By Michael S. Okun, MD, Medical Director of the National Parkinson Foundation
This year, more than 50,000 people worldwide will hear four simple words: “You have Parkinson’s disease.”
Once the shock subsides, four new words will dominate their thoughts: “Is there a cure?” Today, the answer is no; however, with advancements in early detection and expert care, treatments are helping many people live long and happy lives with Parkinson’s. Research has shown that seeing a neurologist improves outcomes, and seeing a movement disorders specialist can speed improvement in symptoms.
What Is – and Isn’t – Parkinson’s Disease?
I am often asked if Parkinson’s Disease (PD) is a form of Alzheimer’s. Parkinson’s is not Alzheimer’s, ALS or a brain tumor, and the prognosis for Parkinson’s, though not a perfect scenario, leaves room to live a productive life.
PD is a progressive and chronic neurological disease that often begins with mild symptoms that advance gradually over time. Symptoms can be so subtle in the early stages that they go unnoticed, leaving the disease undiagnosed for years. For patients with Parkinson’s, there is a reduction in the body chemical dopamine, which controls movement and mood – so simple activities like walking, talking and writing can be impacted.
Due to the complexity of PD, diagnosis is based on a variety of factors. The best diagnosis is made by an expert doing a careful history and exam followed by tracking responses to therapy. There is no blood or laboratory test to diagnose Parkinson’s disease.
While Parkinson’s reaches all demographics, the majority of people with PD are age 60 or older. Men and people with a family history of the disease have an increased risk.
12 Early Warning Signs of Parkinson’s Disease
There is no one defining symptom or sign of Parkinson’s, but rather a combination of warning signs and symptoms. Not all of the signs and symptoms are present in every patient with PD, and this sometimes leads to confusion in diagnosis. Talk to your doctor if you or someone you know experiences more than one of the symptoms outlined below. Family and friends may be the first to spot the signs.
Tremor or shaking: An incessant or intermittent shaking in your finger, thumb, hand, chin, body, leg, lips or tongue could indicate Parkinson’s. The tremor usually happens at rest, and when you move the extremity it may disappear. One in five patients with PD may not have a tremor, which is an important reason the diagnosis may be missed.
Changes in handwriting: You may notice the way you write words on a page has changed, and particularly that your letter sizes are smaller and the words may be crowded together.
Loss of smell: Some research suggests that loss of smell is one of the earliest warning signs of Parkinson’s and other cognitive disorders, appearing years before the onset of the motor and cognitive symptoms.
Trouble sleeping: Sudden and extreme movements during sleep – kicking and punching – or falling out of bed can be indicate PD. Patients with Parkinson’s often report vivid dreaming or acting out their dreams; in many cases these symptoms may predate the diagnosis.
Muscle tension: Some people with Parkinson’s may notice tightness in a wrist, elbow, hip or knee (rigidity). This uncontrolled tightness may cause mild to severe aches or pains and make it difficult to move around.
Changes in walking: Parkinson’s affects the area of your brain that controls movement. If you walk with short, shuffling steps, don’t swing your arms or have trouble starting, stopping and turning, talk to your doctor about PD.
Constipation: Constipation is a sign that may predate the other motor symptoms like tremor and rigidity in people with Parkinson’s.
A quiet voice: If friends and family are always asking you to speak up even though you feel like you are talking in a normal voice, you may be experiencing the Parkinson’s disease symptom of a muffled or soft voice – called hypophonia. PD patients are often unaware they are speaking softly.
Masked face: Masking is a term we use to describe facial expressions that appear muted and flat even though the person may be content. Many patients don’t realize masking is happening until someone points it out. If people say you often look unhappy, have a blank stare, or do not blink your eyes, talk to your doctor.
Dizziness or fainting: Feeling dizzy or fainting on a regular basis can be signs of low blood pressure linked to Parkinson’s or to PD medications.
Stooping or hunching over: Stooping, leaning or slouching when you stand can all be symptoms of Parkinson’s.
Depression or anxiety: Depression is the biggest unmet Parkinson’s disease need. With PD, depressive symptoms can be mild and missed easily.
What If You Have Parkinson’s?
After Parkinson’s is diagnosed, your doctor will help you develop an individualized plan to address the symptoms that have the biggest impact on your everyday life and help slow down the progression of the disease. The first step is getting a referral to a neurologist for expert care – especially one who is trained in movement disorders.
Why Is Expert Care Important?
Early expert care can help reduce PD complications. Findings show that 60 percent of people with Parkinson’s fall short of getting the expert care they need. The National Parkinson Foundation has estimated that about 6,400 people with Parkinson’s die unnecessarily each year due to poor care.
Trained neurologists will help you recognize, treat and manage the disease. Common approaches include medication, surgical treatment, lifestyle modifications (such as rest and exercise), physical therapy, support groups, occupational therapy and speech therapy. The best approach is interdisciplinary care, where you are seen by multiple specialists on a regular basis and all of the specialists talk and arrange the best possible coordinated care. This is what is referred to as a patient-centric approach to Parkinson’s care.
Arming yourself with knowledge and expert care are the best methods of facing Parkinson’s disease.
Michael S. Okun, MD, is the National Medical Director of the National Parkinson Foundation and co-director of the Center for Movement Disorders and Neurorestoration, part of the McKnight Brain Institute and the University of Florida College of Medicine. He is the author of Amazon’s No. 1 Parkinson’s Best Seller 10 Secrets to a Happier Life. As NPF’s medical director, he has worked with NPF Centers to help foster the best possible environments for care, research and outreach in Parkinson’s disease. Dr. Okun has published more than 300 articles and is considered a world’s expert on Parkinson’s disease, movement disorders and deep brain stimulation.