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.”

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.

Here’s to a cure!

You are not alone. Find expert Parkinson’s care in your area.

From Gatorade to The Quaker Oats Company, I’ve worked at some of the biggest companies, focused on clinical research that links exercise and nutrition parameters in health and athletic performance. As a nutritional biochemist and scientific researcher, I worked to understand how our bodies work and what happens when they stop functioning the way they should.

In 2013, I received the sobering news that I had Parkinson’s disease (PD). Like most people with PD, after I was initially diagnosed, I wanted to understand the long-term implications of this  progressive disease. As a former researcher, I began searching for answers.

My initial thoughts and feelings were about how my health would change and how PD would affect my family. I worried about keeping up with my daily routine, driving my sons to practice, working around the house or golfing — things many people take for granted.

Over the last 10 years, I’ve grasped how PD affects me, my family and lifestyle. My PD is tremor-predominant, but I deal with slowness and other non-movement symptoms, like low energy and sleep disturbances. It continues to be a challenge, but I’m taking it one day at a time.

Tracking Progress

Just over a year ago, my engineer son began working for Rune Labs, a company that created an app called StrivePD that helps people with PD track exercise, symptoms, medications, treatment side effects and sleep behavior. As a former PhD-level scientist, I can appreciate the data and its insights. My son asked me to try the app, so I did.

My outlook on PD has changed after using the app for just a few months. I feel I have more control over my disease, allowing more time to do things I love, like spending time with my family. It has improved my medication timing, workouts and dietary decisions. Since it links to my AppleWatch, it takes no conscious effort.

While Parkinson’s remains a struggle, StrivePD has helped me realize the importance of exercise and how it dramatically reduces my mobility issues. It motivates me to stretch, lift weights, complete core workouts and visit my physical therapist twice a week. Exercise has dramatically reduced my symptoms and helps me control them.

Looking Toward the Future

As I continue to use StrivePD, I plan to share my data with my clinician to better understand how my daily routine affects my disease, specifically exercise and how I can improve my energy and sleep. It can be daunting to encapsulate months of my disease experience in a one-hour visit. StrivePD helps capture symptom changes and a bigger picture of how things are going. I am proud of how my son continues to help build StrivePD so that people like me can better manage this disease.

Energy with exercise. After a decade of dealing with Parkinson’s, that has become my mantra. Exercise gives me the energy to go about my day and helps keep me alert. I urge my fellow PD community to have a goal and not let this disease control you.

Learn more about Parkinson’s and Exercise. Explore our Fitness Friday exercise classes you can try on-demand from home. 

I was diagnosed with Parkinson's disease (PD) in March 2021. I do my best to stay healthy and positive, while encouraging others in the PD community to do the same. I applied to be a Parkinson's Foundation Ambassador because I'm passionate about sharing information and helping others on this journey. I am also currently the Virginia Ambassador with the Davis Phinney Foundation, and I was recently invited to be an ambassador with the PMD Alliance.

I have a YouTube channel where I share my efforts for living well with PD, including exercise and motivational videos. I hope my videos inspire other people in the Parkinson’s community to keep moving and stay positive! I pledge to donate 50% of the channel's revenue to Parkinson's research.

In April of this year, I started my polymer clay jewelry business. I donate 50% of my jewelry sales to Parkinson's research as well. I'm excited to continue raising awareness for PD with this new venture! As of July, I've been able to donate over $800 help this cause.

I have been married 31 years. My husband and I have two sons, who are both married, and one grandson. My family is my greatest blessing and I'm grateful for their love and support with all my activities in the Parkinson's community. Our grandson turned three this year and has become aware of my tremor, so I published a children's book called "Grammy Has Parkinson's." I hope this book helps alleviate some of the mystery and concern children may have regarding family members dealing with this disease. I plan to also donate 50% of book sales to Parkinson's research. I still work full-time and aside from my activities in the PD community, I love spending time with family, hiking in our national parks, doing jigsaw puzzles and crafting. I'm proud to be a part of the Parkinson's community and know I'm in the company of brave, resilient warriors!

Get involved in the PD community by raising awareness and funds. Create your own fundraiser today!

My journey with Parkinson’s disease (PD) began a couple of years before my official diagnosis. I was 57 years old. My first thought that I may have Parkinson’s occurred when a colleague asked me why my hand was shaking. I thought that my sugar level was low, so I went and got a Coke. I now know the tremors in my right hand were not due to decreased sugar levels.

I had other symptoms as well, including cramping and fatigue. My handwriting also changed dramatically and became very small, sloppy and sometimes unreadable. I’ve had to retrain myself to write slowly and legibly. Additionally, my sleeping pattern changed and my right arm stopped swinging when I walked.

About a month or so later, I was at my annual physical and I mentioned the hand tremor to my primary care physician. She asked me to hold my hands out, and eventually said she wanted me to see a neurologist. At that moment, I knew I had Parkinson’s. I made an appointment. After a two-hour assessment, the prognosis was that I had young-onset Parkinson’s disease (YOPD). February 21, 2017, became my Parkinversary.

Even though I thought I had PD before my diagnosis, I was still in shock. I was scared; the more I read, the worse I felt. But one day, I decided to change my mindset and embrace my diagnosis. I did more research and got involved with the Maryland Association for Parkinson’s Support, eventually becoming a board member. This experience led to me to learn about the Parkinson’s Foundation and Moving Day, A Walk for Parkinson’s. I attended Moving Day Baltimore with my family; it was a great, educational experience.

I ended up taking early retirement due to my demanding, stressful, high-pressure and high anxiety job. Working only made my symptoms more noticeable and advanced my disease progression.

Six years later, now at 62 years old, my progression has slowed. I’m in the best shape I’ve ever been in! We moved to South Carolina, and I found a gym that offers Rock Steady Boxing. I organized a team for Moving Day Charleston, recruiting the twelve people in my boxing class as team members. Our team raised more than $5,000 to help the Parkinson’s community!

Now I work out about five times per week — Monday, Wednesday and Friday I start with a 30-to-45-minute stationary bike ride or some other cardio workout, and then I go to a Rock Steady Boxing class for about 75 minutes. Tuesday and Thursday, I work out at home for about 60 to 90 minutes. Saturday and Sunday, I do a lot of walking. Exercise is the best non-prescription medication for Parkinson’s disease ­— you don’t need a referral. I also enjoy taking walks with my wife, who is my extra set of eyes and ears.

I take my Parkinson’s medication as well as anxiety medication. For hobbies, I enjoy cooking (especially grilling) to make healthy meals, as well as going to concerts and tending to my vegetable garden. I make time for family, friends and myself. I also talk to people who are newly diagnosed with Parkinson’s and help them realize that living with PD is an adjustment, but life is not over. Parkinson’s is not a death sentence; if managed correctly, you can still have a good quality of life.

PD taught me that a positive attitude will go a long way, and that we should live life to the fullest. We are all Parkinson’s Warriors, always fighting, always courageous and always surviving. Parkinson’s disease will not define us — our courage and strength will! Keep up the fight!

We Care. We Fight. We Move. Find a Moving Day event near you.

On a Thursday evening in March 2007, one of my clients called and asked if I could travel from my home in Florida and be in California by noon the following day. He assured me that I would be home four days later.

As it turned out, I returned home six weeks later having closed one of the most complicated, contentious and stressful transactions of my legal career. By the time I finally made it back to Miami, FL, I realized that I had lost the ability to write my name and typing was all but impossible.

After seeing my general practitioner and an orthopedic doctor, I found myself at a neurologist. When the neurologist asked, “What can I do for you today”? I just laughed and I said “I think I have that disease — carpal tunnel syndrome.” He laughed back and said, “You have Parkinson’s disease.” He put the medication Azilect in my hand and said “Take this and if it works, then we will know that I am right.”

Little did I know that that was to be the beginning of this adventure that 16 years later I know to be Parkinson’s disease (PD).

I had heard about Parkinson’s disease, but no one in my family had it. In fact, I didn’t know anyone who had Parkinson’s disease. Thankfully, I didn’t have the crushing depression or debilitating anger that many people experience upon being diagnosed. I suspect that I didn’t know better, but I acknowledge that those reactions are real and must be addressed early in the diagnosis.

That’s where a referral to the Parkinson’s Foundation can be life changing. Through its initiative for those newly diagnosed, the Foundation fills the void of critical information most people with PD lack regarding their recent diagnosis. Often times, the diagnosing physician is too busy to provide a sufficient explanation on how to live a quality life with Parkinson’s disease.

Shortly after I was diagnosed, I was introduced to the Parkinson’s Foundation. My wife and I were invited to participate in a weeklong retreat for those newly diagnosed and their care partners. There, my wife and I became yoga fanatics. It was that introduction by the Foundation to the power of exercise in the fight against Parkinson’s that forever changed the trajectory of the disease for me.

Since my first encounter, I have been continuously engaged with the Foundation. I have participated in virtually every Moving Day Miami. I’ve spoken on behalf of the Foundation at many events.

It was that early introduction to the Parkinson’s Foundation, however, and their vast resources of information and support, as well as an incredible community of like-minded people, that really attracted me to the Parkinson’s Foundation. The mission of the Foundation to make life better today for people living with Parkinson’s all while advancing research toward a cure really resonates with me.

I have spent the last several months traveling across the country with my friend, Scott Rider, filming a documentary for a project titled Parkinson’s Across America. Our hope is to provide an informative, yet personal look at what it means to be living with Parkinson’s and to remind people that they can live long and productive lives despite their diagnosis.

While many of the people I have met share stories that include aspects of tremendous heartbreak and difficulty, each offers incredible hope and encouragement to those of us in the Parkinson’s community. One of the common sentiments that resonates so clearly with me is that, despite the difficulty that people living with Parkinson’s disease cope with every day, there is an incredible sense of gratitude for people, like the people at the Parkinson’s Foundation, who make it their life’s work helping people with Parkinson’s live better lives today.

The people of the Parkinson’s Foundation share a passion and commitment for making life better for people living with Parkinson’s that is unrivaled. Without a doubt, they are changing lives. I’m here to tell you that they certainly have changed my life and, for that, I am eternally grateful.

To be associated with an organization that is truly making a difference in people’s lives every day is an honor and a privilege. I am sincerely honored and humbled to be selected as the Paul Oreffice Volunteer of the Year.

Jim is a Parkinson’s Foundation volunteer who received our Paul Oreffice Volunteer of the Year Award in 2023. Meet  our top volunteers and explore ways to get involved today.