My journey with Parkinson's disease (PD) led me to discover a newfound richness in life. One day, while at the park with my granddaughter and our dogs, I became captivated by an old tree. I expressed my desire to draw or paint it, despite having no prior artistic experience. My wise granddaughter simply said, "So what? What are you going to do about it?” That moment marked the beginning of a new-found, and enriching adventure.
I decided to try something completely new, painting and drawing. Armed with basic supplies, I attempted to sketch that tree in the park from a photo my granddaughter had taken. To my surprise, it resembled a tree, at least in my eyes. Unlike my previous hobbies like knitting and sewing, where I felt the pain of loss due to my physical limitations, painting was a fresh start.
I painted, experimented with sketches, and even began crafting birdhouses. The crucial part was that I enjoyed it, found relaxation, and didn't need to compete with anyone, not even myself. Due to my physical limitations, letting go of what I used to be about results in a profound sense of freedom, and the act of creating, even if just for myself, was incredibly rewarding.
When I underwent back surgery and needed to stay in the hospital for a few days, I realized the hospital staff were not equipped to handle my Parkinson’s medications. I experienced the same issue when I was transferred to a residential rehab center. A friend mentioned that the Parkinson’s Foundation had information about staying safe in the hospital with Parkinson’s, so I decided to learn more. The hospital safety guide helps me and my family talk to the nurses about PD when I go to the hospital.
Parkinson's may limit certain abilities, but it can also open doors to new experiences. Trying something entirely different, however modest the attempts, eliminates the fear of failure. Creativity, in any form, can be uplifting. There's a world of new, unexplored possibilities; the keyword is "new."
I share my story to encourage others to explore new horizons. Another new endeavor for me was writing haikus, a concise form of poetry. Haikus provided an excellent outlet for self-expression and catharsis.
My message is simple: find something new to pursue. It doesn't matter if you're not an expert; what matters is the act of doing it. Whether it's playing with colors, brushstrokes, molding with clay, or writing haikus, embrace the joy of exploration.
I may not share my work with friends or neighbors, but I gladly share it with fellow warriors in this battle. As one door closes, another opens, and I've come to understand the power of that saying. To all those fighting the good fight, as Alfred, Lord Tennyson's Ulysses put it, "Come, my friends, 'tis not too late to seek a newer world.”
Go in peace, love, and joy, my fellow warriors.
Explore new opportunities! Find nearby Parkinson’s exercise and wellness classes through your local chapter or by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636).
The Gut-Brain Connection: Why Diet Can Help Parkinson’s Symptoms & Brain Health
The brain and gastrointestinal (GI) system are connected. Resident bacteria, including that in the gut, are unique to every person and a major part of our makeup — bacteria even outnumber cells in the body. The capability of that bacteria, known as the microbiome, is enormous. New research strongly suggests a link between the gut and Parkinson’s disease (PD). Learn what science is finding and discover how you can begin improving gut health today.
The gut microbiome spans from the mouth to the colon. It is the network of microorganisms — bacteria, viruses, fungi and more — and their collective genetic material that lives within the intestinal tract. The greatest density and diversity of these microorganisms are found within the colon.
Studies on the relationship between gut bacteria and health date back hundreds of years. Research on the benefits of bacteria in yogurt for treating diarrhea was recorded as early as the 1400s. Today, technology known as high-throughput DNA sequencing gives researchers the power to rapidly identify the thousands of bacterial DNA present in individual stool samples.
Science is uncovering the many ways the gut microbiome can influence brain health, body function and overall wellbeing. It can even impact how the body processes oral medications.
Exploring the Gut-Brain Relationship in PD
Research suggests that what happens in the gut influences the brain by way of the gut-brain axis — a biochemical communication between the gastrointestinal tract and the central nervous system.
While research on Parkinson's and the microbiome is in its infancy, scientists have found the gut bacteria in people living with PD differs from that of people without PD.
In Parkinson's, alpha-synuclein proteins misfold and form clumps in the brain. These clusters are called Lewy bodies. It has been suggested that these clumps, which are also found in other neurodegenerative diseases, may trigger the loss of dopaminergic neurons. As scientists have dug deeper into Parkinson’s progression, they have also been able to find alpha-synuclein pathology along the GI tract in people with Parkinson's.
What Science Can Tell Us
Gastrointestinal dysfunctions are some of the most common and troublesome non-movement symptoms in PD. Constipation affects up to 70% of people with Parkinson's and often begins before the onset of PD’s telltale movement symptoms and other early signs. It's estimated that up to 75% of people with Parkinson's will also experience speech and swallowing issues. Gastroparesis, delayed emptying of the stomach, is another common PD symptom.
Knowing that alpha-synuclein pathology can also be found along the GI tract in Parkinson’s, over the years researchers have genetically sequenced the microbiome of different people with Parkinson's. They found that some beneficial bacteria, such as Prevotella, Faecalibacterium and Roseburia, are reduced in people with Parkinson's, when compared to someone without the disease. However, researchers also found a boost in other bacteria, such as Bifidobacterium and Lactobacillus, in people with PD — possibly due to constipation.
Research also shows zonulin, a protein marker of intestinal absorbency, found in inflammatory GI conditions such as celiac disease, inflammatory bowel disorders (IBD), diabetes and other autoimmune diseases, is also significantly elevated in people with Parkinson’s. This increased intestinal permeability potentially leads to what is referred to as “leaky gut” (a decrease in the intestinal barrier that can set off inflammation and disease).
Diversity Matters
A healthy microbiome is a diverse one. Research shows decreased microbial diversity in people with inflammatory bowel disorders, such as ulcerative colitis and Crohn's disease, compared to the resident gut bacteria in healthy people.
Diseases, including Parkinson's and IBD, diet and lifestyle all impact gut bacteria diversity. What we eat, how often we exercise, where we live and stage of life all play a role. Other influences include stress, antibiotic and pharmaceutical drug use and pollutants.
Researchers theorize that these factors influence the production of signaling metabolites, which determine whether the gut makes beneficial, anti-inflammatory or inflammatory molecules, such as those that impact cholesterol metabolism, cardiovascular and brain health and more. Communication among signaling metabolites can influence the GI tract, immune system, the liver, brain, lungs, skeletal muscle and other areas of the body.
While various factors can impact on gut microbiota, generally, the microbiome is very stable. Antibiotic or probiotic use often shows short-term changes in resident microbiota, but over time — as a person discontinues use of such medication or supplements and reverts into a familiar diet — the resident microbial makeup typically returns to where it was.
Taking Charge Through Diet
One of the best strategies to improve gut health is increasing fiber. While a probiotic may only introduce one bacteria strain, a fiber-fueled diet can be broken down by multiple types of gut bacteria to encourage a new microbial community to take up residence in the gut, benefitting GI and heart health, improving immune function and easing constipation.
When gut bacteria break down fiber it naturally produces health-boosting short chain fatty acids. These acids boost the gut’s mucus barrier to fight inflammation, protect brain and heart function and more.
Research shows a high-fiber, whole food, plant-fueled diet, with high consumption of fruits and vegetables (known as a Mediterranean-style diet) can increase butyrate and other beneficial bacteria. Right now, researchers are interested in butyrate, a fatty acid that is a major energy source for creating healthy new gut bacteria and can influence immune function.
Plant-Rich, Fiber-Driven Meals Matter
A Mediterranean-style diet is associated with lower risks of developing Parkinson’s, higher microbial diversity and improved heart and cognitive health. Studies also show incorporating this whole-food based diet, along with healthy fats, such as extra virgin olive, oil, nuts and seeds can ease PD symptoms.
To boost gut health experts recommend:
Eating at least 14 grams of fiber for every 1,000 calories — about 28 grams for someone eating 2,000 calories a day. The average American only consumes half of the recommended daily fiber.
Filling half your plate with vegetables and fruit.
Eating prebiotic fibers such as bananas, onions, garlic, chicory root, artichokes, beans, grapes and cranberries.
For some people with Parkinson’s, taking certain PD medications with a protein-rich meal — like meat, fish, eggs, dairy products, nuts and beans — may interfere with absorption, slowing medication effectiveness. Talk to your doctor about whether a protein-redistribution diet, a popular solution for motor fluctuations, might be right for you. This means eating most of your daily protein during your last meal of the day.
On the Horizon
The research on dietary interventions to alter gut microbiota is entering a new era. Scientists are currently exploring:
Probiotics: benefits specific to probiotic species and strain. Healthcare experts use the Clinical Guide to Probiotic Products Available in USA to inform research-based recommendations. There is no recommended consumption of probiotics in PD but bring up this topic with your doctor.
Postbiotics: “a preparation of inanimate microorganisms and/or their components that confers a health benefit on the host,” according to the International Scientific Association for Probiotics and Prebiotics (ISAPP). Studies show potential for using postbiotics to ease symptoms of irritable bowel syndrome, treat infections and more.
Synbiotics: prebiotics combined with probiotics, defined by ISAPP as “a mixture comprising live microorganisms and substrate(s) selectively utilized by host microorganisms that confers a health benefit on the host.” These are being investigated to potentially improve PD symptoms and more.
Researchers are also investigating how machine learning and artificial intelligence might aid in modifying gut bacteria. Entering information from an individual’s stool sample, diet, genetics and other medical data into a machine-learning model could identify precision nutrition to modify a person’s microbiome.
Learn More
Explore our resources about the gut-brain connection in Parkinson’s:
Arte Terapia: Un viaje para conectar con el bienestar a través de la creatividad. Regístrese Aquí
¿Le gustaría descubrir una manera única de enriquecer su vida y expresarse a nivel personal? Nuestro programa 'Arte Terapia: Un viaje para conectar con el bienestar a través de la creatividad' le brinda la oportunidad de hacerlo a través del poder del arte.
Les invitamos a sumergirse en un viaje emocional, liberar el estrés y promover el bienestar mediante la creatividad. No importa su nivel de habilidad artística; lo esencial es su disposición para explorar y crecer a través del arte.
¡Acompáñenos en este apasionante recorrido hacia el autodescubrimiento y el bienestar personal a través del arte terapia!
Presentadoras
Valeria Tamayo, MA, Arte Terapia
New York University
Marygrace Berberian, MA, ATR-BC, LCAT, LCSW
Directora del programa NYU Art Therapy in the Schools
New York University
Este programa es gratuito y está disponible para cualquier persona interesada, incluyendo a las personas con Parkinson y sus familiares, amigos, personas de apoyo y promotores de salud.
Una lista de nuestros recursos en español – Parkinson.org/Recursos Línea de Ayuda – 1-800-473-4636, opción 3 para español.
Podcasts
Episode 162: Research Series: Getting Involved in Research with Young-Onset PD
Early-onset, also called Young-onset Parkinson’s disease (YOPD), affects about 4% of the one million people with Parkinson’s disease (PD) in the United States, with a diagnosis before age 50. Although there are many characteristics similar to late-onset PD, there are a few differences such as disease progression, response to medications, and genetic risk factors. Because of the earlier age of onset, YOPD may also differ in how it affects an individual’s social relationships, marriage, parenting, family life, employment, and finances. Participating in research studies is one way that people with YOPD can help reveal the role of genetics and other factors in how the disease occurs and manifests in younger people.
People with YOPD can most often still live a happy and productive life. Support groups, family support, and knowledge gained through groups, articles, conferences, and webinars can improve one’s care, functioning, and quality of life. Finding a comprehensive health care team that can offer any needed physical, social, emotional, and spiritual services is also important. The Parkinson’s Foundation and its Helpline, as well as community resources, are good places to start.
Today’s guest is Israel Robledo, a Parkinson’s Foundation Research Advocate who has YOPD. Research Advocates partner with researchers to design trials, provide recommendations, and report study results to the Parkinson’s community. They are trained experts with lived experiences and use their voice and perspective to inform key decisions in Parkinson's research studies.
In this episode, Israel shares his experience of participating in research studies throughout the course of his disease.
Released: October 31, 2023
Israel Robledo works as a special education teacher. He was diagnosed with Parkinson's disease in 2007 at age 42. He soon became involved with the Parkinson's community as an advocate when he attended the first Learning Institute developed by the Parkinson’s Foundation and worked to have increased clinical trial participation and promote health-related quality of life issues related to PD.
This episode is sponsored by Biogen’s Luma study, for more information about Luma, visit LumaStudy.com.
My Parkinson’s disease (PD) diagnosis came in 2000, when I was only 25 years old.
I first noticed my symptoms while running an automotive airbag replacement franchise that our family owned. I began dropping tools and losing control of my left hand. At first, we thought it was carpal tunnel, but then my entire left side became affected.
It took experts in Chicago, IL, a few months after my first symptoms to diagnose young-onset Parkinson’s. At that time, no local neurologists in our Northern Indiana community had seen anyone in their 20s with PD.
Initially, I was devastated. I only knew the worst parts of the disease and knew nothing about being able to control symptoms with exercise. During the first few years, progression was slow but constant. I wondered how long I would be able to function and be "useful.” My future was unclear.
Now, at age 47, I have certainly seen the difficult sides of PD. And I still have days that I am down and have trouble dealing with PD. But I am thankful to still be bicycling, bowling and golfing. I also enjoy cars, computers, classic video games and pinball.
What I have learned about living with Parkinson’s
I believe one key to dealing with Parkinson’s is to keep doing the things you love. Keep active and keep moving. If you stop moving, you will stop moving. Exercise is extremely important to slowing progression. Bowling helps me practice balance and helps with flexibility. I bowl two nights a week — Thursdays with a group of longtime friends and Saturdays with my wife, Kelli, and another couple.
Through experience, I know that the right Parkinson’s study can change lives. In 2015, I attended my first Moving Day Chicago to raise funds for PD research, which introduced me to the Parkinson’s Foundation. Coincidentally, that same year I participated in a study through the University of Maryland in which I was the second person to receive an MRI focused ultrasound. That treatment helped me in significant ways, and it gave me additional hope for a cure, and at least relief in my lifetime. And the information about surgical treatments on Parkinson.org was a critical resource I used as I went through the trial and was searching for trials to join.
When it comes to Parkinson’s, don’t be afraid to try new things. I recently signed up for an ax throwing league for a few weeks. When my wife and I first went together, I did surprisingly well.
If PD forces you to give something up, take hold of something else that you enjoy.
Also, don’t try to hide your symptoms. For me, it was a great relief when I gave up trying to hide PD. I learned to simply embrace it and make people aware of my circumstances.
Stress can be a major influence on symptoms. Avoid it as much as possible.
Stay up to date. I frequent Parkinson.org to keep up with trending news on what is currently going on with new PD treatment and medications.
There has been a lot of progress in the past few years. I am optimistic that we will see something game-changing soon. My only concern is whether it will be affordable.
Find a knowledgeable neurologist and movement disorders specialist. Getting someone with whom you are comfortable and who listens and understands your needs is very important.
No two people are exactly alike — so don't necessarily compare yourself with someone else with PD. There will be some similarities, but there will be differences as well. Medications and treatments vary for everyone.
Lastly, faith and family are also huge parts of my support system. They are crucial to help combat the effects of anxiety and depression. Both will still creep up — but with faith and family they are easier to handle.
Learn more about currently open research studies on our Join A Study page.
Parkinson's Foundation Launches: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants. The Foundation will provide resources to launch and maintain the network for a one-year period.
Upcoming Meeting Date:
– December 12, 2023
There is no charge to attend, but registration is required in order to receive the Zoom link.
Parkinson's Foundation Launches: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants. The Foundation will provide resources to launch and maintain the network for a one-year period.
Upcoming Meeting Dates:
– November 14 and November 28, 2023
– December 12, 2023
There is no charge to attend, but registration is required in order to receive the Zoom link.
Parkinson's Foundation Launches: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants. The Foundation will provide resources to launch and maintain the network for a one-year period.
Upcoming Meeting Dates:
– November 14 and November 28, 2023
– December 12, 2023
There is no charge to attend, but registration is required in order to receive the Zoom link.
Learn the basics of clinical research as well as the benefits of participating. Know what to expect and how to get involved in Parkinson’s research. You will also hear about how people with Parkinson’s and care partners are being involved in the research design process.
Speakers
Jim Beck, PhD
Senior Vice President, Chief Scientific Officer
Parkinson's Foundation
Evelyn Stevens, MPH
Director, Community Engagement
Parkinson's Foundation
We will also hear from a Parkinson's Foundation Research Advocate
There is no charge to attend, but registration is required.
Join the Parkinson’s Foundation in person or online for the Carolinas Chapter Parkinson’s Symposium. Hear about ongoing research, current treatments, and resources available to help you live your best life with Parkinson’s. In-person attendees will also have an opportunity to meet with exhibitors and pick up information during our Resource Fair.
Expert Panelists
Nicole Cool, BSN, RN Medical University of South Carolina
Kimberly Gamble Atrium Health Neurosciences Institute
Risa Hanau, LCSW AuthoraCare Collective
David Haynes, CLTC, CEP Haynes LTC Insurance
Vanessa K. Hinson MD, PhD Medical University of South Carolina
Amy Marriott, PT Cone Health
Maysen Mesaros MS, CGC Medical University of South Carolina
Mustafa Saad Siddiqui, MD Atrium Health Wake Forest Baptist
Myriam Sollman, PhD Prisma Health
Dennis Toman, Esq., CELA The Elderlaw Firm
People with Parkinson's & Care Partner Panelists
Mike Horak and Family
Doug and Grace Boyce
Edwin and Michelle Costillo
Phil and Julia Gee
For in-person attendees: In-person check-in and resource fair starts at 9 a.m. ET. Lunch will be served.
For virtual attendees via Zoom: The live stream starts at 9:45 a.m. ET
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.
