It was like skiing with a wooden leg.

It was January 29, 2011, and I was competing in the 50-km Noquemanon Ski Marathon. I was only 5 or 10 km into the course when the wooden-leg effect struck. It affected me every time I climbed a hill or pushed my pace. If I relaxed for a minute or two it would go away, but it always returned.

The hopes I had for a podium finish in my age group were clearly not to be fulfilled.

I was seen by regional sports medicine doctors and the Mayo Clinic at that time, but no one could provide a definitive diagnosis. I strongly suspect that this was an early indication of Parkinson’s disease (PD). Other symptoms appeared over time. I knew that something was wrong and that it was getting worse.

It wasn’t until February of 2019 that the diagnosis of Parkinson’s disease became evident. It is a diagnosis that was too familiar: my wife, Sally, also lives with PD.

Excellent medical care, a very active lifestyle, and good social connections have all helped me cope with my diagnosis and live well with PD.

In 2020, another outlet for dealing with Parkinson’s found me: music.

I was wide awake, at 3 AM in October of 2020, with the strains of Dolly Parton’s “9-to-5” running through my brain like an earworm. As I lay there, words started to come into my head —words about Parkinson’s — that fit the 9-to-5 tune. I soon realized that I needed to get up and write it all down or I would forget it.

I got up and turned on the computer.

Sally heard me talking to myself and singing and called out to ask what was going on. “I’m composing!” I called back. Over the next several weeks the entire song came together, but I had no idea what to do with it.

In November 2020, Sally and I had our semiannual appointments with our neurologist at the University of Michigan. At the end of my visit, I suggested that if my doctor had 3 minutes and 35 seconds to waste, I would sing him a song about Parkinson’s that I had written. He agreed, and I played a karaoke version of 9-to-5 and sang along. He got a kick out of it and asked me if I would send him the lyrics! He shared them with some of his colleagues, who forwarded them on to others.

About three weeks later the Parkinson’s Foundation reached out and asked if I could send a video of me singing the song!

I decided if I was going to make a video, I needed a band.

I found a talented local rock group that was interested in working with me. After weekly rehearsals for several months and the band’s patient guidance, we were ready.

We secured an auditorium (no small task in the middle of the pandemic) a videographer and a sound and lighting technician, and recorded We’ve got Parkinson’s, along with a second song that I had written to the tune of Stevie Ray Vaughn’s “Pride and Joy.”

After months of post-production, we finally had our music video! I sincerely hope it brings joy and laughter to others who are dealing with PD.

My Parkinson’s is well managed. I believe that exercise, especially mountain biking, has helped tremendously. I am fortunate to live in a place like Marquette, Michigan where I can ride my road bike and mountain bike on a nationally recognized trail system. There is something magical about the mountain bike. Riding involves balance, coordination, concentration and quick decision making. When I get on the bike, my balance issues disappear and everything is fine.

I strongly encourage others with PD to keep pursuing their passions and their creativity – even in the most unexpected ways!

Videography by Nick Slattery
Editing by Nick Jensen and Nick Slattery
Music performed by Maynards and Friends
Words and vocal by Bruce Closser

"Get busy living or get busy dying,” is the favorite quote of Jeff, the owner of a Rock Steady boxing gym in Pittsburgh. Years ago, Jeff was working at the gym when his boxers asked him why they were not teaching classes for people with Parkinson’s disease (PD). Jeff didn’t know much about PD or that the sport he loved to teach could immensely improve PD-related motor symptoms. After some research, Jeff became determined to meet this demand at his gym.

Today, Rock Steady’s Pittsburgh location offers classes for people with PD six days a week, in the mornings and afternoons, including on Saturdays. Jeff has more than 50 active members between the ages of 54 and 92 who attend classes each week. He has personally assessed the motor skills and needs of more than 75 gym members with Parkinson’s who box to improve their symptoms.

Jeff believes that boxing may be the most intimidating exercise to begin. He’s heard from people hesitant to join his classes, excuses such as, “I could get hurt” or “it’s embarrassing if I can’t do it right.” He simply tells them to not be afraid and not to give up. He has proved in the progress he’s seen firsthand with his students.

It doesn’t seem to matter how progressed your Parkinson’s is or if you’ve undergone injuries before, boxing works. For one student, Diane, it changed her way of life in just three weeks. Diane walked into Jeff’s gym, cane in hand, unable to even jump rope. In fact, due to her Parkinson’s, she couldn’t raise the rope over her head. But after several weeks of boxing classes, she stopped using the cane and is throwing the rope around with ease. Her strength, balance and tremors have visibly improved.

It’s stories like these that drove Jeff to further his involvement in the Parkinson’s community. He’s often invited to speak at Parkinson’s support groups, where he talks about his boxing classes and the benefits of boxing, but he also spreads awareness about the power of people battling Parkinson’s disease. This was his goal when he applied to star on a special episode of “Ink Masters: Angels” dedicated to Parkinson’s.

Jeff wrote to the creators of the national TV show about his experience with PD and the experiences of his students, hoping to share their impact and possibly become one of the two people in the Parkinson’s community who would receive tattoos related to PD from the Ink Master artists. He’d only had one tattoo and wasn’t looking so much for the ink as he was the opportunity to support people with Parkinson’s in a different way. He was given the chance to do just that.

In the episode, Ink Master artist Rachel, gave Jeff a 6-hour, massive tattoo on his left outer bicep. He had brought in a picture he’d taken of these 1940s boxing gloves he keeps hung on a brick wall in his gym. The gloves have the word “Hope” stitched on their exterior.

Hope is Rock Steady Pittsburgh’s slogan and a pillar of every person on a Parkinson’s journey. He thought their vintage vibe would make for a cool tattoo, but more importantly, they would accurately represent the work he does with his boxers and how strong each of them proves to be as they battle Parkinson’s disease. He even brought his student, Diane, along with him on the show to share the experience with him.

Together, Rachel, Diane and Jeff rocked the show. Jeff ultimately ended up with an incredible piece of art on his arm that showcases his passions: boxing and spreading Parkinson’s awareness.

For anyone who saw this episode or is reading his story now, Jeff wants to share that tattoos are a personal choice - he can’t tell someone to get a tattoo for Parkinson’s. He will say, “anything you can do to create awareness around Parkinson’s and what boxing can do to benefit those with PD, is well worth it.”

Jeff participated in a special charity episode of "Ink Masters: Angels" where proceeds from an auction were donated to the Parkinson’s Foundation.

Become a Parkinson’s Champion to raise funds and awareness in a creative way

Brad can’t slow down. He works full time managing more than 600 clients and hundreds of millions of dollars at Wells Fargo Advisors. When he was diagnosed with young-onset Parkinson’s disease (YOPD) it could’ve been his excuse to slow down, but it only made him pick up the pace.

In his early 20s he taught himself the stock market and turned $2,000 into $8,000 with the help of his grandfather, whom he admired dearly. Brad’s focus was never school, but the stock market fascinated him. After numerous interviews he was given a chance at a major financial institution where he received formal training to become a financial advisor. Years later he was recruited to bring his clients over to what is now Wells Fargo Advisors where he works today as co-founder of the “Arch & McMorris Wealth Management Group of Wells Fargo Advisors.”

Brad was self-made by 27, the same year his father was diagnosed with PD. For the next decade Brad and his brother took care of their father. They saw the entire progression of the disease, from symptoms that began as bad posture and constipation to immobilization. They moved him to Miami, where they were both living, to take better care of him.

One day, Brad reached into a cabinet and felt a sudden slowness take over his arm. Months passed and other symptoms manifested. When he began experiencing waves of rigidity while walking, his coworkers would ask him if he was okay. He felt like his body and brain weren’t communicating when everyday tasks like using a fork, brushing his teeth and putting on cufflinks were becoming a challenge.

His father’s PD symptoms were worsening. By this point Brad and his brother each knew their father’s doctor. At a neurology appointment, Brad decided to ask about his own symptoms. He was hoping to hear that the symptoms were of no concern, but his fear was realized when the doctor told him to come in for tests.

He did his research, and decided to start fresh with a new doctor, making an appointment with a top neurologist in Miami; however, the next available appointment was in two months. In October 2015, Brad’s father passed away and one month later, after a DAT scan and multiple tests, Brad was diagnosed with YOPD. Driving back home from his appointment he emotionally broke down. He thought about how he had worked so hard to succeed and indulge in material possessions, but that he’d give them all up to have his health.

Brad doesn’t do anything half-speed and PD is not the exception. Mere days after his diagnosis, he went to Moving Day® Miami. With his father’s recent passing and his own diagnosis, he became completely overwhelmed when he saw how many other people in Miami were affected by PD. As he was leaving he met Mindy McIlroy, a National Parkinson Foundation (NPF) Board Member, who convinced him to join her for lunch. After hearing about NPF and its mission to make life better for people with PD, he immediately became involved with NPF’s South Florida Chapter.

At only 39, Brad was apprehensive to begin a medication regimen he’d be on for the rest of his life without seeking a second opinion. He made an appointment with NPF’s National Medical Advisor and one of the top PD specialists in the world, Dr. Michael S. Okun. He made the five-hour drive to see Dr. Okun. Brad is a fitness enthusiast, so when Dr. Okun took that into consideration and adjusted his dosages knowing that Brad’s body would go through the medicine quickly; Brad knew that Dr. Okun was going to be his doctor.

Brad finds that keeping up with PD is expensive and time consuming. He works long weeks, exercises every day, drives to another city to see a doctor and stays on top of his PD medications. He has a newfound respect for the one million people who live with PD. He often wonders how anyone who works a 60-hour week and supports a family can keep up with managing their PD. Brad wants to advocate for every person with PD to have access to expert care, which is another reason he is involved with NPF.

Brad continues to avidly exercise because it makes his body feel normal and is the only thing proven to ease PD symptoms.  He prepares healthy meals for the next day and eats at his desk so instead of going to lunch he goes to the gym, which is where he met Bradley Murcia, a personal trainer. Their passions aligned and they found a way to integrate exercise with PD awareness. In July, they launched a fitness program called “Monday Madness,” a free, intense boot camp-style class that is open to everyone. 

“From day one I’ve known that Brad is a beast,” Bradley said. “With everything he does and how hard he goes, there are times when I forget he has PD so I push him harder.” Bradley is the Monday Madness trainer while Brad attends every class, both never letting up.

Brad’s PD has even changed the dynamic he has with his clients. Some of his clients have PD and when they find out Brad does as well, they just talk. It’s become therapeutic for Brad because someone else knows exactly what he’s going through. November 2016 will mark the one-year anniversary of his PD diagnosis. He continues to fight Parkinson’s and support the PD community by promoting exercise. He will be attending Moving Day® Miami on November 13.

Check out the trailer for an upcoming movie featuring Brad and his PD story: "Monday Madness: A Parkinson's Documentary"

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.