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After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and how physical and speech therapy can help manage these changes.
Speakers
Dr. Samantha Carty, PT, DPT
Shannon Smith MS, CCC-SLP
Agenda:
12 p.m. – check-in, visit with our exhibitors, lunch
1 p.m. to 3 p.m. – Managing Changing Symptoms presentations
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
Meet Our Volunteers Making Life Better for People with Parkinson’s
Every Parkinson’s Foundation volunteer helps us make a difference in the lives of people with Parkinson’s disease (PD). This year, we celebrated our top volunteers with a prestigious national award. Meet our 2023 National Volunteer Awardees and let their empowering stories inspire you.
Paul Oreffice Volunteer of the Year
Jim Morgan
Florida Chapter
Jim was diagnosed with Parkinson’s disease 16 years ago. Shortly after, he found the Parkinson’s Foundation. Since his first encounter, Jim has been continuously involved with the Foundation and is a leader in helping us fulfill our mission to make life better for people living with Parkinson’s. He demonstrates the selfless and valuable contributions that volunteering makes to our community. He has made a substantial impact, not only in his own community but on a national scale.
“To be associated with an organization that is truly making a difference in people’s lives every day is an honor and a privilege. I am sincerely honored and humbled to be selected as this year’s Paul Oreffice Volunteer of the Year.”
Mark is a Parkinson’s Foundation Ambassador and a member of the Southwest Advisory Board. After being diagnosed with young-onset Parkinson’s, he has made a dramatic initial impact in the Parkinson’s community and goes beyond what is expected to help the Foundation reach more people. He is passionate about helping the Foundation make a long-term impact.
"I am truly honored and humbled to receive such an award! Especially when so many people are working to raise awareness and to help people with Parkinson's across the country. I wouldn't receive an award like this without the love and support of my close friends and fellow "Parkies" who inspire me with their strength and who help lift me up when I need it."
Karan raised more than $80,000 as a Parkinson’s Champion upon completing the elite World Marathon Challenge this year. That’s seven marathons in seven continents in seven days.
“In part, it is to test myself and my boundaries mentally and physically. More importantly, it is to raise awareness and funds for Parkinson’s Foundation and to honor my dad, who has been living with this condition for the past six years.”
His amazing accomplishment puts him among just 200 people in the world who have completed this challenge, and he was able to spread awareness as he shared his journey, appearing on several news stations. In a special moment and the culmination of all his hard work, he presented all seven finishing medals to his hero and inspiration, his father, Rajit. The funds Karan raised help the Parkinson’s Foundation advance research that can lead us to a cure.
BJ serves the Parkinson’s Foundation in numerous impactful ways — this year, he has completed more community service hours than any volunteer, coming in at 189 hours! He serves on the People with Parkinson’s Advisory Council, Gulf Coast Chapter Board, as Chair of the Moving Day Baton Rouge planning committee and a Parkinson’s Foundation Ambassador.
"It isn't about the number of hours; it is about the number of connections made and resources provided. I will provide as many hours as I am capable of to maximize those connections whenever and wherever necessary."
Already a volunteer? Make sure you report your hours at Parkinson.org/Volunteer-reporting so you can be in the running for our community service award next year!
I’m Benjamin ‘B.J.’ Bement. I was diagnosed with PD in October 2013 at the age of 44.
I was employed at a chemical plant for 18 years. Leading up to my initial symptoms I had taken three rounds of strong steroids in 2012 in response to three health issues that include a pinched cervical nerve with neuropathy, severe bronchitis and an adverse reaction to blood pressure medication. I left work on New Year’s weekend unaware I would not be returning.
After the hives and swelling abated, my energy and stamina did not return. My fatigue grew worse. I could not walk more than 100 yards without feeling like I would collapse. I stabilized myself with a cane or hanging onto a shopping cart at the store. I was too weak to pass the pulmonary test to resume work.
I started an aggressive search for answers. Over the next 10 months, I would see 14 different specialists and make more than 100 visits to doctors’ offices or labs. I wouldn’t take, “I don’t know” for an answer.
My general practitioner took 14 vials of blood to conduct every test he could think of. They all came back negative. My cholesterol, blood pressure, blood sugar and everything else were okay for a man of my size.
About five months later, I picked up a CD, splaying my fingers out to grip the wide plastic case. My hand started wavering backward and forward. I immediately thought it was probably something neurological.
It took a couple of months to see a general neurologist. He pursued multiple sclerosis tests, which came back negative. He referred me to a movement disorders specialist (MDS) [a neurologist with specialized training], who ordered a DaTscan to ‘rule out Parkinson’s,’ but it was positive.
The MDS placed me on carbidopa/levodopa, which resulted in immediate improvement, confirming the Parkinson’s disease (PD) diagnosis. I was put on short term, then long term disability. Although I had good benefits, they wouldn’t last forever, so I hired a lawyer to handle my Social Security filing.
I entered the holiday season of 2013 without a path forward. I had a four-month pity party mourning the loss of my past life. After the last holiday and the last football game, I had nothing else to distract me.
I began to search online for answers. I stumbled across a support group on Facebook and commented on some posts. A wonderful person named Michelle Lane replied and invited me to Washington D.C. for a Parkinson’s Action Network conference and Hill Day. I had no idea what to expect and was scared to meet people who were further along than me.
After I arrived, I saw there was nothing to worry about. Over the next three days I saw many people with more advanced symptoms being extremely passionate, active and hopeful. This began my advocacy journey.
I have since worked with many organizations and committees. I am in my third year of serving on the People with Parkinson’s Advisory Council for the Parkinson’s Foundation, my first year on the newly formed Gulf Coast Chapter Board, and my fourth year as chair of Moving Day Baton Rouge.
I have many ideas that I would love to see take life. Although I have been in advocacy for almost 10 solid years, I feel I am just getting started.
I could not make this journey without my awesome wife Kelly, my family, my church family, my local PD support group members, and the Parkinson’s Foundation staff. Here’s to another 10 years of new beginnings.
In 2021, I was diagnosed with Young-Onset Parkinson’s Disease (YOPD)— a form of Parkinson’s that affects people 50 and under. What began as a devastating and isolating diagnosis has transformed into my life’s mission: to educate, advocate and inspire others navigating life with Parkinson’s.
My journey didn’t start with inspiration — it started with fear, grief and questions like, “Why me?” But through connection with the Parkinson’s community, I discovered strength, purpose and hope. Sharing my story online became my therapy and, eventually, my platform. Today, I’m proud to use my voice to empower others, dismantle stigma and create meaningful conversations around Parkinson’s disease.
Beyond advocacy, I’ve turned my story into a platform for motivation and education:
Public Speaking and Training: Delivering keynote speeches, workshops and motivational talks on resilience, advocacy and navigating life-changing diagnoses — even infusing a little humor in along the way.
Podcast Host: Creator of The Mark In The Park Podcast — available on Spotify, Apple Podcasts, iHeartRadio, Amazon Music and YouTube — where I dive deep into life with Parkinson’s.
Founder: Creator of MarkInThePark21.com, a resource hub for individuals and families impacted by Parkinson’s.
For me, advocacy is more than raising awareness — it’s about turning pain into purpose. My goal is to make Parkinson’s visible, relatable and hopeful, and to remind others that life after diagnosis is not over. It’s simply a new chapter.
On a Thursday evening in March 2007, one of my clients called and asked if I could travel from my home in Florida and be in California by noon the following day. He assured me that I would be home four days later.
As it turned out, I returned home six weeks later having closed one of the most complicated, contentious and stressful transactions of my legal career. By the time I finally made it back to Miami, FL, I realized that I had lost the ability to write my name and typing was all but impossible.
After seeing my general practitioner and an orthopedic doctor, I found myself at a neurologist. When the neurologist asked, “What can I do for you today”? I just laughed and I said “I think I have that disease — carpal tunnel syndrome.” He laughed back and said, “You have Parkinson’s disease.” He put the medication Azilect in my hand and said “Take this and if it works, then we will know that I am right.”
Little did I know that that was to be the beginning of this adventure that 16 years later I know to be Parkinson’s disease (PD).
I had heard about Parkinson’s disease, but no one in my family had it. In fact, I didn’t know anyone who had Parkinson’s disease. Thankfully, I didn’t have the crushing depression or debilitating anger that many people experience upon being diagnosed. I suspect that I didn’t know better, but I acknowledge that those reactions are real and must be addressed early in the diagnosis.
That’s where a referral to the Parkinson’s Foundation can be life changing. Through its initiative for those newly diagnosed, the Foundation fills the void of critical information most people with PD lack regarding their recent diagnosis. Often times, the diagnosing physician is too busy to provide a sufficient explanation on how to live a quality life with Parkinson’s disease.
Shortly after I was diagnosed, I was introduced to the Parkinson’s Foundation. My wife and I were invited to participate in a weeklong retreat for those newly diagnosed and their care partners. There, my wife and I became yoga fanatics. It was that introduction by the Foundation to the power of exercise in the fight against Parkinson’s that forever changed the trajectory of the disease for me.
Since my first encounter, I have been continuously engaged with the Foundation. I have participated in virtually every Moving Day Miami. I’ve spoken on behalf of the Foundation at many events.
It was that early introduction to the Parkinson’s Foundation, however, and their vast resources of information and support, as well as an incredible community of like-minded people, that really attracted me to the Parkinson’s Foundation. The mission of the Foundation to make life better today for people living with Parkinson’s all while advancing research toward a cure really resonates with me.
I have spent the last several months traveling across the country with my friend, Scott Rider, filming a documentary for a project titled Parkinson’s Across America. Our hope is to provide an informative, yet personal look at what it means to be living with Parkinson’s and to remind people that they can live long and productive lives despite their diagnosis.
While many of the people I have met share stories that include aspects of tremendous heartbreak and difficulty, each offers incredible hope and encouragement to those of us in the Parkinson’s community. One of the common sentiments that resonates so clearly with me is that, despite the difficulty that people living with Parkinson’s disease cope with every day, there is an incredible sense of gratitude for people, like the people at the Parkinson’s Foundation, who make it their life’s work helping people with Parkinson’s live better lives today.
The people of the Parkinson’s Foundation share a passion and commitment for making life better for people living with Parkinson’s that is unrivaled. Without a doubt, they are changing lives. I’m here to tell you that they certainly have changed my life and, for that, I am eternally grateful.
To be associated with an organization that is truly making a difference in people’s lives every day is an honor and a privilege. I am sincerely honored and humbled to be selected as the Paul Oreffice Volunteer of the Year.
We have reached capacity for our in-person program. Please register to join us at-home via Zoom or contact GreatLakes@parkinson.org to get added to our waitlist.
A balanced diet is important for people with Parkinson’s disease. Learn about foods that may help ease symptoms and support brain health in addition to understanding how some foods can affect the way Parkinson’s medications work. This program will also address the latest information on the gut and brain connection with PD.
Speakers
R. Ross Coleman, MD
Movement Disorders Specialist
Corewell Health West, Grand Rapids, MI
Emily Ruether, MD
Movement Disorders Specialist
Corewell Health West, Grand Rapids, MI
Sarah E. Raguckas, PharmD
Pharmacist
Corewell Health West, Grand Rapids, MI
Angela West, PA-C
Parkinson's Physician Assistant
Corewell Health West, Grand Rapids, MI
Emily Buteyn, MA, CCC-SLP
Parkinson's LSVT-Certified Speech Language Pathologist
Corewell Health West, Grand Rapids, MI
Nicholas Stephanoff, MD
Family Practice and Lifestyle Medicine
Corewell Health West, Grand Rapids, MI
For in-person attendees: Check-in starts at 10 a.m.
For virtual attendees, via Zoom: The live stream starts at 11 a.m.
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.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
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The Parkinson’s Foundation Great Lakes Chapter is pleased to be working with Parkinson Partners of Northwestern Pennsylvania for the September 16th program in Erie, Pennsylvania.
In-person check-in starts at 9 a.m.
After many years of good symptom management, Parkinson’s disease may become more challenging. Learn how Parkinson’s symptoms may change over time and new strategies available for managing them.
Speakers
Xin Xin Yu, MD, MS
Director of Functional Movement Disorders Program
Neurological Institute Experience Officer
Center for Neuro-Restoration
Cleveland Clinic
Dimitrios A. Nacopoulos, MD
Clinical Assistant Professor
Department of Neurology
University of Pittsburgh School of Medicine
UPMC Neurological Institute
For in-person attendees: Check-in starts at 9 a.m.
For virtual attendees, via Computer or Smartphone: The live stream starts at 9:30 a.m.
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.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
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Check-In begins at 10 a.m.
Emotional and social health is an important part of living well with Parkinson’s disease. Many symptoms of Parkinson’s can affect emotional and social wellness. Learn how various clinical and creative therapies can support not only symptom management but the overall well-being of the person living with PD.
Speaker
Joy Antonelle de Marcaida, MD Medical Director
Hartford HealthCare
Chase Family Movement Disorders Center
Jennifer L. Ferrand, PsyD
Well-Being Director, Hartford Healthcare
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their families, friends, and the community.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
In this session, we will learn how to notice common difficult habits of the mind, to pause, and then to mindfully return to a better place. As we do so, we give ourselves the best chance of choosing a better next step.
Experts will share practical strategies and safety precautions to improve safety and minimize fall risk to support balance and mobility in everyday life.
Georgia Chapter Ambassador Retreat | July 31–August 1, Atlanta, GA. Join fellow Parkinson’s Foundation ambassadors for a weekend of connection, learning, collaboration, and planning as we celebrate our impact and prepare for the year ahead.
Studying the Intersection of Movement and Cognitive Disorders to Better Understand Parkinson’s Disease
Chi-Ying Lin, MD, MPH, is researching how movement and non-movement symptoms intersect for people with Parkinson’s disease (PD) and Alzheimer’s disease. Through studying these symptoms in people with movement disorders and cognitive disorders, he hopes to learn more about what parts of the brain produce specific symptoms, which could lead to new treatments for people with Parkinson’s.
Following his Parkinson’s Foundation fellowship at Columbia University Irving Medical Center, Dr. Lin is now an assistant professor of neurology at Baylor College of Medicine with dual appointments in the Alzheimer’s Disease and Memory Disorders Center and the Parkinson’s Disease Center and Movement Disorders Clinic, which is a Parkinson’s Foundation Center of Excellence. We spoke to Dr. Lin to learn more about his work and what he finds most promising in current Parkinson’s research.
What led you to Parkinson’s research?
I was very interested in the personalization of Parkinson’s evaluation and treatment plans, and in learning more about how movement and cognitive symptoms intersect.
I came to the United States after my residency in Taiwan because I was interested in neuropathology at Columbia University. When I arrived, I had a chance to hear Dr. Stanley Fahn speak about movement disorders and it blew me away. I decided I wanted additional training in movement disorders. Because of the excellent clinical training and mentorship opportunities in the U.S., I decided to restart my career here, which led me to my residency at Mount Sinai and my fellowship at Columbia University Irving Medical Center, which was supported by the Parkinson’s Foundation.
Why research the intersection of movement disorders and cognitive disorders?
In my first exposure to cognitive disorders in Taiwan, I was not entirely aware that people with movement disorders actually have a lot of cognitive issues. At Columbia University, I learned through the Parkinson’s Foundation that around 50% of people with PD could have either mild cognitive impairment or dementia. I felt it was important to study this intersection, which is a relatively new field.
There is a brain region called the cerebellum that sits right behind the brainstem and above the neck. It used to be thought of as a pure motor organ and was often studied to understand movement. However, in the past 10 years, there has been an increased understanding that the cerebellum controls non-movement symptoms as well.
Getting To Know the Brain
The cerebellum, which means “little brain,” is primarily responsible for coordination of movement, maintaining posture and balance, muscle tone and motor learning. Recent research also started to reveal the role of cerebellum in non-movement symptoms.
The basal ganglia is an interconnected group of brain structures that control movement, thinking and emotions.
Can you tell us about your impulse control study?
In my fellowship, I conducted studies, and one primarily focused on the intersection of movement and cognitive disorders, especially for impulsivity and compulsivity, which are commonly seen in people with Parkinson’s. This study compared impulsivity in people with Parkinson’s to people with a different cognitive condition, Cerebellar Ataxia, which can include impulsive behavioral symptoms as well.
Our findings determined that impulsivity was different between the two conditions, and with Parkinson’s disease, it can be more widespread to include several impulsive behaviors that are both movement and non-movement related, including gambling, eating, hypersexuality, spending and compulsively taking medication. This suggests that that cerebellum and basal ganglia, a different part of the brain that is affected by PD, can produce different kinds of impulsive behaviors, furthering our understanding of how the cerebellum functions.
What are you currently researching?
The goal of my current study is to better understand the genetic and environmental factors that lead to Alzheimer’s or Parkinson’s in each participant.
I am on dual appointment in the Parkinson’s Center and Alzheimer’s Center. I’m also part of Baylor’s Precision Medicine Core, where I comprehensively study people with and without cognitive disorders and use clinical history, comprehensive assessments, neuroimaging and genome sequencing to characterize early cognitive impairments and determine the risk a person has for a cognitive disorder. Houston, TX, where Baylor is located, is the most racially and ethnically diverse city in the country, which makes it a great place for this study.
Furthering the work I did during my fellowship; I’m also conducting a functional neuroimaging project to identify the role of the cerebellum in both Alzheimer’s and Parkinson’s. Once we understand the role, we can consider treatments like deep brain stimulation to address impulsivity and compulsivity.
What gives you hope for the future of Parkinson’s research?
My overarching goal is to be part of the experts in the world that find the modifying therapy or, to be ambitious, the corrective therapy for Parkinson’s. Practically, I want to address the symptoms of Parkinson’s, which is why I’m focusing on the cerebellum and its impulsivity power to see if we can better address that symptom for people with Parkinson’s.
What do you see as the most promising recent discoveries in Parkinson’s research?
The Parkinson’s Foundation genetics study, PD GENEration, Mapping the Future of Parkinson’s Disease, is something that my patients and their families benefit from immensely because it not only includes genetic testing, but genetic counseling as well at no cost to participants. I’ve enrolled many patients into the study, and I think overall it will be a very fruitful study for Parkinson’s research.
I also believe the Parkinson’s Foundation study about alpha synuclein detection in stool is very interesting and could lead to earlier Parkinson’s disease detection. It interests me because it is noninvasive and could allow for early-stage study recruitment.
How has support from the Parkinson’s Foundation impacted your career?
My fellowship taught me that Parkinson’s does not look the same in every person, and care must be individualized. I’m so appreciative of the support I’ve received from the Parkinson’s Foundation.
There are not enough movement disorders specialists, especially in rural areas, and the Foundation’s support of expanding care for people with Parkinson’s is so important.
Because of the Parkinson’s Foundation, I was able to learn from well-respected movement disorders leaders and build upon my foundation as a movement disorders neurologist. I was lucky to be in the last fellowship class trained by Dr. Fahn before his retirement. He taught me how to be a very compassionate movement disorders neurologist who actively works with patients and their families to find the best treatment options.
