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.

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”.

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:

a. Applying online using eBenefits

b. Working with an accredited representative or agent

c. Calling the VA’s toll-free 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. Learn more about the Aware in Care hospital kit and order or download kit components.

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.

When the Parkinson’s Foundation held its 2020 Care Partner Summit | Cumbre para Cuidadores, care partners from around the world asked our panelists about self-care.

Self-care can be described as “the practice of taking an active role in protecting one’s own well-being.” As individuals, we all need different things — it’s important to retain a meaningful relationship with yourself and manage your well-being in order to effectively care for your loved one with Parkinson’s disease (PD). Your needs are important, too!

There are several types of self-care that can enhance your ability to thrive and to be a better care partner. Different types of self-care include:

• Physical self-care
  • Ensure you are sleeping and eating well, as well as getting enough exercise.
  • Implement stretching exercises into your daily routine.
• Emotional self-care
  • Take some time to reflect on how you are feeling, even if you are experiencing difficult emotions.
  • Treat yourself like you would treat a friend going through a hard time.
• Intellectual self-care
  • Stimulate your brain with things that are fun for you. This could include reading a book, writing your PD Story, listening to your favorite music or watching your favorite show.
• Spiritual self-care
  • Doing things that feel spiritual to you, such as helping someone else, starting a gratitude journal or self-prayer.
• Adventurous self-care
  • Try something outside of your normal routine. This can help you maintain an identify outside of being a care partner and enjoy other parts of your life.
• Sensory self-care
  • Indulge your five senses. Light your favorite candle, listen to some music or simply sit and enjoy the silence.

Take some time to brainstorm how you can best care for yourself. What needs are currently not being met. How can you meet them? You may find yourself asking some of the following questions:

How can I make time for myself when I do not have any help?

This answer will differ for each care partner because everyone’s journey with PD is so different, but it is possible to make time for yourself while you are a full-time care partner. If you are struggling to get outside help, try to shift the time you have with your loved one into activities that will provide you some level of self-care. Some examples of this are:

• Exercise with your loved one. Join an exercise class that can benefit you both or schedule your exercise class for the same time as theirs. Check out Fitness Friday videos.
• Plan your favorite activities for you and your loved one to do together. This, of course, depends on how independent your loved one with PD is, but can be individualized as needed.
• Strategically plan your schedule around theirs. Waking up an hour before your loved one can give you time to do something on your own ― even if it’s just enjoying a cup of coffee.
• Recruit family members and friends to do fun online activities with your loved one while you get some alone time.

Finding time to take care of yourself will require some creativity but will be worth it in the end.

How can I live my own life, fully, without feeling guilty that I’m leaving my loved one behind while I’m enjoying myself?

Many care partners experience care partner stress and guilt, but it can help to remember that guilt is rarely a productive emotion to feel. What is productive is realizing that you cannot be the best care partner if you do not take care of yourself first.

When we are actively taking care of ourselves, we are actively taking care of the person with PD, similar to putting your mask on first in the event of an airplane emergency. Plan something that your loved one enjoys whenever you are out enjoying yourself ― this way, you can rest assured that you are both enjoying yourselves.

How do my partner and I maintain our identity apart from Parkinson’s?

You must be intentional! Unfortunately, you can’t wait for the time that will make you feel like your old selves again. Plan activities that you both used to enjoy, even if they need to be adjusted. Try these tips: 

• Set one day a week where neither of you say the word “Parkinson’s.” Go through your routines but try to not say the “P” word — this might help you both remember that your world does not revolve around Parkinson’s.
• Remember that your care partner identity overlaps with your other roles (spouse, friend, partner, child, etc.).
• Talk about identity with your loved one. It is important they know you need to step out of your care partner role a little bit, and more into your other roles. You might be surprised how much they want that for you, too!
• Think of small ways your loved one can help you throughout the day — maybe they can get the mail or can give you 30 minutes of uninterrupted time each day.

Being a care partner is hard work, but it is not all that you are or all that you do. Remember to utilize our care partner resources:

• Sign up for a course! The Care Partner Program: Building a Care Partnership is a series of online courses you can take at your own pace.

• Read Caring and Coping at Parkinson.org/Library.

If you have questions about Parkinson's or caregiving, contact our toll-free Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

This article is based off the Parkinson’s Foundation Care Partner Summit presentation, “Your Questions: Self Care” panel, which included PD experts Elaine Book, MSW, RSW, Center Coordinator and Clinic Social Worker at Pacific Parkinson’s Research Center; Joan Hlas, MSW, LISW, CREATE Program Supervisor and Clinic Social Worker at Struthers Parkinson’s Center; and Jessica Shurer, MSW, LCSW, Center Coordinator and Clinic Social Worker at University of North Carolina at Chapel Hill.

The secret to all good relationships is that they take effort. The key to true intimacy is finding the time to connect emotionally, but this can be challenging, particularly for people living with young-onset Parkinson’s disease (YOPD).

Often when navigating careers or raising families while also managing Parkinson’s disease (PD) symptoms, those diagnosed before age 50 and those who love them may put their relationships on the back burner. Prioritizing intimacy is important ― it can spark joy, rekindle romance and lead to deeper connection.

This article is based on a Parkinson’s Foundation Expert Briefing “Partnering: The Dance of Relationships and Romance” presented by Sheila Silver, MA, DHS, ACS, an Oregon-based clinical sexologist with expertise in maintaining physical and emotional intimacy Parkinson's.

Building Intimacy

Tackling everyday life can be demanding, particularly when living with a chronic illness. It can be easy to take our closest relationships for granted. Enacting strategies to foster emotional intimacy ― the closeness that couples share when both feel secure in their relationship and love and trust one another – helps people reconnect when life gets in the way.

Husband and wife clinical psychologists John and Julie Gottman have researched successful relationships for four decades. In interviewing more than 3,000 couples, the Gottmans identified that partners with the deepest emotional connections take care to be calm, kind and considerate with each other. These couples also share several other successful behavioral strategies, including:

• Say “I love you” every day, with meaning. In the thick of problems, disagreements or upsets, couples can lose sight of their love for each other. Take time to look your partner in the eye and say these words daily.
• Keep playing and having fun together. It’s easy to get caught up in the things that we need to do to maintain our health and our well-being, especially when living with Parkinson’s. It’s important to make time to celebrate the joy and fun of our relationships.
• Turn toward each other. If you're feeling distant from your partner, look at your body language. Do you regularly turn away? Turning toward one another can bring you closer.
• Give surprise romantic gifts often. A simple flower or note, or even something small from the grocery store can make a big impact. Surprise gifts tell your partner you are thinking of them while you’re apart.
• Take romantic vacations. As the COVID-19 pandemic continues, travel can be challenging. Planning a romantic trip for the future can give you both something to look forward to. Or taking a short trip to nearby place ― with safety precautions in place ― can also break up the daily routine and help you reconnect.
• Schedule weekly dates. Whether you make an appointment to spend time on the couch together one night a week, or pack sandwiches and go on a picnic, weekly dates can help you shed your daily roles and responsibilities and enjoy each other’s company.
• Stay good friends. Amid your day-to-day responsibilities and obligations, remember to laugh together. Reflect on why you chose each other and what brought you close. Remind yourself that you’re committed to each other and your relationship for the long haul.
• Cuddle and kiss one another passionately. Physical acts of spontaneous affection can rekindle romance.
• Practice physical intimacy. Sensual proximity and touching that expresses your feelings can strengthen a couple’s bond. This can be unique to each relationship and doesn’t have to lead to sex. Schedule time on your calendar to be physically affectionate and show up with a willingness to spend time together.
• Communicate. Talk comfortably about your relationship and sex life. Know what turns your partner on and off erotically and talk about any intimacy challenges ― physical or emotional ― either of you face. Discovering and working through these challenges is key to intimate relationships. A therapist or counselor can help improve communication.

The Little Things

Intimacy doesn’t just happen. It’s the little things, intentional daily efforts, that build closeness and connection in our relationships. While Parkinson’s disease can change relationship dynamics, it can also bring couples closer together. Treating those closest to us with kindness, patience and love ― things that can sometimes fall by the wayside in long-term relationships ― goes a long way.

Remember to share concerns about anxiety, depression and changes or difficulties in sexual performance with a healthcare professional.

PD medications can create hypersexuality or impulse control issues, or affect sexual function. It’s important to discuss those issues with a doctor, who can adjust medications or offer other treatment options.  

For more information, read our Intimacy & Parkinson's article.

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.

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.

• Palliative Care and Hospice: 5 Tips for Advocating for Yourself and Your Loved One
• Special Challenges of Caring for Someone with Parkinson’s
• Podcast Episode 41: Palliative Care as Supportive Care in PD
• Parkinson’s Foundation Launches Palliative Care Program Across U.S. Centers of Excellence
• Caring for Someone with Advanced Parkinson’s
• Get Palliative Care: Directory

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.

On March 20, the Parkinson’s Foundation in collaboration with the U.S. Department of Veterans Affairs Ralph H. Johnson VA Medical Center, hosted a live online event, “Veterans and Parkinson’s: What You Need to Know.” More than 1,100 veterans and family members from all 50 states and several countries registered to learn more about managing PD. Four panels of experts from the VA and the Parkinson’s Foundation addressed key issues in treatment, care, mental health and available resources and benefits.

These experts discussed how Parkinson’s is treated in the veteran community and highlighted some of the unique factors that make veterans more at risk of not only developing Parkinson’s, but also of receiving later diagnoses and dealing with more complicated mental health challenges.

“A number of conditions that veterans are more likely to experience such as traumatic events, significant head injury, combat deployment and Agent Orange exposure placed them at greater risk of developing Parkinson’s,” said Dr. Travis Turner from the Medical University of South Carolina – a Parkinson’s Foundation Center of Excellence.

“Having spent a number of years working as a neuropsychologist in the VA health care system, I have observed some unique characteristics in the way that PD presents in veterans," said Dr. Turner. "For example, veterans are often less likely to seek medical help for subtle changes in their health. This means that when we see them the disease is often a bit more progressed before it is formally diagnosed and treated. Unfortunately, this means that there will be an extended period of diminished quality of life before we can get them the help that they need. However, with improving quality of care through the VA, access to specialized medical treatment and building patient trust, this is becoming less of an issue.”

Throughout the program, participants heard from experts and had an opportunity to ask questions about PD progression, treatment, as well as accessing specialized care. In addition to hearing from experts, we also heard from three veterans who are currently living with PD. Here’s what they had to say:

How did you manage your Parkinson's diagnosis as a husband and a father on active duty?

Eric Arrington, Army

“I just found out as much as I could about Parkinson’s and dug deep. I started preparing myself for the medical board and, believe it or not, I passed the medical board for the second time in my military career. A year later, I dropped my paperwork. I made sure my wife had everything that she needed and that she understood more about PD. Toward the end of his high school career, I made sure my son had opportunities to participate in different things he wanted to do and made sure my disease didn’t have a negative impact on my family.”

Why was it so important to you to move quickly and to make sure that you see a Parkinson’s specialist?

Jay Phillips, Army

“My first diagnosis came from a regular neurologist, not a movement disorder specialist, who immediately started me on carbidopa/levodopa. As a treatment, that's what we call the gold standard drug. But I learned about three months after that, when I got a second opinion, that it perhaps wasn't the best thing to have started me off on right away because my tremors were minimal and because of the possibility of long-term side effects. So, I decided to join a support group early on where I was exposed to a lot of other patients and I could see how complicated PD is and how everyone is taking different medications for different symptoms. At that point, I decided to seek out expert care.”

As a field hospital nurse in Vietnam, you had many exposures to Agent Orange. When your hand started shaking decades later, did you think it was related to your military service?

Lou Eisenbrandt, Army

“Absolutely not. As a matter of fact, with my nursing background, I suppose I should have been aware that something was going on. But when you go to nursing school, you really don't talk about Parkinson’s very much. Years later when I was looking for information online a lightbulb went off as I read about military exposure to Agent Orange and Parkinson’s. Most of my time in the field was spent in an emergency room where we got guys straight from field. The first thing we did was cut off their fatigues to assess the injuries. Lots of them were in the path of spraying for Agent Orange.”

What went through your mind thinking about life beyond diagnosis? Did you experience depression or anxiety?

Lou Eisenbrandt, Army

“Yes, I remember spending two days on the couch curled up in a fetal position. It caught me by surprise when I finally worked my way out of the depression because I had never experienced it before. Once I started reading more about Parkinson’s, I realized that many of us are not depressed because of our diagnosis but because we don’t have enough dopamine. I usually say I’m running at half-quart low. I learned that you shouldn’t be ashamed of taking antidepressants. I’ve really been on them since day one, and I’ve been living with this for 19 years.”

There is a category of veterans who suffer from post-traumatic stress disorder (about 20 to 30% that we know of). Do you think the Parkinson’s and PTSD influenced one another?

Eric Arrington, Army

“For a while, I thought I was going crazy. I didn’t put it together until I finally got the courage to see a psychologist. You’ve got to get the help that you need, take the medication and see the doctors. Taking the medication is not going to make you less of a warrior. It will enhance your abilities and make you stronger. It also takes the burden off the care partners when they are not the only ones watching out for you.”

What are some final words of advice for other veterans living with Parkinson’s disease?

“Find expert care, get the right medications and remember to take them on time. EXERCISE – it’s so important. Get involved with a supportive community of people. Take care of your care partner, especially as the disease progresses and things become more burdensome for them. The VA has some fantastic programs.” - Jay Phillips, Army

“Make sure you do your own research. What helped me was the Parkinson’s Foundation and the VA websites. Make sure you request books from the Parkinson’s Foundation and use their hospital safety resources so you know what you need to ask and have all your medication information handy. - Eric Arrington, Army

“I want to reinforce the caregiver aspect for caregivers are just indispensable patients. Remember that we cannot hurry anymore so be kind when you’re getting ready to go somewhere. And finally, what I tell everybody at least once when I talk to them, each Parkinson’s patient is just like each soldier. No two are alike. Get help if you need it and do not compare your symptoms to anyone else.” - Lou Eisenbrandt, Army

In 2020, the U.S. Department of Veterans Affairs (VA) and the Parkinson’s Foundation announced a partnership to improve the health, well-being and quality of life of veterans living with PD. This partnership will help expand awareness of VA and Parkinson’s Foundation resources provided to veterans with PD. 

Watch the video recording of this program “Veterans and Parkinson’s: What You Need to Know.” To learn more about veterans and Parkinson’s disease, visit Parkinson.org/Veterans.

The Parkinson’s Foundation, in partnership with the VA, will continue offering educational events focused on the needs of veterans with PD. For more information about upcoming events, please visit Parkinson.org/Events or call 1-800-4PD-INFO (1-800-473-4636) for information about veterans’-specific programming.

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.