My PD Story

People with PD

John Ball

Yes, I’m a veteran ― in more ways than one. I served as an officer in the U.S. Navy from 1966 to 1971. I spent my Navy career flying airplanes, including 18 months in Southeast Asia. My most important job was flying medivac missions in the Philippines and in and out of the war zone. It was an intense time for America, both at home and abroad. I must admit, I was happy to return to civilian life and enter graduate school.

It was in graduate school that I first noticed changes in my gait and my balance. My left foot began to drag as I walked, and occasionally my toes would cramp so hard that I’d have to stop and take off my shoe. The symptoms worsened very gradually, so gradually that I didn’t bother seeing the doctor about them for a couple of years. When it got so bad that I could no longer walk more than a few yards without the cramp in my left foot, I started seeing doctors — lots of them.

For 12 years I shuttled from one specialist to another, trying to pin down my problem, but none of them ever suggested Parkinson’s disease (PD). When I suggested the possibility, they said I wasn’t old enough for Parkinson’s (the term young-onset PD had yet to be invented). In 1983, at the age of 39, I was finally diagnosed with Parkinsonism.

In many ways it was a relief to have a name for my condition. At least I was no longer facing the unknown. How wrong that notion turned out to be! It soon became clear that there was very little known about Parkinson’s or its ‘isms’ despite it being identified for almost 200 years.

You could say that my PD arrived at a good time, because the patient community was no longer waiting patiently for better treatments or a cure. As I began studying the condition and working out my own strategy for dealing with all its ramifications, I noticed that there was a growing resolve among patients and their families to prod the medical community and the government-supported NIH researchers to increase their study of the disease and work toward finding a cure. I became a patient advocate and I became aware of the huge need for awareness and funding for PD research.

In 1998, I attended a Parkinson’s Action Network conference in Washington, D.C., including celebrities like Muhammad Ali and Michael J. Fox, urging Congress to appropriate more funding for research in Parkinson’s. I also noticed that there was a surprisingly high number of veterans in the advocacy group. They were convinced there was a connection between exposure to Agent Orange and PD. It turned out that some of the best on-going research in PD was being conducted under the guidance of the U.S. Army.

In 2011, as a result of the Veterans’ advocacy efforts, Parkinson’s disease was finally recognized as a covered condition of service in Vietnam and exposure to Agent Orange. Since then, I have received my care and treatment for PD at the West LA VA Medical Center. The VA (PADRECC) continues to do a great job for me and many other Veterans.

The last 20 years has seen a major shift in the treatment of PD and the understanding of the role exercise plays in neuroplasticity. When I was first diagnosed the doctor said, “Go home and find a comfortable chair.” No one would say that now.

My personal strategy for dealing with PD has always been to outrun it. I began running almost immediately after my diagnosis, and by the time I reached 40, I knew that running gave me the strength to better manage my PD symptoms. In my 40s, I ran 5k and 10K races regularly and once every year I ran a ½ marathon as a check on my PD progression. I was fortunate that my favorite sport turned out to be the best thing I could do to control my Parkinson’s.

At 51, I decided to run my first marathon. It changed my life and inspired a friend with PD to do the same. Mary Yost decided that if I could do it, so could she; so, together with some friends, we formed Team Parkinson. In 1999, we became an official charity of the Los Angeles Marathon, and began using the marathon as tool to help PD patients and their families to raise awareness, fund research and improve their quality of life through exercise. Since our first effort in 2000, Team Parkinson has contributed more than $3 million dollars to Parkinson’s research.

Now, I can say I’m a Veteran, not only of the Vietnam War, but also a Veteran of the war on Parkinson’s, and a Veteran marathon runner as well.

The VA Parkinson’s Disease Research Education & Clinical Centers (PADRECCs) are Centers of excellence designed to serve Veterans affected by Parkinson’s through state-of-the-art clinical care, research, education and national outreach and advocacy. Learn more at www.parkinsons.va.gov

The Parkinson’s Foundation honors those who have served and continue to serve our country. If you are a veteran with Parkinson’s or care for one, read our new resources: Veterans and Parkinson’s Disease and Veterans Benefits.

My PD Story

People with PD

Dick Field

Every year Dick Field invites his family on an adventure. “We try to take all our grandchildren to interesting places,” Dick said. Their adventures took on a new meaning — and some modifications — when Dick was diagnosed with Parkinson’s disease (PD).

After going to Africa, the family set their sights on Iceland in 2017, where icy terrain proved to be challenging. “It was a difficult trip and I could not complete the journey,” Dick said. So, in 2018, Dick better prepared himself physically and invited the family to join him in southern Spain, for a hike — with a purpose.

Full of history and culture, Dick challenged each of his family members to climb the Rock of Gibraltar, together "I will give the Parkinson's Foundation a thousand dollars for each of you who make it to the top," Dick told his children and six grandchildren. Everyone was motivated and ready to go.

Dick prepared by timing his medication and packing his walking stick. When traveling with six children, there was a steady supply of snacks. He also planned his path. “There are two sides of the climb, one is a sheer drop and one is a more gradual climb, like climbing the lower part of the Rockies," Dick said. "Guess what side our family selected?”

From eight years old to 78, the family of 12 began their ascent. "We arrived early so that we had the climb to ourselves," he said.

“It was a beautiful day and the Mediterranean was sparkling blue,” he said. The Field family set their own pace, stopping to meet a variety of interesting groups along the way. “The climb attracts so many types of people my grandchildren were able to meet,” he said.

It took four hours to reach the 1,388-foot elevation. “I felt elated when I got to the top,” he said. “Elated that I’m still able to do this kind of stuff.” From the top they were able to see Morocco, Spain and France. The family took it in and began their descent, making memories and taking photos along the way.

Dick’s grandchildren are no strangers to Parkinson’s, as another close family member is also living with PD. “They are all aware of Parkinson’s disease and knew it’s why we were climbing,” Dick said. “They now all have a newfound sense of different ways you can contribute to a non-profit.”

Serving as a Parkinson’s Foundation board member since 2013, Dick believes in the Foundation and has both helped and received help from the Foundation.

“Many People who have been diagnosed don’t know what to do,” he said. “Simultaneously, many movement disorder specialists don’t have the time or inclination to take deep dives with their patients to discuss this disease. At the Foundation, we’re setting new standards to help more people, especially through our Centers of Excellence, which provide a detailed action plan for managing your disease.”

“The focus of the Foundation is cure and care. Everyone who works at or together with the Foundation is on the right track, coming together to further Parkinson’s research,” Dick said.

Dick and his family are now setting their sight on a new adventure in 2019. He won’t let his Parkinson’s slow him down.

Like the Field’s family, if you are interested in raising awareness for the Parkinson’s Foundation through a Do-It-Yourself fundraiser learn more and 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

Don Miller

For Don Miller and Marie Head of Big Canoe, GA, their devoted marriage, and their tremendous admiration for each other’s resilience, helps them manage the challenges of Parkinson’s disease (PD).

“Don is a fighter,” said Marie. “From the moment he was diagnosed, I have told him that he is my hero. He has never stopped fighting.”

“It's a wonderful union,” said Don. “I'm so lucky to have found a caring partner like Marie in mid-life. Tackling PD without her would have been so much harder. She's an excellent care partner and very loving person.”

Don and Marie have been passionate members of the Parkinson’s Foundation community since 2013. They are consistently ranked among the top fundraisers at Moving Day Atlanta each year, and Marie serves on the People with Parkinson’s Council. The couple was delighted to be included in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) to help raise awareness.

“I hope this PSA will let people know they are not alone — resources are available to both people with PD and people who are caring for them. They are a part of a larger community that wants to help,” said Don.

Part of the PSA was filmed at Don’s New Beginnings Boxing class, which has been another valuable source of support for the couple. “We live in a rural community without many resources, so we greatly appreciate this PD boxing program, which was started with a Parkinson’s Foundation community grant,” said Don.

Don and Marie were still newlyweds when Don began to suspect that he had PD. He first noticed that his once impeccable handwriting had become smaller and harder to read. Handwriting changes can be one of the early signs of PD.

Initially, Don chalked it up to being retired and not writing as often. In the months that followed, however, coordinating activity between his brain and his hands become even more challenging.

On a vacation in Florida in 2011, Marie noticed that Don struggled with the lock for their bicycles — he couldn’t line up the top of the lock with the bottom.

“In the car that day, he told me, ‘I want you to look something up: Parkinson’s disease,’” said Marie. “He was already doing the research. I panicked and said, ‘wait a minute, why are we going to Florida? We need to get back to Atlanta and see a doctor.’”

Back at home, a neurologist confirmed the couple’s fears: Don indeed had Parkinson’s.

The news was especially difficult because Don and Marie already had extensive experience with degenerative illnesses. Each had been previously widowed after caring long-term for spouses who succumbed to health battles.

“The diagnosing doctor was a neurologist, but not a movement disorder specialist,” said Marie. “We were handed a prescription and told, ‘here are some drugs — come back and see me in about four months and we'll review your symptoms again.’”

Despite their discouragement in that moment, the couple approached PD with determination. They dove into action, seeking resources to help Don live a longer, healthier life. The first stop was the Parkinson’s Foundation.

“The Parkinson’s Foundation has so much helpful information,” said Don. “It offers so many resources for support and opens doors to the latest information and research. The Foundation has let me know I'm not alone in my fight.”

For Marie, the Foundation’s Global Care Network was game changing. “The Foundation helped us understand why finding a movement disorder specialist was so important. We ended up at Emory University [a Parkinson’s Foundation Center of Excellence] with great care and haven’t looked back.”

In successfully adjusting to their new reality, the couple finds that communication is key. “When I was first diagnosed, sometimes communications could be complicated,” said Don. “I like to do things for myself when I can, and Marie is often quick to jump in to help.”

One evening, as the couple dressed for an event, Marie saw Don struggling with the buttons on his shirt. “I just reached up and fastened the buttons,” said Marie. “I remember that he took my hands gently and he said, ‘you know what, why don't you let me ask you when I need help.’ We made an agreement right then and there that we both would ask for help when it was needed instead of assuming.”

Don and Marie embrace outings with friends and exercise as ways to help manage the movement and non-movement symptoms of PD while nurturing their relationship. Together, they travel the world. They enjoy hiking, fishing, biking and dancing. “Don bought me ballroom dance lessons when we were first married. We love to dance,” said Marie. “Parkinson's has interrupted that just a little bit because of balance but we often find ourselves slow dancing in the kitchen.”

Don’s advice to everyone in the PD community is to fight. “With PD, there will be good days and bad days. Be active in body, mind, and spirit. Communicate honestly with your family, friends and care partners. Fight hardest when you feel your worst.”

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

My PD Story

People with PD

Susan Brown

When Susan Brown of Atlanta, GA was first diagnosed with Young-Onset Parkinson’s disease (YOPD), she thought first of her 78-year-old father who lives with Parkinson’s. “I decided early on that I wouldn’t make assumptions about my path relative to my father’s progression, and I would find a community of people with Parkinson’s and caregivers to join,” she said.

Susan found that community in the Parkinson’s Foundation and hopes that her appearance in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) will help others with PD find their community.

In the four years since her diagnosis, Susan is settling into the reality of living with a progressive neurodegenerative disease.

“When I was first diagnosed, I needed to find my Parkinson’s village,” said Susan. “The Foundation has provided a framework for me to focus on putting a face to Parkinson’s disease. It is a marathon that affects the whole family, and it is me.”

Helping the Parkinson’s community is meaningful to Susan. “Serving on Parkinson’s Foundation Georgia Advisory Board has given me a sense of purpose and a way for my family to rally around the hope that a cure is on the way,” she said.

For two years prior to her diagnosis, Susan’s doctors chased down symptoms that included a stiff hand, achy shoulder, tremor in her left foot and fatigue. “I strongly suspected I had Parkinson’s because I had developed symptoms that resembled those of my father, who had been diagnosed in his fifties also,” said Susan.

Susan vividly recalls the moment she was given her diagnosis. “It was Halloween in 2017 and I was alone when the call came in,” said Susan. “I distinctly remember standing there wondering how I was going to manage being a mother of two teenagers, a caregiver for my father, a wife, a friend, and a colleague at the Atlanta Speech School while dealing with Parkinson’s.”

Susan worried about how the news would impact her family. She said, “How would I tell my parents who would worry about me constantly as soon as I told them? I didn’t want to sign up my husband for a future that would look very different than what we envisioned.”

Modifying her lifestyle has helped Susan cope, but she is honest about how challenging her new normal can be.

“I take 20 pills a day. I exercise (and I’m not an exerciser), and I battle brutal insomnia,” said Susan. “Most days, my Parkinson’s is at the top of my mind. There are very few moments when I forget I have it, but I have an excellent team of doctors, trainers, family, and friends that helps me through it all.”

Susan is proud to celebrate her supportive community each year at Moving Day Atlanta. In 2021, she was Atlanta’s top individual fundraiser. Her team members included friends and family from around the world. A key to her success is asking each of her contacts to share her team page with nine people since every nine minutes, someone is diagnosed with Parkinson’s in the U.S.

“Moving Day is an opportunity to celebrate our friends and family who walk with us on the Parkinson’s journey,” said Susan. “Our team, the Atlanta Movers and Shakers (pun intended), just finished participating in our fourth walk, and I’m proud to share that we raised more than $28,000 this year for the Foundation,” said Susan.

Susan approaches life, no matter how challenging, with optimism. She said, “Not long after being diagnosed, I attended a birthday party where I spent joyful hours dancing with friends. A friend recently reminded me to keep dancing, and I plan to!”

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

Raise Awareness

Join the Parkinson's Revolution

Mar 31, 2021

Parkinson’s Revolution is an indoor cycling experience that combines passion, determination and community to generate awareness and advance the Parkinson’s Foundation mission of making life better for people with Parkinson’s disease. Parkinson’s Revolution is back for its second year and riders are already pulling out their fitness gear and getting ready to get back in the saddle to raise funds and awareness for the Parkinson’s Foundation.

Revolution participant Adam Mizock is excited to be back in the saddle, virtually connecting and training with riders across North America. Adam defends his title this year as the top 2020 Parkinson’s Revolution fundraiser, having raised $12,500 in its inaugural year. “People actually appreciate being asked to give to a good cause,” he said. “Small gifts really add up and spread good feelings all around.” Adam suggests using social media, email and holiday card lists as starting points. “When you ask for donations, remember to tell people why you’re doing it. Your story matters.”

This year, Parkinson’s Revolution will take place in 25 cities around the United States on June 12. To participate, simply find your city, register, start fundraising and join us in-person or virtually on June 12. Riders who prefer to ride virtually from home can choose the city nearest to them or register for the national team - Parkinson's Revolution USA. Riders of all abilities are invited to attend.

“This is a great opportunity, and I wouldn’t miss it,” said Adam, who uses exercise as medicine to manage his Parkinson’s. “The ride brings people together to help fight Parkinson’s, but there is more to it. It is important that we keep our eyes on the future, and that we live high quality lives today.” To better serve our Parkinson’s community, the virtual ride will be available on June 12 with two options – a traditional spin class lead by Fred Smith and a Parkinson’s friendly class hosted by Pedaling for Parkinson’s instructor and Foundation volunteer, John Tomeny.

For those unsure if they want to clip in, “Use the ride to incentivize your own exercise plan, meet people, and do something good in the world today,” Adam said.

Use our Fundraising Toolkit - full of email templates, social media posts, and even texts - to inspire your community to donate to your ride.

Join the Parkinson’s Revolution on June 12. Virtual and contactless in-person events will take place across the nation. Sign up today at ParkinsonsRevolution.org.

Raise Awareness

National Volunteer Week: Five Volunteers Making a Difference

Apr 19, 2021

We rely on the energy, skill and passion of our volunteers to help make life better for people with Parkinson’s disease. In honor of National Volunteer Week, we are sharing the stories of five standout volunteers who have made a real impact by lending their time and expertise to the Parkinson’s Foundation.

Glenn Kasman, People with Parkinson’s Council member

Glenn Kasman is proud to volunteer with the Parkinson’s Foundation. He was diagnosed with Parkinson’s in 2015 and experiences a variety of motor and non-motor symptoms that affect many aspects of his life. When he was diagnosed, the Parkinson’s Foundation provided him with educational resources and tools to live better with PD. Since then, Glenn has participated in community awareness and fundraising events, community grant reviews, the development of best practice care guidelines, research, outreach programs, advocacy and more. Perhaps most notably, Glenn is one of the current members of the Parkinson's Foundation People with Parkinson's Advisory Council. When reflecting on his volunteer impact, Glenn said, “Volunteering is a way for me to give back and help others. I have learned much, made friends and received more back than I could have imagined. I am sure that no matter what type of volunteer activities you might like, the Foundation has a place for you too!”

The People with Parkinson's Council ensures that the perspective of people living with Parkinson’s is integrated into our program development and priority setting. To learn more about the Council visit Parkinson.org/Council.

Jenna Palek, Parkinson’s Champion

Jenna Palek loves running, and she is making a difference while putting in her miles! Jenna registered for Champions @ Home after her father was diagnosed with Parkinson’s disease, and she now runs marathons while fundraising for the Parkinson’s Foundation. Jenna says, “Fundraising for Parkinson's Champions gave me a way to educate others, raise awareness and make a financial contribution towards fighting the disease. It also connected me with others who are going through the same situation.” This past year, several members of Jenna’s family joined her team. “It gave us something fun and purposeful to bond over during a time that was otherwise kind of bleak due to COVID.”

Join our virtual Champions @ Home team with Jenna! Track your mileage online and compete with runners across the country while raising funds and awareness for people living with Parkinson’s. Register here to #Run4PD

Kathy McMurray, Aware in Care Ambassador

Kathy McMurray became an Aware in Care Ambassador because she wanted to help the three out of four people with Parkinson’s who do not receive their medications on time when hospitalized. As an Aware in Care Ambassador, she works directly in her local community in the Evansville, Indiana area to educate the public and share Parkinson’s Foundation resources. Kathy is working to create connections at Deaconess Hospital in Evansville and change the culture and policies around Parkinson’s care. When asked about her impact, she said “We have made the physicians and staff aware of the critical need for Parkinson's disease medications to be given on the patient's schedule. I am so thankful to advocate for Parkinson's in my city and to volunteer for an organization that honors its volunteers.”

To order your own Parkinson’s Hospital Kit, visit Parkinson.org/AwareInCare. Learn more about becoming an Ambassador at Aware in Care Ambassadors.

Melanie Lomaglio, Moving Day Jacksonville

Melanie Lomaglio recently completed her third Moving Day Jacksonville event. She says, “Despite the pandemic, I was determined to raise more money than ever before! I know how important it is that the Foundation keeps their mission moving forward during this time of isolation.” Melanie’s business, STARS Rehab, and surrounding St. Augustine community rallied together to sell hundreds of raffle tickets for the Foundation. They celebrated Moving Day Jacksonville with a socially distanced beach walk on event day. Inspired by her participation, Melanie applied for and received a Parkinson’s Foundation Community Grant, enabling her to directly impact people living with Parkinson's disease. Since July 2020, Melanie and STARS Rehab have reached over 50 people with Parkinson's and provided over 150 free voice, nutrition, educational and movement classes in a COVID-friendly environment!

Join Melanie and thousands of others this year as we continue to make a difference in the lives of people with Parkinson’s. Find a Moving Day near you at MovingDayWalk.org or join Moving Day USA virtually from anywhere in the world.

Shirley Chan, Special Events Volunteer Intern

Shirley Chan supports Parkinson’s Foundation special events across the country, putting on amazing events and raising critical funds for people with Parkinson’s. Shirley says her volunteer work with the Foundation has impacted her in such a positive way. “I have learned more about the mission of the Parkinson's Foundation and seen what really goes into a fundraising event from the backend. Working on different events has allowed me to see what a difference we are making in the community, and I'm glad to be part of that collaborative effort.”

Visit Parkinson.org/InYourArea to find your local Parkinson’s Foundation chapter and learn more about special events taking place near you, or learn more about Parkinson’s Foundation Volunteer Internships by contacting Volunteer@Parkinson.org.

Be sure to check out Parkinson.org/Volunteer to learn how you too can make an impact or contact Volunteer@Parkinson.org.

Raise Awareness

Our Parkinson's Books Are Now on Kindle!

Jan 11, 2021

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:

Cognition: A Guide to Thinking Changes in Parkinson’s Disease

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.

Raise Awareness

Tuning into Mental Health this Month and Beyond

May 03, 2021

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

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

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

Managing Anxiety with PD

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

– Dr. Roseanne Dobkin

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

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

Depression in Parkinson's

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

– Dr. Irene H. Richard

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

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

Mental Health in a Medical Setting

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

– Kara Barton, MSW, LCSW

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

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

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

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

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

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

More Than a Movement Disorder: Addressing Mood and Coping

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

– Jessica Shurer, MSW, LCSW

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

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

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

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

– Jennifer Goldman, MD, MS

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

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

Neuropsychological Evaluations for PD

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

– Travis Turner, PhD

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

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

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

– Joseph Quinn, MD

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

Hallucinations and Delusions in Parkinson’s

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

– Martha Nance, MD

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

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

Tips for Daily Living

Staying Well: Tips for Mental Well-being and Memory

May 11, 2021

Family and friends sharing a meal around a table

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

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

Parkinson’s and Cognitive Changes

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

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

Older woman and younger woman looking at photos

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

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

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

Staying Well

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

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

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

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

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

Other Causes of Cognitive Change

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

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

Aging, however, can impact:

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

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

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

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

Other medications can interfere with cognition too, including:

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

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

Discover More

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