I was diagnosed with Parkinson’s disease (PD) 30 years ago. For me, it started as an achiness. My hands were in a lot of pain and stiff, but they weren’t trembling yet. I started looking for answers and one day, a doctor walked in the room, looked at me and said, “you have Parkinson’s” which I thought was a pretty bold statement for never having seen him before, but he was right.

After that appointment, I cried the whole way home. I was overwhelmed with questions. What does this mean for me? What does it mean for my spouse and my family?

I did not find any peace in those questions, and I did not know what to tell anybody. So, I kept it to myself. I had Parkinson’s for 15 years before I told anybody, including my kids. I was a clinical nurse, and I worried about how sharing the news would affect my job, social life and family life.

I did a lot of overthinking and watched my behavior. I held on to the things I could control until PD made it impossible. Any uncontrolled movement sent me spinning, wondering if anyone noticed. Part of my job as a nurse and diabetes educator required me to travel to different clinics to teach people how to manage their diabetes. When I was teaching the classes, my mouth would get dry, and I could hear changes in my voice. It was getting harder to hide. I just wanted to look and feel like everyone else around me, but once I hit the 15-year mark, I couldn’t hide it anymore.

When teaching those classes, I told participants they needed to focus on what they could control and the positive things they could do to manage their disease and I realized I needed to do the same thing for myself. I decided I wasn’t going to focus on the negatives of having Parkinson’s and I was going to do everything I could to slow its progression and improve my health.

Staying active is vital, and I made sure I exercised for at least 45 minutes to an hour every day.

I started to tell people in my life about my diagnosis, including my kids. That was hard and I didn’t want anyone to look at me and only see the disease. My kids were shocked, worried about me and wondered if it was hereditary. I think it took them some time to digest the news, but if anything, it has driven them to offer more help to me and my husband. They have been so supportive. My friends were also shocked. Some of them were angry I kept it from them, but I did what was best for me at the time.

Now, openly living with Parkinson’s is just part of life. As one of my friends says every time he watches me take a handful of pills, “better living through chemistry.” And in my world, that works.

I also want to share some of the things people don’t usually think about when they hear “Parkinson’s disease.” There are so many little and big ways this disease affects you.

• It makes your eyes dry. I use daily eye drops and my doctor recommended I wrap plastic wrap around my head to keep my eyes moist. All I need is a CPAP machine to look like Darth Vader when I go to bed.
• It affects your voice. My voice crackles now and I start to sound like Mae West.
• It makes opening bags difficult. Those plastic bags at the grocery store are impossible to open. So is a bag of potato chips.
• It changes the way you eat. I must have salads chopped extra fine or I end up wearing them. And do you know how hard it is to eat peas with a fork?
• It makes putting on makeup a small feat. If I’m not careful, I’ll end up looking like Lucille Ball, painted all over, or a two-year-old with a coloring book. And put on mascara at your own risk!
• It means small tasks are more difficult. Mending clothes, putting on jewelry, decorating a cake and buttoning buttons or pulling up zippers can feel impossible.
• It affects how I interact with technology. I have an iPad, but I haven’t been able to master a lot of things on it because tremors cause me to touch the same button two or three times. Same with the cash machine, where punching in my PIN number wrong has caused me to lose my card.

These things are just a matter of fact for people with Parkinson’s. These little annoyances add up and change your life. I have found ways to deal with them, and there are worse things than living with Parkinson’s, but some days, it moves to the top of the list. Which is why I got involved with the Parkinson’s Foundation. I have met many people through them, and they have made a lot of information available and have excellent resources, like Centers of Excellence, for people to receive better care. The work the Parkinson’s Foundation is doing is offering hope to those affected by PD — and everyone needs hope.

But we need to do more. We need more research so we can find new treatments and a cure for Parkinson’s. We need to make sure everyone can access the best care and find support through the Foundation’s resources.

My friends ask me how they can help, and I say the best thing they can do is make a donation. We need to invest in research so we can find a cure. We need to provide support for people with PD and their care partners. The Parkinson’s Foundation is doing this work, but they need our help. We all need to do our part and support this work. No one should have to live like this.

Make a donation to the Parkinson’s Foundation today

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.

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).

“No one knew what to do,” said Karen Weiss-Fisher, MD, recalling her father’s Parkinson’s disease (PD) diagnosis in 1990. Dr. Weiss-Fisher and her mother, who would eventually be her father’s primary care partner, were at a loss as to how to help him manage the disease. Their lives were about to change, and they did not have the tools to deal with the challenges ahead.

“My parents did not have community support,” said Dr. Weiss-Fisher. “My father was a fully-functioning, active and engaging dentist, approaching his retirement, which among other activities, included playing golf four days a week. His passion for golf was evident to all who knew him, as he had been a referee for the Ryder’s Cup in Palm Beach Gardens, Florida in 1983. Unfortunately, he physically deteriorated over the ensuing 13 years until he was unable to walk and was confined to a wheelchair. Disappointed and frustrated, he finally acquiesced and learned to enjoy golf by watching the PGA when televised.”

The uneasy and helpless feeling from her father’s diagnosis stayed with Dr. Weiss-Fisher. Several years after her father passed away, she learned about the Parkinson’s Foundation from a friend who shared a post on social media about Moving Day, A Walk for Parkinson’s. She reached out for more information and connected with the Foundation. With her personal experience caring for her dad, and her professional experience as a physician, Dr. Weiss-Fisher decided to volunteer her time to help others live a better life with PD than her dad. She became the first President of the Foundation’s Southwest Chapter, which included participating in Moving Day Phoenix and Parkinson’s Revolution.

 “I know my parents would have benefitted from today’s Parkinson’s community. I think the public is fearful of neurodegenerative disease primarily because of its unpredictable course. Today, thanks to organizations like the Parkinson’s Foundation, there are more resources that offer better methods to navigate the effects and symptoms of this degenerative disease.”

Recently, Dr. Weiss-Fisher expanded her support when she and her husband made a generous gift to the Reach Further campaign, our four-year fundraising initiative to invest an additional $30 million to accelerate progress on Parkinson’s disease research, improve care and treatments and increase access to quality of life programs.

“I am enthusiastic and passionate about the Reach Further campaign” she said. “The campaign’s dedication to advancing treatment, especially through the Foundation’s genetics initiative, PD GENEration: Mapping the Future of Parkinson’s Disease, provides new knowledge that is on the cutting edge of medicine. We are learning more every day about genetics and its role in the expression of Parkinson’s disease. I am optimistic that clinical trials will lead to new treatments and, one day, a cure.”

Dr. Weiss-Fisher supports the Parkinson’s Foundation and hopes to encourage others to join her in supporting this important work. She is grateful people with PD today can find support through the Foundation’s Centers of Excellence, Helpline, online resources and more.

“Resources like the Foundation’s Hospital Safety Guide would have alleviated many of the difficulties my parents encountered as they navigated my dad’s increasing medical care needs and confusing hospitalizations,” she said. “The Parkinson’s Foundation mission to improve the lives of people with Parkinson’s, their care partners and the whole Parkinson’s community is inspiring and important. The Foundation and the Reach Further campaign continue to advancing care and research, bringing us closer to a cure.”

Join us to Reach Further to make life better for people with Parkinson’s at Parkinson.org/Reach.

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.”