When a person shows up in a doctor’s office with symptoms that may be related to Parkinson’s disease (PD), the diagnosis may not be obvious since symptoms often differ from person to person or could be indicative of other conditions. It’s not uncommon for people go from doctor to doctor over months or even years before they get a correct diagnosis. A visit to a movement disorders neurologist may result in a faster PD diagnosis, but unless PD is suspected, that may not be the first medical specialist on someone’s list.
For some, a Parkinson’s diagnosis comes as a relief; an explanation for previously unexplained symptoms. Others may be stunned, struggling with what the future may look like. As you begin processing your emotions, which can be wide-ranging, it’s important to know you are not alone. In this episode, Gretchen Rosswurm describes her experience with getting a PD diagnosis and how she dealt with it. One way was to take advantage of many of the resources of the Parkinson’s Foundation. Gretchen is now the Chair of the People with Parkinson’s Council of the Foundation. Certainly not everyone accepts or approaches a new PD diagnosis in the same way. So Anna Hedges relates some of the questions she has fielded from newly diagnosed callers as a Parkinson’s Foundation Helpline Information Specialist for the past ten years.
Released: October 6, 2020
Gretchen Rosswurm was diagnosed with Parkinson’s Disease in 2017 at the age of 52. Her commitment to the Parkinson’s community springs from a deep history of PD in her family while at the same time believing that what seems an impossible challenge creates opportunities for connection, healing and hope. Professionally, Gretchen’s work experience centers around corporate philanthropy. She also blogs and writes short fiction. She lives with her family in Dallas. Gretchen was selected to join the Parkinson’s Foundation People with Parkinson’s Council in 2018 and was elected as Chair in 2020 after serving as vice chair.
Anna Hedges, MSW is a Parkinson's information specialist with the Parkinson's Foundation Helpline. She has a Master of Social work from Washington University in St. Louis and has been working on the Parkinson's Helpline for over 10 years. She enjoys interacting with patients and families and witnessing their amazing resiliency.
In April 2023, shortly after turning 56, I was diagnosed with Parkinson’s disease (PD). At the time, I was immersed in a demanding career and didn’t have time for Parkinson’s. Wasn’t there a pill or a shot to make it go away? Well, no. I didn’t immediately accept that I was on a journey — I had a lot to learn.
Looking back, I’d been on that journey for years without realizing it. About five years before my diagnosis, my handwriting grew smaller and messier. I couldn’t hold a pen quite right. I googled it: “classic symptom of Parkinson’s.” No way, I thought. I dismissed it.
Not long after, I began to feel “off” — a kind of baseline anxiety that didn’t feel like regular stress. That eventually passed with treatment. Then, while walking one day, I noticed my left arm just hanging there. Wasn’t it supposed to swing? I checked again: “classic symptom of Parkinson’s.” Still, I pushed it aside. I was too young, I told myself.
Then came a twitchy thumb. A foot tremor. I finally asked my primary care doctor, “Could this be Parkinson’s?” The response: “Possible, but not likely.”
When the tremor worsened, I was referred to a movement disorders specialist (a neurologist with specialized training in Parkinson’s and movement disorders). After an exam and a DaTscan, I had my answer. It was Parkinson’s.
What next? I turned to the Parkinson’s Foundation to bridge the gap between diagnosis and this unexpected detour in life.
Its library of resources helped me better understand this complex, often misunderstood disease. The Helpline was invaluable. I joined a local support group and connected with others online, learning from their experiences and offering my own.
Two years into this journey, what advice would I give? First, don’t go at it alone. Learn everything you can and connect with others. Next, exercise — early and often. And finally, don’t ignore the little signs. That left arm might be trying to tell you something.
This article introduces five policies at the federal and state levels directly influence the lives of people with Parkinson’s disease (PD). It highlights how:
Increased federal and state funding is essential to accelerate Parkinson’s research and support breakthroughs.
Policies directly influence access to timely high‑quality Parkinson’s care and can speed up a PD diagnosis.
Environmental health regulations, such as banning paraquat, can reduce risks linked to developing Parkinson’s.
When you’re living with Parkinson’s disease (PD), the decisions made on Capitol Hill and in state capitals across the country can directly shape daily life. Whether it’s the funding that drives breakthrough research, the policies that determine whether you can access a specialist, or the environmental protections that could prevent PD in the first place, policy is personal.
Last month, that truth came to life in a powerful way. From March 15-18, more than 300 advocates from across the country gathered in Washington, D.C. for the 2026 Parkinson’s Policy Forum, an event that united people living with PD, care partners, clinicians, researchers and advocates to carry the message of the Parkinson’s community to Congress.
The Forum was an inspiring reminder of what we can accomplish when we speak with one voice. While the Forum has wrapped, the momentum it generated is just beginning. The policy priorities that advocates championed on Capitol Hill affect every person living with Parkinson's and there are still powerful ways to make your voice heard.
1. Implementation of the National Parkinson’s Project
The National Parkinson’s Project is a historic milestone: the first-ever federal initiative dedicated to Parkinson's disease. Congress passed a law to create the National Parkinson’s Project in 2024, but that is only the beginning. Implementation requires continued pressure and advocacy to ensure the initiative moves forward without delay.
The Parkinson's Foundation is working to protect this landmark project and build momentum as the government moves to put it into action. That means urging the Department of Health and Human Services to seat the National Parkinson’s Project Advisory Council so they can begin their vital work to help prevent, diagnose, treat and ultimately cure Parkinson’s and recommendations to improve quality of life for those living with PD. This project represents a generational opportunity, and advocates like you help keep it on track.
2. Increased Investment for PD Research
We are closer than ever to developing treatments that could slow or stop Parkinson's, not just manage its symptoms. But that progress depends on sustained investment. Federal support for PD research has not kept pace with the rapid growth of the disease, and funding uncertainty puts critical breakthroughs at risk.
The Parkinson's Foundation is advocating for increased investments, including $600 million a year in National Institutes of Health-funded Parkinson's research, as well as complementary investments at the state level that build on and expand what federal funding makes possible.
Every dollar invested in research brings us one step closer to a cure — and every advocate who makes the case to a lawmaker helps secure that funding.
3. Timely, Affordable and Quality Parkinson’s Care
Parkinson's is the fastest-growing neurodegenerative disease, with 90,000 new diagnoses every year. Yet access to quality care is increasingly out of reach for many people. Shortages of movement disorders specialists mean long travel distances. Coverage gaps and unpredictable costs create added stress. Quality of care varies widely depending on where you live.
The Parkinson’s Foundation supports policies that change this reality by making it easier to diagnose and treat PD, stabilizing and expanding telehealth coverage to reach people wherever they are, and ensuring robust public health programs that support both care and research. Quality Parkinson’s care should not be determined by your zip code.
Whether it’s expanding telehealth access or strengthening Medicare coverage, these policy changes have a direct impact on your ability to get the care needed to live well with PD.
4. Address Environmental Health Threats Linked to Parkinson’s
The causes of Parkinson’s are complex, but research has linked environmental risks — including certain chemicals like paraquat and trichloroethylene (TCE) — to an increased risk of developing PD. Even though paraquat has been banned in more than 70 countries, including China, this pesticide is still sold and used in the U.S.
The Parkinson’s Foundation is pushing the Environmental Protection Agency and state governments to end the use of paraquat in the U.S. This policy change could prevent countless future cases of PD, particularly in rural communities where pesticide exposure is most common.
Policy change can protect future generations from ever receiving a Parkinson's diagnosis. That is a powerful thing to advocate for.
5. Education: Access to PD Information
Knowledge is power, especially when it comes to early diagnosis and living well with Parkinson’s. Yet too many people with PD, their families, and even their healthcare providers lack access to timely, high-quality, tailored information about the disease.
The Parkinson’s Foundation is advancing policy changes that improve PD education for people with Parkinson’s, care partners and healthcare professionals. Better-informed healthcare professionals mean earlier diagnoses and better care. Better-informed patients and families mean more confident, empowered decision-making at every stage. Access to PD information also support prevention, helping communities recognize risk factors and take action before a diagnosis occurs.
People with Parkinson’s are at the center of everything we do, and ensuring they have the information they need is one of the most meaningful ways policy can improve lives right now.
Your Voice Can Change Everything
There is a direct connection between the actions we take today and the future we want to see. The research funding secured this year can become the new treatment option available in five years. The telehealth policy passed today means your neighbor in a rural county can see a specialist next month. The paraquat ban advocated for now could mean one fewer diagnosis in your community.
Ready to make a difference? Visit our Advocacy Center to join our Advocacy Network, contact your representatives, and take action on the issues that matter most to the PD community today.
On Saturday, May 2nd at 9:30am, come walk a mile to raise awareness for Parkinson's disease. Donations go to the Parkinson's Foundation New Jersey & Pennsylvania Chapter and Rock Steady Boxing Toms River.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
Understanding Cognition & Thinking Changes in Parkinson’s
March 19, 2026
Changes in memory, attention, and problem-solving are common non-motor symptoms of Parkinson’s that can affect daily life, relationships, and independence. In this webinar, we’ll explore how Parkinson’s impacts cognitive function and what veterans and care partners can do to recognize, manage, and adapt to these changes. We'll also discuss when to seek additional support, how the VA addresses cognitive health, and which tools and therapies may help maintain brain function and quality of life.
Anita Sim, PhD
Neuropsychologist, Minneapolis VA Health Care System
Christy Becker, MA, CCC-SLP
Speech-Language Pathologist, Minneapolis VA Health Care System
Konner Kielman, OTD, OTR/L, LSVT BIG Certified
PD/MD Staff Occupational Therapist, Minneapolis VA Health Care System
My PD Story
People with PD
Kim Lundgreen
My name is Kim Lundgreen. I just turned 68. I was diagnosed with Parkinson’s disease (PD) in 2017 at the University of Utah’s Movement Disorder Clinic, a Parkinson’s Foundation Center of Excellence, in Salt Lake City. I remember thinking, “What a strange name for a place.”
My wife, Mindy, was 50 at the time. She cried when we heard the diagnosis. I was stunned. Shocked.
Prior to my diagnosis, running was more than exercise. It was my therapy, my prayer time, personal solitude time, my way of solving the world’s problems. I was an ultramarathon runner with nearly 50 marathons and ultramarathons under my belt. I ran the St. George Marathon 25 years in a row. I once beat ultramarathon legend Dean Karnazes at the finish line there during his famous 50/50/50 tour. That moment qualified me to run Boston two years later.
When I received the diagnosis, my first reaction was dramatic but honest: “If I can’t run anymore, I’ll go to Yosemite and base jump off El Capitan without a parachute.” That’s how much running meant to me.
Parkinson’s had forced me to stop running altogether. Symptoms like rigidity (stifffness), cramping and neuropathy made training nearly impossible.
Then, last June (after Cassie Webster, my Rock Steady Boxing coach kept encouraging me for years to try) I completed the Logan Peak Trail Run with a right sprained ankle, an ultra-distance race of 28 miles with over 7,000 feet of elevation gain with virtually no training. It was my first race in five years.
I fought my way back.
A news article in the Herald Journal highlighted the run. KSL News out of Salt Lake City, after getting wind of my seemingly impossible feat, covered my successful summit of the Middle Teton via the Southwest Couloir, which I achieved just a couple weeks prior. We climbed at night with headlamps, ice axes and micro-spikes. My “soul brother” David Toone saved my life more than once on that descent as my symptoms kicked in. Exhaustion, vertigo and total fatigue set in hard.
Throughout everything, I needed information about Parkinson’s and I found on Parkinson.org — I love the website and it has been very helpful for me.
Two years after my diagnosis, in the fall of 2018, Mindy received devastating news of her own: serious ovarian cancer. We had no warning, and the shock was overwhelming. Suddenly, we were both facing life-threatening diseases, and the reality of our situation hit hard. We both wept when Mindy’s doctor gave us the grim news while we were shopping together.
In that moment, I felt a heavy burden of responsibility. I had to be strong for Mindy, and I also had to manage my own Parkinson’s. We were both in for the fight of our lives.
Mindy was only 52, and I had just turned 62. Our dreams for our golden years felt shattered. I remember lying awake that night, overwhelmed by a sense of doom. I prayed to God, “Why now? Isn’t Parkinson’s enough for us?”
I lost Mindy, my beautiful wife of 23 years, in 2024 to ovarian cancer after a brutal five-year fight. She was only 57. We were both strong, active and healthy. We mountain biked, ran trails, paddle-boarded, lifted weights, practiced yoga and stayed committed to our physical and spiritual health.
Experiencing loss with Parkinson’s is horrible, however movement and exercise — especially weight-lifting, trail running combined with my Rock Steady Boxing now — are so vital for me in providing hope and light each new day!
A few months ago I spoke to the Salt Lake City support group alongside the doctors from University of Utah neurology, a Parkinson’s Foundation Center of Excellence, and that was very powerful for me and for the audience. It was a win-win.
Parkinson’s disease is relentless. The only real weapon against Parkinson’s is movement. Exercise, especially strength training and cardio, has been shown to slow the progression of the disease.
I’ve made intense exercise a daily part of my routine, seven days a week. It’s the “silver bullet” that keeps me fighting, and I’m convinced it’s the key to maintaining a good quality of life while living with PD. Also, it is so helpful to me in coping with Mindy’s death.
Now, I carry her with me through every climb, every run, and every battle with Parkinson’s.
Breaking News: $82.2 Billion and Rising, Parkinson’s Economic Burden Toll Arrives 10 Years Early
🧠 What will you learn in this article?
This article explains the results from a recent study on the 2024 economic burden of Parkinson’s disease (PD) and atypical parkinsonism (AP) in the U.S. Key highlights include:
The economic burden of Parkinson’s and AP has grown faster than researchers previously estimated.
$23.8 billion is attributable to direct medical costs, including hospitalizations, outpatient care and medications.
Indirect and non-medical costs, including missed work, unpaid care partner time effort and home/vehicle modifications were estimated to be $58.4 billion total.
The economic burden of Parkinson’s disease (PD) and atypical parkinsonism (AP) has grown faster than researchers previously estimated, reaching nearly $82.2 billion in 2024. Several Parkinson’s organizations, including the Parkinson’s Foundation, and industry partners backed and reported these findings in a new study.
This new study, The Economic Burden of Parkinson’s and Atypical Parkinsonism in the United States, builds upon similar research conducted previously on 2017 data, offering valuable updates and insights into how the economic burden has changed in the last seven years.
There were an estimated 1.1 million people with PD living in the U.S. in 2024
$23.8 billion is attributable to direct medical costs, including hospitalizations, outpatient care and medications.
$58.4 billion reflects indirect and non-medical costs, including lost income, disability and unpaid caregiving.
"It is alarming to see the societal cost to treat PD continue to grow. This new study further underscores the extreme financial burden to not only society, but to the families of those living with PD. Parkinson’s remains one of the most expensive diseases to care for yet the U.S. government invests less than 1% of this cost in searching for better treatments and cures through research. Disease-modifying breakthroughs are within reach, that’s why together with the Parkinson’s community, the Parkinson’s Foundation is urging for an increased investment of at least $600 million annually for Parkinson’s research at NIH," said James Beck, PhD, Chief Scientific Officer at the Parkinson's Foundation.
Direct Medical Costs of PD Remain Steady
To calculate direct medical costs attributed to PD, the study authors compared average medical expenses by those with PD against a similar population (age, gender, ethnicity, insurance coverage) without PD. The difference between the two amounts was determined to be the excess medical cost due to PD.
In 2024, the average direct costs of PD were $18,859 per person across all age groups. These amounts are slightly lower than the average direct cost calculated in 2017, which was $24,439 per person at that time.
However, this difference is primarily due to increased medical expenses for the non-PD comparison group, possibly because of new and popular high-cost treatments such as GLP-1 agonists. Overall medical costs have increased 17% in the past 7 years, and the costs of PD may have only grown slightly slower than that.
Non-Medical and Indirect Costs Have Significantly Grown Since 2017
While direct medical costs of PD have remained relatively steady in the past seven years, estimates of non-medical and indirect costs have grown nearly twice as much in that time.
Non-medical costs related to PD, such as daily non-medical care and home or vehicle modifications, have more than doubled in the past decade, with the average person with PD paying $15,614 in non-medical expenses in 2024.
This dramatic increase is due in part to the study authors identifying new major contributors to economic burden, including housekeeping services, financial and legal planning services and accessible home purchase expenses. They also classified out-of-pocket expenses not covered by insurance such as counseling, supplies and therapeutic activities as costing people with PD on average $4,675 per person in 2024.
Indirect costs include the loss of wages or earnings due to the reduced ability to work attributable to PD (reduced hours, sick time spent, etc.). These costs increased 69% since 2017, going from $7,387 to $12,554 per person per year.
Taken altogether and including indirect cost burdens on care partners, the non-medical costs attributable to PD were $40,290 per person in 2024, up 58% from the 2017 amount of $25,558. This amount is greater than similar costs of other conditions such as diabetes, which had reported an indirect cost per person with diabetes of $4,500 in 2022.
The U.S. Population of People with PD and Their Care Partners is on the Rise
In 2017, the study authors estimated that the number of people with PD in the U.S. was 1.04 million. The 2018 Parkinson’s Foundation Parkinson’s Prevalence Project estimated that 1.2 million in the U.S. would be living with PD in 2030. This new study estimates the number of people with PD in the U.S. in 2024 to be 1.1 million, with the country very likely to reach the 2030 estimate years earlier than anticipated.
The study also found that:
Nearly 40% of people with PD receive unpaid care from a care partner, and people with PD have an average of 2.3 care partners. This suggests that the number of PD care partners in the U.S. is nearly equal to the number of people living with PD.
20% of the care partners reported taking early retirement or reduced work hours due to their care provision.
34% of the care partners reported missing or cancelling their own routine health care visits for similar reasons.
Why is this study important?
In 2019, researchers projected that the economic burden of PD would not reach $79 billion until 2037. However, the U.S. has already hit that mark. Current projections assume incidence holds steady — if it continues to rise, the total economic burden will rise faster than currently projected.
Understanding and reevaluating the annual economic toll on people with PD, their care partners and the government strengthen the case for increased federal investment in Parkinson’s research and care. The Parkinson’s Foundation policy and advocacy priorities reflect these economic burden findings, as the Foundation is currently working to:
Increase federal research funding, including $600 million a year in National Institutes of Health-funded Parkinson's research.
Promote prevention strategies, including efforts to reduce exposure to environmental risks tied to Parkinson’s including chemicals like paraquat and trichloroethylene (TCE).
Implement the National Parkinson’s Project — a coordinated federal initiative to improve prevention, diagnosis, treatment and care.
Knowing the economic burden of Parkinson’s also allows us to better serve people with PD and their families with programs to help them live better with the disease, touching on areas they are most concerned about and where we can have the most impact.
This study was sponsored by The Michael J. Fox Foundation for Parkinson’s Research (MJFF), with support from the Parkinson’s Foundation, industry groups (ACADIA and AbbVie), CurePSP and the American Parkinson Disease Association.
The Michael J. Fox Foundation, with support from the Parkinson’s Foundation and other community organizations and industry partners, used data from public databases including Medicare, the Centers for Disease Control and Prevention and the Census Bureau. Several Parkinson’s organizations, including the Parkinson’s Foundation, assisted with data collection through sharing a survey across websites, social media networks and email communications.
Join us on Friday, April 10, 2026 for the first annual Move & Mingle Phoenix Seeds of Change Luncheon at Orange Tree Golf Resort! Join us for an afternoon of cocktails, food, music and connection as we continue the fight against Parkinson's disease.
Honoree: Molly Stine, Seed for Success
Meal: Plated lunch, pre-set at each seat
Pre-lunch reception begins promptly at 11 a.m. with the luncheon beginning at 12 p.m.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
The landscape of Parkinson’s treatment is constantly evolving, with exciting advances in medications, therapies, and technologies aimed at improving quality of life and symptom management. In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities. Learn how to access treatments through the VA system and understand which options may be right for you or your loved one. This session is designed to empower veterans and care partners with up-to-date knowledge and tools for informed decision-making.
Speakers
Dr. Pavan Vaswani
Associate Program Director, Movement Disorders Fellowship, Department of neurology, University of Pennsylvania
Attending Neurologist, Corporal Michael J. Crescenz Philadelphia VA Medical Center, University of Pennsylvania
Dr. George Kannarkat
Assistant Professor of Neurology, Hospital of the University of Pennsylvania
Neurology Consultant, Penn Neurology, Grandview Hospital, Sellersville, PA
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
The Parkinson's Foundation is proud to partner with U.S. Department of Veterans Affairs to improve the health, well-being and quality of life for veterans with PD.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
