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.

Social worker, lawyer and health care technologist Radhika Iyer was diagnosed with Parkinson’s disease (PD) in 2015 — a difficult experience that spurred her ongoing, inspiring road to PD advocacy.

She’s since served a three-year advisory term on the Parkinson’s Foundation People with Parkinson’s Advisory Council — a panel of people impacted by Parkinson’s who shape the Foundation’s programs and priorities. Prior to that, she was a Parkinson’s Foundation Western New York board member.

These days she uses technology to forge community, friendships and understanding with others with PD, while breaking down stigma surrounding the disease.

She credits a dear friend, whom she has since lost to breast cancer, for recognizing her initial PD symptoms and urging her to visit a neurologist.

“I walked into the room, the neurologist looked at me, had about a 20-second conversation and immediately said ‘Here’s Sinemet. Start the medication,’” Radhika said. “That shocked me.” Radhika left her appointment with a prescription and little understanding of what a Parkinson’s diagnosis meant.

Radhika and her husband of 36 years, Dharma, PhD, a chemical/environmental engineer, were both dedicated to finding answers, and a doctor they could trust. They sought a second opinion and left that appointment even more confused. Radhika was given an incorrect diagnosis of corticobasal degeneration (a rare progressive neurological condition sometimes initially diagnosed as PD). The couple soon realized self-advocacy was critical and began empowering themselves with education.

Their journey led them to move from New York to North Carolina, nearer to their adult children as well as a movement disorder neurologist at Duke Health Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, who reconfirmed Radhika’s initial PD diagnosis. 

The couple settled in a community for active people 55 and older — a perfect fit for the pair who, at the onset of Radhika’s diagnosis, spent their weekends with a group hiking 200 miles across New York state.

Radhika and Dharma stay active, knowing that without mental and physical exercise and the right medications, Parkinson’s symptoms can progress quickly. Radhika also works to incorporate complementary therapies alongside traditional medicine. In addition to her neurologist, Radhika works with a naturopath (a health professional who employs natural therapies) and a physical therapist who specializes in brain diseases, such as Alzheimer's and a PD.

“When I got first diagnosed and when I started finding out about my disease, I was running helter-skelter, getting emotional,” Radhika said. “I didn't have a mentor.” She’s since learned a great deal about how to live well with Parkinson’s and she’s committed to sharing what she knows with others and would love to establish a PD mentorship program one day. 

“We need mentorships — people like me who've been through the ringer with PD would like to share this information with others coming on board trying to understand their disease,” Radhika said. “A newly diagnosed person is going to begin to face the disease and is not quite sure where to begin. The community can help one another.”

To that end, she’s forged her own community and built friendships with people with PD and care partners across the nation. She is making an impact on a national scale in her volunteer role with the Parkinson’s Foundation, helping bring awareness to the disease and dispelling stigma.

Radhika and Dharma are as committed to each other as they are to advocating for the PD community and debunking disease-related myths. 

“In many Eastern/Asian countries, there's always a sense that past karma may have precipitated this disease,” Dharma said. “This is not a karma thing. You're not paying a price for a past life.” Recognizing there are genetic, environmental and other factors behind diseases is important, he added.  

“One of our goals on this journey for both Dharma and I — from a community standpoint — is to encourage Indian individuals who have this disease to come forward and advocate for themselves and advocate for others"

“What I have done for my own sense of purpose and sanity is to have a friend with Parkinson's — an Indian woman who I found on a Facebook chat for Parkinson’s — who I call first thing in the morning just to see how we are doing, so that we feel grounded,” Radhika said. Her friend lives in New Jersey but was raised in India, in the same community as Radhika and Dharma. Along with the woman’s husband, they all share the same first language.  

The women have connected with other people in the U.S. with Parkinson’s who also hail from India. They organize regular Zoom calls to connect and just talk.  

Radhika has reached out to people all over the U.S., and recently Canada to ask them to join the group’s Zoom calls. As Radhika has discovered and shared with her new friends, there is more to this community than just Parkinson’s. “Just connecting and speaking the same language can make all the difference,” Radhika said.  

Explore our newly diagnosed resources

My journey with Parkinson’s began in 2012 at the age of 31 with a small tremor in a finger. My symptoms slowly progressed to my left hand and foot and I spent the next 2 years seeking a diagnosis before a movement disorder specialist identified my symptoms as Parkinson’s. I didn’t know anything about the disease at the time of my diagnosis so I started learning as much as I could.

I’m grateful to have had bilateral Deep Brain Stimulation (DBS) surgery in 2018 to help manage my tremors, ongoing medication management, Botox injections to manage my focal dystonia, and physical therapy to keep moving. Today, while no longer able to work I can focus my energy and time on all aspects of my health and wellness. As a single parent to a precocious 3-year-old, daily living is a challenge but with support from my family and online community I am at a place in my life where I am happy and content.

At the time of my diagnosis I was in the best physical and mental health of my life, unfortunately Parkinson’s changed all of that. I didn’t take the time in my life to slow down and process my diagnosis and I paid a tremendous price for it. My experience is a cautionary tale but also one of redemption and grace.

My advice to someone newly diagnosed is to focus as much energy and effort on your mental health as your physical health. Find a mental health therapist, identify healthy coping mechanisms, join a support community whether it’s online or in person and process your diagnosis. I’m really grateful to the YOPD Facebook group community for being such a great resource for information and a place to ask questions and to share my experiences. It’s here that I met other LGBTQ people living with Parkinson’s and my friend Jason. As a gay man, living with Parkinson’s you can feel even more isolated, but having a gay friend going through the same experience, I no longer feel alone.

The biggest lesson I have learned is we are not alone. Life with Parkinson’s is possible. Our identities are layered with different facets of who we are as people. Today, I’m happy to share that I’m an out and proud gay man living with Parkinson’s disease.

My Parkinson’s disease (PD) journey began by God’s grace. I applied for a new position as a sleep center coordinator. I had no idea what the job entailed, but coordinator appealed to me as something new and different from my past positions. I interviewed with the Director of Neurosciences — having no idea what neuroscience involved. At the end of the interview, the director stated I would be bored with that position by end of week two. She said, “I have a Movement Disorder Coordinator position that I think will be a great fit for you.” I said yes to that position in April 2004 and began my more than two-decade journey with the Parkinson’s community.

My role as a Movement Disorders Center Coordinator spans across 20 years and three healthcare systems. I have learned a lot and this career afforded me endless new family members on a regular basis.

My role includes scheduling, insurance authorizations, educator, community outreach and supporting patients and families on the journey with deep brain stimulation (DBS) . To sum it up...I am the one point of contact for patients, staff, physicians and the PD community. My purpose is to be a resource or connect you with the resources needed on the journey living with Parkinson’s.

My passion is to spotlight diversity and inclusion in the PD community. Having worked in this community for two decades I rarely see all nationalities represented. I know PD is not an exclusive diagnosis, so I work to educate underserved communities, provide resources and connect them to others that look like them and share the journey of living with PD.

Living with a chronic disease can be isolating and affects one’s mental health. Acknowledging that your mental health is “unhealthy” can be challenging. It’s a daily battle for many.

I help patients understand that it’s okay to not to be okay. Your brain is no different than a broken bone. If you break a bone, you contact the specialist or the orthopedic doctor for treatment. We must become comfortable contacting the specialist for our brain when it’s not aligned.

PD patients and families are my heros/sheros. They inspire me to think outside the box and advocate for different processes to change the narrative. My goal is to remove barriers, educate patients and families and empower them to live their best life with PD.

Shareable pearls I have learned along the way:

• Encourage yourself and others.
• Find and focus on the positive.
• Live in the moment.
• Allow yourself grace.
• Celebrate each success.

Kim is a Parkinson’s Foundation volunteer who received our Rising Star Award in 2022. Meet some of our top volunteers and explore ways to get involved today.