My name is Christian, I’m 36 years old and I have young-onset Parkinson’s disease (PD). My goal in life is to inspire and motivate people, helping them believe that anything is possible and every obstacle can be overcome. I stress the importance of exercise, which is the only proven action that can slow PD symptoms from progressing.

I am a happily married with two beautiful kids. I am a full-time professional massage therapist and an obstacle course trail runner. Until recently, I lived in silence with my condition. I was trying to protect my family, but in reality I was protecting myself. I was afraid I’d lose my job because people wouldn’t want a massage therapist with PD.

My PD story began during a brief time in my life when I was inactive and unhealthy. I was 225 pounds and borderline diabetic. I was 31 and we were expecting our first child. I noticed a slight twitch in my right hand and had frequent heartburn. I saw a gastroenterologist who diagnosed me with fatty liver and gastritis inflammation, but I still had the tremor.

I went to a neurologist, who concluded that I had essential familial tremor and prescribed primidone. I saw her regularly until a new insurance plan caused a gap between appointments, which is when the tremor traveled from my hand to my foot. The neurologist implied that the new tremor occurred due to the delay in appointments. Primidone left me mentally foggy so I was switched to Propranolol. But I still felt that something else going on. During this period, I was never motivated to exercise.

In July 2014, I had a DAT-SPEC scan in hopes that it would rule out other conditions and confirm essential tremor. Something felt wrong when the technicians were surprised to see someone my age. Weeks went by. Finally, I saw my doctor and she bluntly said, “Just as suspected you have Parkinson’s. Here is some medication and I will see you in three weeks.” I was 34. I did not understand the diagnosis or the new medications.

I developed insomnia and grew incredibly depressed. The news of Robin Williams having PD and Lewy body dementia hit me. I started losing my mind over this condition. I kept thinking “stop shaking, I can control this.” My wife did not know what to do until a friend recommended a movement disorders specialist. He confirmed the PD diagnosis and changed my dosages. He spent almost two hours explaining Parkinson’s and assured me that I would be able to live a full life with PD. He also said that EXERCISE is essential in slowing the rate of progression.

It took several months to regulate my medication. My wife signed us up for a 5K jingle bell run. The whole family ran and had a great time. We all dressed like Santa. This was my first race. It felt great to run.

My wife signed us up for another race, which changed my life. I trained for a 5K. On race day I realized it was actually the Spartan Super 9-10 mile obstacle course. I was terrified. From the beginning I was in complete agony, but I didn’t quit. Some obstacles took a few attempts, but I flipped my first 300-pound tire, falling face down on it in the process. I took my time at each obstacle. I ran full speed at an 8-foot wall, grabbing the top of it and nearly breaking my foot. Hiding my PD for so long made me isolated so when a fellow Spartan asked if I was okay, referring to my foot, I ended up telling him I had PD. It was the first time I told anyone outside of my family. He helped me over the wall. For the next five miles I limped and hobbled through obstacles. Thinking of my family and children kept me going. That day I become a Spartan and a warrior against the battle of PD.

I started training regularly. Today, I weigh 165 pounds and I am a lean mean muscle machine. I lost weight and ate healthier in hopes that a new lifestyle would slow my PD progression. Since then I have completed five Spartan races, becoming the first person with PD to complete a Spartan Trifecta. I will compete in several more this year. My wife is a personal trainer and helps me train, not only for races, but to be a better father and husband.

I train like an elite athlete now. I have run a 6:15 mile. I am a trail runner, which helps my balance and proprioception. I lift weights to have better control of my body. I cross train with boxing and agility plyometrics at DopaMind boxing, which combats PD and effectively stimulates neurocognitive pathways.

PD is a part of me, but does not define me. In fact, it has elevated me to another level of grit, determination and perseverance that has transcended me in all aspects of my life. I want to inspire and spread awareness of how exercise helps people with PD. I am getting certified in personal training so I can help people with Parkinson’s. I once viewed my condition as a death sentence. Now I look at it as if I was chosen to do great things. I strive to run side by side with Allison Toepperwien, the first person with PD to compete on “American Ninja Warrior.”

I want to tell people with PD that whatever you decide, keep moving and don’t ever give up. One foot after another, move with forward progress. Don’t give up on me because I won’t give up on you. When the struggle is all you know, fighting becomes natural and quitting becomes impossible.

I have young-onset Parkinson’s disease. I’ve had it for at least 6 years, but it wasn’t until New Year’s Eve of 2014 when I was diagnosed. I’ve always been active. Growing up, I did gymnastics, cheerleading, track and cross country. When I was a young adult I became a certified Personal Trainer. Two years prior to my diagnosis, I began working out regularly, lifting weights and cardio training three to five days a week. I felt good. Exercise gave me the strength and energy I needed to keep up with my toddler.

After I was diagnosed, I was put on the trifecta of PD drugs: Azilect, Mirapex and Sinemet. Then I read how exercise was THE ONLY THING proven to slow the progression of PD. So, I began training much harder than I ever had. I began going to my local track and running up to a mile at a fast sprint. I walked the bleachers, working my way up to three sets of 10 to strengthen my core. Bleachers were tricky at first because of my balance problems, but by repeatedly sticking to my routine, balance became less of an issue.

I eventually worked up to a 400-meter sprint, finishing only 10 seconds slower than my high school time! The summer heat led me to begin working out indoors. After renewing my membership three to five days a week I would go to the gym and lift weights, alternating upper body and lower body. Because my left arm has the tremor, I lift as heavy as I can with my left shoulder to compensate for the stiff, rigid movement and lack of strength.

Last August, I began to train for the Savage Race – 7 miles interlaced with an intense 25-obstacle course. As part of my training I started going to my daughter’s elementary school to use the monkey bars twice a week. Something I realized after the race is that PD effects recovery time. When I used to work out or compete I would be out for a couple of days, and then I had the energy and stamina to take up where I left off. Although I finished strong, the Savage Race demolished my energy for about a month. I lost five pounds of muscle and when I went back to the gym, I had to cut back considerably and work my way back up.

Today, I’ve applied to be an American Ninja Warrior competitor. Why? Because I wish to break boundaries. I want to inspire people to get off the couch. I want people with PD to realize this disease can be controlled to a major extent by exercise.

I’ve experienced the benefits of exercise in my sleep. My PD therapy is doing weights or running the track. I have more energy, stamina and strength than many men my age.

The National Parkinson Foundation is instrumental in fighting this disease. As a nonprofit, they recognize how incredibly important it is to exercise. Early on in my process, someone with PD told me, “Whatever you do, don’t stop. If you stop, the disease will take hold of you.” To be a part of a team that believes in that, motivates and educates movement and exercise was a no brainer for me.

I look forward to not only helping plan, but also participating in Texas’ first Moving Day® DFW! I went to college in Dallas and I think it’s the perfect spot to show the rest of America how Texans are pounding the pavement against Parkinson’s.

Allison Toepperwein is a single mom, blogger and fitness enthusiast who is overcoming Parkinson’s. She blogs about living with hope at www.LitWithinBlog.com.

Check out Allison's American Ninja Warrior Submission:

Yes, I’m a veteran ― in more ways than one. I served as an officer in the U.S. Navy from 1966 to 1971. I spent my Navy career flying airplanes, including 18 months in Southeast Asia. My most important job was flying medivac missions in the Philippines and in and out of the war zone. It was an intense time for America, both at home and abroad. I must admit, I was happy to return to civilian life and enter graduate school.

It was in graduate school that I first noticed changes in my gait and my balance. My left foot began to drag as I walked, and occasionally my toes would cramp so hard that I’d have to stop and take off my shoe. The symptoms worsened very gradually, so gradually that I didn’t bother seeing the doctor about them for a couple of years. When it got so bad that I could no longer walk more than a few yards without the cramp in my left foot, I started seeing doctors — lots of them. 

For 12 years I shuttled from one specialist to another, trying to pin down my problem, but none of them ever suggested Parkinson’s disease (PD). When I suggested the possibility, they said I wasn’t old enough for Parkinson’s (the term young-onset PD had yet to be invented). In 1983, at the age of 39, I was finally diagnosed with Parkinsonism.

In many ways it was a relief to have a name for my condition. At least I was no longer facing the unknown. How wrong that notion turned out to be! It soon became clear that there was very little known about Parkinson’s or its ‘isms’ despite it being identified for almost 200 years.

You could say that my PD arrived at a good time, because the patient community was no longer waiting patiently for better treatments or a cure. As I began studying the condition and working out my own strategy for dealing with all its ramifications, I noticed that there was a growing resolve among patients and their families to prod the medical community and the government-supported NIH researchers to increase their study of the disease and work toward finding a cure. I became a patient advocate and I became aware of the huge need for awareness and funding for PD research. 

In 1998, I attended a Parkinson’s Action Network conference in Washington, D.C., including celebrities like Muhammad Ali and Michael J. Fox, urging Congress to appropriate more funding for research in Parkinson’s. I also noticed that there was a surprisingly high number of veterans in the advocacy group. They were convinced there was a connection between exposure to Agent Orange and PD. It turned out that some of the best on-going research in PD was being conducted under the guidance of the U.S. Army.   

In 2011, as a result of the Veterans’ advocacy efforts, Parkinson’s disease was finally recognized as a covered condition of service in Vietnam and exposure to Agent Orange. Since then, I have received my care and treatment for PD at the West LA VA Medical Center. The VA (PADRECC) continues to do a great job for me and many other Veterans.

The last 20 years has seen a major shift in the treatment of PD and the understanding of the role exercise plays in neuroplasticity. When I was first diagnosed the doctor said, “Go home and find a comfortable chair.”  No one would say that now.

My personal strategy for dealing with PD has always been to outrun it. I began running almost immediately after my diagnosis, and by the time I reached 40, I knew that running gave me the strength to better manage my PD symptoms. In my 40s, I ran 5k and 10K races regularly and once every year I ran a ½ marathon as a check on my PD progression. I was fortunate that my favorite sport turned out to be the best thing I could do to control my Parkinson’s.

At 51, I decided to run my first marathon. It changed my life and inspired a friend with PD to do the same. Mary Yost decided that if I could do it, so could she; so, together with some friends, we formed Team Parkinson. In 1999, we became an official charity of the Los Angeles Marathon, and began using the marathon as tool to help PD patients and their families to raise awareness, fund research and improve their quality of life through exercise. Since our first effort in 2000, Team Parkinson has contributed more than $3 million dollars to Parkinson’s research.

Now, I can say I’m a Veteran, not only of the Vietnam War, but also a Veteran of the war on Parkinson’s, and a Veteran marathon runner as well.

The VA Parkinson’s Disease Research Education & Clinical Centers (PADRECCs) are Centers of excellence designed to serve Veterans affected by Parkinson’s through state-of-the-art clinical care, research, education and national outreach and advocacy. Learn more at  www.parkinsons.va.gov

The Parkinson’s Foundation honors those who have served and continue to serve our country. If you are a veteran with Parkinson’s or care for one, read our new resources: Veterans and Parkinson’s Disease  and Veterans Benefits.

Every year Dick Field invites his family on an adventure. “We try to take all our grandchildren to interesting places,” Dick said. Their adventures took on a new meaning — and some modifications — when Dick was diagnosed with Parkinson’s disease (PD).

After going to Africa, the family set their sights on Iceland in 2017, where icy terrain proved to be challenging. “It was a difficult trip and I could not complete the journey,” Dick said. So, in 2018, Dick better prepared himself physically and invited the family to join him in southern Spain, for a hike — with a purpose.

Full of history and culture, Dick challenged each of his family members to climb the Rock of Gibraltar, together "I will give the Parkinson's Foundation a thousand dollars for each of you who make it to the top," Dick told his children and six grandchildren. Everyone was motivated and ready to go.

Dick prepared by timing his medication and packing his walking stick. When traveling with six children, there was a steady supply of snacks. He also planned his path. “There are two sides of the climb, one is a sheer drop and one is a more gradual climb, like climbing the lower part of the Rockies," Dick said. "Guess what side our family selected?”

From eight years old to 78, the family of 12 began their ascent. "We arrived early so that we had the climb to ourselves," he said.

“It was a beautiful day and the Mediterranean was sparkling blue,” he said. The Field family set their own pace, stopping to meet a variety of interesting groups along the way. “The climb attracts so many types of people my grandchildren were able to meet,” he said.

It took four hours to reach the 1,388-foot elevation. “I felt elated when I got to the top,” he said. “Elated that I’m still able to do this kind of stuff.” From the top they were able to see Morocco, Spain and France. The family took it in and began their descent, making memories and taking photos along the way.

Dick’s grandchildren are no strangers to Parkinson’s, as another close family member is also living with PD. “They are all aware of Parkinson’s disease and knew it’s why we were climbing,” Dick said. “They now all have a newfound sense of different ways you can contribute to a non-profit.”

Serving as a Parkinson’s Foundation board member since 2013, Dick believes in the Foundation and has both helped and received help from the Foundation.  

“Many People who have been diagnosed don’t know what to do,” he said. “Simultaneously, many movement disorder specialists don’t have the time or inclination to take deep dives with their patients to discuss this disease. At the Foundation, we’re setting new standards to help more people, especially through our Centers of Excellence, which provide a detailed action plan for managing your disease.”

“The focus of the Foundation is cure and care. Everyone who works at or together with the Foundation is on the right track, coming together to further Parkinson’s research,” Dick said.

Dick and his family are now setting their sight on a new adventure in 2019. He won’t let his Parkinson’s slow him down.

Like the Field’s family, if you are interested in raising awareness for the Parkinson’s Foundation through a Do-It-Yourself fundraiser learn more and Parkinson.org/Champions. 

Playing a round of golf at St. Andrew’s in Scotland is a bucket-list pilgrimage for many avid players. It is literally the “Home of Golf,” with more than 600 years of rich history, including hosting the prestigious British Open 29 times.

I’m not a great golfer, but I love the game. So when I had a chance to play at St. Andrew’s in early 2015, it was a dream come true. But it turned out to be much more than that.

When I went to bed at the hotel that night, I was tired, but I also noticed something else: I didn’t ache. And I felt relatively loose. Those were strange feelings for a guy who had been battling Parkinson’s disease (PD) for almost a decade.

At first, I thought it might just be adrenaline — riding the high of fulfilling a longtime wish. But when I returned to Chicago, I played another round of 18, and I could tell that my right arm and right foot were looser. My right side is my weak side, so I thought that was interesting. I played again, and had the same feeling. I played eight to ten more times over the next few weeks, and I could tell something was definitely happening.

I called my neurologist, Dr. Martha McGraw at Northwestern Hospital, a Parkinson’s Foundation Center of Excellence, and told her the story. I told her my walking was back to normal, that I could run, and that my right leg wasn’t dragging anymore. She was skeptical, but told me to make an appointment, so I did. When I went in, she told me to walk down the hall. When I turned around to walk back, she was in shock. She couldn’t believe it. She even said, “Oh my, it looks like you’re pre-Parkinson’s.”

Dr. McGraw couldn’t explain it, and neither could I. I thought I had been getting enough exercise all along. Since my 2008 diagnosis, I had tried everything. Aerobics. Stretching. Tai Chi. Hip-hop dancing. Triathlons. Yoga. Boxing. I even ran a marathon! I believe that these things, plus my medication, might have slowed down my Parkinson’s, but none helped all that much. And certainly none took me back to how I was feeling before I was diagnosed.

But then came golf. And even better, I discovered Topgolf, which is kind of a jazzed-up driving range, combining golf with food and fun, sports and socializing. I started playing at my local Topgolf a few times a week, and when their corporate headquarters heard my story, they gave me a platinum membership and a custom-designed set of clubs.

I play Topgolf five to seven times a week, hitting about 140 balls each time. I also play a regular 18 holes a couple times a week.

I’m amazed at how I feel now, not just physically, but emotionally and spiritually too. When I was first diagnosed, I was angry with God. After I railed at him for a while, I felt like he was saying, “Are you done now? I’ve got plans for you. I’ve got your back.”

Now, I wake up every day and walk by faith, not by sight. I just take it one day at a time. But overall, I don’t feel like I even have Parkinson’s anymore, even though I know I do. My strength is back, my voice is strong, I don’t choke on things anymore, I can type again, and I have more energy than I’ve had in years. I’m 62, but I feel like I’m in my 40s again. I definitely have a new lease on life.

I feel like golf has been the perfect par-scription for me. Pun intended.

In honor of Gary Smith and World Parkinson’s Day, Topgolf donated $10,000 to the Parkinson’s Foundation in 2017. Learn more about Topgolf at www.topgolf.com.

For Don Miller and Marie Head of Big Canoe, GA, their devoted marriage, and their tremendous admiration for each other’s resilience, helps them manage the challenges of Parkinson’s disease (PD).

“Don is a fighter,” said Marie. “From the moment he was diagnosed, I have told him that he is my hero. He has never stopped fighting.”

“It's a wonderful union,” said Don. “I'm so lucky to have found a caring partner like Marie in mid-life. Tackling PD without her would have been so much harder. She's an excellent care partner and very loving person.”

Don and Marie have been passionate members of the Parkinson’s Foundation community since 2013. They are consistently ranked among the top fundraisers at Moving Day Atlanta each year, and Marie serves on the People with Parkinson’s Council. The couple was delighted to be included in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) to help raise awareness.

“I hope this PSA will let people know they are not alone — resources are available to both people with PD and people who are caring for them. They are a part of a larger community that wants to help,” said Don.

Part of the PSA was filmed at Don’s New Beginnings Boxing class, which has been another valuable source of support for the couple. “We live in a rural community without many resources, so we greatly appreciate this PD boxing program, which was started with a Parkinson’s Foundation community grant,” said Don.

Don and Marie were still newlyweds when Don began to suspect that he had PD. He first noticed that his once impeccable handwriting had become smaller and harder to read. Handwriting changes can be one of the early signs of PD.

Initially, Don chalked it up to being retired and not writing as often. In the months that followed, however, coordinating activity between his brain and his hands become even more challenging.

On a vacation in Florida in 2011, Marie noticed that Don struggled with the lock for their bicycles — he couldn’t line up the top of the lock with the bottom.

“In the car that day, he told me, ‘I want you to look something up: Parkinson’s disease,’” said Marie. “He was already doing the research. I panicked and said, ‘wait a minute, why are we going to Florida? We need to get back to Atlanta and see a doctor.’”

Back at home, a neurologist confirmed the couple’s fears: Don indeed had Parkinson’s.

The news was especially difficult because Don and Marie already had extensive experience with degenerative illnesses. Each had been previously widowed after caring long-term for spouses who succumbed to health battles.

“The diagnosing doctor was a neurologist, but not a movement disorder specialist,” said Marie. “We were handed a prescription and told, ‘here are some drugs — come back and see me in about four months and we'll review your symptoms again.’”

Despite their discouragement in that moment, the couple approached PD with determination. They dove into action, seeking resources to help Don live a longer, healthier life. The first stop was the Parkinson’s Foundation.

“The Parkinson’s Foundation has so much helpful information,” said Don. “It offers so many resources for support and opens doors to the latest information and research. The Foundation has let me know I'm not alone in my fight.”

For Marie, the Foundation’s Global Care Network was game changing. “The Foundation helped us understand why finding a movement disorder specialist was so important. We ended up at Emory University [a Parkinson’s Foundation Center of Excellence] with great care and haven’t looked back.”

In successfully adjusting to their new reality, the couple finds that communication is key. “When I was first diagnosed, sometimes communications could be complicated,” said Don. “I like to do things for myself when I can, and Marie is often quick to jump in to help.”

One evening, as the couple dressed for an event, Marie saw Don struggling with the buttons on his shirt. “I just reached up and fastened the buttons,” said Marie. “I remember that he took my hands gently and he said, ‘you know what, why don't you let me ask you when I need help.’ We made an agreement right then and there that we both would ask for help when it was needed instead of assuming.”

Don and Marie embrace outings with friends and exercise as ways to help manage the movement and non-movement symptoms of PD while nurturing their relationship. Together, they travel the world. They enjoy hiking, fishing, biking and dancing. “Don bought me ballroom dance lessons when we were first married. We love to dance,” said Marie. “Parkinson's has interrupted that just a little bit because of balance but we often find ourselves slow dancing in the kitchen.”

Don’s advice to everyone in the PD community is to fight. “With PD, there will be good days and bad days. Be active in body, mind, and spirit. Communicate honestly with your family, friends and care partners. Fight hardest when you feel your worst.”

Watch our “Better Lives. Together.” public service announcement

When Susan Brown of Atlanta, GA was first diagnosed with Young-Onset Parkinson’s disease (YOPD), she thought first of her 78-year-old father who lives with Parkinson’s. “I decided early on that I wouldn’t make assumptions about my path relative to my father’s progression, and I would find a community of people with Parkinson’s and caregivers to join,” she said.

Susan found that community in the Parkinson’s Foundation and hopes that her appearance in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) will help others with PD find their community.

In the four years since her diagnosis, Susan is settling into the reality of living with a progressive neurodegenerative disease.

“When I was first diagnosed, I needed to find my Parkinson’s village,” said Susan. “The Foundation has provided a framework for me to focus on putting a face to Parkinson’s disease. It is a marathon that affects the whole family, and it is me.”

Helping the Parkinson’s community is meaningful to Susan. “Serving on Parkinson’s Foundation Georgia Advisory Board has given me a sense of purpose and a way for my family to rally around the hope that a cure is on the way,” she said.

For two years prior to her diagnosis, Susan’s doctors chased down symptoms that included a stiff hand, achy shoulder, tremor in her left foot and fatigue. “I strongly suspected I had Parkinson’s because I had developed symptoms that resembled those of my father, who had been diagnosed in his fifties also,” said Susan.

Susan vividly recalls the moment she was given her diagnosis. “It was Halloween in 2017 and I was alone when the call came in,” said Susan. “I distinctly remember standing there wondering how I was going to manage being a mother of two teenagers, a caregiver for my father, a wife, a friend, and a colleague at the Atlanta Speech School while dealing with Parkinson’s.”

Susan worried about how the news would impact her family. She said, “How would I tell my parents who would worry about me constantly as soon as I told them? I didn’t want to sign up my husband for a future that would look very different than what we envisioned.”

Modifying her lifestyle has helped Susan cope, but she is honest about how challenging her new normal can be.

“I take 20 pills a day. I exercise (and I’m not an exerciser), and I battle brutal insomnia,” said Susan. “Most days, my Parkinson’s is at the top of my mind. There are very few moments when I forget I have it, but I have an excellent team of doctors, trainers, family, and friends that helps me through it all.”

Susan is proud to celebrate her supportive community each year at Moving Day Atlanta. In 2021, she was Atlanta’s top individual fundraiser. Her team members included friends and family from around the world. A key to her success is asking each of her contacts to share her team page with nine people since every nine minutes, someone is diagnosed with Parkinson’s in the U.S.

“Moving Day is an opportunity to celebrate our friends and family who walk with us on the Parkinson’s journey,” said Susan. “Our team, the Atlanta Movers and Shakers (pun intended), just finished participating in our fourth walk, and I’m proud to share that we raised more than $28,000 this year for the Foundation,” said Susan.

Susan approaches life, no matter how challenging, with optimism. She said, “Not long after being diagnosed, I attended a birthday party where I spent joyful hours dancing with friends. A friend recently reminded me to keep dancing, and I plan to!”

Watch our “Better Lives. Together.” public service announcement