Take charge of your Parkinson’s journey with practical tips to get the most out of every medical visit. This program will highlight simple, effective strategies to help you prepare for appointments, ask the right questions, track symptoms and medications, and build the care team that works best for you.
This program is open to people with Parkinson's, their family members, friends and the community. There is no charge to attend, but registration is required. Lunch will be served.
Expert Speakers:
Julie Kurek, MD
Augusta University/Wellstar-MCG
Lori Burkhead-Morgan, PhD, CCC-SLP
Augusta University/Wellstar-MCG
Agenda
9:30 a.m.
Registration & Resource Fair
10:00 a.m.
Welcome
10:15 a.m.
Optimizing Your Parkinson’s Care
Julie Kurek, MD
10:45 a.m.
Question & Answer Session
11:15 a.m.
Finding Support Throughout Your PD Journey
Lori Burkhead-Morgan, PhD, CCC-SLP
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Pull up a chair, pour yourself a cup, and join us for an open conversation with the Parkinson’s Foundation’s Chief Medical Officer, Dr. Sneha Mantri and guest expert, Dr. Matthew Burns. Our Coffee & Conversation series creates a space for you to ask the questions that matter most. This sessions will focuse on the movement symptoms of Parkinson's.
From tremors to stiffness to changes in balance, movement symptoms are often the most visible signs of Parkinson’s—but they can also be the most misunderstood. In this session, Dr. Sneha Mantri Dr. Matthew Burns will answer your questions about managing, treating, and living with movement symptoms.
Bring your questions. Bring your curiosity. Bring the conversation. Don’t forget your coffee (or tea!).
Speakers
Sneha Mantri, MD, MS
Neurologist, Duke University
Chief Medical Officer, Parkinson's Foundation
Matthew R. Burns, M.D., Ph.D.
Assistant Professor of Neurology, Norman Fixel Institute for Neurological Diseases at UF Health, Department of Neurology, University of Florida College of Medicine
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Estas hojas de trabajo pueden ayudarle a organizarse en su vida diaria como aliado en el cuidado de una persona en cualquier estadio de la enfermedad de Parkinson.
Herramientas clave para el bienestar de los cuidadores
Mi nombre es Adriana Jiménez. Mi papá fue diagnosticado hace más de 10 años con la enfermedad de Parkinson y en ese momento empezó nuestra aventura con esta condición, ya que yo no sabía lo que significaba.
Mis papás están en la ciudad de Guadalajara y yo vivo en los Ángeles, Ca., y estar a distancia fue un reto bastante grande. Gracias a Dios, tuve la oportunidad de ir a verlos y ver que no había nada de información del Parkinson en Guadalajara. Cuando regresé a California, empecé a buscar información de lo que es esta enfermedad.
Al principio, no encontraba nada en español y logré contactarme con la Parkinson’s Foundation que, dándose cuenta de la gran necesidad de información en español que se requiere, ha tomado el liderazgo en crear documentos informativos.
En el 2018, pude asistir a la primera conferencia en español de la Parkinson’s Foundation en Long Beach, Ca., donde pude entender qué es esta condición, cuáles son las diferentes terapias y cómo hablar con mis papás y familiares para que pudieran entenderlo. ¡Ser un cuidador a distancia no es fácil! Sin embargo, tampoco la distancia es un impedimento para poder estar cerca de nuestra familia y apoyarla. ¡Buscar la información e instruirnos marca una gran diferencia!
Mi mamá fue diagnosticada también con Parkinson hace 4 años y la forma en que entendimos y la ayudamos fue diferente que a mi papá. Ya tenía más información. Pude explicarle lo importante de saber que cada persona con Parkinson es diferente y que, a pesar de estar lejos, siempre estoy con ellos, llevándoles nuevas clases en línea que encuentro en la Parkinson’s Foundation, contactando a mi mamá con doctores, creando grupos de apoyo, uniéndome con otras personas que están en la misma situación que la mía, con quienes compartimos las mismas preguntas e inquietudes.
Soy fiel creyente en que la unión hace la fuerza y ahí decidí crear el programa de Parkinson con Give for a Smile, donde encontré también doctores y especialistas hispanos, como yo, aquí en los Estados Unidos, que tienen un gran amor a nuestras familias latinas, a nuestras familias con Parkinson; porque siempre digo: no es una persona con Parkinson; ¡es una familia con Parkinson!
Con esta enfermedad, toda la dinámica cambia; pero si lo entendemos, lo procesamos y nos unimos, podemos marcar la diferencia en nosotros, en nuestra familia y en nuestra comunidad.
Si me preguntara, ¿qué me hace feliz en esta aventura del Parkinson? Puedo decir tranquilamente que saber que, aun a la distancia, puedo estar cerca de mis papás, ayudándolos con información, clases por Zoom, conferencias y a saber que tener Parkinson no es el final del camino; es el principio de una nueva aventura; que mi familia ha crecido, porque la familia del Parkinson me abraza y me apoya siempre. ¡Lo único que tengo que hacer es unirme a ella!
As Parkinson’s disease progresses, care needs can become more complex—impacting daily routines, independence, and long-term planning. This webinar will help veterans, and their care partners prepare for the changes that may come with advancing Parkinson’s. We’ll explore strategies for proactive care planning, VA services to support evolving needs, and resources to maintain quality of life through each stage of the disease.
Speakers
Reversa Joseph, MD, MS
Director of Movement Disorders Clinic
Chalmers P. Wylie VA
Amanda Ripke, LCSW
Movement Disorders Clinic
Chalmers P. Wylie VA
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
When I was diagnosed in early 2010, it was a long, long walk back to our car. My wife was with me. We had been told in a matter of a few minutes that based on initial indications, at age 45, "you no doubt have Parkinson's disease (PD)…"
Little did I realize my life had changed forever from that moment.
Now, at 61 years young, I recall stepping into that full range of emotions we people with PD all go through: shock, denial, confusion, fear, anger and sadness.
Looking back, what I really wanted was information that may quickly outline and answer the range of "what now" questions multiplying in my head. What I did not want to do was immediately search the internet and travel down those "rabbit holes" that so often end in false assumptions or conclusions. I found that much of what I came across online was largely irrelevant to my personal situation. Afterall, I was told very early on that my PD journey would be just that: mine.
To my surprise, I soon found THE one-stop-shop for everything PD — the Parkinson Foundation website!I quickly realized that THIS was the general guide for the early onset and recently diagnosed that could also lead me to detailed specifics.
As an added bonus, I found that the Foundation could be a reliable roadmap to forming a PD team of advisers and movement disorders specialists around me. I've nicknamed my group “The B Team."
I tell them they will become "The A Team" once they find the cure!
Seriously though, if I have any advice for people who are newly diagnosed, it would be to develop your own “B Team” ASAP. This can include:
Neurologist and/or Nurse Practitioner, with specialty in Movement Disorders with a focus on PD.
Neuro Psychiatrist, with experience in treating PD.
Physical Trainer. Exercise is THE #1 activity PD patients can do to help slow down the PD progression.
Family Practitioner (MD in my case that has experience with PD).
In 2012, I learned about Moving Day, A Walk for Parkinson’s in Columbus. For the last 14 years my family, known as TeamRamsey's Racers, has raised more than $117,000 and has placed first overall of Central Ohio team fundraising in the last several years.
My wife is my world, and both of my sons, Max and Tyler, are everything to me. I asked my boys if they would like to comment on the "Ramsey PD Story." They replied with this:
Even though this list may seem extensive, the one great point that dad repeats to us is he will never let these PD complications define him. Dad has always been a fighter. Dad recognizes that organizations like the Parkinson’s Foundation need money to help people with Parkinson’s. They are making life better for people with PD. Now, that’s what our local Moving Day family team is all about: fundraising for resources that can help slow the progression of this terrible disease.
Dad represents these ideals everyday."
Overall, I am doing well. I now struggle with speech and see a speech therapist after I found that with retirement also comes much less talking, so there are fewer daily benchmarks to test along the way.
While I don't see myself getting down, I do realize that there is no going back to life before PD. I have a neurodegenerative disease. However, don't mistake these physical indications as me crying in my beer.
I'm VERY lucky all-around and have MUCH to be thankful for.
Navigating medical appointments with Parkinson’s can feel overwhelming, especially when time is limited, and priorities compete. The Parkinson’s Foundation Optimizing Care Initiative emphasizes the importance of what matters to you—ensuring your voice, story, and needs are central to your care. This webinar will explore practical strategies for self-advocacy, how to use storytelling to share your health journey effectively, and ways to clearly communicate your priorities so you leave your appointments feeling heard and empowered.
Speaker
Sneha Mantri, MD, MS
Neurologist, Duke University
Chief Medical Officer, Parkinson's Foundation
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Mainstay Parkinson's Medication Sometimes "Wears Off" Faster for Women
Levodopa, which helps with the movement symptoms of Parkinson’s, tends to work less well over time, especially for women.
Parkinson's disease (PD) is a condition that gets worse over time, impacting the nervous system. It's caused by the gradual death of brain cells that produce dopamine, a crucial chemical messenger for controlling movement. When these cells are lost and dopamine levels drop, people with Parkinson's begin to experience noticeable symptoms like shaking or tremors, muscle stiffness, a general slowness of movement and problems with balance.
A primary treatment for these movement symptoms is the drug levodopa. The body converts this medication into dopamine, helping to replenish the brain's supply. By doing so, levodopa can significantly reduce the physical challenges of the disease and improve a person's daily life.
However, for many individuals with Parkinson's, the effectiveness of levodopa can begin to diminish between doses. In other words, it starts "wearing off." Patients may notice their movement symptoms, such as tremors and stiffness, gradually returning before their next scheduled dose.
Parkinson’s also impacts men and women differently. Men are estimated to be 1.5 times more likely to develop Parkinson’s. Women with Parkinson's are often diagnosed at a later age and may have slightly different symptoms. These differences between men and women with Parkinson’s could be due to a variety of factors, including hormonal differences and genetics.
To better understand how these gender differences impact experience with levodopa, a recent study tracked 216 individuals with Parkinson's over a two-year period. The goal was to investigate whether men and women experience levodopa wearing off at different rates and to examine the symptoms that occur while on this medication.
Study Results
Participants included 139 men and 77 women with Parkinson’s who began taking levodopa for the first time at the start of the study. After two years in the study, almost 65% of women experienced symptom fluctuations, or times when the medication's effects seem to "wear off" before the next dose is due. This was compared to about 53% of men. This suggests that for many women, the medication was less effective in managing symptoms and did not feel as consistent over time.
In addition, more women in the study developed dyskinesia, a side effect of levodopa that leads to involuntary, uncontrolled movements. About 14% of women developed dyskinesia compared to only 5% of men. Taken together, these results suggest that there may be differences in how levodopa is processed in the body between men and women.
The study concluded that being female was the strongest predictor for both the wearing-off effect and dyskinesia after taking levodopa for two years. This indicates that gender is an important factor when considering how a person might respond to this medication.
Highlights
The study followed 139 men and 77 women with Parkinson’s for two years after they started taking levodopa for the first time.
During the two-year study period, 65% of women experienced times when the medication's effects seemed to "wear off" before the next dose. This was compared to about 53% of men.
During the study, about 14% of women developed dyskinesia, compared to only 5% of men.
The study concluded that female gender predicted the development of motor fluctuations and dyskinesia more than any other factor.
What does this mean?
Women’s experiences have been historically underrepresented in PD research. This study adds to increasing evidence that men and women often experience various aspects of PD differently, including in their response to the PD medication levodopa. Specifically, these results indicate that women may be more likely to have worse responses to levodopa treatment over time compared to men. However, the reasons for these differences between men and women are still unknown. Additionally, it is common for both men and women to have breakthrough symptoms on levodopa over time.
What do these findings mean to people with PD right now?
Knowing that men and women may react differently to prolonged levodopa treatment can help healthcare providers develop more effective treatment plans for patients. While more research needs to be done, the findings from this study suggest that more tailored, “gender-oriented” treatment recommendations may be needed. If you are struggling with symptoms related to levodopa treatment, talk to your doctor to discuss your treatment plan.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
Learn why boxing is such a great way to combat the symptoms of Parkinson’s as Coaches lead you through a moderate to vigorous basic boxing circuit and discuss the “why” behind how Rock Steady adapts a boxer’s traditional training regimen to target symptoms of PD.
Equipment needed: Chair, boxing gloves
Instructors
Chris Timberlake, ACSM CPT, CIFT
Preston Moon
RSB Head Coach
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
