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.
April 17 to 23 marks National Volunteer Week! All year round, we rely on the passion and energy of volunteers serving as Parkinson’s Foundation Ambassadors, to make a difference in the lives of people with Parkinson’s disease (PD) every day. Thank you from the bottom of our hearts for everything you do in your community to spread awareness and make life better for people with Parkinson’s today.
Meet three amazing volunteers and read their inspiring stories that celebrate their contributions to the PD community.
Mark Kelm
People with Parkinson’s Advisory Council Vice Chair
Minnesota and Dakotas Chapter
Living with young-onset Parkinson’s disease while raising three kids with my wife has offered a few unique challenges and a superabundance of blessings. Like so many others experience, my PD rigidity, tremors, and balance issues make daily life tasks more taxing for me. It can be easy to allow these symptoms to make me sit on the sidelines of life. I’m sure many others have felt the same way.
I have come to understand, however, that we were not made to sit on the bench. We were created to actively engage in this life, making an impact in our own small but significant way.
When my wife and I told our kids of my diagnosis, they were in ninth, seventh and third grade. Our oldest daughter jumped right in, volunteering with the Parkinson’s Foundation Minnesota and Dakotas Chapter. She inspired us to participate as a family in Moving Day Twin Cities. That day, we became more aware of other opportunities to connect and volunteer. By getting involved, we have found that volunteering connects us to others, is good for our minds and bodies, and has brought fun and fulfillment to our lives… keep reading.
Moving Day San Antonio Team Captain
South Central Chapter
I do not do it alone. Like the saying goes, “There’s no I in team.” Going into my third year as team captain of “Team Sloth” for Moving Day San Antonio, I am very proud to volunteer with this energetic and passionate group to raise awareness of Parkinson’s. I may be the captain, but WE all do it all together.
Parkinson’s disease (PD) is not always an easy conversation, especially for the other party. It was difficult for me as well at the very beginning. It took me four years to tell my family and friends that I, indeed had Parkinson’s. I just couldn’t say the words.
Eventually, I found and joined a support group. I learned that they were going to participate in a walk to raise funds for Parkinson’s. I thought to myself, “this is the time to tell my family and friends” … keep reading.
The impact my father’s Parkinson’s diagnosis had on my family was severe and palpable. I’m an only child, so it’s just my mom, dad and me. Shortly after Dad was told he had Parkinson’s in 2018, there was an aggressive narrowing of their independence in the span of about 90 days. My mom became the primary caregiver to my dad, and luckily, I only live about an hour away, so since I’m fairly close I can be there at almost a moment’s notice to help when needed.
It was hard on all of us — the uncertainty and unknowns related to my dad’s diagnosis, but also the change in the family dynamic.
I work in Nasdaq’s San Francisco, CA, office. About six months before my dad was diagnosed with PD, my boss at the time, Jeff Thomas, whose father also has PD, organized a company happy hour to support the Parkinson’s Foundation Moving Day San Francisco event. In that first year, as we all familiarized ourselves with Parkinson’s, Jeff became a great resource and comfort since he had lived through what I was experiencing. He encouraged me to check out the Foundation’s resources and helped me get involved in Moving Day.
Getting involved with the Parkinson’s Foundation felt like a way to do something for my mom… keep reading.
I was diagnosed with Parkinson’s disease (PD) in 2014, at age 75. I am ashamed to say that upon receiving my diagnosis, I yelled at the doctor, “I’m not going to change my lifestyle!” He tilted back in his chair. “You don’t have to,” was his quiet reply. So, this independent, stubborn woman began her journey with PD. What to do?
I ran away! In 2005, I was living a unique retirement lifestyle, volunteering at organizations in the United States that offered free room and board. I had promised to go to the Menaul School in Albuquerque, New Mexico, for a semester. Getting diagnosed with Parkinson’s brought on an entirely new set of questions: Do I stay or go? Should I share my diagnosis with anyone? How am I going to tell my children? I could not say the word “Parkinson’s” without crying.
Now, 9 years into this degenerative disease, I fight back. I have grown past denial, anger and crying, and I have sprung into advocacy. I search for ways to promote awareness for Parkinson’s and to inform the world about the realities of the disease. I am eager to communicate with others living with PD, not to evoke pity, but simply to find understanding and community. By doing so, I have evolved into a Parkinson’s Ambassador.
April is Parkinson’s Awareness Month. I am always searching for new ways to raise awareness for Parkinson’s disease throughout the month. My local library in Ridgefield, Connecticut has been my biggest ally. They have updated their collection of Parkinson’s-related materials and they notify me of each new arrival. The Ridgefield Library is also offering an informational display table with Parkinson’s resources, which will be available all month.
Due to my limited mobility, most of my activism for Parkinson’s Awareness Month has been managed via technology. I reached out to the Ridgefield 1st Selectman, who plans to issue a Proclamation acknowledging Parkinson’s Awareness Month in my town. I am also submitting letters to the editor to local newspapers to further raise PD awareness throughout the month. Awareness is so important for research. I am so pleased and proud of the results.
Psychologically and physically, managing my Parkinson’s is my full-time occupation. However, by participating in volunteer and social activities like being a Parkinson’s Ambassador, interacting with friends, and daily exercise, my attitude becomes energized. After all, motion is lotion.
A while back, I started to notice a difference in my body. After a two-year search to identify and diagnose my symptoms, I finally got a confirmed diagnosis of Parkinson’s disease (PD) in September 2021. This diagnosis was not unexpected, as my older brother had passed away with Parkinson’s five years earlier. My brother had lived with PD for more than 30 years, and he introduced me to the Parkinson’s Foundation.
After I received my diagnosis, I immediately began to search for a gym where I could get out of the house and get someexercise. I was in touch with the Jewish Community Center in Tampa but had not yet joined any of their programs. By the end of September, I became a member of the Jewish Community Center’s Philip Shayman Parkinson’s Program and began the Rock Steady Boxing class immediately. I was not sure I could even participate in exercises due to my low energy, lack of strength and tremors.
The first person I met in the boxing class was Sam Scaff, a volunteer who was coaching the class about boxing techniques. Sam is a retired heavyweight boxer who had boxed professionally. He was instructing the class on boxing techniques designed to help with agility, strength and balance. Sam had been volunteering for this class for over three years and felt it was a calling for him, even though he does not have PD himself.
When I started the class, I was very tired and weak, but I instantly felt like this class was the right place for me. We met twice weekly, and Sam was always there to help us get the moves right. He was very reassuring, helpful and was always joking with me. We became good friends at the gym, but soon that friendship began to blossom. The JCC’s boxing class days became my favorite days of the week! With Parkinson’s disease you often lose social ties, but Rock Steady Boxing gave me the opportunity for not only exercise but also socialization with my peers. I have started a beautiful new relationship with Sam, and I also made many new friends in my classes who all share a common goal: BEAT PARKINSON’S!
In October 2022 I had my annual check-up, and my neurologist was amazed at my incredible progress. My gait, strength, balance and energy had all improved greatly. The Rock Steady Boxing program has allowed me to regain so much energy and strength that I am now able to socialize and maintain my relationship with Sam, as well as being able to play an active role in the lives of my three grandchildren. Exercise is truly the key to managing Parkinson’s. I encourage my peers to challenge themselves to exercise daily — you will feel much better.
Sam is still assisting the class with boxing techniques, and our relationship has grown into a wonderful and supportive pairing. Without the Philip Shayman’s Parkinson’s Program classes, I would have never met Sam or improved my physical and mental health. I tell everyone that exercise is the best thing you can do for Parkinson’s disease. Sam and I walk, box and continue to write our bucket list every day. I hope you will too!
After I was officially inducted into the Parkinson’s disease (PD) community through my diagnosis in 2017, I learned to be an optimist. At first it didn’t come easy to me, but the more I recognized how important it is to keep a positive mindset about your ability to ride the rollercoaster of PD, the more I applied myself to working out my “optimism muscles.”
Lately, I’ve been exercising optimism to dispel nagging doubts about taking on my biggest post-diagnosis challenge yet: climbing Mount Kilimanjaro and making a documentary about the adventure, while raising funds as a Parkinson's Champion. Every day I visualize myself on the peak of Kilimanjaro — tired, but with a blissful grin on my face, ready to descend and celebrate by sipping a Dee’s Pilsner beer at the bottom.
I am also optimistic about what AI (artificial intelligence) can do for diseases like Parkinson’s. I decided to ask the popular AI chat tool ChatGPT to interview me by providing it with the following prompt: “I was diagnosed with Parkinson's at age 49 in 2017 and I'm going to make a documentary about my preparation and attempt to climb Mount Kilimanjaro this summer. Ask me some interview questions.”
What follows is a condensed version of this interview. Each question was generated by the AI wizardry of ChatGPT, but the answers are 100% human, produced by me.
What kind of mental preparation have you undergone to attempt this climb?
I try to redirect any negative thoughts about failure into positive affirmations that I can do this and I will do this.
How do you plan on managing your Parkinson's symptoms during the climb?
As anyone living with Parkinson’s or who cares for someone with Parkinson’s knows, symptom management is the name of the game. One of the things I need to be ready for on the climb is the cold — my body doesn’t handle it well anymore. Once I start shivering it can become uncontrollable, so I will bring a battery-operated heated vest to keep my core warm.
What message do you hope to send to others who may be living with Parkinson's or other chronic illnesses?
Keep challenging yourself to do something that pushes you outside of your comfort zone, even if just a little bit. It doesn’t need to be climbing Mount Kilimanjaro. It could be something like walking up and down your driveway, joining a boxing class or reaching out to a friend you haven’t talked to in a long time.
What impact do you hope this documentary will have on the Parkinson's community?
I hope this documentary will help people with Parkinson’s challenge themselves to keep moving and enjoying life as much as they can. I also hope that people will see how much more they can accomplish by surrounding themselves with a supportive community. This is not always easy to do, but there are resources out there that can help you!
Learn more about Marco’s climb at his website: Parkimanjaro.
I had neck surgery for a pinched nerve in 2014. As that healed, I developed tremors in my right hand. A trip to the neurologist and a DAT scan yielded a diagnosis of Parkinson’s disease (PD) in early 2015. I was 56 years old and working as a chemist at the University of California, Davis.
I continued to work. I was lucky to have a boss and a cadre of incredibly supportive coworkers. In 2018, I was able to join Hope Is in Your Corner — a Rock Steady Boxing group. This fantastic program is a combination of an exercise class and support group. It uses drills that address specific Parkinson’s concerns like stepping, falling and walking. We practice strength and cardio exercises and boxing, of course, which is incredibly fun. It’s a little unfortunate that I had to get Parkinson’s disease to discover just how fun boxing is!
Conversations at my Rock Steady Boxing group introduced me to the Parkinson’s Foundation, where I was able to find additional resources to help fight PD. I use the Parkinson’s Foundation website to stay updated on the latest information about the disease.
I retired in 2020. The decision to retire was based on my desire to work out every day to combat this disease, along with my failing ability to handle stress. I also just didn’t want to work anymore. The subtext was, of course, to travel and enjoy retirement “while I still could.”
I was walking every morning, boxing twice per week and swimming three times per week. I started to ride a bicycle every night and take several two-to-three-hour rides with my wife per week. I continue to use this exercise strategy, but I have had to scale back a little due to fatigue and lower back pain.
As a hobby, I started drawing cartoons despite a complete lack of skill. Someone asked me to make one per day when the pandemic started, to help cheer everyone up. A year later I ended up self-publishing two cartoon books about Parkinson’s disease. The cartoons make fun of the often-bizarre symptoms people with Parkinson’s can experience and highlight situations where having PD is an advantage. My other projects include writing poetry and writing songs, many of which are about my life with Parkinson’s disease.
My progression with Parkinson’s has been slow — the shaking has moved to my right leg, and I have noticed a little more stiffness and slowness. My approach is not to view Parkinson’s as an affliction but as just part of who I am now. As things become more difficult, I don’t view PD as limiting what I can do, but rather as challenging me to figure out different ways of achieving what I want.
My Parkinson’s journey continues. I am so lucky to travel it hand-in-hand with my wonderful wife, Sharon, and with the support of my family, friends and fellow boxers.
In 2015, while walking with my wife, Jody, in our neighborhood, I suddenly found myself bent over and taking tiny, rapid, repetitive steps. I knew I was moving too fast but could not stop myself. Jody thought I was kidding — until the moment I fell down on a neighbor's lawn.
A passing driver slowed down to ask if I was okay. I was alright, but thought the experience was odd.
I saw a neurologist friend a week later. In retrospect, I’m not sure how I knew that I needed to see a neurologist; perhaps, given my decades as a pediatrician, my clinical judgment was operating on a subliminal level.
My friend did several clinical tests — watching me walk, evaluating my facility with finger-to-nose movements, rapidly opening and closing my hands and so on. My history included loss of my sense of smell (I’ve never been able to discern the nuances of red wine) and horrible handwriting (not just because I'm a physician).
The neurologist said that I had a mild case of Parkinson's disease (PD), placed me on levodopa and suggested that I begin physical activities to stave off progression. Though I didn’t know much about Parkinson’s, I began doing a movement class, Pilates, a boxing balance-and-agility class, doubles tennis and nine holes of golf once a week. I looked at all of this as the upside of PD —getting to doing activities that I enjoy.
But I felt a bit skeptical of the diagnosis. My symptoms were so mild that I wondered if I really had Parkinson's. This thought cropped up with some regularity, but I resigned myself to taking levodopa.
My symptoms haven’t progressed much in the ensuing seven years, except for some problems with balance; I now walk with a cane. I have an occasional minor tremor of my right index finger. This tremor, which worsens with stress, makes it hard to lift a spoon to my mouth (worse with soup), clip my fingernails (necessitating a monthly mani-pedi) or text with my iPhone (now I use a stylus, or dictate messages into the phone).
The most interesting thing about PD has been its effect on my relationship with my wife.
Jody started out knowing as little about the disease as I did, but our responses differ: where my glass is half full, hers tends to be half empty.
My approach to medical travail is simple: I use denial as a coping mechanism. It may seem illogical, since I’m a physician, but I do not need to delve into the Internet to understand what is happening to me. I simply rely on my physician to tell me what I need to know. My tendency is to assume that, since I’m being proactive with exercise, my symptoms will not progress.
As part of my routine, I participate in online movement programs geared to people with PD, who sign on from locations across the country. During these meetings, Jody and I see people whose symptoms are much worse than mine: persistent tremors, dystonia, masked face and uncontrolled movements.
I am unable to imagine myself with those symptoms, feeling convinced that my exercise regimen will ward them off. But interestingly, Jody goes to a dark place. She has said things like, "If you fall, I will not be able to lift you up. If things get worse, we will have to consider an assisted living arrangement.”
Jody has been helping and supporting me for thirty years, and now that I have PD, that need has intensified. Her efforts to make sure I’m taking care of myself include questions such as, "Are you wearing a belt?" and "Did you take a shower today?"
I react with silence. In my mind, silence means yes, but to Jody, it can seem passive-aggressive. It is true that I find these kinds of questions demeaning. Of course I am doing these things, and the fact that she feels compelled to ask me seems like a sign of either anxiety or a wish to make sure that I’m doing what I need to. My nonresponse is perhaps my way of trying to retain control over my life and my PD.
Sometimes Jody offers to do something for me, like taking my arm when we’re walking downstairs. I know I can maneuver them myself, but if I say so, and take my arm away, it can create tension between us. I find it difficult to explain that I understand her concerns, but that I also need to maintain a sense of control over my illness.
Jody and I are each trying make peace with our changed reality. Still, there is hope.
Resources available through the Parkinson’s Foundation help me handle my PD. I attend their online webinars to learn more about Parkinson’s and I exercise daily to manage my symptoms.
Attend a PD Health @ Home event to learn more about Parkinson’s and how to manage your PD symptoms.
Use It or Lose It: It’s Never Too Late to Get Moving in Parkinson’s
No matter where you are in your Parkinson’s disease (PD) journey, regular movement is good medicine. While studies show incorporating an exercise routine is essential to PD symptom management, knowing where to start — or how to safely start back up after a break — can be a challenge. Working with a physical therapist to build a tailored exercise plan and finding the right support can provide motivation to get moving.
This article is based on a Parkinson’s Foundation Expert Briefing Use it or Lose it: The Impact of Physical Activity in Parkinson’s presented by Miriam Rafferty, PT, DPT, PhD, Shirley Ryan AbilityLab Research Scientist from Northwestern University, a Parkinson’s Foundation Center of Excellence. Dr. Rafferty is also a Foundation Parkinson’s Outcomes Project steering committee member.
Broad Exercise Benefits
It’s no secret that exercise is good for all of us. For people with PD, exercise is a powerful component of well-being. The Parkinson's Outcome Project, the largest-ever study of people with PD, shows those who exercise at least 2.5 hours per week soon after diagnosis experience improved quality of life.
A structured, rigorous exercise program can ease PD movement symptoms. Task-specific workouts benefit walking, balance, strength, mobility and more. Exercise can boost quality of life and minimize non-movement symptoms such as mood changes, depression and anxiety. It can improve cognition, as well as heart and lung function, too.
Dangers of Deconditioning
While many of us have the best of intentions regarding exercise, life’s unpredictability can easily derail progress. Increased pain or fatigue during exercise, an injury, a fall or, in recent times, COVID-19-related closures are all valid reasons an exercise routine can be disrupted.
Frustratingly, periods of inactivity decrease our ability to be active. Lack of exercise leads to “deconditioning,” a challenging cycle in which fatigue grows, movement becomes increasingly difficult and strength and endurance decrease.
Just a few days of inactivity can make a normal exercise routine feel more demanding. Longer movement breaks can cause feelings of fatigue even during everyday activities, such as walking or grocery shopping. Extended hospitalization or bed rest can result in severe deconditioning, where completing even the most minimal activity without fatigue is difficult.
Though it’s important to try to arrest deconditioning early, it’s never too late to reap the benefits of more movement and get back on your exercise routine.
Small Leaps Lead to Success
Research shows jumping into, or back into, an exercise program can be overwhelming. People often embrace healthy changes gradually, in stages. In terms of exercise, this can range somewhere in between these four stages:
Precontemplation stage: You have no intention of working out or are beginning to contemplate taking action.
Contemplation stage: You are aware exercise is beneficial but have not made the leap from knowing to doing.
Preparation stage: You started to exercise but are not doing it regularly. Or you are building up your exercise routine after a break.
Active and avid exerciser stage: You work out regularly to maintain good health.
To move from thinking about exercise to actively engaging in fitness, you’ll need to address each of the challenges standing in your way. A successful commitment to long-term exercise requires motivation, support, direction and occasional adjustments to your program, based on your specific needs.
Enlist Supports
Once you have made the decision to prioritize exercise and well-being, creating a system of support can help you maintain your commitment. A physical therapist can help you ease into activity safely and help you maintain movement throughout the course of PD — creating a movement baseline, designing an exercise program tailored to your needs and addressing movement challenges as they happen.
Look to friends, family, your social support network or your care partner for motivation and collaboration. A workout partner can keep you engaged, accountable and safe. A convenient location can ease barriers to exercise. Good symptom control is also important. Work with your PD doctor to optimize your medications.
Digital health technology can also help. Smartphones or watches often offer fitness-tracking features such as a pedometer (step-counter) and heart rate monitor and allow users to download exercise applications and monitor exercise progress. Setting a timer can nudge you into remembering your regular workout.
Adjust as Needed
Parkinson’s is progressive, meaning symptoms and needs can change as the disease advances. It’s important to discuss strategies to improve coordination, strength, balance and other challenges that interfere with daily living with your healthcare team annually.
Together with the American College of Sports Medicine the Parkinson's Foundation created Parkinson’s disease-specific exercise recommendations, advising people with Parkinson's to strive to participate in 150 minutes of aerobic activity, strength training, balance activities, stretching and more weekly. A physical therapist can tailor these key elements into an exercise program suited to your current needs.
Most importantly, find an exercise you enjoy. It can help you make a long-term commitment to healthy living.
Learn More
Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for referrals to health professionals and Parkinson’s-specific exercise classes near you.
Our PD Health @ Home Fitness Fridays workouts — a collection of Parkinson’s-tailored fitness videos — can help you get moving from the comfort of home.
It has been almost nine years since I was diagnosed with Parkinson’s disease (PD). As I have said in the past, I call it “my little glitch.” I do have “poor me” times where I am sad, frustrated and wonder what the future holds for me with this illness.
One challenge I have is my shakes (tremor) and the on and “off” times pills (when Parkinson’s medications wear off between doses and cause worsening symptoms). I try really hard not to let it affect me, but I know there are many other symptoms I could have that I do not. I was able to change the timing of some of my medications with the help of my doctor and control my morning nausea, which was a very difficult symptom.
In 2022, Nasdaq featured Debbie and other Parkinson’s advocates in honor of the Parkinson’s Foundation leading the bell ringing ceremony.
I pride myself on being happy, funny and upbeat most of the time. I truly think this attitude has helped so much with having PD. For example, most people that meet me for the first time are so surprised that I have it. I would like to say it’s because of my attitude, but in truth I feel people think it is an “old person’s disease” because they know someone with Parkinson’s who might be much older, both mentally and physically than I am.
I am lucky to have been very active my whole life and have been exercising specifically with weights for more than 20 years. At 69 years young, I can’t do the same things I did when I was younger, but that does not stop me from doing it. I still lift weights and teach spin class — both in person and virtually! During the pandemic I started a Facebook live spin class for my friends and community.
What keeps me upbeat is I LOVE MY LIFE. I have an amazing husband, daughter, son-in-law-to-be and wonderful friends and family. Life is short and if I can’t do anything about having the disease, at least I can contribute to PD clinical trials, be part of the Parkinson’s Foundation California Board, and be a support to those who are newly diagnosed.
I work to inspire others by participating three years in a row in Parkinson’s Revolution with my team Debbie’s Dynamos.
I ride and fundraise for Parkinson’s Revolution because it is a wonderful event. We have fun, but more than anything, the funds we raise make such a difference to me and the many who live with Parkinson's every day. This event is special, and everyone who rides is the type of people who helps change lives, lift people up and make the world a better place.
