I am Frank O’Mara, and I was diagnosed with Parkinson’s disease (PD) in 2009. I was 48 years old.
As a kid I dreamed of being an explorer. My father took me to a pub called the South Pole, which was owned by Tom Crean, a veteran of polar exploration at the turn of the last century. Looking at the worn-out memorabilia displayed in that shabby pub in county Kerry, I resolved to one day make a trip to the pole.
In my teenage years I had more conventional ambitions, many of them I achieved. I became a three-time Olympian, a World Champion and broke a four-minute mile. My father finished school at 13 years of age, so I wanted an education. I have two graduate degrees. I worked for 14 years in the wireless industry and became a senior executive for a Fortune 200 Company. I had disappointments along the way too. Both successes and failures were formative.
Then my familiar world was turned upside down. The company I worked for was bought by a bigger rival, and the very next day I had the first symptom of a mystery disease. I was in severe denial. Eventually I accepted the reality that at 48 years of age I had Parkinson’s disease. I continued to work for a few years relying on trusted associates and various ruses and schemes until I could no longer hide the symptoms.
Contrary to a typical prognosis of young-onset Parkinson’s, my condition deteriorated much quicker than expected. I couldn’t walk, could barely talk, experienced extreme restlessness, suffered from debilitating and scary cramping and full-body tremors. I was in pitiful condition and relied heavily on my wife, family and friends to survive.
Deep brain stimulation (DBS) provided relief. Tiny holes were drilled through my skull, electrodes were implanted deep into my brain and attached to a pulse generator in my chest. This allowed voltage to constantly run to my brain, which serves to dampen the faulty signaling caused by Parkinson’s.
It took two years, but my condition improved sufficiently enough to make a trip to the Antarctic. I joined a National Geographic voyage from Ushuaia, Argentina, made the two-day crossing of the Drake Passage and was at Elephant Island on the 100th Anniversary of Ernest Shackleton’s death. I even managed to complete two extreme hikes on the continent.
I still struggle with acceptance, and I know I can’t beat Parkinson’s. I have learned that if you fixate on future symptoms, you could be paralyzed with fear. You have to play the cards that you currently hold and not a hand you may be dealt later.
In a book titled “Bend Don’t Break,” I recall experiences in my earlier days that prepared me for this hardship. Some were successes, many were failures but each help me cope today. Bend Don’t Break will be published in 2024.
New to Parkinson’s? Explore our Newly Diagnosed resources designed to help you live better with Parkinson’s.
In this special Wellness Wednesday, the Parkinson's Foundation will reveal our newest resource, a new and improved Hospital Safety Guide. During the program, we will review "My Five Parkinson's Care Needs," the resources built into the guide, and hear from community volunteers with both personal and professional experience navigating hospital visits.
Speakers
Richard Huckabee, Person with Parkinson's
Great Lakes Chapter
John Cox, Person with Parkinson's, retired paramedic firefighter
New York and New Jersey Chapter
Kelly Tran, Pharmacist
South Central Chapter
Heather Lester, Acute care physical therapist
Gulf Coast Chapter
Mary Ochoa, Inpatient speech-language pathologist, daughter of a person with Parkinson's
Heartland Chapter
There is no charge to attend, but registration is required.
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.
Parkinson’s Revolution will take place across the country on February 22, 2025. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD).
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
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.
RIDE 1: 11:00 am I RIDE 2: 12:00 pm | RIDE 3: 1:00 pm
Parkinson’s Revolution will take place across the country on February 28, 2026. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD).
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
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.
Parkinson’s Revolution will take place across the country on February 24, 2024. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD)
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
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.
Parkinson’s Revolution will take place across the country on February 24, 2024. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD).
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
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.
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.
