I was diagnosed with Parkinson’s disease (PD) in 2014, at age 75. I am ashamed to say that upon receiving my diagnosis, I yelled at the doctor, “I’m not going to change my lifestyle!” He tilted back in his chair. “You don’t have to,” was his quiet reply. So, this independent, stubborn woman began her journey with PD. What to do?
I ran away! In 2005, I was living a unique retirement lifestyle, volunteering at organizations in the United States that offered free room and board. I had promised to go to the Menaul School in Albuquerque, New Mexico, for a semester. Getting diagnosed with Parkinson’s brought on an entirely new set of questions: Do I stay or go? Should I share my diagnosis with anyone? How am I going to tell my children? I could not say the word “Parkinson’s” without crying.
Now, 9 years into this degenerative disease, I fight back. I have grown past denial, anger and crying, and I have sprung into advocacy. I search for ways to promote awareness for Parkinson’s and to inform the world about the realities of the disease. I am eager to communicate with others living with PD, not to evoke pity, but simply to find understanding and community. By doing so, I have evolved into a Parkinson’s Ambassador.
April is Parkinson’s Awareness Month. I am always searching for new ways to raise awareness for Parkinson’s disease throughout the month. My local library in Ridgefield, Connecticut has been my biggest ally. They have updated their collection of Parkinson’s-related materials and they notify me of each new arrival. The Ridgefield Library is also offering an informational display table with Parkinson’s resources, which will be available all month.
Due to my limited mobility, most of my activism for Parkinson’s Awareness Month has been managed via technology. I reached out to the Ridgefield 1st Selectman, who plans to issue a Proclamation acknowledging Parkinson’s Awareness Month in my town. I am also submitting letters to the editor to local newspapers to further raise PD awareness throughout the month. Awareness is so important for research. I am so pleased and proud of the results.
Psychologically and physically, managing my Parkinson’s is my full-time occupation. However, by participating in volunteer and social activities like being a Parkinson’s Ambassador, interacting with friends, and daily exercise, my attitude becomes energized. After all, motion is lotion.
Take 6 Minutes to Help Raise Parkinson’s Awareness
April is Parkinson’s Awareness Month, a time when the Parkinson’s community comes together to raise awareness for Parkinson’s disease (PD). Our new incidence study found that every 6 minutes, someone will be diagnosed with Parkinson’s in the U.S.
This month, we want everyone to #Take6forPD — take 6 minutes to help us raise Parkinson’s awareness. There are many ways you can raise awareness, such as participating in research, finding expert care or educating your community about PD.
Read on to learn how you can #Take6forPD:
#Take6forPD to Advance Research
In the U.S., 90,000 people will be diagnosed with Parkinson’s disease this year. Take 6 minutes to help us advance PD researchaimed to improve treatments and find a cure.
Register to participate in PD GENEration: Mapping the Future of Parkinson’s Disease. Our international genetics study offers genetic testing for PD-related genes and genetic counseling at no cost for people with Parkinson’s.
Watch a Neuro Talk video. Learn about the latest in PD research from PD research experts.
Join a research study. Explore the different opportunities to get involved with Parkinson’s research.
Donate to our Parkinson’s Virtual Biotech. Your support helps us invest in new drugs that can deliver life-changing treatments in years, not decades.
Sign up for an Expert Briefing webinar. Learn more about managing PD symptoms and treatments from PD experts.
Finding the right information and resources early in the Parkinson’s journey can make life better for people with PD. Take 6 minutes to feel empowered through educational resources.
Join our e-mail list. Be the first to know what’s happening in Parkinson’s research and care.
Share our PD infographic on Facebook or Instagram. Help us raise awareness that 90,000 people are diagnosed with PD every year in the U.S.
Register for an educational or local event. Connect with the PD community, either in-person or virtually.
Subscribe or listen to our podcast.Substantial Matters: Life and Science of Parkinson’s highlights the treatments, techniques and research that can help you live a better life now.
Complete our 60 Miles in April Facebook Challenge. Join hundreds of others in taking the challenge to bike, run or walk 60 miles this month to raise awareness for Parkinson’s.
Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.
Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.
Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.
I was diagnosed with Parkinson's disease (PD) in 2013, after over a year of my symptoms being misdiagnosed. My husband and I were dumbfounded. Neither of us had anyone with Parkinson's in our families, and we knew nothing about the disease. While searching online for information about PD, I found the Parkinson's Foundation and decided to call the Helpline.
I talked to a Helpline specialist, who guided me through the Foundation’s resources and told me about a five-day workshop taking place not far from my home in Pennsylvania. My husband and I attended the workshop, and we were submerged in education, exercise, support groups and comradery. It was the best thing we could have done. I sat in on seminars led by doctors who stayed long after they were scheduled to speak, just to answer questions from attendees.
The workshop took place three months after my diagnosis. Up until this point, I had not cried. For days, tears poured out of me during these sessions — I felt this was expected, because there were boxes of tissues throughout the room. I left after five days feeling empowered by a better understanding my disease. I no longer felt alone.
My husband understood what I was going through. We came home from the workshop knowing others in our area living with Parkinson's. This was just the beginning of our journey in bringing Parkinson's awareness and resources to this corner of Pennsylvania. We started an annual 5k race that took place five years in a row, raising over $200,000 for Parkinson's research.
I became involved in clinical studies for Parkinson's research. One of these studies, which is being conducted in research centers around the world, is looking for biomarkers to diagnose and prevent PD. In 2020, I had deep brain stimulation (DBS) surgery. I continue to share my experience with DBS and serve as a resource for others considering the surgery. I also make a difference by volunteering with the Parkinson's Foundation.
My continued involvement with the PD community has helped me feel like my experience with Parkinson's happened for a reason. My journey has been made easier by my family. My husband has been by my side since we attended the workshop together. He understands my challenges. My husband, along with our three children and their spouses, were tremendously involved in the success of the 5k. The support I have been given by my family has made this journey easier.
Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.
Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.
Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.
Episodio 24: Cambios en la vista relacionados con el Parkinson
La visión es uno de los sentidos que tenemos que está conectado directamente con el sistema nervioso central. Cuando hay alguna enfermedad neurológica o algún problema que afecta esta área del cerebro, podemos esperar cambios en la visión.
En este episodio, hablamos con el doctor Juan Ramírez-Castañeda, profesor asociado de neurología en la University of Texas at San Antonio y director del programa de la enfermedad de Parkinson y otros trastornos del movimiento, acerca de estos cambios en la vista relacionados con el Parkinson.
El doctor Ramírez-Castañeda explica cuáles son los síntomas visuales más comunes para las personas con Parkinson, como visión doble, ojos resecos, problemas con la percepción de profundidad y alucinaciones visuales y cómo pueden tratarse los cambios en la visión.
Publicado: 21 de marzo de 2023
El Dr. Juan Ramírez-Castañeda completó sus estudios de medicina en la Pontificia Universidad Católica del Ecuador. Realizó su residencia en neurología y subespecialidad en trastornos del movimiento en Baylor College of Medicine en Houston, Texas. Actualmente es profesor asociado de neurología en las University of Texas at San Antonio, donde ha estado por los últimos 8 años. Ahí se desempeña como director del programa de la enfermedad de Parkinson y otros trastornos del movimiento. Recientemente, asumió el papel de jefe de la división de trastornos del movimiento en su institución. Sus intereses principales incluyen el manejo integral de la enfermedad de Parkinson, la estimulación cerebral profunda y la investigación clínica.
Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.
Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.
Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.
6 Parkinson’s Virtual Biotech Drugs in Research & Development
“The Parkinson’s Virtual Biotech initiative is a new, much needed way the Parkinson’s Foundation can directly make targeted investments that can have potentially great impact for people with Parkinson’s today,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer.
Parkinson’s Virtual Biotech is the international drug discovery and development program and joint venture/partnership of the Parkinson’s UK and the Parkinson’s Foundation. This groundbreaking global effort is working to spur the development of life-changing new Parkinson’s disease (PD) treatments in years, not decades.
“These investments can exponentially advance the opportunities for new Parkinson’s medications,” said Dr. Beck. “With the support of our community, this new initiative balances our portfolio of research investments. We can now broaden our research to support every type of research from basic science to clinical studies.”
Today, Parkinson’s Virtual Biotech funds 11 new medications and therapies already in research and development stages. Here are the six new drug development programs that energize us:
Stages of Research
Scientific Discovery: Researchers identify a problem and work on solutions.
In Development: Teams turn promising discoveries into potential new treatments.
Clinical trials: New treatments are carefully tested in study participants.
1. Project Galaxy: Addressing Inflammation in Parkinson’s
Stage: In Development
This project aims to find a way to stop harmful inflammation from damaging brain cells. Inflammation is a process that is vital for defending the body against harm from things like infection, injuries and toxins. If inflammation is chronically active when it shouldn’t be — which might be the case in PD — it can cause harm to healthy cells.
Key Takeaway: This project looks to uncover a way to reduce inflammation in the brain, in the hope to protect brain cells. This could pave the way for the design of a drug to help slow or stop the condition.
2. Project Top Hat: Exploring the potential of ondansetron for treating hallucinations in people with PD or Lewy body dementia
Stage: Clinical Trial
It is estimated that around 75% of people with Parkinson’s experience hallucinations during the course of PD. However, current treatment options are limited. The drug used to alleviate nausea after chemotherapy called ondansetron (brand name Zofran) is being tested as a treatment for visual hallucinations in people with PD or Lewy body dementia.
Key Takeaway: This study is a phase 2 clinical trial with 306 people with PD or Lewy body dementia enrolled. With safety data available from ondansetron’s current use in treating sickness, positive results from this study could see this repurposed medication quickly progress to become an available treatment.
3. Project Sheffield: Optimizing molecules that restore the power plants of brain cells
Stage: In Development
University of Sheffield researchers are developing molecules that can boost the function of mitochondria (the power plants of brain cells). Over the next 12 months, the team will develop and test the drug-like molecules in cells from people with PD. If successful, the molecules will then move forward into testing, before moving into clinical trials in people with Parkinson’s.
Key Takeaway: This research takes important steps toward creating a drug that can protect dopamine-producing brain cells and slow the progression of PD.
4. Project Pharmaxis: New treatment aims to relieve PD-like symptoms and target inflammation to slow onset
Stage: Clinical Trial
Inflammation is vital for defending the body against harm from things like infection and toxins. Researchers believe that inflammation may be linked to the causes and progression of Parkinson’s. Pharmaxis is investigating whether a drug called PXS-4728 can reduce inflammation in the early stages of Parkinson’s. This study will enroll 40 people who experience the sleep disorder known as isolated rapid eye movement sleep behavior disorder (iRBD). As many as 70% of people with iRBD go on to develop Parkinson’s.
Key Takeaway: The hope is this drug might be able to slow the onset of Parkinson’s symptoms in this group of people that are at a high risk of developing the condition. This could help find a way to the slow the progression of Parkinson’s.
5. Project NRG: Targeting the power plants of brain cells to slow the progression of Parkinson’s (I-1903)
Stage: In Development
NRG Therapeutics Ltd is investigating ways to boost the functioning of mitochondria in Parkinson’s. Mitochondria (the power plants of the cell) play an important role in both sporadic and inherited forms of Parkinson’s. The aim of this project is to identify new molecules that can enter the brain and support the mitochondria.
Key Takeaway: If successful, these protective molecules could provide a safe and effective new treatment that will protect brain cells, slow the progression of Parkinson’s and extend quality of life. In 2022, NRG secured additional funding to progress toward clinical trial.
6. Project Eurofins: Creating new drugs to improve symptoms and slow Parkinson’s
Stage: In Development
Eurofins, a leading contract research company in the UK, is working to create molecules that can increase activity of a selection of genes. Dialing up the activity of these genes has the potential to increase dopamine production and boost the production of protective proteins to slow or halt the damage and loss of precious brain cells.
Key Takeaway: If successful, this could lay the foundation for research into new treatments that could not only improve Parkinson’s symptoms, but also slow, stop or even reverse the underlying condition.
Scientists believe that Parkinson’s disease (PD) results from a combination of genetic and environmental factors (such as air pollutants). However, some environmental exposures can be good. For example, studies have shown that exposure to natural environments such as forests, parks, street trees, and rivers can help reduce cardiovascular disease and stress. Which begs the question: could there be environmental exposures with a protective effect that may lower the risk of PD?
Recently published in JAMA Network Open, “Associations of Greenness, Parks, and Blue Space With Neurodegenerative Disease Hospitalizations Among Older US Adults” (Klompmaker et al., 2022), a study sought to investigate whether living near green spaces, parks, or bodies of water may decrease the risk of first-time hospitalizations for people with PD. This study also investigated the impact on people with Alzheimer’s disease and related dementias (ADRD).
Harvard T.H. Chan School of Public Health researchers led the study, evaluating the data of a large cohort of nearly 62 million Medicare beneficiaries over a 16-year period (2000 to 2016). The PD and ADRD groups studied were mostly white (84.4%) and 65 to 74 years old when the study began. All 62 million people were followed until: a) their first hospital admission with a primary or secondary diagnosis of PD or ADRD, b) the research period ended, or c) they died. During the 16-year timespan, 1.1 million people were first hospitalized with PD, and approximately 7.7 million people were first hospitalized with ADRD.
What’s the difference between a primary and secondary diagnosis?
A primary diagnosis is the main cause for being admitted to the hospital.
Secondary diagnoses are coexisting diseases or conditions at the time of hospital admission, but not the main reason.
To determine the various environmental exposures of each individual, the researchers looked at every participant’s Zip code, and then compared it to:
U.S. Geological Survey Protected Areas Database for park exposure/recreation areas
The Joint Research Centre Global Surface Water data set for blue spaces (surface water)
The Landsat satellite imaging for determining the amount of green space (trees, crops, or grass)
Results
Study results show that:
Older adults who lived in a Zip code with more green space had a lower rate of hospitalization for Parkinson’s disease and Alzheimer’s disease and related dementias.
Blue space (such as lakes, rivers and oceans), and the amount of land dedicated to parks were also associated with fewer hospitals admissions for Parkinson’s disease, but not for Alzheimer’s disease and related dementias.
What does this mean?
For years, studies have demonstrated that being in nature — and particularly green spaces — can have a positive impact on peoples’ physical and mental wellness. This study found that living near any of the three types of nature investigated was linked with avoiding a first hospital stay for Parkinson’s disease.
These findings are real and measurable. However, the exact reasons for these findings are less clear. It could be due to a multitude of factors. For example, trees and other plants help reduce air pollution, which research suggests contributes to the development of PD by directly or indirectly damaging the nervous system (neurotoxicity) and/or by an inflammatory response in the brain (neuroinflammation). However, the protective associations of green space with hospitalization remained after adjusting for air pollution, implying that other factors — such as stress reduction, increased physical activity, and social interactions — are still at play.
Additionally, studies such as this one can have policy implications worth considering: urban planners need to consider the public health importance of incorporating designated and protected natural environments. These can help create healthier environments and potentially decrease the number of hospital admissions for neurological diseases such as Parkinson’s disease and Alzheimer’s disease and related dementias.
This study has concluded and is no longer enrolling participants. Explore ongoing studies at Parkinson.org/JoinAStudy.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and environmental factors by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
Calderon-Garciduenas, L., & Villarreal-Rios, R. (2017). Living close to heavy traffic roads, air pollution, and dementia. Lancet, 389(10070), 675-677. doi:10.1016/S0140-6736(16)32596-X
Geneshka, M., Coventry, P., Cruz, J., & Gilbody, S. (2021). Relationship between Green and Blue Spaces with Mental and Physical Health: A Systematic Review of Longitudinal Observational Studies. Int J Environ Res Public Health, 18(17). doi:10.3390/ijerph18179010
Klompmaker, J. O., Laden, F., Browning, M., Dominici, F., Jimenez, M. P., Ogletree, S. S., . . . James, P. (2022). Associations of Greenness, Parks, and Blue Space With Neurodegenerative Disease Hospitalizations Among Older US Adults. JAMA Netw Open, 5(12), e2247664. doi:10.1001/jamanetworkopen.2022.47664
USDA. (2021). The Wellness Benefits of the Great Outdoors. U.S. Department of Agriculture, Office of Communication.
Yuchi, W., Sbihi, H., Davies, H., Tamburic, L., & Brauer, M. (2020). Road proximity, air pollution, noise, green space and neurologic disease incidence: a population-based cohort study. Environ Health, 19(1), 8. doi:10.1186/s12940-020-0565-4
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Check-in and resource tables start at 12:00 p.m. A light lunch will be provided.
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.
Speaker from KU Medical Center, a Parkinson's Foundation Center of Excellence:
Muhammad Nashatizadeh, MD
Clinical Associate Professor
Parkinson's Disease and Movement Disorder Center
This program is open to people with Parkinson's, their family, friends, and the community. There is no charge to attend, but registration is required.
Attend in-person
Parking: Parking is complimentary for attendees of the program.
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.
