My PD Story

Clare rock climbing
Family Members

Clare Bennett

Teresa Bennett, my mom, began experiencing Parkinson's disease (PD) symptoms nearly 10 years ago. Just last year, at age 65, she started rock climbing.

A year ago, Dr. David Whitney at Inova formally diagnosed her with Parkinson’s in 2020. His office organized a fantastic support group for people with Parkinson’s, which led my mom to a podcast episode about how rock climbing is a wonderful, safe and beneficial exercise for folks with Parkinson’s.

The harness and rope system in indoor rock-climbing gyms makes the activity accessible for people with Parkinson's, even if they’re experiencing severe tremors or difficulty walking, because there’s no falling or hard impact involved. Plus, the problem-solving required to climb up a specific route and the strength-building can hugely help slow the progression of symptoms, which for my Mom included tremors, stomach woes and stiffness.

My Mom shared the podcast episode with our family, and we all decided to gift her rock-climbing lessons for Mothers’ Day 2021 in hopes that we’d all be vaccinated. When googling around for rock-climbing lessons for Mom, we coincidentally found this video featuring climber Michelle Sloane and instructor Molly Donelan.

We reached out to a local climbing gym in Virginia, SportRock, and connected with Molly — who just happened to be the guest on that same podcast episode — to set up the intro lessons for Mom. Molly came across instantly as knowledgeable, kind, thoughtful and passionate about how rock climbing could help people with Parkinson’s.

Mom started with a lesson with Molly and Michelle and was hooked on rock climbing almost instantly. “Since I started climbing at SportRock with a group of people living with Parkinson’s, I am stronger, happier, and healthier than ever before,” said Teresa. “I very much enjoy the community and friendships among us.”

Mom joined Molly’s incredible group of climbers who have Parkinson’s and climb together multiple times a week. A few phenomenal instructors volunteer alongside Molly to belay and guide the fearless climbers, and the community has become beautifully tight-knit through their shared experience. Some of the climbers even attended Molly’s wedding in October 2021!

During the first lesson, Molly was very gentle with Mom and started her on a short, 25-foot wall. My Mom felt safe in the harness, and after that short wall, Molly took her to a 40-foot wall. Mom definitely felt nervous and scared, and at one point she looked down and thought, “What the heck am I doing here?!” All the while Michelle was cheering, “Go, Teresa! Go!” Mom says she teared up a little and told them that she hated having Parkinson’s and that she wouldn’t be rock-climbing if she didn’t have it.

Now, Mom rock-climbs at least three times a week if not four, sending 40- and 60-foot walls. She never misses a climbing session unless she’s out of town, and even then, she often finds a climbing gym.

She’s learned to use the auto-belay system so she can climb alone, usually when she wants to work on a route that has been challenging her. Her climbing shoes already need repairs because they’re so worn, and she has all the gear and clothing fabulously matched. Her arms, back, and leg muscles are even more pronounced than they were before she started climbing, and she can’t get enough of climbing documentaries or YouTube videos of stars like Margo Hayes and Tommy Caldwell.

Most importantly, her symptoms have greatly subsided. Her left hand used to be stiff and stuck in a cupped position, and now it looks relaxed and stronger than ever. Her tremors are even less visible, and her left foot no longer drags when she walks. Her gait is more secure with bigger, surer steps. Her mental health has also improved, and she feels more energetic than she has in years.

“Before rock-climbing, I used to be very scared about my future with Parkinson’s, and now I don’t think about it as much,” Mom said. “I feel that as long as I can rock-climb, I will be fine.”

Early on, Dr. Whitney told Mom he might recommend an increase in her medication based on how her symptoms had been progressing before she started rock climbing. But when he saw her in person just a few months after she started rock-climbing, he concluded that there was no need to increase medication at that point because of how well she was doing.

Rock-climbing quickly motivated Mom to take up additional activities to help her become a stronger climber. She now swims laps with an awesome neighborhood coach and swimming group twice a week and goes to a Pilates gym once a week. Not to mention her usual fun continues, seeing friends, traveling, walking in nature. Since she feels so good about life, Mom signed up to volunteer with a non-profit that supports students striving to become the first in their families to graduate from high school, to navigate the college admissions process.

May will mark one year of Mom’s rock climbing, and I don’t think any of us could have predicted the astounding results, especially in such a short amount of time. Not many people start rock climbing at 65, but I am endlessly grateful that my mom did. I hope anyone newly diagnosed with Parkinson’s takes time to feel those feelings, leans on a support system, and channels that fear into something that helps them feel stronger and makes them smile the way rock-climbing does for Mom.

Keep moving! Exercise and physical activity can improve many PD symptoms. Call our Helpline at 1-800-4PD-INFO (473-4636) or visit your Parkinson’s Foundation Chapter online to find an exercise class near you.

My PD Story

Patrick Welch in office
People with PD

Patrick Welch

Patrick Welch, PhD, Sgt. USMC (Ret.) is a member of, and tireless advocate for, both the veterans’ community and the Parkinson’s community. Dr. Welch was awarded a Purple Heart for his service in Vietnam, founded the Center for Veterans and Veteran Family Services at Daemen College, and previously served as the Director of the Erie County Veterans Service Agency in New York.

Dr. Welch works with the Parkinson’s Foundation to spread awareness about PD, support veterans on their PD journey, and provide education on the critical importance of exercise for people living with this disease.

 

visit Parkinson.org/Veterans for resources

My PD Story

Bruce Closser sitting on porch
People with PD

Bruce Closser

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

Raise Awareness

Par for Parkinson's with Mike DeBartolo

mike debartolo

Last month, I raised money for our Parkinson’s community through a Parkinson’s Foundation Champion fundraiser called “Pars for Parkinson’s” where I played 100 holes of golf over two consecutive days with family and friends. In this article, my daughter, Anna, interviews me about the event. My name is Mike DeBartolo, 58, and I was diagnosed with Parkinson’s disease (PD) four years ago.

Why play 100 holes of golf for Parkinson’s?

To inspire myself and hopefully inspire others that we can adapt the way we play to enjoy games and activities we like doing.

I was thinking about ways I can give to our Parkinson’s community. Since Parkinson’s has me learning new ways to play golf, I figured hosting a Parkinson’s Foundation Champion event is a meaningful way to put the fun into fundraising. Thankfully, family and friends stepped up generously to support me and our community by donating to the Foundation, and several joined me for nine or 18 holes throughout my two days of play.

Any memorable stories from the experience?

From teeing off for a 6:30 a.m. sunrise with three dear friends to playing the closing holes in full moonlight with my best friend and his two sons, throughout the event I was joined by family, life-long friends, new friends, former golf teammates, neighbors and even deer. We played at the local course, aptly named the Playfield, where I first learned the game at nine years old. Now, 50 years later, it’s my go-to course where I relearned how to play the game with Parkinson’s these past few years.

My friend Hank joined me ― we began golfing in our childhood. It was very special. It was a joy having my wife Terry join me on the course and see her return to a game she played long ago. We look forward to playing together in the months and years ahead. A favorite moment was seeing my friend Dave, who also has Young-Onset Parkinson’s, nearly make a hole in one. Remarkably, Dave’s tee shot finished three inches from the hole.

100 holes of golf over two days. Did you get tired? 

mike debartolo

I did. During the fourth round, my back stiffened. I thought, oh boy, this could get interesting. Remarkably, the stiffness went away, which with PD was an unexpected blessing.

Since my coordinated precision can be way off, I have adapted the way I play. I deploy lots of forgiving practices on the course to make the game easier and more fun. I don’t keep score other than tally the number of birdies I make throughout the year. My adaptations enable me to once again play a game I love. I have come to look at a golf course as a playground and Parkinson’s as an invitation to play the game any way I want in the company of family and friends.

How did the Parkinson’s Foundation help?

Parkinson's Champions logo

The Parkinson’s Foundation team encouraged me from the start and helped promote “Pars for Parkinson’s,” including web page design and use of a funding link channeling all gifts directly to the Foundation. Gifts made triggered an instant email enabling me to personally thank family and friends as gifts were made. Learn more about Parkinson’s Champions now.

What’s the money being raised for?

All monies raised goes to the Parkinson’s Foundation and their commitment to make life better for people with Parkinson’s disease by improving care and advancing research toward a cure.  Their dedicated focus in each of these vital areas and their caring team makes the Foundation a natural partner.

Any advice for others who may be considering raising money for Parkinson’s?

Pick any activity you enjoy, ask family and friends to support you and the Parkinson’s community by making a gift of any amount, and invite them to join you in the activity. Walks, bikes, swims, dances, bowling, darts, fitness exercising, yoga, play friendly sports are all possibilities. The key is to have fun with it and let Parkinson’s motivate you and people who care about you in their giving and participation. And, of course, to be grateful for those who care about us.

How can people benefit from “Pars for Parkinson’s”?

Hopefully, this event is an example of finding joy in living with Parkinson’s and inspiration to not throw in the towel on playtime and games you have enjoyed in life. Perhaps my experience shows by finding creative ways to adapt to conditions and adjust expectations, we can find joy in activities we once liked and new activities worth giving a go. Perhaps this outlook can inspire those without Parkinson’s too.

What’s next? Will “Par for Parkinson’s” become an annual tradition?

God willing. Though it may take a different form next year around another game I have adapted to enjoy. Tennis for Parkinson’s anyone? Stay tuned!

Become a Parkinson’s Champion at Parkinson.org/Champions.
Let us help you design your own event!

My PD Story

Jeff at fighting ring
Health Professionals

Jeff

"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.

Jeff and Rachel, tattoo artist

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.

Jeff's arm tattoo

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

 

Science News

Study Finds Visual Impairment is 60 Percent More Common in People with Parkinson’s

Science News Blog header

Parkinson's disease (PD) is usually described as a movement disorder of the nervous system that worsens over time. Parkinson’s is believed to be the result of dopamine-producing neurons (nerve cells) in the brain gradually dying off. When approximately 80 percent of dopamine is lost, the hallmark symptoms of PD emerge, such as tremors in the hands, arms, legs, jaw or head, slowness of movement, stiffness in the limbs and trunk of the body, and difficulty with walking, balance and coordination.

However, PD also has non-motor symptoms, such as problems with attention, planning, language and memory. One impairment in particular may not be getting the attention it deserves: visual impairment.

In people without Parkinson’s, visual impairments are associated with falling, bone fractures, depression, anxiety and dementia. People with PD are not only at an increased risk for these issues but can experience intensified visual impairments ― because they rely on visual cues to help compensate for movement challenges. Understanding how visual impairments impact the health and quality of life of people with PD is paramount.

Recently published in the journal, Movement Disorders, “Visual Impairment Is More Common in Parkinson’s Disease and Is a Risk Factor for Poor Health Outcomes” (Hamedani, Abraham, Maguire, & Willis, 2020), a study found that visual impairment is 60 percent more common in PD than the general population.

This study used Medicare claims data from 2010 to 2014 to analyze the burden of moderate to severe visual impairment of 26,209,997 Medicare beneficiaries, age 65 and older, with and without PD. Data was analyzed (using a statistical model) to examine visual impairment and incident hip fracture, depression, anxiety, dementia and death. The frequency with which those with PD had a professional eye exam was measured and demographic data was gathered.

Results

  • Of the 26,209,997 unique Medicare beneficiaries, 287,010 (1.1%) carried a diagnosis of PD, and 187,572 (0.72%) carried a diagnosis of moderate to severe visual impairment.
  • Visual impairment is 60% more common in PD than the general population.
  • Moderate to severe visual impairment was associated with increased hip fracture, depression, anxiety, dementia and death, in both the general population and those with PD.
  • Approximately only 40% of those with PD had a yearly eye exam.
  • In both PD and non-PD populations, the prevalence of moderate to severe visual impairment increased with:
    • Age
    • Black or Hispanic ethnicity
    • Medicaid eligibility
    • Female sex
    • Diabetes
    • Hypertension

What Does It Mean?

Man squinting to see

The prevalence of moderate to severe visual impairment in the Parkinson’s population is more common than those who do not have PD. This visual impairment is associated with increased risk of accidents, cognitive issues, and death in both people with and without PD. Those who fall into certain demographics or have conditions, such as diabetes and hypertension, are more likely to have moderate to severe visual impairment. It is important to know that many comorbid conditions (e.g., diabetes, anxiety, depression and hypertension) can be managed and treated; plus, Medicare pays for annual eye exams.

It is imperative that attention be given to these study findings, and more research conducted. Understanding these relationships is an essential component to helping develop interventions and patient education efforts to improve health outcomes and quality of life for people with PD.

As an aside, while not addressed in this study, dopamine is known to play a key role in retina health and numerous other visual functions, such as light regulation, contrast sensitivity, color vision and visuospatial construction. Further, there is research to suggest that alpha-synuclein overexpression affects dopamine neurons in the retina. Expanding research to incorporate the role of dopamine and alpha-synuclein is surely warranted.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the association of vision problems and PD by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

My PD Story

Brad running a race
People with PD

Brad McMorris

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 and friend

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.

Brad with group of people putting hands together

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 PD Story

Christian Banda jumping over fire in Spartan race
People with PD

Christian Banda

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.

Christian Banda and daughter

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.

Christian Banda wife after Spartan race

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.

My PD Story

Allison Toepperwein posing by flowers
People with PD

Allison Toepperwein

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.

Allison Toepperwein doing mud run

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:

Caregiver Corner

Parkinson’s Experts Discuss Their Favorite Self-Care Strategies for Care Partners

Woman sitting on a bench outside

When the Parkinson’s Foundation held its 2020 Care Partner Summit | Cumbre para Cuidadores, care partners from around the world asked our panelists about self-care.

Self-care can be described as “the practice of taking an active role in protecting one’s own well-being.” As individuals, we all need different things — it’s important to retain a meaningful relationship with yourself and manage your well-being in order to effectively care for your loved one with Parkinson’s disease (PD). Your needs are important, too!

There are several types of self-care that can enhance your ability to thrive and to be a better care partner. Different types of self-care include:

  • Physical self-care
    • Ensure you are sleeping and eating well, as well as getting enough exercise.
    • Implement stretching exercises into your daily routine.
  • Emotional self-care
    • Take some time to reflect on how you are feeling, even if you are experiencing difficult emotions.
    • Treat yourself like you would treat a friend going through a hard time.
  • Intellectual self-care
    • Stimulate your brain with things that are fun for you. This could include reading a book, writing your PD Story, listening to your favorite music or watching your favorite show.
  • Spiritual self-care
    • Doing things that feel spiritual to you, such as helping someone else, starting a gratitude journal or self-prayer.
  • Adventurous self-care
    • Try something outside of your normal routine. This can help you maintain an identify outside of being a care partner and enjoy other parts of your life.
  • Sensory self-care
    • Indulge your five senses. Light your favorite candle, listen to some music or simply sit and enjoy the silence.

Take some time to brainstorm how you can best care for yourself. What needs are currently not being met. How can you meet them? You may find yourself asking some of the following questions:

How can I make time for myself when I do not have any help?

This answer will differ for each care partner because everyone’s journey with PD is so different, but it is possible to make time for yourself while you are a full-time care partner. If you are struggling to get outside help, try to shift the time you have with your loved one into activities that will provide you some level of self-care. Some examples of this are:

a couple doing stretches in front of a computer at home
  • Exercise with your loved one. Join an exercise class that can benefit you both or schedule your exercise class for the same time as theirs. Check out Fitness Friday videos.
  • Plan your favorite activities for you and your loved one to do together. This, of course, depends on how independent your loved one with PD is, but can be individualized as needed.
  • Strategically plan your schedule around theirs. Waking up an hour before your loved one can give you time to do something on your own ― even if it’s just enjoying a cup of coffee.
  • Recruit family members and friends to do fun online activities with your loved one while you get some alone time.

Finding time to take care of yourself will require some creativity but will be worth it in the end.

How can I live my own life, fully, without feeling guilty that I’m leaving my loved one behind while I’m enjoying myself?

Many care partners experience care partner stress and guilt, but it can help to remember that guilt is rarely a productive emotion to feel. What is productive is realizing that you cannot be the best care partner if you do not take care of yourself first.

When we are actively taking care of ourselves, we are actively taking care of the person with PD, similar to putting your mask on first in the event of an airplane emergency. Plan something that your loved one enjoys whenever you are out enjoying yourself ― this way, you can rest assured that you are both enjoying yourselves.

How do my partner and I maintain our identity apart from Parkinson’s?

You must be intentional! Unfortunately, you can’t wait for the time that will make you feel like your old selves again. Plan activities that you both used to enjoy, even if they need to be adjusted. Try these tips: 

  • Set one day a week where neither of you say the word “Parkinson’s.” Go through your routines but try to not say the “P” word — this might help you both remember that your world does not revolve around Parkinson’s.
  • Remember that your care partner identity overlaps with your other roles (spouse, friend, partner, child, etc.).
  • Talk about identity with your loved one. It is important they know you need to step out of your care partner role a little bit, and more into your other roles. You might be surprised how much they want that for you, too!
  • Think of small ways your loved one can help you throughout the day — maybe they can get the mail or can give you 30 minutes of uninterrupted time each day.

Being a care partner is hard work, but it is not all that you are or all that you do. Remember to utilize our care partner resources:

If you have questions about Parkinson's or caregiving, contact our toll-free Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

This article is based off the Parkinson’s Foundation Care Partner Summit presentation, “Your Questions: Self Care” panel, which included PD experts Elaine Book, MSW, RSW, Center Coordinator and Clinic Social Worker at Pacific Parkinson’s Research Center; Joan Hlas, MSW, LISW, CREATE Program Supervisor and Clinic Social Worker at Struthers Parkinson’s Center; and Jessica Shurer, MSW, LCSW, Center Coordinator and Clinic Social Worker at University of North Carolina at Chapel Hill.

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