Tips for Daily Living

Palliative Care and Hospice: 5 Tips for Advocating for Yourself and Your Loved One

Nov 05, 2020

If you or a loved one has Parkinson’s disease (PD), it is important to understand what support is available to you. Most people are aware of hospice as a resource for late-stage Parkinson’s and palliative care as an option for additional support even at the point of diagnosis. The tips below will inform you about palliative care and hospice and help you advocate for yourself or your loved one when you consider these resources.

Tip #1: Palliative care is different from hospice care.

Many people believe the terms palliative care and hospice are interchangeable. Although they share some things in common, they are in fact different types of care.

Palliative care, ordered by one’s doctor and covered at least in part by most insurance plans, can be started as early as the time of diagnosis as an additional layer of support, complementing any other medical care you currently receive or want to pursue. The multi-disciplinary palliative care team will support you and your family by tending to unmet physical needs you may have that are hindering your quality of life and comfort, as well as your emotional, social and spiritual needs and those of your family members and caregivers.

Hospice care shares many goals of palliative care in that patient and family autonomy, dignity and comfort are paramount. However, hospice is reserved for people in later stages of Parkinson’s or advanced illness. Learn more about the role of hospice.

Tip #2: You may be the Parkinson’s expert on the team.

Health professionals working in palliative care and hospice may have differing levels of familiarity with Parkinson’s disease, so at various points in your partnership with them, you may need to advocate for yourself or your loved one. Don’t hesitate to ask your loved one’s neurologist to give direction or guidance to the palliative or hospice care team, especially if there is a conflict about Parkinson’s medications or symptoms.

Utilize your Hospital Safety Guide to help distinguish between medications that are considered safe and unsafe and to educate members of your care team that may be less informed about the motor and non-motor symptoms of PD.

In March 2020 the University of Rochester, a Parkinson’s Foundation Center of Excellence, received a grant to create a new program in partnership with the Parkinson’s Foundation that will launch customized palliative care training across 33 U.S. Centers of Excellence. This program will train more healthcare professionals about palliative care, underpinned by the goal of getting palliative care to as many people with Parkinson’s as possible. Read the full article.

Even if you are partnering with a palliative or hospice care team that understands Parkinson’s very well, remember that you are the expert in your experience with Parkinson’s.

Tip #3: Searching for a “best fit” team is worth the effort.

As with all health care services, there is wide variety in both philosophy of care and quality of care among providers. Ideally, you will find a team that is flexible and curious with their approach to your Parkinson’s symptoms and medication needs.

Get recommendations from people in your PD community ― ask members of your local support group or exercise class who may have experience on the subject. Browse different providers serving your area to gage whether they offer any additional, innovative services as part of their palliative care or hospice program. Talk or meet with a few palliative and hospice care agencies to learn more about their values and desire to support your unique PD needs.

Tip #4: Make the most of the services available to you.

Learn about all services a palliative or hospice care agency offers and ask to be connected to any that may interest you; you do not need to wait for the agency to suggest it first. If you do not understand the role of one of the members of the care team, ask for more information or better yet, a consultation with that person.

Tip #5: It can take courage to ask your doctor about palliative care or hospice.

Most of us feel uncomfortable talking about anything that hints at our mortality, which is why so many people, even those in the healthcare field, hesitate to approach these topics. Palliative and hospice care can both support your quality of life goals ― with palliative care supporting quality of life at any stage and hospice care supporting quality of life at the advanced Parkinson’s stages. Asking questions does not commit you to anything, it only allows you to be more informed about your options.

For more information about palliative, hospice or expert Parkinson’s care, call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).

For more insights on this topic, listen to our podcast episode “Hospice Care and the Myths Surrounding It”.

Raise Awareness

7 Resources for Veterans with Parkinson's

Nov 09, 2020

The U.S. Department of Veterans Affairs (VA) estimates that 110,000 veterans have Parkinson’s disease (PD).

Most people with Parkinson’s develop symptoms at 50 years of age or older. As our population ages, so will the number of Americans living with Parkinson’s, along with the number of veterans diagnosed with the disease. While living with Parkinson's can be challenging, an early diagnosis and beginning treatment can help people live well with Parkinson's.

We highlight seven resources below that may be useful for a U.S. veteran living with Parkinson’s or loved ones who care for a veteran with Parkinson’s:

1. Many U.S. military veterans with Parkinson’s have access to specialized medical care and financial assistance through the U.S. Department of Veterans Affairs (VA). The VA treats veterans with Parkinson’s through medical centers known as Parkinson’s Disease Research, Education & Clinical Centers (PADRECCs). Get connected to a PADRECC and apply for care and benefits from an accredited representative or Veterans Service Officer (VSO) at the VA webpage: Get help filing your claim or appeal. Always work with an accredited representative or agent. Federal law prohibits attorneys and others from charging a fee to assist with the VA application.

2. In some cases, a Parkinson’s diagnosis can be linked to Agent Orange or other herbicide exposure from a veteran’s military service. The powerful herbicide was used in Vietnam from 1962 to 1975, but was also used and stored in other locations. Veterans may be eligible for a free Agent Orange registry exam, disability compensation and other VA benefits. To learn more visit the VA page on eligibility and hazardous materials or call the Agent Orange Helpline at 1-800-749-8387.

3. Veterans living with Parkinson’s may qualify for Financial Aid Programs, such as help with daily activities, inpatient hospital care, outpatient services and more. Service members, veterans and families can apply for various VA benefits by:

Applying online using eBenefits
Working with an accredited representative or agent
Calling the VA’s toll-free benefits hotline at 877-222-8387, Monday-Friday 9 a.m. to 7 p.m. ET

4. The Parkinson’s Foundation and VA have resources specially designed for those caring for a loved one with Parkinson’s who is a veteran. Utilize these care partner resources now.

5. Every person living with Parkinson’s should be prepared for a possible hospitalization. Hospitalization can be especially stressful for a veteran with PD and caregivers. Explore our Hospital Safety Guide and order or download it today.

6. Know the signs of depression. Depression is a non-movement symptom of Parkinson’s, along with anxiety and apathy, and can be a side effect of Parkinson’s medication. Know the symptoms of depression for both you and your loved one. Keep these numbers nearby, just in case: Parkinson's Foundation Helpline 1-800-4PD-INFO (473-4636) and Veterans Crisis Line (1-800-273-8255, press 1 or text to 838255).

7. You are not alone. Find the resources that work best for you, from our Newly Diagnosed resources to our PD Library and our virtual community at PDConversations.org. Remember, you can call our Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.

For the latest information about Veterans and Parkinson’s visit Parkinson.org/Veterans.

Tips for Daily Living

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

Nov 20, 2020

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

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

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

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

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

People with PD

Teddy Horn

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

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.

“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

Dec 29, 2020

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.

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