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Dopaminergic Medication Hesitancy in Parkinson's Disease

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Living with Parkinson’s disease (PD) can feel overwhelming, especially when it comes to decisions about medication. Many people hesitate to start dopaminergic drugs like carbidopa/levodopa (Sinemet), worry about side effects, or try to minimize doses. Some even delay treatment, thinking it won’t make much difference or will “use up” the medication’s effectiveness.


From my experience, this common hesitation often leads to a sedentary lifestyle and a decline in quality of life. But the truth is: with the right treatment and approach, people with Parkinson’s can live vibrant, active lives.


So I wanted to share some insights to help people with Parkinson’s disease make informed decisions about dopaminergic medications in partnership with their neurologist.



Why People Hesitate to Take Medication


When I speak with patients and caregivers, hesitation usually comes down to two main concerns:

1. Fear of Starting

  • Worry about becoming “dependent” on levodopa

  • Anxiety about side effects like dyskinesia (involuntary movements)

  • Concern that starting early reduces long-term benefit

2. Difficulty Adjusting or Continuing

  • Challenges with daily dose scheduling

  • Fear of dose increases

  • Confusion about “on” and “off” times, or symptom fluctuations


These concerns are valid, but they are often based on misconceptions about the medication



Understanding Parkinson’s and Dopamine


Parkinson’s disease symptoms arise primarily from a loss of dopamine in the brain, affecting movement, coordination, and non-motor functions.


The Science of Parkinson’s. (n.d.). [Diagram: The mechanism of Parkinson’s disease medications]. Retrieved December 5, 2025, from https://scienceofparkinsons.com/tag/sinemet/
The Science of Parkinson’s. (n.d.). [Diagram: The mechanism of Parkinson’s disease medications]. Retrieved December 5, 2025, from https://scienceofparkinsons.com/tag/sinemet/

Restoring dopamine is the most effective treatment strategy, especially in early and mid-stage PD. Dopaminergic medications help both motor and non-motor symptoms, improving walking, balance, tremor, stiffness, mood, and daily functioning.




Carbidopa/Levodopa: Your First-Line Treatment


Carbidopa/levodopa remains the cornerstone  for Parkinson’s treatment.


Benefits

  • Dramatically improves motor and non-motor symptoms

  • Provides stable symptom control in early years

  • Enables participation in exercise and daily activities


Myth: “Save Levodopa for Later”

Some believe delaying levodopa will preserve its effectiveness. The reality:

  • No evidence supports delaying treatment

  • Later fluctuations are caused by disease progression, not early medication use

  • Waiting can mean lost years of mobility and independence


When Delay Might Be Acceptable

  • Daily activities are not yet impacted

  • You can remain active and exercise

  • Overall quality of life is preserved


Exceptions: Levodopa might not work for Parkinsonism-plus disorders (e.g., progressive supranuclear palsy, multiple system atrophy) or in very elderly patients, where natural brain aging may reduce responsiveness.



Understanding “On” and “Off” Times


“On” Time


When the medication is working: 

✔ Symptoms are controlled 

✔ Movements are easier 

✔ Daily activities feel manageable


“Off” Time


When medication wears off: 

✔ Symptoms return 

✔ Rigidity, slowness, or tremor may increase 

✔ Walking and balance become more challenging


Tip: Track your on/off times in a journal. This helps your neurologist optimize dosing and timing.


Note on Freezing: Some patients may experience freezing of gait even while “on.” This indicates certain circuits controlling movement are still under-dosed. Reporting this helps your neurologist adjust your medications for better symptom control.



How Medication Response Changes Over Time


  • Early Years: Long-duration response — stable benefits lasting many hours.

  • Later Years: Short-duration response — benefits are tied to each dose, wearing off more quickly. Dyskinesias may appear. This reflects disease progression, not medication overuse.


Why This Happens


  • Early PD: enough dopamine terminals remain to regulate levels smoothly

  • Later PD: terminals are depleted, dopamine swings from too high to too low

  • Lewy body disease spreads beyond dopamine circuits, causing fluctuating response


Key Point: Delaying levodopa cannot prevent disease progression.



Why Medication Management Matters for Exercise


I’ve worked with people with Parkinson’s for several years, and I’ve seen how medication timing and effectiveness, especially with levodopa, is critical to being able to do Parkinson’s-specific exercise programs.


When symptoms like rigidity, slowness (bradykinesia), or tremor aren’t well controlled (“off” periods), it becomes much harder to perform the demanding, high-intensity movements that help improve strength, balance, and overall function.


This can create a cycle:

  • Uncontrolled symptoms → less movement → physical deconditioning → harder to exercise → fewer benefits → faster decline


Paying attention to your medication and symptoms can help you:

  • Participate fully in structured exercise programs

  • Maintain strength, balance, and independence

  • Experience the neuroprotective and symptom benefits of regular movement


💡 Tip: Properly timed medication and regular exercise work hand-in-hand to help you stay active and maintain quality of life.

Bottom Line

  • Levodopa helps in true Parkinson’s disease — starting early does not reduce its long-term effectiveness.

  • Changes in medication response are due to disease progression, not overuse.

  • Delaying medication does not preserve future benefit.

  • Staying active and exercising is more important than minimizing medication.

  • Regular communication with your neurologist is essential — they can help adjust timing and dosage for the best results.


Learn more about exercise programs for Parkinson’s: Congruence PT Parkinson’s Programv



References

  1. Ahlskog, J. E. (2011). Cheaper, simpler, and better: Tips for treating seniors with Parkinson disease. Mayo Clinic Proceedings, 86(12), 1211–1216. https://doi.org/10.4065/mcp.2011.0407

  2. Ahlskog, J. E. (2020). Common myths and misconceptions that sidetrack Parkinson disease treatment, to the detriment of patients. Mayo Clinic Proceedings, 95(10), 2225–2234. https://doi.org/10.1016/j.mayocp.2020.02.006

  3. Espay, A. J., Fasano, A., van Nuenen, B. F., et al. (2012). "On" state freezing of gait in Parkinson disease: A paradoxical levodopa-induced complication. Neurology, 78(7), 454–457. https://doi.org/10.1212/WNL.0b013e3182477ec0

  4. National Council on Aging. (2022, December 14). Medication management and Parkinson’s: What older adults need to know. https://www.ncoa.org/article/medication-management-and-parkinsons-what-older-adults-need-to-know/

  5. The Science of Parkinson’s. (n.d.). Mechanism of Parkinson’s disease medications. Retrieved December 5, 2025, from https://scienceofparkinsons.com/tag/sinemet/

 
 
 

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