About Parkinson's diseaseSecond leading neurobiological disorder behind Alzheimer’s
Editor’s note: April is National Parkinson’s Awareness month. This article is intended to heighten public awareness.
“You have Parkinson’s disease.” Hearing these fateful words 13 years ago, I thought I was condemned to a life of drooling, stumbling about and instant insanity. Well, two out of three isn’t bad. So far, my sanity is intact.
After dealing with the five stages of grieving (denial, anger, bargaining, depression and, finally, acceptance) I realized I had better start doing my homework. What exactly is Parkinson’s disease?
Parkinson's disease is a progressive, degenerative disorder of the nervous system that erodes mobility and independence. It is the result of the loss of cells in the area of the brain that produces dopamine. Dopamine transmits messages from nerve to nerve to coordinate the body’s movements. Without enough dopamine, the cells fire randomly, making it difficult to coordinate movement. A person will lose 80 to 85 percent of dopamine-producing cells before the symptoms of Parkinson's become visible. No one is certain of the cause, but many think it results from exposure to toxins in the environment, or a brain infection or aging. Genetics may also be involved.
Every case is different. Some people have a variety of symptoms, others only a few. Several medications are available to manage the symptoms, but some have problematic side effects. A medication that works for one is useless for another. The disease progresses rapidly for some and not for others, but it always progresses. There is no such thing as a remission. Parkinson’s can, over time, affect a person’s ability to move, speak, swallow, breathe deeply and smell. Depression is common. People don’t die of Parkinson’s but they can die from complications, such as pneumonia, that can develop due to reduced ability to breathe deeply.
Parkinson's is a highly visible disease. Tremors, shaking, sluggish movements and rigid muscles are among the most common. When the facial muscles are affected it’s difficult to smile, laugh, wink or cry. In some, the face is expressionless, like a mask. Family and friends must learn to “read” the eyes to discern emotions and feelings. Many people with Parkinson’s experience uncontrollable shaking in their arms and legs. They walk haltingly, sometimes freezing. Those who experience this frightening symptom say that their legs suddenly stop moving and they feel like their feet are glued to the floor and that they will fall. A freezing episode may be brief or last for several minutes. In addition, symptoms may make it appear that the person can’t communicate, may be mentally challenged or impaired by drugs.
It is estimated that there are approximately 7,000 known cases of Parkinson’s in Maine.
There are many sources of information. Primary care physicians and neurologists may be familiar with clinical trials in the area. Most hospitals have a clinical research director. PDTrials.org is dedicated to all current clinical trials studying Parkinson’s. Many organizations (Parkinson’s Disease Foundation, Michael J Fox Foundation and American Parkinson’s Disease Association, among others) provide information on clinical trials. Graduates of the Clinical Research Learning Institute like me are up to date on clinical research.
Parkinson’s is the second leading neurobiological disorder behind Alzheimer’s. Approximately 60,000 new cases — in mostly men — of Parkinson’s are diagnosed annually; one every nine minutes. One out of every 250 over the age of 40, and one in every 100 over the age of 65, will find out they have Parkinson’s. Approximately 15 percent of new cases occur in people under 50, called young onset.
There is still no cure, no definitive cause, no diagnostic test. Sinemet is the most commonly prescribed medication because it is the most effective drug for Parkinson's, but it was developed and marketed more than 60 years ago. There is a need to accelerate the number of research studies in the pipeline. Each successful study takes 10 to 15 years to bring a new drug from inception to market. To do this, more people, those afflicted or not, must get involved in clinical research.
The purpose of a clinical trial is to find better ways to prevent, detect or treat a disease, or to improve care. As part of these studies, large numbers of human volunteers answer specific health questions, take a medication that is being tested, or try some other therapy, such as exercise. A clinical trial usually compares a new product or therapy to something else to see if it works as well or better. In some trials, a placebo is given to some of the participants. Comparison with a placebo can be the fastest and surest way to show the effectiveness of a new product. However, a placebo is not used when a participant would be at risk.
Clinical trials are conducted according to a plan called a protocol. The protocol sets out who and how many people will be studied, requirements of participants, schedules, procedures, which drug or therapy is being tested, the dosage of medication and length of study.
There are four phases to most clinical trials. Phase I involves 15 to 30 people. The purpose is to evaluate safety, determine the dosage and identify side effects.
Phase II involves up to 100 people. The purpose is to determine effectiveness and to further evaluate safety.
Phase III involves from 100 to thousands. The purpose is to confirm effectiveness, monitor side effects, compare the potential or studied treatment to current treatments, and collect information on using the treatment safely.
Phase IV involves several hundred to several thousand. The purpose is to conduct post-marketing studies to determine more information about a treatment, including risks and benefit and optimal use.
Unfortunately, it is estimated that only 1 percent of those with Parkinson's disease get involved in clinical trials. Considering that more than a million people in the U.S. have Parkinson’s, this is a miniscule number.
Last fall, I was accepted into the Parkinson’s Disease Foundation’s Clinical Research Learning Institute. During an intensive three-day program, medical experts from the National Institutes of Health and other institutions, clinical researchers and health professionals presented the latest scientific findings in the search for the causes of Parkinson’s, and in the development of medications and other treatments. Other faculty members explained how clinical trials are designed, their sponsors, and the measures that are taken to insure the safety of each participant. It was an incredible learning experience.
Now I’m one of 100, and the only one in Maine, who has been designated an advocate for Parkinson’s research. Our task is to help find volunteers, those who have Parkinson’s and those who don’t, to participate in studies being conducted by all researchers and all drug companies.
As a new advocate, I’m dedicating myself to bringing current and accurate information to as many people as I can and to help dispel fears.
Gordon Guist lives in Camden.