I Have Young-Onset Parkinson’s Disease: What It’s Like
It’s estimated that 3M women worldwide live with it, but our specific needs and experiences are often ignored, leading to disparities in diagnosis, treatment and medication 3 Oct 2023. Lifestyle diseases like diabetes, heart disease and some cancers are avoidable, but other conditions sneak up on you when you least expect it.

They’re so insidious and difficult to diagnose. Recognizing the warning signs of diseases and conditions can increase the chances of a reversal or slow their progression. The significance of early intervention cannot be stressed enough for the best outlook and quality of life.
I advocate for proactive education by contributing content in the health and wellness space. So when I was told, “You have Young-Onset Parkinson’s Disease (YOPD),” hearing it from my doctor still stunned me, even if my googling had led me to prepare for it.
Parkinson’s disease (PD) is a neurodegenerative condition characterized by slow movement, often with tremors. In a 2022 Brain & Life podcast, neurologist Dr. Allan Wu explained that PD is caused by a brain condition where dopamine-making cells don’t make enough and can affect one’s gait, posture and balance. While it is usually seen in elderly males, up to 10 percent of people who have PD get it before they’re 40 years old and the risk of PD rises after 60. No two people are alike in their condition and vary in their symptoms.
For the past few years, I went to my rehab doctor, Dr. Jan Lleva, for various injuries, which I attributed to my aging body not taking too kindly to the activities I was putting it through. This time, though, therapy wasn’t cutting it.
Symptoms
When walking or jogging, my right foot would drag, or I’d trip on my slipper. People would ask why I limped and I didn’t even notice, but I did have trouble catching up with my usually fast-walking family. Working with my hands was frustrating; stirring a pot or typing made me involuntarily clench my right leg or toes as if it would help me with control. Added to the mix was my cramped, super small handwriting (micrographia), which I chalked up to not having enough practice writing in longhand.
What got me back to Dr. Lleva was losing my balance. I do yoga twice daily and suddenly, I couldn’t stand on one foot. I wouldn’t even wobble; I’d fall. I’d passed the physical, reaction and strength tests he administered, but only after he made me walk did he notice my right arm wasn’t swinging. He referred me to a neurologist to have a brain scan.
Out of the seven neurologists I contacted at the hospital nearest me, only one was available for a consult within that month. Dr. Jennifer Justice Manzano took her time to ask me many questions. She made me do some movement tests, like tapping my feet and doing close-open motions with my hands overhead like a baby. She recorded me on video so I could see how delayed my movements on the right were versus my left.
After she revealed my fate, she had me take carbidopa/ levodopa to stimulate the dopamine production in my brain. Dr. Manzano said that usually, upon diagnosis, half the dopaminergic neurons are already gone, so we needed to replenish it with the pills. My first ever maintenance medication; I would need to take them for life. But I was glad for them, as only three days into it, my balance was back to normal and my handwriting was looser. Outing myself There is no lab test, definitive blood work or scan to confirm this disease, but the next step was to find out whether I had PD or Parkinsonism, which could give PD symptoms caused by secondary reasons like a stroke. The difference is the latter is not progressive. To confirm, I needed a brain MRI (magnetic resonance imaging).
Undergoing a brain scan for the first time was disconcerting. I didn’t know I was claustrophobic until the tight cage clamped over my face and was pushed into the small metal tube. I panicked. A sip of water after my little freakout, I learned that it helped to close my eyes before being pushed back in. Visualizing calming imagery, praying and taking deep breaths got me through that ordeal.
My friend and radiologist Dr. Catherine Garcia confirmed my normal MRI, which ruled out Parkinsonism. So, since I responded well to the medication, I had PD.
In a 2021 article on Parkinson’s Life, Francisca Ruiz González wrote that the risk of getting PD is almost twice as high in men as in women, but that women experience faster disease progression and a higher mortality rate. She noted that women do not abandon the roles of wife and mother even when sick and are more likely to need paid caregivers. Meanwhile, men tend to have caregivers within the family: their wives.
Why did I risk to “out” myself with this condition? I may appear okay, but I exercise religiously to manage the motor symptoms and deal with non- motor PD symptoms. Parkinson’s Life estimates three million women worldwide live with PD, but our specific needs and experiences are often ignored, leading to disparities in diagnosis, treatment and medication. So I’ve decided to help González make the unknown visible.
“Only through unity, visibility, information and awareness in society will our needs be understood and met,” she said. “How can we give ourselves the care we need if we are not able to be honest about what is happening to our body? Expressing ourselves is part of treatment for this disease.”
Research on the effects of YOPD is inadequate. Many with YOPD may remain undiagnosed or have a considerable delay in diagnosis because PD is still regarded as a senior thing. But the sooner we know, the better we can deal.
Normalizing Conversations About Parkinson’s Disease
Revealing my diagnosis made me feel vulnerable, but there is nothing to gain from tiptoeing around the elephant in the room 24 Oct 2023
Parkinson’s disease (PD) is the fastest-growing neurological disorder in the world, yet the standard treatment for it, levodopa, is already 50 years old. Diseases like breast cancer, AIDS and polio have strong advocates and champions, which is why funding for their research and treatment eclipses that of PD.
“Still” (2023) is an Emmy-nominated documentary about PD’s ultimate poster boy, Michael J. Fox. Beautifully directed by Academy Award winner Davis Guggenheim (“Training Day,” “An Inconvenient Truth”), “Still” explores the life of the well-loved actor and what ensues when “an incurable optimist confronts an incurable disease.”
The editing is brilliant. While incredibly moving and inspiring, it’s not depressing. Fox entertains and pops out the funnies, like “Gravity is real, even if you only fall from my height,” in explaining his many injuries due to PD. When asked why he made the film, the 62-year-old (diagnosed at age 29) said he did it while he still could. It gave me a sneak peek into what may be my future.
After my previous article (“I have Young Onset Parkinson’s Disease: What it’s like,” Oct. 3), some people reached out regarding my Young Onset Parkinson’s Disease (YOPD). A friend worried that she might be afflicted with it; as neurological issues run in her family, she exercises like a beast, hoping to prevent it. A few suggested doctors or alternative treatments; others offered prayers and verbalized support. One revealed a family member stricken with PD after getting COVID-19, while another shared her mother’s experience with the disease before she passed away. A stranger my age has my symptoms and sought me out to connect and swap stories.
These conversations are what I want to normalize with my disclosure. While friends spoke of my purported courage, I see nothing brave about it. It was scary to “show my cards,” and it did make me feel vulnerable, but I realized that the only way to wrangle with PD is head-on. There is nothing to gain from tiptoeing around the elephant in the room.
Genetics, other factors
“Parkinson’s disease is not just about movement problems, but a multisystem condition with nonmotor symptoms,” said neurologist Dr. Allan Wu in a 2022 “Brain & Life” podcast.
The process leading to PD may be an environment with a fertile genetic background, theorized Jeff M. Bronstein, MD, PhD, director of the Movement Disorders Program at the University of California, in “The Latest in PD Research 2023,” a YouTube presentation for the Parkinson’s community. Only about 30 percent of PD can be explained by genetics, with PD pathology originating in the gut and nose, entry points for environmental toxins.
Other than genetics, advanced age, being male, pesticides, air pollution, solvents and head trauma increase one’s risk for PD. Smoking/ drinking alcohol/coffee, exercise and a Mediterranean or vegan diet are associated with a lower risk (but don’t start smoking or drinking just to avoid PD!).
Bronstein explained that the symptoms one experiences depend on what part of the nervous system is involved. Constipation happens in the gut, loss of smell affects your olfactory system, sleep problems and depression impact your brain stem (serotonin neurons), while tremors (which occur in four out of five Persons with Parkinson’s or PWP), stiffness and slowness involve the substantia nigra (dopamine neurons). It is at this point that PD is diagnosed. Then, cognitive problems occur in the cortex. Others present with acting out dreams (during rapid eye movement or REM). Since these symptoms aren’t particularly definitive of PD, consulting with a neurologist can confirm any suspicions.
He added that the disease process spans decades: 20 years before clinical onset, the patient may be having hyposmia (decreased sense of smell), constipation, or a bladder disorder. Ten years later, there may be sleep problems, obesity and depression.
PD is usually uncovered when there is already unilateral tremor, rigidity and akinesia (inability to move one’s muscles and limbs at will). In 10 years, balance issues may be experienced, followed by falls, dependency and cognitive decline. In 20 years, the patient may have dementia or be chair- or bed-bound.
Assurance
In an episode of “Substantial Matters: Life and Science of Parkinson’s,” Dr. Michael S. Okun, a neurologist, said, “It’s not a death sentence, so don’t panic. The outlook can be good if you have a strategy that’s gonna lead to short-term and long-term success.”
This was the same assurance my neurologist gave me, and she encouraged me to continue with my physical activity and even amp it up, as “forced exertion” has been proven in studies to manage symptoms.
I went through a period of self-flagellation, racking my brain for what I may have done wrong. Was it using nonstick pans for cooking? Not buying organic? Most likely because I’m chronically sleep-deprived. I already exercised almost daily and adhered to a vegan diet. Then I read about astronauts, musicians and athletes getting PD despite being physically and cognitively fit.
Wu advocated for society to educate themselves about the disease and be nonjudgmental and supportive of patients affected by neurologic conditions. He encouraged PWP to engage brain and body movements simultaneously for cognitive and physical health.
My bucket list items have been fast-tracked. Overcoming anxiety, I’m now more intentional about connecting with friends and joining online communities like Parkinson’s Fight Club. On top of jogging and yoga, I have returned to jiujitsu and taekwondo for extra mind-body challenges, something I learned was crucial in the Power for Parkinson’s HIIT workouts for YOPD on YouTube that I’ve also tacked on. I may never get to the bottom of how I got PD, but I’m doing my darnedest to keep my symptoms mild for as long as possible.

Unmet Needs in Women With Young-Onset Parkinson’s Disease
They are less likely than men to see a neurologist, less likely to afford speech or physical therapy and more likely to have medical fluctuation 5 Mar 2024.
In the movie “Love & Other Drugs,” playboy medical representative Jamie Randall (Jake Gyllenhaal) has an on-and-off relationship with artist/waitress Maggie Murdock (Anne Hathaway), who suffers from young-onset Parkinson’s disease (YOPD).
I saw this film when it came out in 2010, and I didn’t think much of why Maggie acted the way she did. I thought the sex was gratuitous and that she was just being self-destructive due to her early diagnosis.
We tend to think of Parkinson’s disease as something that only the elderly get. Ever since I was diagnosed with YOPD, I read all I could on the topic, watched YouTube videos, subscribed to email newsletters and rediscovered this movie featuring a character I could relate to.
“Love & Other Drugs” is lumped together with romcoms like “No Strings Attached” and “Friends with Benefits,” and on the surface, that makes sense. But knowing what I know now, Maggie’s motivation behind her actions is not comparable with those films.
There’s a scene where she rattles off her medications: Sinemet (or carbidopa/ levodopa, to boost the amount of dopamine in the brain to manage movement and coordination), domperidone (for nausea caused by the meds), Artane (for tremors) and Prozac (antidepressant) “so that I’m not too bummed about having a major degenerative disorder at 26,” Maggie says.
The anti-Parkinson’s drug Sinemet has sexual hyperactivity and hyperarousal as side effects, which explains Maggie’s behavior. She also frequently stretches her legs and couldn’t open a foil pack of PopTarts for Jamie (due to loss of dexterity and slowness of movement, which she tries to hide). When her meds ran low, she became depressed. I could relate to these subtle tells, how her symptoms ebb and flow, because I get them, too.
‘A Russian novel’
“My advice is to go upstairs, pack your bags, and leave a nice note. Find yourself a healthy woman. I love my wife. I do. But I wouldn’t do it over again. The thing nobody tells you, this disease will steal everything you love in her. Her body, her smile, her mind. Sooner or later, she’ll lose motor control. Eventually, she won’t even be able to dress herself. Then, the fun really begins. Cleaning up her shit. Frozen face. Dementia. It’s not a disease, it’s a Russian novel,” said a man Jamie meets at a Parkinson’s convention.
My husband has medical concerns that came way before mine, even before we got married. I thought I would be the strong one in our tandem, so my diagnosis was a blow.
The movie shows how YOPD goes beyond physical issues like motor skills and cognition, as it affects mental health and self-perception, too. A study on YOPD revealed that those who get it before age 60 have slower progression, increased dystonia (involuntary muscle contraction), depression and poorer quality of life. They differ psychosocially from those diagnosed later in life as they are usually still working, have children to care for, experience more social isolation and a lack of appropriate support compared to older people who are retired or with grown children. YOPD patients also have a higher genetic contribution to their Parkinson’s.
Women with YOPD have it especially rough. In a podcast, Megan Feeney and Jessica Shurer of the Parkinson’s Foundation explained that women are less likely than men to see a neurologist, less likely to afford health care like speech or physical therapy and more likely to have medical fluctuation. They also have more off times, dyskinesias (involuntary erratic movements), and are more likely to go to doctor’s appointments alone.
Such women are also more likely to live alone in older age, get misdiagnosed more often than men and have support groups that can be too old or too male-dominated to be helpful. They also usually care for someone else, with no one looking out for them.
Not enough material
Parkinson’s is more common in postmenopausal women, so there is not enough material on the overlap between perimenopause and YOPD. In a 2019 article for Parkinson’s Life, Heather Kennedy wrote, “I never questioned how the condition might affect me as a woman until I started experiencing unexplainable off times in the days leading up to my periods. I was complaining to my girlfriends when one friend schooled me. She explained that during periods, the efficacy of women’s medication decreases. Since being perimenopausal, though, my periods have become far more unpredictable in heaviness and length.”
Typical menopause manifestations can be confused with Parkinson’s symptoms, and research is sparse on women with Parkinson’s for doctors to recommend hormone replacement therapy.
One study on a group of women with Parkinson’s aged 35 to 59 showed that the majority were anxious about their bodies and sexual image, but such issues are not often tackled by doctors. I saw an interview with an obstetrician-gynecologist with YOPD who got pregnant with her fourth child without knowing if it would be safe or if her medications would affect her baby. After giving birth, she started collecting data and seeking out pregnant women with YOPD to put together her own research.
Finding a supportive community is crucial in finding answers and learning more about this degenerative disease, the fastest-growing neurological condition in the world, with not a lot of research or information on it.
Since I don’t know anyone else with YOPD, I’ve turned to Facebook groups. The Parkinson’s Fight Club has a great, positive vibe, while StrongHER provides the female perspectives I appreciate; however, both are Western in origin. Unfortunately, two of the local ones I’m part of are senior-heavy with content I cannot relate to, and I got hit up for money by a member via Messenger as soon as I joined. For now, we make do with what we’ve got.