RANCHO CUCAMONGA, Calif. — For four decades, U Kyi Wong was defined by his sharp intellect and unyielding persistence. A Burmese schoolteacher fluent in English, Burmese, and Mandarin, he was a man who built his life on communication and activity.
But in 2006, Wong noticed a slight tremor in his hands. Before a doctor could even speak the words, Wong, ever the scholar, had already researched his symptoms and self-diagnosed: Parkinson’s Disease (PD).
Now 86, Wong’s nearly 20-year journey with the neurodegenerative disorder highlights the challenges associated with current treatments and the promise of emerging therapies.
While the medical community has mastered the art of restoring movement through dopamine replacement through drugs like levodopa — considered the “gold standard” for treating Parkinson’s — the long-term cost of that restoration often includes a fracturing of the patient’s physical and mental reality, what has come to be known as the “Levodopa Paradox.”
Hallucinations ‘were the worst’
As the U.S. population ages, Parkinson’s is emerging as among the fastest growing neurological disorders. More than 1 million people currently suffer from the disease, according to the Parkinson’s Foundation. That number is expected to double by 2040.
Parkinson’s is caused by the loss of dopamine-producing neurons in the brain. For the first decade, Wong’s condition was manageable through a low-dose regimen of levodopa and a strict daily exercise routine. However, as the disease progressed, the physical weakness was joined by a more invisible and terrifying enemy: visual hallucinations and dementia.
“As my father’s condition worsened, the doctor increased his medication doses,” explains his daughter, Ma San San Tint. “Of all the side effects, the hallucinations were the worst. It had a massive impact on him and our entire family.”
The hallucinations were vivid and dangerous. In 2018, Wong wandered into a rainstorm without shoes, convinced people were calling him from the street. Later that year, he believed his granddaughter — who was miles away at university — was at the front door. He walked out to meet her and was locked out in the cold for hours.
The strain of these episodes forced San San Tint to make a heartbreaking choice: she closed her popular restaurant, Cetanamon, in El Monte, about 30 miles west, to become his full-time caregiver. “Most caregivers would quit after a week,” she says. “My biggest fear was him wandering onto the freeway.”
Distinguishing side effects from the disease
According to geriatricians, the Wong family’s experience is a common hurdle in advanced Parkinson’s.
“It is vital to determine if hallucinations are a side effect of the medication or caused by the disease itself,” says Dr. Aung Naing Min, a geriatrician at Kaiser Permanente, San Diego. He explains that while levodopa helps regulate Parkinson’s related tremors by reaching the brain, an excess of these chemical reactions can trigger psychosis.
Dr. Mya Aye, an Internal Medicine specialist at Kaiser Permanente Downey Medical Center, adds a critical warning for families: “Patients must not stop their medications on their own if hallucinations occur. Stopping abruptly makes it very difficult to restart treatment effectively later, which can cause motor symptoms to worsen significantly.”
Emerging treatments
The primary challenge with traditional pills is the “on-off” fluctuation — the medication peaks and then wears off, leaving the patient “frozen.” Recent developments to combat this have revolutionized how dopamine is delivered.
One breakthrough involves a 24-hour continuous subcutaneous infusion of levodopa, recently approved by the FDA as VYALEV.
“There is a new way to manage Parkinson’s using a pump, much like an insulin pump for diabetes, to receive medicine continuously under the skin,” says Dr. Min. By maintaining a steady level of dopamine, patients can avoid the “spikes” that trigger hallucinations and the “dips” that cause rigidity.
Recent clinical trials in Europe and the U.S. (Michael J. Fox Foundation, 2024) confirm this method is safe and effective for patients who have exhausted oral options.
The cost, however, can be steep. Because it requires a wearable pump, insurers categorize VYALEV as both a specialty drug and as Durable Medical Equipment (DME).
While Medicare Part B provides a pathway for those who meet “medical necessity” (significant symptoms despite oral meds), the treatment’s long-term outlook is also clouded by passage of the “Big Beautiful Bill” (HR1), which significantly cut healthcare funding and restricted Medicare’s ability to negotiate prices for certain high-cost drugs.
Patients without coverage can expect to pay upwards of $2500 per week for the treatment.
For sudden “OFF” episodes where a patient loses the ability to move unexpectedly, the FDA-approved Inbrija (levodopa inhalation powder) acts as a rescue treatment.
“The inhaler is not a replacement for daily pills; it is a rescue,” notes Dr. Min. Because it is inhaled into the lungs, it reaches the bloodstream in 10–30 minutes, bypassing the digestive issues that often slow down oral pills.
Inbrija is typically covered under Medicare Part D, which in 2026 features a $2,000 annual out-of-pocket cap—a vital safety net for patients managing multiple prescriptions. However, HR1 has also raised questions about the future of such caps and federal subsidies for high-tier “Preferred Brand” medications such as Inbrija.
For those with commercial insurance, manufacturer copay programs can reduce costs to $0, while qualifying uninsured patients may access the drug through assistance programs. Without coverage, the “sticker price” is approximately $1,300 for 30 doses.
While not widely available, these treatments are typically prescribed at major specialized centers such as UCLA Health, Cedars-Sinai, and Keck Medicine of USC.
A holistic approach
While medication is the primary treatment for Parkinson’s, recent research in The Lancet emphasizes that a multidisciplinary approach is now essential. As the disease advances, motor complications often become resistant to standard drugs. In these cases, invasive therapies such as Deep Brain Stimulation (DBS) or ablative neurosurgery (like focused ultrasound) become critical options to stabilize movement and restore quality of life when traditional pills no longer provide consistent relief.
There is also emerging evidence around the role of tyrosine-rich foods (chicken, dairy, avocados, and pumpkin seeds) and the Mediterranean diet in preserving cognitive health. Tyrosine is a naturally recurring amino acid that helps regulate neurotransmitters like dopamine, among other functions.
There is also new research from China’s Sun Yat-sen University, which is investigating “precision delivery” systems and Low-Intensity Focused Ultrasound (LIFU) to safely open the blood-brain barrier, allowing neuroprotective agents to reach vulnerable brain regions without systemic side effects.
For the Wong family, adjusting U Kyi’s treatment to include medications like Nuplazid and Seroquel — used to treat Parkinson’s related psychosis — alongside a reduced levodopa dose has significantly decreased his hallucinations.
Though the physical struggles remain, the “teacher” is once again present in his own home.
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SweSwe Aye is a reporter with the Myanmar Gazette. This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and The Silver Century Foundation.
