do after receiving the vaccine. The real takeaway is, if your doctor or a medical expert is taking the vaccine, then you should probably follow. With or without a vaccine, the most important thing you can do is wear a mask.

Remember that wearing a mask throughout the entire holiday season and beyond will be necessary to get us out of this pandemic as fast as possible (with or without a vaccine). Research has already shown us that if everyone wears a mask, we can protect one another and minimize the spread (e.g. examples from other countries). Stay safe and healthy this holiday season.

For Parkinson’s information, references to online programs and local resources, along with support, please contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).

My PD Story

volunteers blog charles harris
Health Professionals

Charles Harris

As a professional health liaison, Charles Harris has dedicated his career to helping people navigate complex health challenges like Parkinson’s disease (PD). He has recently channeled his devotion to patient-and-family-centered care into his new roles as Advisory Board member for the Parkinson’s Foundation and Mid-Atlantic campaign chair for the Reach Further campaign.

Throughout his career, Charles has worked closely with people diagnosed with Parkinson’s and their family members. He is often the first person to talk with patients and families about care needs and helps connect them with support resources.

“I have encouraged people with Parkinson’s to reach out to the Parkinson’s Foundation for support, for information, education, and simply to know that they are not alone,” said Charles. “I also encourage care partners to make proactive steps, educate themselves and obtain as much support as they can.”

Driven by his passion to help those facing Parkinson’s, Charles will work to inspire his community to support Reach Further’s ambitious goals: raising an additional $30 million over four years to accelerate Parkinson’s research and increase access to healthcare and quality-of-life programs.

“My background educationally is in psychology, so I’ve always been a people person, and have wanted to help people feel empowered to make decisions that are best for them and for their loved ones when it comes to health care and support,” said Charles. “I am so glad to have the opportunity to bring this experience to my role with the Parkinson’s Foundation and Reach Further.”

Charles, a resident of Washington, D.C., is also passionate about healthcare access, especially in underserved regions and communities. In his city, he describes having a “wealth of healthcare access.”

Charles said, “I come from a family that educated me on the importance of good health care. Not everyone has that privilege. Just 40 to 60 miles from D.C., like across the border in the Appalachian regions of West Virginia, you are in a health care desert.”

Reach Further aims to address disparities in attaining top-quality neurocognitive care and support for people with Parkinson’s. At present, the delivery of comprehensive Parkinson’s resources in the United States is not easily accessible outside of the Parkinson’s Foundation Global Care Network. The campaign aspires to provide better, more attainable care to the one million Americans living with Parkinson’s. It will expand the Global Care Network by 25 percent to areas where little or no comprehensive care currently exists, with a particular emphasis on underserved and hard-to-reach areas.

“PD is not an easy diagnosis to hear or to maneuver, but it is maneuverable,” said Charles. “I want people with PD and their loved ones to know that the Parkinson’s Foundation is here for everyone on this journey.”

Help Us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach or call the Helpline at 1-800-4PD-INFO (73-4636).

My PD Story

Hannah Wolf with group of doctors
Family Members

Hanah Wolf

Hanah and her grandmother, Pamela, live in Williamsport, IN. Hanah is 17 and will be starting her Senior year of high school, and she recently donated $2,111 to the Indiana University School of Medicine, a Parkinson’s Foundation Center of Excellence as a thank you for how they have changed her grandmother’s life since her Parkinson’s disease (PD) diagnosis.

“I’ve always wanted to do something for my grandma because she always supports me,” Hanah said. “Originally, I was going to do something small, but the more research I did, the more excited I got. I realized how much Parkinson’s research still needs to be done.”

Hanah launched a fundraising campaign with the support of her school. She raised money through hosting 50/50 raffles at basketball and football games. “Some people even donated their raffle winnings back to the PD fundraiser,” Hanah said.

She also hosted pocket change collections at school and at school events. At her local elementary school she hosted a “Penny War.” Each grade was given two buckets: one for pennies and one for anything larger. Pennies counted as positive and anything larger counted as negative. So, when you add pennies to your grade’s bucket it is a positive. When another grade looks like they are gaining a lead, you add larger coins/dollars to make them go negative.

She also was interviewed several times by George Hardibeck, a local radio show host for the rival high school’s games. He donated $100 to her fundraiser every interview.

While she was managing her intricate fundraiser, she also collected 300 shoes to donate to a domestic violence shelter, and collected 2,692 medicine bottles to donate them to Mathew 25 Ministries, an organization that sends pill bottles to other countries who do not have the resources to make pill bottles and reuses them.

When asked what prompted her interest in raising money for Parkinson’s disease, she said, “Personally, the disease really changed my grandma before she underwent deep brain stimulation (DBS) surgery. She couldn’t drive or come watch me cheer ― she was a different person. After the surgery, she was able to be herself again. I wanted to do something to honor her and make her happy.”

When asked why Indiana University School of Medicine, where her grandmother receives PD treatment, she said, “I want the money to go to research. I like knowing it is going to a place that has helped my grandmother so much on a personal basis.”

Hanah hopes to attend Indiana University and study chemistry.

Fundraise on your own terms.
Begin a fundraising campaign at Parkinson.org/Champions

My PD Story

Gary Smith golfing
People with PD

Gary Smith

Playing a round of golf at St. Andrew’s in Scotland is a bucket-list pilgrimage for many avid players. It is literally the “Home of Golf,” with more than 600 years of rich history, including hosting the prestigious British Open 29 times.

I’m not a great golfer, but I love the game. So when I had a chance to play at St. Andrew’s in early 2015, it was a dream come true. But it turned out to be much more than that.

When I went to bed at the hotel that night, I was tired, but I also noticed something else: I didn’t ache. And I felt relatively loose. Those were strange feelings for a guy who had been battling Parkinson’s disease (PD) for almost a decade.

At first, I thought it might just be adrenaline — riding the high of fulfilling a longtime wish. But when I returned to Chicago, I played another round of 18, and I could tell that my right arm and right foot were looser. My right side is my weak side, so I thought that was interesting. I played again, and had the same feeling. I played eight to ten more times over the next few weeks, and I could tell something was definitely happening.

I called my neurologist, Dr. Martha McGraw at Northwestern Hospital, a Parkinson’s Foundation Center of Excellence, and told her the story. I told her my walking was back to normal, that I could run, and that my right leg wasn’t dragging anymore. She was skeptical, but told me to make an appointment, so I did. When I went in, she told me to walk down the hall. When I turned around to walk back, she was in shock. She couldn’t believe it. She even said, “Oh my, it looks like you’re pre-Parkinson’s.”

Dr. McGraw couldn’t explain it, and neither could I. I thought I had been getting enough exercise all along. Since my 2008 diagnosis, I had tried everything. Aerobics. Stretching. Tai Chi. Hip-hop dancing. Triathlons. Yoga. Boxing. I even ran a marathon! I believe that these things, plus my medication, might have slowed down my Parkinson’s, but none helped all that much. And certainly none took me back to how I was feeling before I was diagnosed.

But then came golf. And even better, I discovered Topgolf, which is kind of a jazzed-up driving range, combining golf with food and fun, sports and socializing. I started playing at my local Topgolf a few times a week, and when their corporate headquarters heard my story, they gave me a platinum membership and a custom-designed set of clubs.

I play Topgolf five to seven times a week, hitting about 140 balls each time. I also play a regular 18 holes a couple times a week.

I’m amazed at how I feel now, not just physically, but emotionally and spiritually too. When I was first diagnosed, I was angry with God. After I railed at him for a while, I felt like he was saying, “Are you done now? I’ve got plans for you. I’ve got your back.”

Now, I wake up every day and walk by faith, not by sight. I just take it one day at a time. But overall, I don’t feel like I even have Parkinson’s anymore, even though I know I do. My strength is back, my voice is strong, I don’t choke on things anymore, I can type again, and I have more energy than I’ve had in years. I’m 62, but I feel like I’m in my 40s again. I definitely have a new lease on life.

I feel like golf has been the perfect par-scription for me. Pun intended.

In honor of Gary Smith and World Parkinson’s Day, Topgolf donated $10,000 to the Parkinson’s Foundation in 2017. Learn more about Topgolf at www.topgolf.com.

My PD Story

Susan Brister and family
People with PD

Susan Brister

“There is a large population of women out there, as well as people with Young-Onset Parkinson’s disease (YOPD), who are still of working age, that need our help,” said Susan Brister, Parkinson’s advocate from Lilburn, GA. “The Parkinson’s Foundation has found a niche in reaching these communities to offer the resources they need.”

Susan lives with YOPD and hopes that her appearance in “Better Lives. Together .” the Parkinson’s Foundation public service announcement (PSA) will spread awareness about Parkinson’s disease (PD), especially among underrepresented groups.

In the 16 years since Susan was diagnosed, she has learned to adapt to the challenges of Parkinson’s with grace and a healthy dose of humor.

“Parkinson’s taught me to take life a little less seriously, and that living with a disease with no cure doesn't have to be as bad as it sounds,” said Susan. “Parkinson's will change your trajectory in life but doesn't have to define who you are.”

When Susan was 34, working in a stressful corporate job with a newborn and a two-year-old at home, she noticed that something was not right with her fine motor skills.

“I remember ordering wide grip pens from my office’s supply company because my writing has gotten so bad and so small,” said Susan. “I had my second child in 2004, and when it came time to write thank you cards for baby shower gifts, I couldn't do it. My writing had become illegible. I had to hire a couple of high school girls to write the cards for me.”

Shortly after that, Susan noted that she was struggling to perform simple tasks like scrambling eggs or brushing her teeth. She decided it was time to seek out a neurologist.

“It was my seventh wedding anniversary in 2005 when the doctor told me ‘I think you've got Parkinson's disease,’” said Susan. “My mind immediately went to a vison of an elderly person shaking with tremors and I didn't want to think about it, but the doctor said, ‘I encourage you to get another opinion.’”

Shortly thereafter, Susan’s diagnosis was confirmed by a second doctor, and she began to consider what lifestyle changes she would need to make.

“My manager gave me a role that was more flexible and less demanding in terms of life-work balance, but at the same time, less responsibility also meant less pay and I was used to having the opposite. I was always proud of being a strong female leader in my industry, so it was quite difficult to accept.”

By 2009, managing work with PD and two young daughters had become untenable. “The stress exacerbated all my symptoms,” said Susan. Turning in her business cards was especially hard: “I felt like I lost my identity,” said Susan.

Instead of being discouraged, Susan, now a full time stay at home mom, had new business cards printed. “The cards had the job title ‘Best Mom in the World,’” said Susan. “It was my tagline because it’s what my daughters always call me.”

Today, Susan’s independent daughters are quick to help with her Parkinson’s-related challenges. “My youngest one has nice penmanship, so she helps with writing letters or paperwork at the doctor’s office. My older daughter has an intuitive sense of when I'm getting frustrated with my ability to explain something to someone like a doctor or mechanic. She’ll just say ‘Mom, hold on, I'll do this for you,’ and she'll step up and explain what I’ve been struggling to articulate. She takes the ball and runs with it. I'm really proud of both of my daughters for that support.”

Susan stays active to keep her PD symptoms in check through yoga alongside a trainer and taking evening walks with her husband. “It's our bonding time,” she said. Susan also enjoys spending time with her family watching her younger daughter play softball and her older daughter play volleyball.

Susan also does her part to support young women with PD, offering a listening ear to those considering deep brain stimulation (DBS) surgery. “My social worker contact will call me and say, ‘hey Susan someone is contemplating getting surgery, are you willing to talk to them?’ My first response is always ‘yes, don't even ask, just give my number,” she said. “I didn't have a real person to talk to when I was preparing for surgery in 2017, and if I did, it would have been an elderly man, which wouldn’t have been helpful for me.”

Susan’s advice to people who are newly diagnosed with PD is straightforward. “It gets easier to talk about it and deal with the longer you have. In the beginning it is very emotional because you think the worst, but get medicated, get a good doctor and take your medications on time and you will improve your quality of life.”

Watch our “Better Lives. Together.” public service announcement

My PD Story

Teddy Horn posing with motorcycle
People with PD

Teddy Horn

Teddy Horn riding motorcycle

I started racing motorcycles in 1972, and aside from injuries, Parkinson’s disease (PD) and other setbacks, I'm still racing today! I just got home in Florida from Talladega, where I finished third in my class at the age of 65. Even though the head injuries may have contributed to my PD, at 57 years old I just couldn't stay away from the adrenaline rush of the speed, thrill and great people

I had deep brain surgery (DBS) in 2016. Even though it is not a cure, I couldn't even have considered my return to racing before. Drug free, and other than my slurred speech, I feel great!

My life has changed forever, and my PD is progressing rapidly, but with the DBS surgery, my quality of life is remarkable.

The goal of telling my story is to help other folks who are close to giving up or feel there is no life after a PD diagnosis, have some hope and inspiration. Thanks for the opportunity to tell my story.

Read Surgical Options: A Treatment Guide to Parkinson’s Disease

My PD Story

Karen Anderson
Care Partners

Karen Anderson

When Karen Anderson’s husband, Roger, went into the hospital to undergo surgery for a herniated disc, it should have been a fairly straightforward procedure except for one thing, he had Parkinson’s disease. Like any spouse, she was nervous about the operation but assumed that her husband was in good hands.

Karen was not prepared for what was to come. After explaining Roger’s medication schedule to the medical team, she was astonished to find out how unaware they were about this part of his care. With each shift change, she had to go over his medication schedule with every new doctor and nurse. And when Karen wasn’t by her husband’s side, he didn’t get his medication on time. He was even given a drug not meant for Parkinson’s patients.

As time went on, the situation got worse—Roger suffered hallucinations and couldn’t communicate with the doctor. “It was a horrible nightmare that I could not wake up from,” recalls Karen of that alarming experience. “Here I was, the distraught spouse trying to fight for my husband’s life—and I had to constantly find ways to care for him.”

Therefore, if you ask Karen how she became an advocate for people with Parkinson’s, she’ll tell you she didn’t have a choice. She’s been on this road for more than twenty years with her husband, who was diagnosed with Parkinson’s at the age of 47. As a full-time caregiver, she’s advocated for her husband every step of the journey. Looking forward, she plans to make sure every person with Parkinson’s has an advocate for good care when they need it the most—in the hospital.

When Roger had to go back in the hospital for surgery but this time Karen was proactive. She consulted with his surgeon beforehand and made copies of his medication schedule for everyone on staff.

Aware in Care hospital safety kit

“The Aware in Care kit is a life-saver; as a person with Parkinson’s or a caregiver, you have a role to play in advocating for your own quality care. Make sure you carry your medication list with you and be aware of the medications you take and what happens if you don’t take them,” stresses Karen.

*Roger ended his battle with Parkinson’s, but Karen continues to offer her support to caregivers in her area.

Order Aware in Care kit

Tips for Daily Living

How To Stay Safe During a Hospitalization with Parkinson’s

nurse with patient

Whether planned or an emergency, hospitalization may be necessary during the COVID-19 pandemic. If you or your loved one is living with Parkinson’s disease (PD), the below tips can help you have a safe hospital experience.

1. Be prepared.

Pick a hospital ahead of time so you do not scramble to find one during a medical emergency. A safe hospital is one that will make sure you get your PD medications on time and is not overwhelmed by COVID-19 patients. Here are some questions you can ask a hospital’s patient advocate or receptionist, or consult the hospital website ahead of time:

  • Does the hospital have staff trained in Parkinson's disease management?
  • Does the hospital have a neurologist available for consultation?
  • Does the hospital stock a wide range of Parkinson's medications in the pharmacy?
  • What is the rule on Parkinson's patients taking their own medications?
  • What are the COVID-19 regulations of the hospital of choice? Are care partners allowed to enter with the patient?

Have your Aware in Care kit ready to go with several doses of your medications. Ensure that your COVID-19 Hospitalization Letter is signed by your doctor and included in your kit. If you don’t have a kit yet, print the materials or order one now.

2. Utilize telemedicine to decide if you should go to the hospital.

If you or a loved one are experiencing a medical issue, but are not sure it requires hospitalization, make a virtual appointment with your primary physician, movement disorder specialist or neurologist.

If your practitioner is not available, schedule a telehealth appointment with an urgent care center near you. Urgent care healthcare providers can give you a better understanding of whether you should go to the hospital.

3. Once hospitalized, advocate for yourself to get your medication on time, every time.

Hospitals and nursing staff are extremely busy right now. It is possible that getting your medications on time might be more difficult than usual. People with Parkinson's should watch for these common medication errors:

  • Medications may be missed entirely by error, especially if the reason you are hospitlizated is not directly related to Parkinson's. Immediately mention Parkinson's upon being hospitalized and communicate exactly when you need your next dose of medication.
  • Medication may be omitted, or withheld intentionally before surgery or if swallowing is severely impaired. Parkinson's medications should almost never be withheld. Call your neurologist if medications are being withheld.
  • Medications may be delayed, or not distributed exactly as you take them at home. Make sure nurses understand that you need your medication as scheduled, and that the one-hour window they usually use in the hospital is not acceptable for people with PD. Fill out this Medication Form to communicate your unique medication schedule.
  • Medications may be substituted improperly, typically if they don't have exactly what you take in the hospital pharmacy. Make sure they don't change immediate release for continuous, or generic for name brand.
    • Pay particular attention if you take Rytary, which contains special beads designed to dissolve at different rates within the stomach and the intestines. If the hospital will let you continue to take your home supply of medication, this is best. If they insist on substituting, share this article, which Includes the FDA chart on general (approximate) recommendations for dosage switching.
  • Contraindicated medications can be prescribed or administered. Share the Fact Sheet for Nurses, a document that outlines contraindicated medications in Parkinson's with safe alternatives.

4. Ask for help if you aren't getting the care you need while In the hospital

If you or a loved one are admitted to the hospital and are not getting the care you need, you can ask to talk to any of the following hospital staff members who may be able to advocate on your behalf:

  • Patient Advocate: A health care professional who looks out for the best interests of an individual patient as well as groups of patients.
  • Hospital Social Worker: A professional who serves to assist patients in dealing with the sometimes overwhelming effects of hospitalization, and helping patients and their families navigate the process of illness and injury, from hospitalization to recovery.
  • Complaints Officer: The person responsible for ensuring that stresses are minimized and that both parties find the process transparent, informative and thorough while complying fully with policy, and thus with legislation.
  • Quality Improvement Coordinator: Registered nurses (RNs) who coordinate specific review processes as part of a hospital or clinic.

When hospitalized, show nurses your signed Hospitalization Letter, explaining that you need your medications on time, every time. If you have the magnet in your Aware in Care kit, post it somewhere visible in your room for staff to see.  

For more information, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

Science News

Research Study Makes Case for Palliative Care Early in Parkinson's Treatment

Parkinson's Foundation Science News blogs

When many first hear the term palliative care, they can misinterpret it as end of life care. However, palliative care is an option for anyone with Parkinson's disease (PD) to receive additional support, even at the point of diagnosis. It can help at any PD stage, specifically with treating pain management; encompassing spiritual care and helping people with Parkinson’s and their family navigate emotional challenges. It can also compassionately create a safe space for one to explore, and ultimately share, their end-of-life directives.

What if that level of holistic care wasn’t reserved for the final weeks of life, but rather was incorporated into standard care in the PD population? How might that impact the quality of life and symptom burden for people with Parkinson’s and their caregiver?

Recently published in the journal, JAMA Neurology, “Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial” (Kluger et al., 2020), a one-year comparative study investigated palliative care and its effects on patient and caregiver.

Palliative Care infographic

Study participants included 210 patients (135 men, 75 women), predominantly white, married, college-educated, with an average age of mid-60s. The caregiver participants were composed of 175 people (47 men, 128 women) — 143 of whom were the patients’ spouse. The study was conducted at three academic medical centers: University of Alberta (Alberta, Canada), the University of Colorado (Aurora, CO), and the University of California (San Francisco, CA).

Participants were randomly assigned to receive one of two courses of treatment:

  • The standard of care option: provided by a neurologist and a primary care physician.
  • The integrated palliative care option: included the standard of care, plus a chaplain, a social worker and a nurse using a palliative care checklist — who could also access additional guidance from a palliative medicine specialist. Palliative care visits were performed either in person or by telemedicine every three months.

The study primarily measured a change in quality of life of patient and caregiver burden. Also measured were: symptom burden; patient and caregiver mood (anxiety and depression); patient and caregiver grief and spiritual well-being; patient and caregiver patterns of health care use; motor symptoms; and, cognitive functioning.

Results

Comparing participants receiving palliative care with those who received standard care alone, after six months:

  • Patients receiving palliative care had better quality of life
  • Patients receiving palliative care had better symptom burden
  • Patients receiving palliative care experienced less grief
  • Patients receiving palliative care had better rates of completing their Advanced Directive Completion (end-of-life preferences)
  • Patients receiving palliative care had statistically and clinically significant benefit in motor symptoms

Comparing palliative care and standard of care caregivers:

  • Palliative care caregivers experienced less anxiety
  • No other significant differences were found in caregiver burden

What Does It Mean?

This study found that introducing palliative care significantly improves quality of life for people with Parkinson’s — not just emotionally, but also physically. The study authors share that while these motor improvements were unexpected, they may reflect, “an unanticipated benefit of our palliative care team’s general goal of encouraging activities that promoted joy, meaning and connection.” Additionally, the caregivers in the palliative care group also experienced less anxiety themselves — with no increase in caregiver burden. Interestingly, not a single outcome measure favored receiving standard care alone.

Of note, the study’s main limitation was its lack of diversity among study participants; more than 70% of the participants were white. Incorporating a far more diverse population needs to be included as this important research moves forward.

At its core, palliative care is a caring, holistic approach that optimizes quality of life for as long as possible. Loved ones and caregivers benefit as well, often transforming an otherwise frightening, overwhelming and painful journey into a sacred passage. Introducing this level of care and connection could make all the difference in quality of life.

Learn More

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

Advancing Research

Coping with COVID-19: Survey Results from People with Parkinson’s During the Pandemic

talking to therapist

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
Covid Infographic

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%).

Coping with Covid Survey

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.

Telemedicine or telehealth: the distribution of health-related services and information using technology. Prepare for your next telemedicine appointment with this blog article.

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

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

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