I was diagnosed with Parkinson's disease (PD) in March 2021. I do my best to stay healthy and positive, while encouraging others in the PD community to do the same. I applied to be a Parkinson's Foundation Ambassador because I'm passionate about sharing information and helping others on this journey. I am also currently the Virginia Ambassador with the Davis Phinney Foundation, and I was recently invited to be an ambassador with the PMD Alliance.
I have a YouTube channel where I share my efforts for living well with PD, including exercise and motivational videos. I hope my videos inspire other people in the Parkinson’s community to keep moving and stay positive! I pledge to donate 50% of the channel's revenue to Parkinson's research.
In April of this year, I started my polymer clay jewelry business. I donate 50% of my jewelry sales to Parkinson's research as well. I'm excited to continue raising awareness for PD with this new venture! As of July, I've been able to donate over $800 help this cause.
I have been married 31 years. My husband and I have two sons, who are both married, and one grandson. My family is my greatest blessing and I'm grateful for their love and support with all my activities in the Parkinson's community. Our grandson turned three this year and has become aware of my tremor, so I published a children's book called "Grammy Has Parkinson's." I hope this book helps alleviate some of the mystery and concern children may have regarding family members dealing with this disease. I plan to also donate 50% of book sales to Parkinson's research. I still work full-time and aside from my activities in the PD community, I love spending time with family, hiking in our national parks, doing jigsaw puzzles and crafting. I'm proud to be a part of the Parkinson's community and know I'm in the company of brave, resilient warriors!
My journey with Parkinson’s disease (PD) began a couple of years before my official diagnosis. I was 57 years old. My first thought that I may have Parkinson’s occurred when a colleague asked me why my hand was shaking. I thought that my sugar level was low, so I went and got a Coke. I now know the tremors in my right hand were not due to decreased sugar levels.
I had other symptoms as well, including cramping and fatigue. My handwriting also changed dramatically and became very small, sloppy and sometimes unreadable. I’ve had to retrain myself to write slowly and legibly. Additionally, my sleeping pattern changed and my right arm stopped swinging when I walked.
About a month or so later, I was at my annual physical and I mentioned the hand tremor to my primary care physician. She asked me to hold my hands out, and eventually said she wanted me to see a neurologist. At that moment, I knew I had Parkinson’s. I made an appointment. After a two-hour assessment, the prognosis was that I had young-onset Parkinson’s disease (YOPD). February 21, 2017, became my Parkinversary.
Even though I thought I had PD before my diagnosis, I was still in shock. I was scared; the more I read, the worse I felt. But one day, I decided to change my mindset and embrace my diagnosis. I did more research and got involved with the Maryland Association for Parkinson’s Support, eventually becoming a board member. This experience led to me to learn about the Parkinson’s Foundation and Moving Day, A Walk for Parkinson’s. I attended Moving Day Baltimore with my family; it was a great, educational experience.
I ended up taking early retirement due to my demanding, stressful, high-pressure and high anxiety job. Working only made my symptoms more noticeable and advanced my disease progression.
Six years later, now at 62 years old, my progression has slowed. I’m in the best shape I’ve ever been in! We moved to South Carolina, and I found a gym that offers Rock Steady Boxing. I organized a team for Moving Day Charleston, recruiting the twelve people in my boxing class as team members. Our team raised more than $5,000 to help the Parkinson’s community!
Now I work out about five times per week — Monday, Wednesday and Friday I start with a 30-to-45-minute stationary bike ride or some other cardio workout, and then I go to a Rock Steady Boxing class for about 75 minutes. Tuesday and Thursday, I work out at home for about 60 to 90 minutes. Saturday and Sunday, I do a lot of walking. Exercise is the best non-prescription medication for Parkinson’s disease — you don’t need a referral. I also enjoy taking walks with my wife, who is my extra set of eyes and ears.
I take my Parkinson’s medication as well as anxiety medication. For hobbies, I enjoy cooking (especially grilling) to make healthy meals, as well as going to concerts and tending to my vegetable garden. I make time for family, friends and myself. I also talk to people who are newly diagnosed with Parkinson’s and help them realize that living with PD is an adjustment, but life is not over. Parkinson’s is not a death sentence; if managed correctly, you can still have a good quality of life.
PD taught me that a positive attitude will go a long way, and that we should live life to the fullest. We are all Parkinson’s Warriors, always fighting, always courageous and always surviving. Parkinson’s disease will not define us — our courage and strength will! Keep up the fight!
On a Thursday evening in March 2007, one of my clients called and asked if I could travel from my home in Florida and be in California by noon the following day. He assured me that I would be home four days later.
As it turned out, I returned home six weeks later having closed one of the most complicated, contentious and stressful transactions of my legal career. By the time I finally made it back to Miami, FL, I realized that I had lost the ability to write my name and typing was all but impossible.
After seeing my general practitioner and an orthopedic doctor, I found myself at a neurologist. When the neurologist asked, “What can I do for you today”? I just laughed and I said “I think I have that disease — carpal tunnel syndrome.” He laughed back and said, “You have Parkinson’s disease.” He put the medication Azilect in my hand and said “Take this and if it works, then we will know that I am right.”
Little did I know that that was to be the beginning of this adventure that 16 years later I know to be Parkinson’s disease (PD).
I had heard about Parkinson’s disease, but no one in my family had it. In fact, I didn’t know anyone who had Parkinson’s disease. Thankfully, I didn’t have the crushing depression or debilitating anger that many people experience upon being diagnosed. I suspect that I didn’t know better, but I acknowledge that those reactions are real and must be addressed early in the diagnosis.
That’s where a referral to the Parkinson’s Foundation can be life changing. Through its initiative for those newly diagnosed, the Foundation fills the void of critical information most people with PD lack regarding their recent diagnosis. Often times, the diagnosing physician is too busy to provide a sufficient explanation on how to live a quality life with Parkinson’s disease.
Shortly after I was diagnosed, I was introduced to the Parkinson’s Foundation. My wife and I were invited to participate in a weeklong retreat for those newly diagnosed and their care partners. There, my wife and I became yoga fanatics. It was that introduction by the Foundation to the power of exercise in the fight against Parkinson’s that forever changed the trajectory of the disease for me.
Since my first encounter, I have been continuously engaged with the Foundation. I have participated in virtually every Moving Day Miami. I’ve spoken on behalf of the Foundation at many events.
It was that early introduction to the Parkinson’s Foundation, however, and their vast resources of information and support, as well as an incredible community of like-minded people, that really attracted me to the Parkinson’s Foundation. The mission of the Foundation to make life better today for people living with Parkinson’s all while advancing research toward a cure really resonates with me.
I have spent the last several months traveling across the country with my friend, Scott Rider, filming a documentary for a project titled Parkinson’s Across America. Our hope is to provide an informative, yet personal look at what it means to be living with Parkinson’s and to remind people that they can live long and productive lives despite their diagnosis.
While many of the people I have met share stories that include aspects of tremendous heartbreak and difficulty, each offers incredible hope and encouragement to those of us in the Parkinson’s community. One of the common sentiments that resonates so clearly with me is that, despite the difficulty that people living with Parkinson’s disease cope with every day, there is an incredible sense of gratitude for people, like the people at the Parkinson’s Foundation, who make it their life’s work helping people with Parkinson’s live better lives today.
The people of the Parkinson’s Foundation share a passion and commitment for making life better for people living with Parkinson’s that is unrivaled. Without a doubt, they are changing lives. I’m here to tell you that they certainly have changed my life and, for that, I am eternally grateful.
To be associated with an organization that is truly making a difference in people’s lives every day is an honor and a privilege. I am sincerely honored and humbled to be selected as the Paul Oreffice Volunteer of the Year.
I was a globe-trotting, corporate science professional with a year-round list of active hobbies — cycling, fly fishing, hiking, backpacking, bird hunting and cross-country skiing to name a few. My earliest Parkinson’s disease (PD) symptoms were subtle and wouldn't have raised suspicions to anyone not already thinking about PD. First, I experienced difficult bowel movements and odd toe and foot cramps. At 50 years old (and seemingly out of nowhere), I developed a foot drag which I attributed to a disc issue.
At 58 years old, my local neurologist added the term Parkinsonism to my health profile. Two years later, a different doctor — this time a movement disorders specialist — diagnosed me with Parkinson’s with 99% certainty. He asked me why I waited so long to see him, and I responded that I thought my symptoms were a result of a lower back problem. In truth, I was embarrassed and afraid of receiving a PD diagnosis. I thought it meant my life as I knew it was over.
Over the next decade, I would experience all the more life-changing impacts of Parkinson’s. To my wife and friends, the symptoms had been obvious. I continued to blame my back until I turned 60, when the symptoms progressed so fast that I was unable to ride a bike or wade a rocky trout stream.
After I began responding to PD medication, I fought back with a vengeance. I enrolled in a yoga class to counter the stiffness. I resumed my guitar practice to work on manual dexterity. I joined a table tennis league to improve agility and reflexes. I got on my road bike, and by late summer I was back to pre-PD form. I competed in a fly-fishing tournament and waded rushing mountain rivers. Nine months after I my diagnosis, my neurologist told me that if I weren’t his patient, he wouldn’t suspect I have Parkinson’s. I was back!
It hasn’t been all roses since then. I live in Central Pennsylvania and there isn’t a movement disorders specialist within 100 miles, so I’ve figured out a lot about managing the disease on my own. I subscribed to a Parkinson’s research journal to stay up to date on medical advances. I monitor my symptoms and ask for medication tweaks when things aren’t working right. I continue to modify my physical therapy program when something stops working or a new symptom develops.
I discovered the Parkinson’s Foundation about a year ago. Their online resources helped me make sense of my PD history. I watched remarkable videos that opened my mind to new knowledge about the disease. I wish I had known about the Foundation ten years earlier.
I recently became a Parkinson’s Foundation Ambassador. I am retired now and have decided to devote my volunteer efforts to helping the PD community in Central Pennsylvania, which has low access to specialized Parkinson’s care. I am engaging with senior care facilities by delivering educational materials, familiarizing staff with the Parkinson’s Foundation website and connecting facility leadership with the organization so they can benefit directly from the excellent resources the Foundation provides.
Nobody should have to navigate this disease on their own.
Six years ago, I was a 53-year-old man, in great shape, a successful realtor and caregiver to my partner of 25 years. I started noticing changes in my ability to run, walk and write and I suffered from a tremor in my right hand. I was diagnosed with Parkinson’s disease (PD). Having so many responsibilities already, focusing on Parkinson’s was not at the forefront of my life. After my partner passed away, I realized that I had let the PD symptoms take over.
Everything I read focused on the fact that Parkinson’s was a progressive disease, and that I wasn't going to get any better. I wasted the next 4 years, having given up hope. I woke up one day and decided that I wasn't going to go down without a fight. While searching online for information about PD, I came across the Parkinson’s Foundation website. The Foundation’s resources helped me learn more about PD symptoms. From there, I decided that instead of looking at Parkinson’s symptoms as a whole, I could break them out individually and slowly work on getting better.
My worst symptom was stiffness in my right leg and foot. I could barely walk a half block without experiencing pain. I had a gym at my disposal but quickly realized that due to my symptoms, the treadmill was not an option for me. I then noticed the rowing machine — specifically the foot straps. The straps would keep my foot from "wandering" so I could get in a workout.
Fast forward six months later: I lost 13 pounds, and I am rowing 5,000 meters a day without pain! It took a few months to get over the hump regarding pain. I no longer have tremors. I look great for a 58-year-old man. I walk 2 hours every morning and have taken up juggling to enhance my hand-eye coordination!
Through friends and family, I have met several folks with PD since my diagnosis and have shared my story with them. My story has given them hope for a more normal life, and they can see the proof — in me! I have never been in better shape, and I don't have as many obstacles to deal with on a daily basis. Most people can't believe I even have Parkinson’s. Exercise has been a miracle in taking control of my symptoms and living a better life. I even purchased a three-level townhome, without an elevator.
I continue to counsel people who are newly diagnosed with PD and am happy to keep them from making the mistakes that I did.
Exercise is an important part of healthy living for everyone. For those with Parkinson’s disease (PD), exercise is more than healthy — it is a vital component to maintaining balance, mobility and activities of daily living. Research shows that exercise and physical activity can not only maintain and improve mobility, flexibility and balance but also ease non-motor PD symptoms such as depression or constipation. Browse Parkinson’s-friendly exercise tutorials on our YouTube.
Podcasts
Episode 151: Strategies to Address Apathy and Exercise Motivation
Besides being a movement disorder and affecting other physical functions, such as the digestive system, blood pressure control, and sleep, Parkinson’s disease (PD) can alter cognition, other mental functions, and mood. Apathy can be part of the disease, resulting in a lack of interest, enthusiasm, or motivation. It can result in a vicious cycle, decreasing one’s motivation to exercise and follow medication schedules, which are essential components of managing PD, including mood.
In this episode, movement disorder neurologist Nabila Dahodwala, MD, MS, Director of the Parkinson’s Foundation Center of Excellence at the University of Pennsylvania, describes what apathy is, how it can affect a person’s life, and ways to help alleviate it and gain motivation to move through exercise.
Released: May 30, 2023
Nabila Dahodwala, MD, MS is a Professor of Neurology at the University of Pennsylvania. She is also a Senior fellow at the Leonard Davis Institute of Health Economics, Institute of Aging fellow, and Director of the Parkinson Foundation Center of Excellence at Penn. Dr. Dahodwala's research interests involve access to care; disease prevention and health promotion; disparities and health equity; and global health and risk communication. She has served as the chair of the American Neurological Association’s Health Services Research Special Interest Group and is a member of the International Parkinson and Movement Disorders Society’s Integrated Care Taskforce and the Michael J. Fox Foundation’s PPMI steering committee.
Getting a Parkinson’s disease (PD) diagnosis is a sobering moment, but fear and backing away from what worries us never works in the long run. What’s sobering, or frightening even, is the uncertainty about what it means to have a progressive, incurable movement disorder. Will I be unable to run? Shuffling along soon? Unable to drive? Mute? When does all this start happening?
Answers to those questions still linger, but after a few deep breaths it became clear that these worries were not going to be faced, say, next week. The most immediate challenge was to convert all this external tremor and internal commotion into some kind of new normal so that I could get on with the business of living well. My key to moving forward has been engagement.
Engaging with friends
Letting friends in on this new development in life has been a source of support moving forward. The support of friends and family provokes the experience of being known for who you are, which for me includes my private experience of the irritating tremor or the latest non-movement symptom. Being open about my Parkinson’s diagnosis has required transparency with friends in order to be known and move forward living well.
Engaging with the care team and the PD community
I live in Grand Rapids, Michigan, where I have access to Corewell Health’s Parkinson’s multidisciplinary team, a program that the Parkinson’s Foundation has designated one of the first Comprehensive Care Centers in the U.S. I feel lucky. This Care Center has served as a gateway to new friends and other communities formed by people with Parkinson’s. The care team invited me to join the PD advisory council to help grow and improve the multidisciplinary program and urged me to help facilitate discussion in our monthly educational meetups.
Engaging with the research community
After these few deep breaths, I decided to participate in a clinical trial. As a participant in a year-long trial, I learned about Brain Storms by John Palfreman, an excellent history of PD research. I also learned about the Grand Challenges Annual Meeting at the Van Andel Institute. There, I met medical professionals, graduate students, clinicians and others doing research on Parkinson’s, as well as staff from Cure Parkinson’s in London. These relationships have been a source of inspiration.
I was engaged with a local trail running community for more than a decade prior to my diagnosis in late 2021. Weeks after my diagnosis, I connected with one of the Davis Phinney ambassadors who urged me to start weightlifting to add to my routine as a trail runner. At the gym, I have met a few others with Parkinson’s and made new friends without PD who are lifting and moving like me: to improve their quality of life. My trail running now includes my neighbor’s dog Khloe, one of my best friends and supporters.
When I was diagnosed with Parkinson's disease (PD) in the fall of 2019, I was devastated. As an occupational therapist for over 30 years, I knew how debilitating Parkinson's could be and how the trajectory of my life would be changed forever. However, once I came to terms with my PD diagnosis, I vowed to do everything in my power to slow the progression of this disease.
As someone who enjoys information gathering, I set upon learning as much as I could about Parkinson’s. I scoured the Parkinson's Foundation website for information about being newly diagnosed and viewed countless webinar recordings on subjects such as nutrition and diet, exercise, medication and research. I also enjoyed reading the stories of other people living with PD and getting inspiration from their experiences.
After learning more about PD, my routine included regular check-ins with my neurologist at NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence, as well as managing my symptoms with medication. In addition, I embarked upon an exercise regimen 4 to 6 days per week which included strength training, kickboxing, Pilates and yoga.
However, when my husband and I decided to take dance lessons to prepare for our son's wedding, I wasn’t sure if Parkinson’s would interfere. Would the dystonia in my feet slow me down? Would my decreased balance interfere with my ability to negotiate turns? Would my fear of falling affect my ability to move? Would my bradykinesia interfere with the fluidity of my movements? However, with the support of our very talented and patient instructor along with the rest of the team at the Fred Astaire Dance Studio in Marlboro, New Jersey, I was able to dance the night away at our son’s wedding.
One year after we started our dance journey, my husband Nick and I danced a spotlight foxtrot at our studio's monthly dance party. It was terrifying... and exhilarating! I had done it! Despite my fears and lack of confidence in my ability as a person with Parkinson’s disease, I had performed a (mostly) fluid and graceful foxtrot in front of a room full of dancers with my husband. The video of us dancing received over 15,000 views on social media!
My husband and I have recently set a new goal of dancing a spotlight tango and learning to salsa. I hope to continue to dance for many years and to inspire other people living with PD not to let their fears hold them back!
Parkinson’s disease (PD) has made me a better basketball player — and a better bicyclist, birdwatcher and bowler. I know that sounds counterintuitive. With a degenerative brain disease, after all, things worsen over time. Right? In the long run, perhaps so.
In the years preceding my diagnosis, however, the churning currents of daily responsibilities — mainly job-related — carried me away from healthful activities that I enjoyed in my younger years.
Then came 2020 — the year I stopped walking right.
I was 49.
Looking back, I now recognize that the first signs of Parkinson’s disease popped up years before that — increased anxiety, attention deficits, fatigue, muscle rigidity and shoulder stiffness. But it was the sudden onset of persistent cramping in my left foot that figuratively (and literally) threw me off my stride. The cramps progressed to a constant limp that dogged me even when no cramps were present. I began bicycling for exercise rather than my usual walking or running — because bicycling did not trigger the cramps.
I finally saw a neurologist. After months of uncertainty, I received my Parkinson’s diagnosis in February 2022. Directly upon diagnosis, my neurologist at Indiana University Health, part of the Parkinson’s Foundation Global Care Network, provided me with educational books published by the Parkinson's Foundation.
Upon learning more about my symptoms, I found out the foot cramps were Parkinson’s-induced dystonia. To my great relief, a regimen of carbidopa-levodopa dramatically reduced the dystonia and the limp. I began enjoying walking again — with a new appreciation for being able to do so. Across a spectrum of activities, my PD diagnosis brought me back to doing things that promote better mental and physical health.
Support of family and friends is paramount. My wife, Amy, has been a constant partner at every step. Together, motivated by a mutual desire to stay active, we have spent more time doing things we love like hiking, birdwatching and bowling. Likewise, I have valued the encouragement of my three daughters — along with my parents, in-laws, friends and co-workers. I’ve also appreciated interacting on Facebook and Twitter with others facing Parkinson’s disease.
Basketball has become my primary therapy. I play 4-on-4 half-court hoops two nights a week. When I’m on the basketball court, I don’t think about my symptoms.
After playing infrequently during my 40s, I now enjoy trying to improve my skills each week. My outside shot — such as it was, anyway — has largely survived. But when I drive to the basket, I miss layups time after time. So, my current goal — besides passing the ball better — is to actually score the bucket after getting past defenders on the way to the hoop.
Exercise is so enormously beneficial for Parkinson’s disease. Conversely, the worst thing for PD, in my experience, is spending long periods sitting at a desk or otherwise being sedentary. After years as a news journalist, I have now worked in state government since 2014. My job requires hours at a computer keyboard, but I do my best to get up and be active in the midst of workdays.
As I now deal with some dyskinesias and other symptoms, I realize that Parkinson’s is a tough opponent. But we can keep scoring points, nonetheless.
