Parkinson's Myths And Facts

What a long strange trip Parkinson’s has been. Made stranger by far due to how little I knew about it and the misconceptions I had before I was diagnosed. Parkinson’s is great teacher. I learn new things every day. Seven years into it and I am still learning how to best take my meds correctly. Many of the biggest misconceptions about PD revolve around Levodopa (Sinemet in the US and Madopar in the EU) and other PD meds.

LEVODOPA AND PD MEDS: Levodopa is the most effective drug for treating PD physical motor symptoms. It does not stop working after a number of years. Levodopa does not become less effective with long term use. You need to take more because the symptoms progress and the disease gets worse. A friend with PD has been using Levodopa for 16 years.

Levodopa does not cause or increase PD symptoms or make them worse with long term use. Clinical trials have proven that PWP administered Levodopa were better off than those given a placebo. Results of conclusive studies can be found on the web.

Some people believe they should wait as long as possible between doses. Levodopa is most effective when taken before the previous dose wears off. If you wait too long the new dose may not kick in at all.

FACT: Levodopa competes with protein for absorption and so should be taken an hour and a half to two hours after eating and a half hour to an hour before eating. Levodopa does not treat all PD symptoms but it helps make many motor symptoms more livable.

TREMORS: Tremor is the most noticeable and best known symptom of Parkinson’s but it is a major misconception that everyone with PD has tremors. Only about 70% of PWP have tremors during the course of the disease. Be thankful if you are in the 30% who don’t. The reverse is also not true. Not all people with tremors have PD. There are many different kinds of tremors. Ten million people in the United States, for example, have essential tremors and one out of five people over the age of 65 shakes but doesn’t have PD.

FACT: 7 to 10 million people worldwide have PD. There are about 60,000 newly diagnosed cases each year in the US and about 18,000 in the UK.

SYMPTOMS: All PWP know that PD is not only a physical motor symptom disease. Many feel that the non motor symptoms are worse: depression, anxiety, apathy, sleep disorders, cognitive symptoms, constipation, bladder problems, sweating, sexual dysfunction, fatigue, pain, cramps, tingling, and lightheadedness.

FACT: No two PWP have the same exact symptoms that progress in the same way.

CAUSE: It is not true that genetics is the main cause of PD. Researchers estimate that less than 10% of cases are genetic. The cause is not fully known but environmental factors and a persons lifestyle are also important. Most researchers believe it is an interaction between genetic and environmental factors. That is, a person’s genetic makeup will determine the effect of an environmental exposure. Genetics make you a candidate for PD and environmental exposure triggers it.

PD PROGRESSION: Many people, when first diagnosed, believe the disease will stay the way it is and not get worse. PD always progresses and in time may become mentally and emotionally exhausting and physically debilitating. It seems to have a mind of it’s own and symptoms and intensity will vary from person to person and  day to day. Some days better and some worse.

WHAT YOU CAN DO: Some people think their life is over when diagnosed with PD. So much of how you fair with the disease is up to you. Fight back. Be an active participant with your doctor to get the best comprehensive treatment plan to improve your quality of life and suffer as little as possible. Learn all you can about the disease so you can make intelligent decisions. Exercise as much as possible. Exercise is believed to slow the progression of the disease and also helps you feel better. Be active and engaged with life. Get involved with the PD community. Your local PD community is a wealth of information and support. Be good to yourself.

Final fact: Were you diagnosed with Parkinson’s? You may not have it. Estimates of PD being misdiagnosed, especially in its early stages, range from 30% - 50% of the time. It goes both ways. Doctors may tell you that you have PD when you don’t or that you don’t have it when you do.