For four years, my neurologist told me my tremors were nothing. One day, I was getting a haircut. My hairdresser asked me if I had ever been evaluated for Parkinson’s disease (PD), because my walk reminded her of her Dad who had PD. That shook me up!
I asked my neurologist to reassess me. He said he thought my hairdresser was right. I switched doctors and my wonderful new neurologist confirmed that my tremors, coordination, slowness and rigidity challenges were indeed Parkinson’s.
My usual upbeat mood became dark. For a while I isolated as fear of an unknown future gripped me. I called the Parkinson’s Foundation Helpline, and asked many questions, read everything I could get my hands on.
I learned of the Rock Steady boxing program for PD. I never imagined, at 71, that I would be learning how to box! I also started water aerobics. I’d always been a walker, as my husband and I have three rescue golden doodles who need as much exercise as we do!
I looked at boxing and water aerobics as chores I had to undertake for PD. However, what surprises me is that I have come to truly enjoy both activities! I also enjoy the socialization aspect of both, and not feeling alone. Over the last few months my boxing improved so much that I’ve added a regular class!
Last week I saw my new neurologist. She told me that I have improved remarkably! My tremors are less frequent, less intense. My rigidly is gone. My coordination is better. I attribute this improvement to not only carbadopa levadopa, which I only recently started, but to boxing, water aerobics and walking.
PD professionals who encourage vigorous exercise are right! The Parkinson’s Foundation Helpline specialists and my doctor stress exercise all the time!
I’ve come to know how critical it is to incorporate other resources as well. A loving, compassionate support system is vital. Socializing is paramount. Having fun with friends and family is medicine! A “most of the time” healthy diet matters! Meditation, rest and yoga are helpful as well!
My advice is to find what works best for you! My mantra is the 3 P’s…Positivity, Peace, Proactivity. Living a full life is possible. Don’t give up. Help is out there.
Find the Parkinson’s exercise class that works for you! For virtual options, explore our Fitness Friday videos and events. For in-person classes, visit your local chapter’s webpage or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).
I’d like my Parkinson’s story to not be about living with limitations but rather about living with possibility.
In 2015, my hometown of Union City, CA, and my fellow Mark Green Community Sports Center class attendees became the first Moving Day team, and received a Parkinson's Foundation community grant that made Union City’s Mark Green Sports Center the first Parkinson’s exercise program in the South East Bay a reality! Robert Magbanua Jr, our Parkinson’s fitness leader, trainer and program designer, and Corina Hahn, community program administrator were instrumental in making this happen.
Over the years this program has grown to include caregiver support and classes that are offered five days a week and at home through Zoom. Robert’s charisma and enthusiasm keeps him in demand for speaking and leading attendees at Parkinson’s Foundation events all around the San Francisco Bay Area.
About the same time as our first Moving Day event, I also became an advocate for awareness of the unique needs of women diagnosed with Parkinson's disease. In good part, looking at inequities when it comes to decisions about efficacy of drugs and treatments, that in the first place ignored gender differences in research with predominantly male subjects, and therefore skewed dosages and outcomes. Moreover single women, either without spouses or widowed, are more often relegated to nursing home care because they lack the means to advocate for aging in place, a familiar home, or for a clean home-like setting with the privacy and dignity of individual care.
These days my Parkinson’s story focuses on living with possibility thanks to a Parkinson’s breakthrough now dating back 20 years ago called deep brain stimulation (DBS) surgery, which I had two months ago. Still a miracle of science, it is a precision-driven, courageous team effort that has given me time in which some of the most debilitating features of Parkinson’s such as tremor and dystonia pain might be kept at bay, and I can have time to pursue activities and commitments that promote heart, hope, energy, awe, curiosity and love.
My Parkinson’s story? It is about “flourishing” with Parkinson’s disease and the “community to be found within it.”
Our Moving Day San Jose “Hop on the Union City A Train” team begins its ninth year raising funds, awareness and heartfelt support for the Parkinson’s Foundation. Let's not have to wait another 20 years for a breakthrough for Parkinson's!
Thanks to my family and especially, my friends, my "ohana," my family through love, My Parkinson’s story continues!
Sex and gender differences can drastically impact health and are important to consider when it comes to Parkinson's. Explore ourWomen & Parkinson's page.
In 2019, my dad, Mark Spence, told us news that no amount of preparedness could brace for — he had a neurodegenerative disease by the name of Parkinson’s. This was a bittersweet moment — finally, we had an answer. Unfortunately, that answer was the beginning of an unceasing fight. A lifelong commitment to which my father had no choice except to partake in.
Seventeen at the time, I didn’t see the gravity of the situation. What I did see, however, was an absence of fear in my parents’ resolve. Uncertainty? Sure. Confusion? Certainly. Fear? Hopelessness? Absolutely not.
In the years that have followed, my parents have made sacrifices, changed their life plans, and been through an uncertain valley that is hard to imagine. Yet, they never changed their resolve. Certainly, sacrifices were nothing new — they did raise my sisters and me after all.
Challenges and obstacles were not a phenomenon unique to this new era of their lives. They are both incredibly hard workers who know the meaning of persistence. Regardless, their strength through it all became a beacon for my adolescent self. Twenty-one years old now, I have decided it’s my turn to be strong for my dad.
For years, I wanted to make a difference in Parkinson’s research and awareness, but simply could not think of how to go about that. On June 11, however, I was struck with an idea. While driving home from Athens, GA, I had been mulling over training for an endurance event, alongside my studies, when it hit me — why not combine my love for endurance events with my desire to help the PD community?
Honestly, this was a convicting moment. I knew I had a valid idea, but the process would inevitably require putting immense pressure on myself — to complete such a challenging event with so many eyes on me was terrifying. It was at this moment, however, that the strength of my parents was exactly the beacon I needed it to be. I can do it. I must do it.
The next day, I emailed the Parkinson’s Foundation about my idea. Not only did the Foundation support my idea, but they could also not have been more helpful in connecting me to the right people, answering all my questions, and helping me lay the groundwork for what the fundraiser has become. Throughout the past few months, I have made wonderful connections with amazing people within the PD community, and I am so excited to continue pushing forward as a Parkinson’s Champion.
In late 2014, a gym member comes up to me after one of my exercise classes and told me that I would be the perfect person to teach exercise classes for the Parkinson’s community. Not knowing much about Parkinson’s disease (PD) at the time, I thanked her for the suggestion, and told her that I’d give it some thought.
I was so busy finishing up my graduate course work at the time that the idea quickly escaped my mind. However, over the course of the next year, this gym member was quite persistent in reminding me of the good I could do for the PD community with my Kinesiology and Personal Training background.
One particular day, she came up to me and told me about this great opportunity to apply for a Parkinson’s Foundation community grant, and that is where my journey with PD really began. That gym members name is Ann Boylan, and she was the inspiration for the Parkinson’s Exercise Program in Union City California.
My director (Corina Hahn), Ann, and I worked on the community grant application together. In our discussions, we planned to offer three premier PD exercise classes at the Mark Green Sports Center: Rock Steady Boxing, PWR! Moves, and Dance for Parkinson’s.
When we learned of the acceptance of our application, we were elated! Along with a few hand-picked instructors, I spent the year learning about PD and getting certified to teach PD exercise classes. My passion and previous experience with boxing and personal training helped me grasp the concepts quickly.
Since 2016, I have been involved with teaching and coordinating PD-specific exercise classes, support groups and special events that benefit the PD community. Throughout the years, we’ve been awarded additional community grants to help expand our reach, both in-person and virtually.
The Parkinson’s Foundation has made this incredible journey I’ve been on possible. I pay it forward by participating in the Parkinson’s Foundation Moving Day event each year through fundraising, leading exercise demonstrations and lending my voice on stage, when needed.
Keeping this program going was not without its hardships. In getting to know our students, we also began to know their struggles, pain and darkest thoughts. In these moments, the one approach and mindset I’ve had was to focus on what was within my own control: my attitude, my exercise prescription, and my energy in and out of class.
I’ve seen first-hand just how effective exercise can be in improving movement quality and mental health. This benefit only increases when we put exercise into a group setting with others who are walking the same path and experiencing the same struggle. It has been a pleasure to lend my hand and expertise to the fight against PD. I want to thank my fellow instructors: Carmen Davis, Michael Quebec, Nancy Flores, Jessica Vazquez, and all the staff who have ever assisted in our exercise classes.
Find the Parkinson’s exercise class that works for you! For virtual options, try our on-demand Fitness Friday videos through our PD Health @ Home program. For an in-person class near you, visit your local chapter’s webpage or call 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:
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.
Upon retirement, Gil Kim was ready to move back to Mississippi to be closer to his two grandchildren, Colebea, 10, and Oliver, 7. Gina Kim, Gil’s wife, was not quite as ready. After being diagnosed with Parkinson’s disease (PD) in 2011, Gina and Gil had built an intricate support system that worked for them, physically and mentally.
“We were never the type of people who would take a prescription and just wait,” Gil said. “Thanks to the Parkinson’s Foundation, we had a wealth of resources at our fingertips. We knew exercise was vital, so Gina became a boxer, pole walker, and a practitioner of Tai Chi. She joined clinical trials.” Living in Atlanta, GA, they were mere miles away from a movement disorders specialist (a neurologist trained in PD), a Rock Steady Boxing gym, their support groups. Gil volunteered and served on numerous PD groups. But eventually, Gina agreed to move to Mississippi, if Gil helped her build a support system.
Utilizing his strengths amassed from a 40-year career with the Army Corps of Engineers, Gil created a blueprint. “I was replicating a model that worked,” he said. He would soon find out that he was not only building themselves a Parkinson’s support system, but he was building one for an entire state.
“We relied on the Parkinson’s Foundation to help build our support community,” Gil said. He reached out to his Parkinson’s Foundation network in Georgia to help him plan a local PD symposium in Mississippi. Together, he and Gina launched a monthly support group, and one for caregivers.
Next, they applied and received a Parkinson’s Foundation community grant called “What’s Up, Doc?” The series of meetings aimed to bring together the newly diagnosed in the local PD community to inform, engage, and get them involved. “In our first meeting, a woman and her husband attended, she looked frightened to be there and frightened about PD, but by the end of it, she had a smile and told me ‘I’m happy,’” Gil said.
Gil is familiar with Parkinson’s Foundation resources because he has relied on them for more than a decade, through the various stages of Parkinson’s and caregiving. “Every week or two I hear from another Mississippian looking for help and hope,” Gil said. “I always suggest they call the Helpline and recommend they sign up for PD Health @ Home virtual events — these are game changers for people in rural areas, like Mississippi, where other resources are not available.”
Gil continued building the buttresses of a PD support system. Exercise was next. He found a local church that had built a boxing gym, provided coaches and volunteers that would ultimately host Rock Steady Boxing classes. Twice a week Gina and up to 30 people in the local PD community attend a boxing class.
Today, more than 60 people attend the local monthly support group meetings Gil and Gina set up. In their most recent meeting, Gil secured a movement disorders specialist from Dallas, TX, to speak with the group. To take it a level up, a volunteer donates to the support group, which Gil leverages into designing a healthy meal for every attendee. “Being an engineer organizer, I like to plan. Gina and I plan and prepare a healthy meal. We walk away from every meeting with a full stomach, full of knowledge and a happy face.”
Gil has succeeded in replicating a PD model that works for his wife. “We do things together. It’s all about not only taking care of her, but at the end of the day we help other people,” Gil said.
While Gil is dedicated to his PD community, he also makes moves on a national scale, helping guide the Parkinson’s Foundation through serving on its People with Parkinson’s Advisory Council and regionally on the Gulf Coast Chapter Advisory Board (President elect). He also helps guide the Rock Steady Boxing group. “It’s an honor to get involved — all of this involvement is dedicated to making life better for my wife,” he said.
Every April, Gil and his team submit a proclamation to make April Parkinson’s Awareness month and take a trip to meet with the governor to receive the signed document. “This year, we took a group of 30 people, and I knew I’d have a chance to speak with him, so I asked him, ‘do you know our state does not have a movement disorders specialist?’” Gil said. “He was surprised. I then told him my wife had to go out of state for deep brain stimulation surgery, but not everyone has the opportunity. My goal in letting him know we don’t have an MDS was so the next time he talks to a medical board or group of professionals, he could bring it up.”
In just four short years since their move, Gil and Gina have brought resources and events that bring people together, including helping launch Mississippi’s first-ever Moving Day, A Walk for Parkinson’s. But they have also found unlimited joy in grandparenting.
“My wife’s Parkinson’s is gradually progressing, and we love traveling, so a few years ago we began taking one grandchild at a time on a trip,” Gil said. Playing to their strengths as a retired teacher and engineer, they design each trip, complete with itineraries articulately built around history lessons, to cater to their grandchild’s individual interests. “We took our grandson to New York for a week. Our granddaughter to Paris. I know PD is depressing for a lot of people, but you have to look at everything going forward. Look at all the money we saved all our life, let’s go spend it. I’m sharing our story with them.”
Expert Briefing: Parkinson's and the Gut-Brain Connection
October 11, 2023
We know the brain and gut are connected. While stomach or intestinal distress can lead to anxiety or depression, gut-brain connections go much further — new research strongly suggests a link between the gut (the gastrointestinal system) and Parkinson’s disease. Learn more about the gut’s potential impact on symptoms and progression.
Carley Rusch, PhD, RDN, LDN, Medical Science Liaison
Abbott Nutrition
My PD Story
People with PD
Gary Canner
In 2017, at the age of 76, I was diagnosed with Parkinson’s disease (PD). Gut punch! Now what?
Up until this point, I had survived both prostate and bladder cancers, and with five cardiac stents. I must now deal with an incurable disease. How did I get this? Was I predestined through heredity? Was it the fact that my home in Miami, FL, used well water for nine years? Why me?
First, how did I know I had Parkinson's?
I must go back some 40+ years. I have always been active in community/regional theater. I was in a production of The Music Man, as Professor Harold Hill. I did not know at that time that "I had Trouble not with a capital T but with a capital P for Parkinson's!”
In 2017, some 40 years later, I again auditioned for a role in The Music Man and when the director handed me the script to read for a part, my right hand began to tremor uncontrollably. The director noticed and said, "Gary, are you nervous?” I responded, “No, I've been doing theater for more than 40 years.” I saw my general practitioner and was diagnosed with essential tremor. Wrong, I said. I did my own research and my tremor is a resting tremor, it appears to be Parkinson's. Off I marched to a local neurologist who watched my gait and then took a DaTscan to confirm his clinical observations.
I then sought out the experts at The University of Florida Normal Fixel Institute, a Parkinson’s Foundation Center of Excellence, for treatment of my PD. Medication soon followed after trying all types of alternative approaches, including medical marijuana and acupuncture. Nothing helped.
I was told that one of the reasons I did not have symptoms until I was already 76 was because I was a daily exerciser for more than 25 years. Yes, I was an Olympic style racewalker on weekends during my 40's and 50's. Walking 5K, 10K, half marathons and training for these races, I was delaying the symptoms of PD, without knowing it.
After learning that exercise was the most important component of delaying the disease, I continued partaking of exercise. I have always played golf, but that is not aerobic. Since diagnosis, I enrolled in a Rock Steady Boxing program, daily treadmill work in my local gym, and soon I will begin the LSVT Big program for PD physical therapy.
Yes, now six years post diagnosis, I have learned that I was always predestined to get PD. Through a genetic test I learned that I have the gene mutation known as LRRK2! Which means that since I am an Ashkinazi Jew, I have a much greater chance of getting PD because of where my ancestors settled in Eastern Europe, now called Romania.
I am now 82, a senior citizen living in a Central Florida "Over 55" community surrounded by hundreds of thousands of people, with a large percentage of them having PD and not knowing or understanding it.
Enter the Parkinson’s Foundation Ambassador program. In 2022, at the age of 81, I began the ambassador training program. I soon learned that my skills as an actor and my profession as a Federal Mediator for the U.S. Court of Appeals could easily be transferred to educating people throughout Central Florida about Parkinson's. Thus far I have presented at numerous public events, fostering "Knowledge is Power" when dealing with PD.
The Parkinson’s Foundation well-documented fact sheets and numerous books and periodicals and website allow me to present the Foundation’s message. It is one which resonates with our senior communities and is well received. The feedback is undeniably personal because everyone with PD gets it! We are all the same because we all have PD, but we are all different because we all have PD. That is my message.
Looking for specific symptom information? Tips for daily living? Explore our free resources to find the information you need to live better, right now.
I am 63 years old now, but I was diagnosed with tremor-dominant Parkinson’s disease (PD) four years ago. After much encouragement from my children, I decided to visit a neurologist to get answers.
I underwent a 30-minute diagnosis session with my local neurologist. At the appointment, he said, “You have Parkinson’s. You have 10 years to live, and it will not be good.” Then he walked out of the office.
I sat there in shock, not knowing which way to go.
A dear friend connected me to Dr. Joseph Jancovic from Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence. Dr. Jancovic is a specialist in Parkinson’s and movement disorders. After a thorough exam, he affirmed the PD diagnosis but decided to completely change to my medications. Within two days after this appointment my symptoms diminished, and my sense of self returned.
I have retired from work and filed for disability because Parkinson’s has affected my mental capacity, especially when it comes to dealing with stress. Despite this, I am determined to not allow Parkinson’s disease to define who I am.
I do everything I can to exercise and stay active. In the last four years I’ve hiked to tops of mountains in Colorado, taken up long range rifle marksmanship at 1,000 yards or more and continued with my love of Argentine tango. I have also put 1,000 miles in my bicycle in the last three months, and I do not plan on stopping.
I found out about the Parkinson’s Foundation while searching Facebook for Parkinson’s-related groups. I have started looking through the resources on their website for support as I continue to navigate this disease.
My best advice is to live life day by day — and sometimes minute by minute. You never can tell what will happen next.
Find a good a PD care team. Know that there will be good days in there, too, and make the most of them.
