I am a 51-year-old grandmother of one, mother of two, and wife to the best man I know. I was diagnosed with Parkinson’s disease (PD) in June 2017.

I had been seeing a neurologist since 2015 because of daily headaches. At one of our appointments in 2017, he noticed a problem with the way I was walking. He pointed out that I was dragging my right side and that I was not swinging my right arm. He immediately ordered a DaTscan.

I went to the scan appointment alone because I truly believed they were going to tell me that the test was negative. That day, the physician’s assistant looked at me and said the words that would change my life forever: "Your test results indicate that you have Parkinson’s disease."

I did not react well to the news. I started to ask questions, but with every word, I cried harder. She gave me no empathy, just a prescription that was supposed to help with the tremors. I tried to make a follow-up appointment on my way out and I couldn't even manage that. Walking as fast as I could to my car, I got in, started the car, and began to sob. My husband didn't know how to react to the news either. We weren't talking to each other; not because we were angry, but simply because we didn't know what to say. I got through the first week, then the second, and so on, but I wasn't feeling any better.

A few weeks after I received my Parkinson’s diagnosis, I finally paused the crying enough to really think about things. I started doing research on the best neurologists who specialize in Parkinson's, and I found out that one of the most renowned neurologists in the country is right here in Las Vegas. His name is Dr. Mari, and he works at the Cleveland Clinic Lou Ruvo Center for Brain Health, a Parkinson’s Foundation Center of Excellence. It took me about three months to get an appointment there, but I already felt better about making progress toward treating the disease. I stopped asking, "Why me?" and started asking, "Can I improve?".

At my appointment, Dr. Mari put me through several physical tests and confirmed the Parkinson’s diagnosis. He changed the medication I was on — since I hadn’t followed up with my previous doctor, I wasn’t taking the correct dosage. He also put in a referral for physical therapy, explaining that this PT was set up specifically for my symptoms. It was not necessarily to help with pain, but to help with movement, so I agreed to go.

I met with the physical therapist, and we went over everything. At my first appointment, she tested how many steps I could take in 6 minutes. I was only able to take 375 steps, when the average amount is 1,800 steps. Other tests showed that I was also experiencing problems with reach and balance. We set up weekly appointments to work on improving my mobility.

Five weeks later, we had a “test day” to see how much my symptoms had improved since starting physical therapy. I began with the walking test, and when the 6 minutes were up, my physical therapist was smiling from ear to ear. I had walked 1,696 steps in 6 minutes! I knew that I had more work to do, but I knew I could do it. My vertigo was gone, I could walk at an almost normal pace, my balance was really improving, and I had my confidence back. I continued to exercise for at least 30 minutes a day, and I got better and better.

Fast forward to Spring 2019, I got a team together for Moving Day Las Vegas. While I was there, I met Darbe Schlosser from Recalibrate Motorvation. Her program received a community grant from the Parkinson’s Foundation, and she asked me if I was interested in becoming a client. Of course I was! I was gifted with 16 boxing sessions, where she taught me how to extend my reach, build my stamina, increase my balance and reaction times, and move my feet and arms at the same time again.

As I continued my battle with Parkinson's disease and I started to feel almost normal again, I began to wonder about my new purpose in life. I could no longer work as a social worker; due to a cognitive problem related to PD, my mind couldn't handle the stress and paperwork involved. I started to realize that I could design art pieces out of everyday products. I had never experienced this kind of creativity before, but I decided to try. I began painting, designing, and drawing one-of-a-kind pieces.

Is it possible that Parkinson's can be a blessing? I believe, in my case, it is a blessing. I have a whole new purpose in life, and while there are times when I don't feel well, I know that when I am feeling good, I can spread positivity through my writing and creation of art.

Anyone who has been given a life-changing diagnosis like Parkinson’s should know that, with a little research, you can find help and resources.

You are not alone. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s disease questions.

My grandfather S. Jayaraman used to be one of the healthiest people I knew. He had an excellent daily routine, great food habits, never took any medication, was full of youthful energy, and inspired many. He would play the instrument he loved like no other, the Veena — the national instrument of India beautifully demonstrating the astonishing dexterity of his fingers.

When he was 73 years old, in the summer of 2021, during one of our walks around the community I noticed he slowed down a little and I also observed a tremor in his right hand. A bit perplexed, I returned home and shared this with my parents. The family was not clear as to what was going on.

My dad decided to get to the bottom of this. The doctor arranged for a series of blood work diagnostics, and we were referred to a neurologist in Hamilton, New Jersey. After seeing my grandfather over a couple of visits, the doctor confirmed that my grandpa had developed Parkinson’s disease (PD). He started becoming inflexible so he could no longer play the Veena freely. I was shocked, as he has been my music teacher ever since I can remember.

Our family had no background in Parkinson’s, let alone knowledge of the potential causes and treatment for this disease. The doctor prescribed my grandfather dopamine medication that he needed to take regularly for the rest of his life. Everything was so obscure. But one thing the doctor said during our visit stuck with me: grandpa’s Parkinson’s disease could be controlled by regular tailored physical exercises.

Armed with this insight, my family decided to invest at least one hour every day with my grandpa to help him move. My dad, my mom, my younger sister, and I would take turns exercising with him. We came up with an exercise schedule. I would also create writing assignments for him every day. We could see that the regular exercises were helping him to move more freely.

With my pocket money, I bought him a leg strap so he could do his leg stretches, a stress ball for his hand, a whistle for his vocal muscles, a specialized pen, a timer, and a journal to help schedule and track each activity.

The regular exercise routine and the intergenerational bonding we established through these activities greatly helped my grandpa. By the fall of 2021, we saw a noticeable change. Our musical lessons restarted, and my happiness knew no bounds. Encouraged by the progress my grandpa was showing, I decided to help more people with Parkinson’s. I designed a kit containing exercise resources that I wanted to share with fighters like my grandpa in the New Jersey and Pennsylvania region.

I did not know exactly how I would reach these fighters and bring about awareness of exercise. I created a presentation about mobility and emotional assistance for people with Parkinson’s and shared it with PD support groups, physicians, and rehabilitation centers. I was moved by the number of people who wanted to support my idea. I was encouraged to start a youth-run non-profit organization. During the Christmas break of 2021, I founded Act MoveHope to care for Parkinson’s disease fighters.

I raised funds by performing Veena music concerts, which I used to distribute mobility kits and personalized handwritten cards to 20+ fighters in partnership with Rock Steady Boxing New Jersey. The greatest gift has been receiving “thank you” phone calls and notes from the people who use the kits.

The Parkinson’s Foundation has provided encouragement throughout this year, and I am thankful for their support in sharing my story to benefit more PD fighters. There is hope for people living with PD through action and movement. I am happy to work with the Parkinson’s Foundation to continue the fight against Parkinson’s.

Want to make a difference in your local PD community? Become a Parkinson’s Foundation volunteer.

My father was diagnosed with Parkinsonism in 2019, which likely resulted from a traumatic head injury. He was a successful and well-respected orthopedic surgeon for almost 40 years in Chicago, IL. He was the first to bring many bone surgeries to Chicago in the 1970s and ‘80s. 

As a pioneering surgeon, he loved helping others as a physician, so much so that he didn't want to retire, even into his 70s. He was known as a no-nonsense surgeon, who always thought of surgery as a last option, not the first — which was something rare in the ‘80s and ‘90s and is even rarer now. 

He didn't need to work anymore, as he had provided for his family for years and deserved retirement. We finally convinced him to retire so that he could work on his golf and tennis games! Sadly, less than five years into his retirement, he had a bad fall and then started to experience symptoms consistent with Parkinson’s disease. It slowly took away his independence and forced him to accept assistance. We are still unsure what form of parkinsonism he has as it has progressed for the past three years, quite quickly, making his ability to walk and talk very limited. 

I did not know much about Parkinson's before my father's diagnosis, but since then, I have become a student of the disease, and have been raising thousands of dollars for the Parkinson’s Foundation by donating all the proceeds from the T-shirts I sell at my comedy shows. I travel the country as a stand-up comedian, promoting my "Better Call Paul" shirts at my shows — I used to be a lawyer so it's a wink and nod to the show "Better Call Saul!” 

I regularly hear stories from others who have been personally affected by Parkinson’s and continue to learn more about this disease and its wide-ranging impact. Many of these conversations and connections end with tears and hugs with fellow family members who have suffered and lost.  

When it comes helping your loved one with Parkinson’s, talk to as many people who have been affected by Parkinson’s as possible, read as much as you can, be an advocate for your loved one and be positive.

In December 2022, I launched Stand Up for Parkinson’s, a Comedy Night supporting the Parkinson’s Foundation Midwest Chapter. I hope to continue my work with the Parkinson’s Foundation in the coming years!

Looking for ways to help your local PD community? Learn more on our How You Can Help page.

My brother, Ivan, is a proud U.S. Navy veteran. He is a 6’2”, tall, handsome and young-looking man at 49 years of age. Ivan has given 20 years of his life to our country, and he never hesitates to tell you that he would serve again if asked. After serving in the Navy for many years, Ivan was diagnosed with Parkinson’s disease (PD) in 2019.

I have begun to realize how Parkinson’s disease affects people since my brother received his PD diagnosis a few years ago. Through Ivan’s experience, I have witnessed how Parkinson’s is a serious and life-altering disease. I work with him and assist as much as I can while he researches ways to manage his PD symptoms. I would do anything to care for and help my siblings — those who know me know that this is no exaggeration. I would gladly give my life for my brother as he risked his life for our country and, more directly, for me. To honor my brother’s service, I try to bring awareness to Parkinson’s disease as much as possible.

I appreciate how the Parkinson’s Foundation works to help all people with Parkinson’s disease. One reason I support the Parkinson’s Foundation is to advance Parkinson’s research. Through research, the Foundation has discovered ways to reduce complications from Parkinson’s and significantly increase quality of life for people living with PD. Thanks to medications and exercise, some people have been living with Parkinson’s for decades and have successfully slowed the progression of their disease.

The Parkinson’s Foundation uses research to help people apply strategies to improve their overall lifestyle. While the Foundation has already seen success in their research and care initiatives, continuing to invest in research will help find solutions to make all people with Parkinson’s live better lives.

I want to do everything I can to help advance research toward a cure for Parkinson’s disease. Many employers match charitable donations made by their employees. I work for AbbVie, a pharmaceutical company. When AbbVie announced a giving campaign over the summer, I decided to donate to the Parkinson’s Foundation and the company matched my donation!

I donate to the Parkinson’s Foundation in hopes that there will be easier times for my brother, Ivan, in the future. In the meantime, the Parkinson’s Foundation website is a great place to find more information about Parkinson’s disease.

Make a matching gift through your employer to advance Parkinson’s disease research today.

2022 Launch Award  

Finding a Way to Enhance the Survival of Dopamine Brain Cells

Dopamine is found in brain cells. The death of these cells leads to the hallmark movement symptoms of Parkinson’s disease (PD) — including tremor, rigidity and issues with balance. Nitya Subrahmanian, PhD, of the University of Florida, a Parkinson’s Foundation Center of Excellence, received a Parkinson’s Foundation Launch Award to test if boosting mitochondrial function can help dopamine cells in the brain survive.

Parkinson’s movement symptoms are driven by a severe loss of a type of brain cell (called neurons) that makes the chemical dopamine. By the time a person is diagnosed with Parkinson’s, about half of their dopamine cells have already died. This loss continues over time and unfortunately, there are no medications that can preserve the existing dopamine neurons or reverse the disease. To improve quality of life, current treatments enhance dopamine levels and reduce movement symptoms.

Mitochondria are tiny compartments within the cell that are involved in energy production. Up to millions of mitochondria fuel each brain cell. Without enough healthy mitochondria, cells may not make enough energy to support brain function, leading to disease.

Complex I is an enzyme in the mitochondria that contributes to this energy generation. The enzyme does not work correctly in the brains of people with Parkinson’s.

Matthew LaVoie, PhD, at the University of Florida, recently discovered that a new chaperone (a protein that assists in the folding of other proteins) can increase mitochondrial energy levels. Dr. Subrahmanian, under the mentorship of Drs. LaVoie and Benoit Giasson, will study whether this protein can help dopamine brain cells survive in models of Parkinson’s.

Another trait of sick cells in Parkinson’s is the buildup of a toxic protein called alpha-synuclein, which causes the formation of Lewy bodies in the brain. Dr. Subrahmanian will also find out whether this mitochondrial chaperone can protect dopamine neurons from the toxic alpha-synuclein.

To answer these questions, Dr. Subrahmanian will engineer stem cells to create excess amounts of the mitochondrial protein. Stem cells are capable of multiplying and have the potential to form any type of neuron. First, Dr. Subrahmanian will guide them to become the dopamine brain cells typically lost in Parkinson’s. Then she will evaluate the protection that comes from the improved mitochondrial function. She will also use a similar approach in a mouse model.

“Our findings can help drive the development of new Parkinson’s therapies by enhancing mitochondrial function. These research efforts could lead to a profound paradigm shift, with the potential to elevate the treatment from palliative care to cure,” she said.

Of her Parkinson’s Foundation grant award, Dr. Subrahmanian said, “I am sincerely grateful to the Parkinson’s Foundation for specially designing the Launch award for young aspiring researchers like me. This award provides financial support beyond two years of mentored research. It will play a vital role in achieving my long-term career goal of becoming an independent investigator in academia.”

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers.

Our story begins in early 1997, when Jane’s bank rejected a check she had written, claiming the signature did not match the one on file. Her handwriting had become unreadable. She had also noticed that when she walked, her dominant arm did not swing, but instead came up by itself and rested stiffly across her stomach. Jane’s primary care physician ran imaging tests to rule out structural problems in her hand. None found, he referred her to a movement disorder neurologist.

The neurologist observed slowness and stiffness in her movement (bradykinesia) and impaired fine coordination in her hand. She received a tentative diagnosis of Parkinson’s disease. Jane was put on carbidopa/levodopa for a 3-month trial, and her symptoms improved. After her Parkinson’s diagnosis was confirmed, Jane’s neurologist changed her therapy to a dopamine agonist, which was to be her drug of choice for the next seven years. Jane’s neurologist did not give her any literature or education about the disease. Since she did not know anyone who had Parkinson’s, the diagnosis did not upset her. As far as she was concerned, a little handwriting problem and her right-arm action when she walked had little impact.

Jane and I had known each other for many years. She was part of my extended family, dating back to when she was in college. In 1998, I decided to retire from my career as a scientist and engineer. I called Jane up one day and told her that I and my Siamese cat, Nefertiti, were going to board my 38-foot powerboat and travel down the Intracoastal Waterway to the west coast of Florida, where we would spend the winter. I asked her if she would like to come. She said yes. We have been together ever since.

For the next six years, we had a great life. We settled in Florida and built a home in the waterfront community of Punta Gorda Isles. Jane established a relationship with a local neurologist, whom she saw periodically. All was well until 2005, when Jane began to experience additional Parkinson’s symptoms. She gained significant weight. She was unable to get a good night’s sleep. During the day, she would suddenly fall asleep, even when talking with someone, waking 10 or 20 seconds later as if nothing had happened. She could hardly get around, even with a walker. Getting out of a chair required assistance. She was also exhibiting tremors in her hands and feet. The situation was not looking good, but everything was about to change because of our self-motivated effort to learn more about Parkinson’s disease.

In October 2005, we went to a Parkinson’s seminar. Our initial interest was to learn about deep brain stimulation (DBS). However, one of the physicians who spoke discussed the various classes of drugs used to treat the disease, and their side effects. He also spoke of the need for drug therapy to change as the disease progresses. As we drove home, I told Jane, “Make an appointment, we need to talk to your neurologist.” Jane’s neurologist discontinued her use of a dopamine agonist. Six months later, she had her life back! She returned to her normal weight and her sleeping problems subsided. She no longer needed to use a walker. The tremors and stiffness were still there but otherwise, life was good. I later learned that some people on dopamine agonist therapy develop compulsive behavior – Jane’s compulsion had been buying fabric, more than she would ever use in a lifetime. With Jane no longer on a dopamine agonist, the fabric purchases stopped!

We had recovered from the brink of needing to find Jane a nursing home, all because we became proactive, educated ourselves and were insistent that Jane’s medical professionals consider changes in her therapy. The changes in the drug therapy eliminated the side effects that were prevalent in 2005, but they did not stop the progression of the disease. By the end of 2006, Jane started experiencing freezing of gait, increased slowness of movement and tremor. Jane could no longer get onto and off a small boat. We sold our boat, but we could not stay away from being on the water. Our solution was to go on cruise ships, from the large ocean-going liners to the smaller inland river boats.

In March of 2010, Jane received her first deep brain stimulation device. She calls the operation a “no brainer,” as there was no pain associated with the surgery or post-surgery. The result was spectacular. Tremors were essentially gone on the right side of her body. Involuntary movements called dyskinesia, which can be a byproduct of Parkinson’s medications, were greatly reduced. We were so pleased with the result of the surgery that a second DBS device was placed in early 2011, which improved symptoms on both sides of the body.

Despite symptom improvements from DBS, freezing of gait soon began to lower Jane’s quality of life. She did not want to go anywhere. She felt like her feet were glued to the floor. I had read that freezing can sometimes be broken by use of a triggering device, so one morning, I went into my shop and built something I thought might help. Jane called it her “launcher,” and she carried it everywhere she went. We also tried different scooter options for longer walks.

A breakthrough in Jane’s treatment came in 2014. While attending a support group, we learned about Parkinson’s Foundation Centers of Excellence. There was such a place for Parkinson’s disease only a three-hour car drive from our home. Jane met with a movement disorder neurologist, Dr. Michael Okun, who set up a comprehensive treatment plan. This plan is updated every six months and has changed our lives for the better.

During 2017 and 2018, we gained even more experience managing the disease. Jane suffered several falls, one of which put her in the hospital for three days followed by an additional seven days of rehabilitation in a nursing home. Other treatments included voice therapy, physical therapy, occupational therapy and multiple sessions with a psychologist. We later moved to The Villages, Florida to be closer to the Norman Fixel Center for Neurological Diseases, a Parkinson’s Foundation Center of Excellence.

Jane and I have gained 25 years of first-hand experience with Parkinson’s disease. Our support group, recognizing that we had learned a lot about Parkinson’s disease and its treatment, asked us to give a talk about our experiences. The word got out and soon we were speaking to support groups on the west coast of Florida and eastern Tennessee, as well as impromptu small gatherings on cruise ships. Every Parkinson’s journey is different, but our individual journeys all have similarities, so there is much to learn from each other.

Learn more about the Parkinson’s Foundation Global Care Network and find a Center of Excellence near you.