At the Minnesota Spring Parkinson’s Symposium on April 10, 2026, movement disorder specialist Dr. Paul Tuite and pharmacist Natalie Heinrich, PharmD from M Health Fairview in Minneapolis, Minnesota — walked through common myths and misconceptions about Parkinson’s disease. The event was co-hosted by the APDA Minnesota Chapter, the Parkinson’s Foundation Minnesota and Dakotas Chapter, and the University of Minnesota Medical School.
Key Takeaways
Symptoms fluctuate — one snapshot doesn’t tell the whole story. Symptoms vary throughout the day in relation to medication timing. Tracking when symptoms occur and sharing that log with your care team is one of the most useful things a person with PD or a care partner can do.
Levodopa remains the gold standard — and can work for decades. The common belief that levodopa stops working after a few years is a misconception. What changes over time is the disease itself, not the medication’s effectiveness. There are many formulations available; working with your care team to find the right one matters.
Supplements are not automatically safe. The FDA does not regulate supplements. Always tell your care team what you are taking, and look for the USP verification symbol on bottles. Ask your provider about the FDA’s recent warning linking carbidopa/levodopa to lower vitamin B6 levels. Bone loss and osteoporosis are underdiagnosed in people with PD — a bone density scan every two years and discussion with your provider about calcium, vitamin D, and bone-strengthening medications is recommended.
Sudden worsening of symptoms usually has a cause — look for it. Abrupt changes in PD symptoms are not typical disease progression. Infections, stress, poor sleep, and constipation are common culprits. Contact your care team promptly if this happens.
DBS is not a last resort. Deep brain stimulation is an option at earlier stages of PD and should be part of the conversation with your neurology team — not treated as a final option when all else fails.
Medication costs can often be reduced — know your options. Medicare Part D caps out-of-pocket prescription costs at $2,100 per year. Co-pay assistance foundations, Cost Plus Drugs, and GoodRx can all help reduce costs further.
Resources
Cost Plus Drugs — low-cost generic medications online: https://costplusdrugs.com
PAN Foundation — co-pay assistance: https://www.panfoundation.org
The Assistance Fund — co-pay assistance: https://tafcares.org
HealthWell Foundation — co-pay assistance: https://www.healthwellfoundation.org
A recent FDA warning about carbidopa/levodopa lowering vitamin B6 levels in the body was mentioned in the presentation. Here is an article on the APDA website about the FDA warning: https://www.apdaparkinson.org/article/fdas-new-warning-link-of-carbidopa-levodopa-to-vitamin-b6-deficiency-and-seizures/
A recording of this event is available through the ADPA Minnesota Chapter Vimeo
Keep reading for detailed notes,
— Elizabeth
Myths and Misconceptions of Parkinson’s Disease
Speakers: Paul Tuite, MD, movement disorder specialist, and Natalie Heinrich, PharmD, M Health Fairview, Minneapolis, Minnesota
Webinar Hosts:
- American Parkinson Disease Association (APDA), Minnesota Chapter
- Parkinson’s Foundation, Minnesota and Dakotas Chapter
- University of Minnesota Medical School
Event Date: April 10, 2026
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Misconception 1: Parkinson’s Is Only a Motor Condition
Parkinson’s disease is commonly associated with tremor, stiffness, and slowness — but not everyone with PD has tremor (approximately 75% have tremor). Beyond motor symptoms, PD involves a wide range of non-motor symptoms that are equally important to address. These include constipation, sleep disorders, hallucinations, orthostatic hypotension (low blood pressure upon standing), cognitive changes, and more. When visiting your care team member, non-motor symptoms deserve attention and discussion. If your care team is not asking about them, bring them up.
Exercise plays a critical role in managing PD symptoms. Programs such as Rock Steady Boxing can provide both physical benefit and social connection, and are a valuable complement to physical, occupational, and speech therapy.
Misconception 2: You Can Judge How Severe Someone’s Parkinson’s Is from a Single Visit
Parkinson’s symptoms fluctuate significantly. A single snapshot in time does not give the full picture of a person’s experience. People move through on and off periods as medications kick in and wear off, and dyskinesias (involuntary movements) can occur as a side effect of medication — sometimes noticed more by caregivers than by the person with PD. Tracking when symptoms occur throughout the day in relation to medication timing, and sharing this information with your care team, is extremely valuable. Some people also have simply bad days that do not correlate clearly with medication cycles.
Misconception 3: Parkinson’s Only Affects Older People
While the typical age of onset is 58–60, Parkinson’s affects people of all ages, genders, and ethnicities. People in their 20s can develop PD, often in genetic forms. People in their 70s and 80s can also be newly diagnosed. Because PD presents differently in every individual, it is important not to assume that what you read about the disease will apply exactly to your own experience. Age at onset and other health conditions such as arthritis or spinal stenosis can all affect how symptoms are managed.
Misconception 4: Levodopa Stops Working After a Few Years
Levodopa remains the gold standard treatment for Parkinson’s disease — the most effective medication available for managing symptoms and improving quality of life. It can continue to work for many decades. What often changes over time is not the medication’s effectiveness but the disease itself, which progresses gradually and may require higher doses or different formulations to address new or changing symptoms.
Medication is generally recommended when symptoms begin to affect quality of life, including the ability to exercise. There are now many formulations of levodopa available beyond the traditional yellow pill, including capsules, extended-release forms, and pump-based delivery systems.
Working with your care team to optimize your medication regimen is an ongoing and evolving process. Other medications such as COMT inhibitors (entacapone) and MAO-B inhibitors (rasagiline) can augment levodopa and have been available for decades — discussing when and whether to add these is an important conversation with your neurologist.
Misconception 5: We Can Predict How Parkinson’s Will Progress
Predicting the future course of Parkinson’s disease is not possible. Many factors may influence progression — including diet, gut health, sleep, exercise, and genetics — and research in areas such as the gut-brain connection, sleep enhancement, and environmental exposures (including pesticides like paraquat) is ongoing.
The most practical approach is to focus on what is affecting you today, address current symptoms with your care team, and plan ahead where possible without assuming a fixed trajectory. Living each day fully while taking reasonable steps to plan for the future is the recommended approach.
Misconception 6: Sudden Worsening of Symptoms Means Parkinson’s Is Progressing
Significant sudden changes in PD symptoms are not typical of disease progression. When symptoms worsen abruptly, there is usually a cause to identify. Common culprits include urinary tract infections or other infections, grief and emotional stress, several consecutive nights of poor sleep, constipation (which can impair medication and nutrient absorption), and other acute stressors. If you or your loved one experiences a sudden notable change, contact your primary care provider or neurologist promptly.
It is also worth noting that bone loss and osteoporosis are underdiagnosed in people with PD — a bone density scan every two years and discussion with your provider about calcium, vitamin D, and bone-strengthening medications is recommended.
Sleep disorders — including fragmented sleep and undiagnosed sleep apnea — are also very common in PD and can cause excessive daytime sleepiness.
Low blood pressure (orthostatic hypotension) upon standing is another important non-motor consideration that is managed differently than typical high blood pressure.
Misconception 7: Supplements and Vitamins Are Safe Because They Are Over the Counter
Supplements are not regulated or approved by the FDA. The claims on packaging have not necessarily been tested in clinical trials, and manufacturing oversight varies widely. Many supplements have side effects and can interact with prescription medications. Always tell your care team about every supplement you are taking — not to be told to stop, but so risks and benefits can be discussed.
Look for the USP verification symbol on supplement bottles, as this indicates some manufacturing oversight. Brands such as Nature Made® and Kirkland (Costco) often carry this symbol.
Vitamin D supplementation is recommended for people living in northern climates. Regarding B vitamins: the FDA recently added a warning that carbidopa/levodopa may lower vitamin B6 levels in the body, with some cases of seizures reported in people with very low B6. Ask your provider whether checking your B6 and B12 levels makes sense for you — it is a simple blood test. Note that too much vitamin B6 can also be toxic, so supplementing without guidance is not recommended. On average, vitamin D supplementation of 1,000–2,000 units per day is reasonable; specific B vitamin dosing should be based on blood work.
Probiotics are an area of active research in PD. Current evidence supports their use for constipation, and there is emerging interest in whether modifying gut bacteria may benefit the brain through the gut-brain connection.
Melatonin is sometimes used for sleep in PD. If you use it, be aware that the amount in the product may not match the label, and high doses (such as 20mg) are generally too high — lower doses are more appropriate and should be discussed with your provider.
Misconception 8: Hallucinations Should Be Ignored or Are Too Embarrassing to Mention
Hallucinations are quite common in PD and exist on a spectrum. Milder forms may look like illusions — a tree that appears to be a person, or an object that takes the shape of an animal. More formed visual hallucinations may involve seeing a person in the room who is not there. Both types can be either part of the disease itself or a side effect of Parkinson’s medications. There are effective treatments available.
REM sleep behavior disorder — acting out dreams during sleep — is distinct from hallucinations and also warrants discussion. Please bring any of these experiences up with your care team. The sooner they are addressed, the better.
Misconception 9: Deep Brain Stimulation Is a Last Resort
DBS is not only for people with advanced Parkinson’s. Research is currently underway — including a study led by Vanderbilt University Medical Center — exploring whether early DBS may reduce or delay the need for medication and potentially modify the course of the disease. For some people, DBS may also be appropriate earlier in the disease to address specific symptoms such as tremor. DBS carries risks and is not right for everyone, but it deserves to be part of the conversation with your neurology team rather than treated as a last option.
Misconception 10: All Parkinson’s Medications Are Too Expensive
Medication costs are highly variable depending on insurance plan, pharmacy, and days’ supply. Under Medicare Part D, there is an out-of-pocket maximum of $2,100 per year for all prescriptions combined — once you reach that threshold, your cost goes to zero for the rest of the year. A payment plan option allows you to spread that $2,100 over the year. Several foundations offer co-pay assistance specifically for people with Parkinson’s:
- PAN Foundation: https://www.panfoundation.org
- The Assistance Fund: https://tafcares.org
- HealthWell Foundation: https://www.healthwellfoundation.org
For generic medications, Cost Plus Drugs (https://costplusdrugs.com) and GoodRx coupons (usable at most local pharmacies) can sometimes be cheaper than using insurance.
Question and Answer
Q: What dosage of vitamin D and vitamin B complex should we be taking?
A: Dosage depends on blood work results. For vitamin D, 1,000–2,000 units per day is a reasonable general recommendation, but if your levels are very low, your provider may recommend a higher therapeutic dose temporarily. For B vitamins, a standard over-the-counter B complex does not have a specific required dosage. However, if you are deficient in a specific B vitamin such as B6, your provider may prescribe a targeted dose (e.g., 25–50mg of B6 daily). Importantly, too much vitamin B6 can be toxic, so do not supplement without guidance. Ask your provider for a blood test to determine what you actually need.