Myths About Parkinson's

Many symptoms of PD are unrelated to movement. Non-movement symptoms (the ones you cannot see) of PD are common and may affect everyday life more than movement difficulties. These may include impaired sense of smell, sleep disorders, cognitive symptoms, constipation, anxiety, depression, bladder symptoms, sweating, sexual dysfunction, fatigue, pain (particularly in a limb), tingling and others.

TIP: Good news: many non-motor symptoms of PD are highly treatable. Write down all your symptoms and discuss them with your doctors to find treatments that work for you.

PD symptoms fluctuate, and not all of them are visible. Over time, people with PD notice an increasing tendency for their medications to wear off between doses. For this reason, the way that they appear at one moment may not reflect the way that they feel most of the time. Non-motor symptoms can also impact daily life.

TIP: Keep a symptom diary. If your symptoms fluctuate during the day, then you should keep track of your pattern of "on" times (when your medications work effectively) and "off" times (when medications wear off). This enables your doctor to optimize your medications and help you feel more in control.

Certain symptoms should never be attributed to PD. Fever, for example, is not a symptom of PD, and usually indicates an infection. Headache, vision loss, loss of sensation, loss of muscle strength and chest pain are not symptoms of PD.

TIP: Your doctors should rule out other causes for your symptoms. Sudden-onset symptoms — such as chest pain, shortness of breath, weakness — warrant immediate medical attention to rule out an emergency.

Parkinson’s does not work this way. Although symptoms may fluctuate throughout the day, the progression of PD is very slow. If PD symptoms worsen over days or weeks, then it is critical to search for an underlying cause. Medication changes, infection, dehydration, sleep deprivation, recent surgery, stress, or other medical problems can worsen PD symptoms. Urinary tract infections (even without bladder symptoms) are a particularly common cause.

TIP: Certain medications can worsen PD symptoms. These include antipsychotics, valproic acid (Depakote®), lithium, and nausea medications such as prochlorperazine (Compazine®), metoclopramide (Reglan®) and promethazine (Phenergan®). Speak with your neurologist before starting one of these medications, to see if there is a better alternative.

Levodopa works for decades. Levodopa does not treat all the symptoms of PD, but it dramatically helps the most disabling motor symptoms.

TIP: Levodopa has been shown to improve quality of life.

Levodopa is most effective when taken on time, just before the previous dose wears off. If you wait too long, then the next dose may never "kick in," and the medications may not work effectively for the rest of the day.

TIP: A medication timer can help. It is critical to take your doses exactly on time.

The color of carbidopa/levodopa tablets is relatively consistent between brands. If the color of your tablets changes for no apparent reason, then it is important to verify that you are still receiving the correct dosage.

TIP: The most described dosage of carbidopa/levodopa — 25/100 mg immediate-release tablets — is always yellow in color, regardless of the brand. If you are supposed to take this dose, and your pills are not yellow, an error has occurred.

PD is highly variable from person to person. Even a PD expert has no way of knowing what the future holds for an individual with PD.

TIP: You can help change your future. You can improve your disease at every stage by ensuring that you exercise and receive adequate sleep and proper nutrition. Exercise is particularly important for improving mobility, stamina, mood and quality of life.