I first met Jon Lessin in October of 2012. Jon is an accomplished doctor, published author, father, husband, cyclist, yogi, jokester and now, addicted climber. Jon also has Parkinson's disease (PD).

When Jon started taking lessons with me, I knew very little about PD other than a couple of generalized symptoms. Working with Jon was a huge learning experience and he seemed eager to answer every little question I asked.

With the help of Sportrock and Jon, we started a free climbing session for people with Parkinson’s disease and have grown the group tremendously. Sportrock Climbing Centers has even partnered with the capital area’s PFNCA to undertake the first-ever study in the U.S. on Parkinson’s and climbing with George Washington University. You can read the results of that study here: Impact of Rock Climbing on Complex Tasks in Persons with Parkinson’s Disease.

I have devoted much of my time to learning the ins and outs of this disease and the Parkinson’s Foundation website is where I started my online educational journey.

I believe that rock climbing is an amazing activity for those living with PD. While there is no cure for this neurodegenerative disease, unquestionably helps slow the progress, gives relief to some of the symptoms and creates a social network. There is much debate as to which exercise is the absolute best for Parkinson’s but working at a high level of intensity is fairly universal in its importance.

According to Lisa Ebb, a movement disorder Physical Therapist who has joined in climbing with a couple of the climbers, “Challenge and variation are the two most important principles of exercise in Parkinson’s disease.

Not only does climbing force you to work at a high level, but it also challenges participants with varied movements, repetitive movements, big dynamic movements, small, controlled movements as well as flexibility, balance and stability. Perhaps most importantly though, are the cognitive skills acquired through climbing and neuroplasticity changes that can occur.

While I do not have PD myself, I have learned through many of my friends at Sportrock that being proactive in your treatment is paramount. I have seen firsthand what exercising regularly, eating the right foods, eliminating stress and keeping a good support system can do for you over the years. I am a firm believer in whatever exercise program you can stick with is the best one for you.

For anyone newly diagnosed, let the beautiful words of Ijeoma Umebinyuo be your mantra.

Find a Parkinson’s-tailored exercise class near you at Parkinson.org/InYourArea or call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).

“Moving Day for me is an opportunity to contribute to the cause of finding a cure for Parkinson’s disease (PD) and to help support and educate the Parkinson’s community and the larger communities we live in,” William Krechowski said.

When William was first diagnosed with Parkinson’s, he did not know the life-changing affects this disease has on one million Americans each year and the affects it would soon have on him. He turned to the Parkinson’s Foundation to educate himself on this disease that was new to him, now that it entered his life. William gives great thanks to the Foundation, which has provided him so much insight during a difficult time.

Kelly, a physician assistant at the University of South Florida Parkinson's Disease and Movement Disorders Center, a Parkinson's Foundation Center of Excellence,  encouraged William and his family to get involved in Moving Day Tampa Bay as a way to help bring awareness to Parkinson’s. William was also excited to raise money for Parkinson’s research that leads to better treatments and ultimately, a cure for the Parkinson’s community.

William admits that he did not have much experience in events like this, but because the cause meant so much to him, he soon made Moving Day his passion project. With friends and family by his side supporting him in every possible way, he created his team "Bill’s Best Adventures."

“I am walking for myself and for a cure for Parkinson's,” said William.

"Bill’s Best Adventures" is the moniker William used to describe the annual adventure trips he's taken since 2001. "Participants on these trips have numbered from three to seven per trip and have been cousins, Air Force buddies, high school and college friends," William said. From hiking Machu Picchu to river rafting the Colorado River to sailing the San Francisco Bay, William does not let Parkinson’s get in the way of his adventures. William lives every day to the fullest and continues to plan exciting trips each year. Next on his list: The Great Smokey Mountains.

Although William’s adventures are incredible, he still faces the symptoms of Parkinson’s daily ― fatigue being most prevalent. He has learned that exercise is crucial in lessening the symptoms of Parkinson’s and has fully integrated daily in his life. From going to the gym two to three times a week to boxing at Rock Steady Boxing to hiking worldly known trails, “I think I’m doing pretty well for being 72 and living with Parkinson’s,” William said.

Find your nearest Moving Day and register today

Due to the overwhelming success of the Parkinson Foundation’s first-ever Moving Day Atlanta in 2013, a grassroots fundraising and awareness walk, more than $49,000 will be invested locally in programs to help people living with Parkinson’s in the metro Atlanta area improve quality of life for the Parkinson's community.

“The Parkinson's Foundation community grants enable us to partner with local organizations that provide life-changing services to the Parkinson’s community and display our mission in action."

One such local organization is the PD Gladiators, an Atlanta-based nonprofit organization devoted to combating Parkinson’s with vigorous exercise. Like Moving Day, their mission is to focus on the role of exercise in slowing the progression of the disease and to make community-based exercise programs available to people living with Parkinson's and their care partners.

Larry Kahn, Chief executive officer of PD Gladiators, is personally motivated to see this program succeed — he is living with Parkinson’s and is a true believer in the medicinal value of vigorous exercise.

"Vigorous exercise has most definitely improved my gait and given me an overall feeling of taking back control over my life. My main goal is to get the attention of the doctors who are delivering a diagnosis of Parkinson's and encourage them to prescribe exercise to their patients," Kahn said. 

Kahn’s wife, Ellie, facilitates a local support group for people with Parkinson's and their caregivers and she also attends boxing, Zumba and Tai Chi classes with him. “We’re in this together,” she said. Both Ellie and Larry encourage caregivers to attend PD Gladiators group exercise programs with their spouse or loved one.

PD Gladiators was the recipient of a $15,000 grant this year to subsidize group exercise classes throughout metro Atlanta and to promote the PD Gladiators metro Atlanta Fitness Network to practicing neurologists, physical therapists, other healthcare providers and the PD community.

FIND YOUR NEAREST MOVING DAY

My father was diagnosed with Parkinson’s close to his 80th birthday. It was a shock to my family.

To be honest even prior to his diagnosis, I had a feeling he might have Parkinson’s. He had a lot of shaking in his hands which I found out of the ordinary. He kept saying it was his nerves. I think he was in denial at first because he didn’t know much about the disease and how important it is to catch it in its early stages.

Then my dad went to his primary care physician. As soon as he saw my dad shuffling his feet, he said, “I think your father is suffering from Parkinson’s.”  He sent my father to a neurologist, who confirmed the diagnosis.

Since then, my mother has done an amazing job caring for my father. She was recently diagnosed with Alzheimer’s, so being my father’s caregiver takes an added toll on her. She shaves him. She cooks. She tries to walk him around. She holds him up. Mind you, this woman is 92 pounds and 4’8”!

Watching both my parents be so brave has been an inspiration. They will soon be moving in with me, so I can help care for them with the help of my siblings. My sister lives nearby and my brother, who lives in another state, provides his support as much as possible.

I am fortunate to have my parents and I feel lucky that my family is very close. I think it’s important for families to work together in the face of Parkinson’s and create a solid support system.

With Parkinson’s you have to be patient. Stay strong. Be aware. Research. Stay on your toes. Talk to your doctor. And if you feel your doctor isn’t equipped enough, find someone who is.

Before my father found out he had Parkinson’s, my parents celebrated their 50th wedding anniversary with a party. My parents love to dance and they were out in full swing!

When they reach their 65th anniversary, we want to throw another big party with lots of dancing. My father loves to dance. Actually, that’s how we get him moving.

My sister and I visit my parents every Sunday. We put on music and we dance. My father also likes to play the bongos. He has been very musical all of his life.

Dancing is how we get him moving. I think that is how you can motivate people to get moving – by doing something they love to do. We love to get my father to dance with my mom. It’s very sweet to see. My goal is to take the best possible care of them so they are dancing when they celebrate their 65 years together.

My name is Brian Lederman and I am a personal trainer in a gated community in Fort Myers, Florida. I recently worked with someone who has Parkinson’s disease (PD) and discovered that he is the true example of a hero who will not led a diagnosis define him.

I had just taught a pilot class called "Punch Fit" at the gated community. It combined boxing, cardio and core emphasis, while improving balance and coordination. After the first class, an attendee named Tim, and his wife, Lynne, approached me. I noticed that Tim was walking leaning to his right, with bad posture and was shaking uncontrollably. He was quiet and somewhat meek. Tim told me he had Parkinson’s and that “The Morning Show” recently aired a segment about a boxing program that showed promise for Parkinson's symptoms. Tim, 69, asked me if I would give him private boxing lessons.

At that moment I knew Tim was special. They say God gives his toughest battles to his strongest warriors and I knew Tim was a warrior. I was confident that he was completely committed. So we began training twice a week.

Initially, I knew nothing about Parkinson's so I took the trainer’s perspective. Since Tim leaned towards his right and had bad posture I started him with a step/drag foot drill, which is the basic way a boxer moves around the ring. We then progressed to basic punches such as a jab, cross, hook and uppercut. From there, we added movement, defense and counter punching. It was a progressive approach that combined many of the neurological aspects affected by Parkinson's. Knowing him and the warrior he is, allowed me to push him to his potential.

Tim worked incredibly hard and was disciplined. I knew he was practicing his boxing in front of a mirror every day because his skill and conditioning increased very quickly. His posture, strength, balance and coordination improved to the point that his friends and family almost didn't recognize this new Tim.

I began asking Tim to demonstrate boxing techniques for the group class, which Tim was still attending in addition to our training. The class responded with a collective "wow!" I posted a video of Tim hitting the punch mitts with me and he became an instant celebrity at the gated community where he lives and I teach. In fact, Tim and his wife had inspired and championed for their community to host another boxing class for people with Parkinson's, stroke survivors and other health conditions. Tim and Lynne began attending this class, too.

I never gave Tim special treatment. He was a great pupil and diligent worker. He trained as hard, or harder than anyone I'd worked with. He never quit, never needed a rest during a session and worked until his technique was correct.

The way his body responded to the intense training and his overall improvement spoke for itself. After around six weeks of boxing sessions his shaking decreased immensely and his posture improved, as did his confidence and daily functions. All of these improvements that were once limitations were noticed by his friends and family who could not believe this was the same Tim.

It was at the great pleasure to work with Tim, but I take minimal credit. Tim has shown me that Parkinson's is a very serious issue for those who are living with it and that it affects their friends and family. With the heart and spirit of a warrior like Tim, it is a battle that he, and anyone who commits to, can win. He is not only an inspiration for those with Parkinson's, he is an inspiration for all.

I want to thank the National Parkinson Foundation for their time and for continuously encouraging Parkinson’s awareness and education.

It was dark. Very dark. And something was moving around the end of my bed making noises, both quick and quiet. It went on for several minutes, escalating in volume and then it headed straight for me. To my surprise, I felt a quick, tender kiss on the forehead and then my ghostly figure vanished. In the first few moments of conscious awareness, I began to remember where I was and why I was here.

It all started a few months back. I was enjoying a lovely rendition of the musical “Cinderella.” Suddenly the house lights came up and I turned toward my date for the evening – my younger daughter, Liz. Before I could begin to gush with accolades on the performance, she smiled and then blindsided me. “Mom, I have decided to give you your Christmas gift now!” “Now?” I asked. It was weeks before Christmas and we were sitting in a crowded theater. Something was awry. Liz was too excited and pleased with the “Gotcha!” moment she knew she was going to have. And then she told me…

She began to describe the Miami Marathon and Half Marathon on January 25, 2015, in Miami, FL. There would be runners from all over the world with different motives for running. Liz had contacted the Parkinson's Foundation Parkinson's Champions program and registered for the half marathon…in my honor. In that moment of high impact, I began to feel hot tears pour down my cheeks. Parkinson’s disease (PD) is the unwelcome member of our family we do not like. He diminishes day-to-day events, interrupts vacations, disappoints on holidays and in general, wreaks havoc. Everyone in my family knows only too well that this illness has changed who we are. Life is more difficult for all of us. There have been many tears over the years, but the tears now came not because of the difficulty of the disease, but because I recognized great compassion.

As race day approached, we headed to Miami, FL, where a Parkinson's Foundation office is located. The day before the race, we were invited to tour their office. What we experienced was downright memorable! We met every staff member present that day. They seemed to understand that while we were only one of a million such families in this country, we were also unique in our own story. We were real. Their dedication and enthusiasm assured us that they were not losing sight of the vast importance of their work!

It was race day. I rolled over to look at the clock. It was 4:48 am, which meant my daughter would be heading out for the start line. My start line had been marked as well: my job would be to get myself up, fed, bathed, dressed and down to the finish line – a tall order for someone diagnosed with Parkinson’s more than a decade ago. Respectable amounts of medication would be required to make this happen.

Traveling alone in an unknown city creates quite a few apprehensions for me. This is actually my daily race. It is slow, stiff and aggravating. Regrettably, it comes as no surprise. It is my normal. I managed to get to the Charity Village where the Parkinson's Foundation had a booth. I was only there a few minutes when Runner 17095 took her last steps, reaching the booth after more than 13 miles. She was wearing a shirt that announced “I RUN TO BEAT PARKINSON’S.” There were two short words beneath that header: “FOR MOM.” And suddenly the hot tears began to pour again, but this time it was from both of us.

I have had Parkinson’s for a long time now. It has been a huge adjustment that demands continuous readjustment. It is always difficult. I have been asked on countless occasions where my strength comes from. I may be very strong, but I’m also very afraid. It is indeed HOPE that keeps me going. I believe that the research is productive and our hope is real. The need for funding is urgent. The need for research is urgent. The need for treatment is now.

Become a Parkinson’s Champion at Parkinson.org/Champions

The doctor took a deep breath and said, “Dr. Ruedrich, you have Parkinson’s disease.”  Several heartbeats later I said, “I’m done.”

I said it again. I would never deliver another baby or become an auxiliary member of a family. It would be like telling a pilot, you can’t fly, or a surfer to stay dry. In my profession, my new diagnosis implied liability. A “bad baby” or surgical complication would eventually be attributed to my wobbly hand. I imagined hearing: “why is a doctor with Parkinson’s disease (PD) still working?”

I'm a high-risk obstetrician, so I take on the difficult pregnancies: the triplets or more, hypertension, diabetes, previous pregnancies with poor outcomes, pre-term delivery and stillbirths.

Now, I miss the exhilaration of hearing that first cry. No longer do I get to experience the adrenaline rush of an emergency Cesarean section, “saving” a baby. To be truthful, a part of me felt relief. I hadn’t been operating or delivering babies with confidence. Would I want me operating on me? Perhaps not.

So, do I go sit in the corner and pull my white coat over my head? I can’t take that path. I won’t take that path. I like challenge. Either I have control over my disease or it controls me.

I still see patients in the office and make rounds at the hospital. My wife says, “he doesn’t get to play with anything sharp or pointy.” The dividend is time, easier office days, no night or weekends “on-call.” I’m no longer burning the candle at all three ends and I’m taking better care of myself.

I challenge myself with keeping fit. My PD research yields the sense that doing anything physical is beneficial. Boxing, tango, Tai Chi, balance, core strength. I work out twice a week with a trainer (using a PD-specific regimen, Delay the Disease) and run three times a week. Instead of running from one delivery room to another I now run around my neighborhood. Exercise is empowering!

I also look for opportunities to talk to people about Parkinson’s. When someone looks askance at my “broken wing,” I jump on the chance to educate my listener. It demystifies the elephant in the room and I’m amazed at how often I hear they have a relative or coworker with Parkinson’s.

So, I run, jump, lift weights, plank, stretch, jump rope and climb, and try not to hurt myself, especially by falling. A workout friend admonishes me at the completion of every exercise session… “don’t fall,” he says. And I count my blessings. I understand that each day is an opportunity. My license plate tells the story: LIVTDAY. Worrying about tomorrow serves no purpose. I try to be in the moment.

I have served on the Parkinson’s Foundation Ohio Chapter board for the last three years. Every year I’m proud and excited to participate in Moving Day. Last year, my team “Rider, Ruedrich, Schoon” raised more than $93,000 to fund Parkinson’s research and local programs.

I was diagnosed with Parkinson’s disease (PD) in 2018. Four years prior to that, I suffered through shoulder and back pain, foot cramps and hand surgery that didn’t heal — all on my left side. I was also suffering from depression, fatigue and an overwhelming sense of apathy. 

During a regular check-up, I mentioned my symptoms to my general practitioner who suggested I see a neurologist. Almost on the spot, she diagnosed me with PD and recommended that I see a movement disorder specialist. On January 29, 2018, my life changed forever as Lee, my husband, and I sat in the doctor’s office where the original diagnosis was confirmed. I was 52. 

Following the diagnosis, I felt paralyzed and sat on the couch numb. Then, I got a call that changed my life ― a recommendation to a PD boxing group. I have never exercised consistently. I never felt the endorphin rush people talk about when working out, but somehow I got myself into the gym and started boxing with LDBF Boxing for Parkinson’s (Pdboxing.org).

LDBF is my new village. I am in the best physical shape of my life. It’s more than boxing. It’s a camaraderie shared between the boxers, trainers and volunteers — all of whom contribute to my emotional healing on a daily basis.

I began to box in April, three months after the diagnosis. I did not go willingly. I hid behind the bags out of breath and demoralized. Then one day, I started to enjoy the workouts and sought out more challenging classes. LDBF’s “Inside the Ring” class taught by trainer Bryan Jensen fit the bill — a perfect mixture of inside the ring drills, sparring and floor work focusing on memory, balance and cardio.

My advice to someone newly diagnosed:

1. Don’t wait. Find a boxing program. 
2. Be your own advocate. Make sure you feel comfortable with your doctor.
3. Find a mentor. I am developing an official young-onset PD mentorship program.
4. Dig deep for the courage to reach out.
5. Recognize there will be good days and bad. 

In addition to boxing, I also participate in the Parkinson’s Foundation Moving Day Atlanta event held every fall at Piedmont Park, as well as the special event Good Vibrations. Not only are these events fun, but they remind me and so many others that we are not alone.

FIND YOUR NEAREST MOVING DAY

Anne Wray’s persona fits her Rock Steady Boxing name: Wonder Woman.

While she still finds the boxing name funny, the family therapist, happily married wife and mother of two daughters, ages 14 and 7, had her strength tested in an epic way less than three years ago. 

Anne was diagnosed with Parkinson's disease (PD) on February 26, 2016. She was 49 and her husband, now retired from the U.S. Army, was deployed when she received the news. “It was rough, and I will always remember that day,” she said. “I went through all the emotions — denial, grief, acceptance, embarrassment, self-pity and many more.”

But the 49-year-old decided to fight. “What has always got me back to me is exercise,” Anne said. “When I am boxing, running or weight training, I feel like my 'old' self again. Not someone 'too young to have Parkinson's', with a shaking hand, unsteady gait and just awkward!”

Anne’s motivation to exercise is also rooted in research. The Parkinson’s Outcomes Project study shows that 2.5 hours of weekly exercise along with medication, can significantly improve quality of life for people living with Parkinson's.

“I want people with Parkinson's to know they can do anything, don't let it limit you,” she said. “At first, I was embarrassed by my symptoms, but now I know they are only a part of who I am.”

In addition to her work outs, Anne has recently signed up as a Parkinson’s Champion, raising money for the Parkinson’s Foundation by training for and running in the TCS New York City Marathon on November 4.

“We run and will continue to run for people with Parkinson's because this disease is a marathon, not a sprint," Anne said. “I hope you will donate to the Foundation and support me in my determination to stay ahead of this disease. I truly appreciate just your time in reading my story and supporting my journey.”

Let her story motivate you!
sign up as a Parkinson’s Champion