My PD Story

Ellie and Winnie (dog)
Family Members

Ellie

Ellie has been a part of the Parkinson’s community ever since her father received his Parkinson’s disease (PD) diagnosis more than 12 years ago. Having undergone multiple surgeries and facing infection, he now lives in an assisted living facility where he is receiving care for not only his PD, but his other health complications. She visits him, often accompanied by a welcomed guest - her dog, Winnie Belle.

Winnie is a Great Pyrenees mix, but more than that, she is Ellie’s partner, teammate and inspiration. A working dog by breed, Winnie needed a task to keep her busy and motivated through life. Even as a puppy, Ellie noticed that Winnie was drawn to people. She was affectionate towards children and if anyone was ever in trouble, Winnie sought to comfort them. It was decided: Winnie would become a therapy dog. Unbeknownst to both, it was a matter of time before they would make their way to the PD community.

After some research, Ellie and Winnie joined Pet Partners: an organization that offers education for trainers, renewed registration every two years for the therapy team, and opportunities to volunteer. For three years, Winnie took part in a variety of obedience classes outside of the program to learn how to care and comfort people with a range of needs in a medical setting, while Ellie received training of her own to become a therapy dog handler.

Looking to connect to volunteer opportunities in the PD community, Ellie signed her and Winnie Belle up for the first-ever Moving Day fundraising walk in Nashville’s Percy Warner Park to participate in honor of her father and his fight against Parkinson’s disease. They attended as a therapy team. “Sometimes people are afraid to or don’t know how to approach people with Parkinson’s. Having a dog breaks the ice,” said Ellie about one man they met at the walk. Wheelchair-bound and likely experiencing facial masking due to his Parkinson’s, the man didn’t seem to take an interest in people. But Winnie caught his eye. He then spoke slowly and softly about his own pet and was thrilled to meet Winnie.

This is what Winnie Belle can do. Even Ellie’s father, who is not an animal-person, finds joy in Winnie’s visits.

She and Ellie have since become quite the therapy team: they volunteer at Vanderbilt children’s hospital twice a month, attend monthly events for young kids with special needs and even visit juvenile court every so often. “Everyone knows Winnie,” says Ellie about the kids, nurses, and staff they encounter, “they’re eyes light up when they see her.”

Hoping to support other therapy teams in Nashville, Ellie and other Pet Partner handlers started the local affiliate group called Music City Pet Partners in July of 2017. Since then, the group ran their own booth at an annual dog days event with the goal of extending the support of pet therapy teams to those who could truly use it. 

Ellie and Winnie plan to further explore dog therapy in the Parkinson’s community and rally more Pet Partners teams to attend Moving Day Nashville next year. They can’t wait.

Moving Day Nashville 2018 will take place on Saturday, April 7 at Centennial Park.

Learn more and register for the event

My PD Story

Cristina Ibarra on boat
Family Members

Cristina Ibarra

English

My dad, Jorge, was born in 1942 in Mexico to a hardworking family. My father and grandfather started a company dedicated to manufacturing hand-made, artisanal candy. Eventually the company prospered and was recognized in Mexico and throughout Latin America.

My father’s Parkinson’s disease (PD) symptoms first manifested as fatigue. He would get exhausted from just walking. His face also started to change. He underwent medical tests and exams until the doctor diagnosed him with Parkinson’s in 2005. He was given Sinemet as his primary medication to help with symptoms. Here in Mexico, we pay for health insurance so he can regularly visit a neurologist, psychologist and psychiatrist to manage his PD and make adjustments to his medications.

Over the last 11 years his health and quality of life started to deteriorate. But recently, something inspired him to begin making homemade candy again. It’s become a hobby for him. He’s been teaching young adults how to make his artisanal candy, because it is a craft after all. Since he’s returned to his passion he’s now coping better with his Parkinson’s and his mood has improved as well.

In order to make his artisanal candy he has to constantly move. His Parkinson’s makes his muscles rigid, but when he’s constantly moving to mold the candy it breaks his rigidity. When he stops moving he gets tired since the PD affects his energy. He’s also lost a lot of weight and muscle mass, which makes his body weaker.

In Mexico we can’t find any PD support groups to attend. We consider ourselves lucky to have access to his medications, although they are expensive. There are people here who do not have access to the resources we do because they are enrolled in the country’s free health insurance, which is not sufficient. My father has met very few people with PD here in Mexico. He’s never been outgoing, but now with PD he’s even less willing to make new friends. However, his outlook and desire to speak to people completely change when he’s around his assistants in the confectionary or teaching others how to mold candy.

I wanted to share a video of my father making candy because it makes me happy to see how he’s living his life again. He is trying to make his life better and not let PD win. I’m incredibly proud of him.

Español

Cristina Ibarra's hard candy in a jar

Mi padre, Jorge, nació en 1942 en México a una familia trabajadora. Mi padre y abuelo empezaron una empresa dedicada a la fabricación de dulces hechos a mano. Con el tiempo la empresa se hizo muy conocido dentro de México y en toda América Latina.

Para mi padre, los síntomas de la enfermedad de Parkinson manifestaron por primera vez como fatiga. Se ponía agotado de sólo caminando. Su cara también empezó a cambiar. Fue a pruebas médicas y exámenes hasta que el médico le diagnosticó con Parkinson en 2005. Le dio Sinemet como su principal medicina para aliviar los síntomas. Aquí en México, pagamos para el seguro de salud para que mi padre puede ir regularmente a un neurólogo, psicólogo y psiquiatra para gestionar los medicamentos y el Parkinson.

Su salud y calidad de vida empezaron a deteriorar durante los últimos 11 años. Pero recientemente algo le inspiró para empezar a hacer los caramelos de mano otra vez. Ahora es un pasatiempo para él. Es algo que le gusta y quiso intentar de nuevo con algunos ayudantes y enseñar a gente joven también porque es un trabajo artesanal. Desde que ha vuelto a su pasión está mejorando con su enfermedad de Parkinson y su estado de ánimo.

Mi padre tiene que moverse constantemente para preparar los caramelos. El Parkinson deja sus músculos rígidos, pero cuando está en constante movimiento haciendo los caramelos se rompe su rigidez, ayudando al cuerpo temporalmente. Está cansado después porque es un trabajo duro y el Parkinson le ha hecho perder peso y masa muscular.

No hay grupos de apoyo para el Parkinson en la ciudad. Nos consideramos afortunados que es fácil conseguir los medicamentos, aunque no son baratos. Aquí hay personas que no tienen acceso a todos los recursos porque tienen el seguro de salud gratuito que no es suficiente. Mi padre solamente ha conocido a algunas personas en México con el Parkinson, pero no es muy sociable y no hace amistades fácilmente. Él siempre fue así, y es más difícil socializarse ahora que tiene el Parkinson. 

Sin embargo, su punto de vista y el deseo de hablar con la gente cambia cuando está alrededor de sus ayudantes en la confitería y cuando está enseñando a otros cómo moldear el caramelo.

Quería compartir un video de mi padre trabajando con los caramelos porque estoy feliz verle viviendo su vida de nuevo. Él está tratando a mejorar su vida para no dejar que el Parkinson gana. Estoy muy orgullosa de él.

My PD Story

Beth Bjerke with group hiking
People with PD

Beth Bjerke

Four years after a diagnosis of Parkinson's disease at age 44, Beth Bjerke took on a big challenge in a "grand" way. On April 11th, Bjerke, now 48, crossed the invisible finish line of Bright Angel Trail, a 20-mile hike to the bottom of the Grand Canyon and back again. The Tucson-resident and mother of two chose to hike the Grand Canyon during Parkinson’s Awareness Month to raise awareness of young-onset Parkinson's disease (YOPD) and the huge toll it takes on families.

"We're not all alike, but as a family, we live life on a tight rope," Bjerke explained. "My hope is to find ways to bring together kids who have a parent with Parkinson's and help them cope."

To prepare for the backpacking trip, Bjerke focused on setting short-term goals. “The Grand Canyon gave me a reason to get up and get going every day, and not give in to apathy,” she said. “I didn’t want to become depressed.” To regain her strength and balance, Bjerke worked with a personal trainer. “I went into the gym half-crunched over, like an 80-year-old lady, and came out looking normal again,” she said. Bjerke’s homegrown hiking team included her husband, her youngest son and his girlfriend, her stepsister and a close friend.

Grand Canyon landscape

Together, they entered the Grand Canyon in a snow flurry and trekked to the bottom, reaching the Colorado river hours later. They continued their four-day journey on foot through unpredictable weather and amazing views. At one point, a painfully swollen toe threatened to sideline Bjerke, but the avid outdoorswoman decided to “cow girl up” and stuffed her purple toe back into her shoe and pressed forward in pursuit of her goal.

Bjerke’s family and friends surpassed her goal of raising $5,000 for the Parkinson's Foundation.

“After being diagnosed with PD, so many people say what now? We all start off that way,” she said. “For me, this is what works best; for how long, I don’t know, but I just came out of one of the Seven Natural Wonders of the World.” Today, Bjerke is taking scuba diving lessons and dreaming of paragliding the Grand Tetons someday. “You can dream,” she said. “It may not be the best time or conditions, but you can still reach for small goals and build on them.” 

Help us raise awareness and funds for Parkinson's research. 

Become a Parkinson's Champion today

My PD Story

Todd Bischoff looking down
People with PD

Todd Bischoff

"I'm sorry. You have Parkinson's Disease." I stood in the parking lot, the receipt flapping in my trembling hand, completely stunned by the words I had just heard. At least my neurologist had the courtesy of saying, "I'm sorry" before delivering the news. Still, it didn't seem to lessen the blow any. I felt like someone had reached into my chest and squeezed all the air out of my lungs.

My personal PD story is unique, full of weird circumstances and irony. (But then again, whose PD story isn't?) I was officially diagnosed on April 4, 2006 (4/4/06) at the age of 46. I found the "numerical coincidence" to be a little disconcerting. (As an ex-ice hockey player, we all tend to be a little on the superstitious side.) It was also National Parkinson's Awareness Month, and believe me, I was aware! Prior to my diagnosis, I also had encounters with the two most famous faces of our disease, Michael J. Fox and Muhammad Ali.

Like most people with PD, as I looked back at the years prior to my diagnosis, I realized my symptoms started well before I knew that my brain was being invaded by an unwanted and uninvited visitor. The signs were all there, glowing like a brightly lit neon sign tattooed right across my forehead. I just didn't see it. And really, why would I? I was relatively young and in great shape physically, so there was certainly no reason to think I had something like PD. After all, it's an old person's disease, right? Wrong.

I ended up going to the doctor after years of stiffness (rigidity), slower walking (bradykinesia), problems with my writing (micrographia), lack of arm swing on my ride side when walking, and problems with my fine motor skills. I had severe pain (dystonia) between my shoulder blades and into the base of my neck. I was having problems holding pens and gripping my silverware when eating. Simply trying to get 3 crackers out of a box was becoming a huge ordeal. I even had some typical non-movement symptoms common in PD, like loss of smell, depression and sleep disturbances.

After blood tests to rule out other possibilities, two neurologists, one PD specialist, a trip to the Muhammad Ali Parkinson Research Center in Phoenix, AZ, and a two-week trial dose of Sinemet, the diagnosis was confirmed. Four times. Stunned doesn't even begin to describe how I felt. I wanted all the doctors to be wrong and say, "Sorry Todd, we made a mistake." But reality slapped me squarely across the face. Hard.

The challenges were just beginning. How do you tell someone you love that you've been diagnosed with a progressive neurodegenerative disease for which there is no cure? Sharing the news with my wife was quite possibly the hardest thing I've ever had to do. I felt a pain like nothing I've ever experienced before. And I can't even begin to imagine what was going through her mind as I delivered the devastating news.

I've always been a "Type A" personality. If I decide I'm going from "point A" to "point B," you best get out of my way, because I'll get there come hell or high water. And I almost always have multiple projects going on. In the old story of the rabbit and the tortoise, I was the rabbit. Zipping around as fast as I could, getting my hands into anything and everything. It wasn't about winning but enjoying the adventure. Well, I do like to win whenever possible!

But now with PD, I've come to realize that I have to be the tortoise. Slow and steady may indeed win the race, but when you're used to the rabbit lifestyle, transitioning to the tortoise isn't easy by any means. PD, however, has dictated the change and all I can do is go along. I wasn't really given a choice in the matter.

I decided to research and read anything and everything about PD that I could get my hands on. Well, I did read things that scared me. Let's be honest, it's scary to have a disease in which you can clearly see your future and know that there is nothing anyone can (currently) do to stop it. It's like being in a car going down a steep hill and realizing the brakes don't work. You can steer all you want but the crash is unavoidable. Maybe just being in denial would be the better option. But education is power, so I continued to learn as much as I could.

The biggest step was meeting others with PD, those who have already traveled down the path that I was about to go down. And yes, some were far more progressed than I. But something unexpected happened. Instead of being frightened, I felt comforted. I felt accepted. I knew they understood me, what I was going through, and what I was about to go through. I felt like I was part of a loving, caring family. I felt safe. Meeting fellow people with PD was the best thing I could have done. Isolation is a killer, camaraderie builds strength.

I'm more inspired than ever. Even though I met people who lost careers and had to dramatically alter their lifestyles, I discovered many who found new joys and talents they never knew existed. It's as if they were butterflies just waiting to be released from their cocoons. From their experiences, I've gained a perspective on life that has forever altered how I look at myself, and the world around me.

PD has changed me into the tortoise and has allowed me to see all the small moments in life that are so incredibly rewarding and powerful. Moments that as the rabbit, I would have missed.

Currently, I'm a motivational and inspirational speaker who has traveled all over the country talking about living with PD. I've started a very successful young-onset group in my area. And I’ve decided that I’m not going to “live with” PD but instead, I’m going to “fight” it every step of the way through knowledge, diet, exercise, and most importantly, attitude. While PD may have taken away some parts of my life, it's also given me a new purpose, focus, and direction, and that's not a bad thing. Being the tortoise does indeed have its advantages.

Todd Bischoff lives in California with his wife Joyce and their dog Kaylee. Todd is an ex-athlete, actor, radio personality, voice-over artist, and Child Life Specialist who now is a motivational and inspirational speaker.

As you process your or a loved one’s diagnosis, we are here to assist and empower you at every stage. When you’re ready, explore our Newly Diagnosed kit and start your journey to living well with Parkinson’s.

My PD Story

Kelly Maurer holding daughter at beach
People with PD

Kelly Maurer

Who would have ever believed the words “you have Parkinson Disease” at the age of 33? I sure didn't want to. I had a brand new baby at home, a good job, my independence. I am here to tell you, it’s ok, you don't need to surrender to this sly disease that sneaks up on you ever so subtly.

It took me some time to come to the realization that, yes, I have a disease that will change some aspects of my life. The key to that was learning that I had other talents, new paths to walk down, and a choice to surrender or stand up.

It was obvious to me at that moment that I had an opportunity to make a difference and make people stop and look, and really listen. My job now is creating awareness. My advantage is my age and the fact that I am a young mom fighting this battle. Having PD has brought the creative side out of me, writing poems is something new to me that I really enjoy. Photography is also a fun hobby that I have more time for now.

My true passion, though, is my five year old daughter, and being her mom. She keeps me on my toes at all times, helps me stay active and gives me a desire to keep pushing forward. She puts a fire in my heart to kick PD as hard as I can and to challenge myself. At nights end, tired and worn, I tuck her into bed and thank God for sharing her with me.

The unconditional love given and the innocence of a child is truly priceless. My victory each day is being able to wrap my arms around her and kiss her goodnight. As her tiny little fingers grasp mine, I can ease all her fears, give her comfort that I am here for her, and at the same time she is completing me also.

I do not question why I have PD, I accept it, move forward, and gain strength from it. How can I feel sad when I look around and have so much to live for and love? Find that inner place that brings you peace and puts a smile in your heart and on your face, then embrace it and enjoy it.

You deserve to be happy, nothing or no one can stand in your way and keep you down except you.

Tips for Daily Living

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

Woman talking to doctor

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.

Palliative Care infographic

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

Veterans

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.

Caregiver Corner

Parkinson’s Experts Discuss Their Favorite Self-Care Strategies for Care Partners

Woman sitting on a bench outside

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:

a couple doing stretches in front of a computer at home
  • 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:

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.

Raise Awareness

Relationships, Romance and Young-Onset Parkinson's

Couple hugging

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.

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.

Subscribe to Mental Wellness
Back to Top