With the start of 2015 NPFM is launching a new initiative, addressing issues surrounding Parkinson’s disease. The articles and videos used during the year-long campaign will open a conversation about the disease and its affects on individuals and families living with PD.
Each month will feature a new topic. If you have an issue you would like to see addressed, please contact our office.
For the month of January NPFM will focus on early symptoms and diagnosis.
We have two features this month: a video regarding the topic from our partnership with TPT in 2014 and a written piece from Dr. Martha Nance of the Struther’s Parkinson’s Center in Golden Valley.
EARLY SYMPTOMS AND DIAGNOSIS
By Dr. Martha Nance
The four “cardinal features” of Parkinson’s disease that lead doctors to make the diagnosis are:
Slowness or smallness of movement
Stiffness of the limbs
Changes in posture, gait, and balance
An occasional person might use exactly these words to describe the symptoms that they have noticed, but some may use a variety of other words, or notice more specific or different symptoms.
“Tremor” refers to rhythmic, repetitive movements, often in the finger, hand, or arm, and often just on one side. Some people may use the word “shaky” or “shakiness”. Some people can make the tremor go away by clenching the fist or moving the hand to a different position. The typical tremor of Parkinson’s disease is most noticeable at rest (a “resting tremor”) and improves or goes away with activity. Tremor can involve the chin or mouth or the leg, less often the trunk or neck.
“Slowness” and “smallness” of movements may manifest as slower walking, a shortening of the stride length (“shuffling gait”), or slowness doing usual activities like dressing or preparing meals. Smallness of movements in the hands may lead to small handwriting, inaccuracy or slowness of keyboarding, sewing, playing the piano, or other hand activities that require a high degree of coordination. If movements of the tongue and lips and throat are slow or small, the voice may become quiet, raspy, slurred, or stammering in nature. Family members and friends may notice a lack of facial expression or slowed blink rate.
“Stiffness” may present as cramping, tightness, charley horses, or aching—often in the same limb or limbs that have tremor or smallness of movement. The hand or arm may be held in a stiff posture when a person is walking. It can be hard to separate the stiffness due to Parkinson’s disease from stiffness due to arthritis or other causes. Stiffness occasionally results in pain.
Changes in posture and gait are often more noticeable to the viewer than to the person who has the problem. Family members may repeatedly urge the person to “stand up straight” or “quit slouching” or “hurry up”. A stooped or forward-leaning posture, shortened stride length or arm swing, and reduced confidence about a person’s balance are common.
In addition to these core symptoms, people with Parkinson’s disease may experience—or may have experienced—a host of other symptoms in the years leading up to the diagnosis of Parkinson’s disease. Constipation, loss of sense of smell, changes in mood, and a variety of disturbances of sleep are common and may begin years (possibly decades!) before the motor symptoms start. Of course, there are many other causes of constipation, loss of smell, mood and sleep disturbance that have nothing to do with Parkinson’s disease. Therefore, doctors do not make a diagnosis of Parkinson’s disease until the motor symptoms are present.
So, how does a doctor diagnose Parkinson’s disease? Usually just by recognizing those core motor features. The more of the features a person has, the more confident the doctor is about the diagnosis. If only one or two features are present, the doctor may be reluctant to call it Parkinson’s disease. If there are additional or atypical symptoms (prominent changes in thinking or memory right away, hallucinations, falling as an early symptom, and abrupt onset of symptoms are some atypical symptoms), the doctor may suspect a variant of Parkinson’s disease rather than the usual condition we described above. If the doctor is unsure whether a person has Parkinson’s disease or not, he may ask the patient to return in a few weeks or months for a second neurological exam.
Researchers are working to develop a “test for Parkinson’s disease”, but that hasn’t quite happened yet. The FDA has approved a kind of brain scan called a DAT Scan (different from a CT scan or MRI scan), which measures the availability of dopamine in the brain, but the test is expensive (and may not be covered by insurance), not necessary in clearcut cases of obvious Parkinson’s disease, and hard to interpret in cases that are unusual or atypical. If your doctor has ordered a DAT scan, check to make sure your insurance will cover the cost of the test!
Depending on the situation, the doctor may order a regular brain imaging test (CT or MRI), to rule out other things that can cause symptoms similar to Parkinson’s disease, or do blood tests to look for other medical conditions that can cause stiffness, tremor, or pain.
For many years, doctors have said that “the best test for Parkinson’s disease is to see how well the person’s symptoms respond to levodopa.” In a sense, taking a levodopa pill determines just about the same thing that a DAT scan measures—the need for more dopamine in the brain—but in a way that is often quite obvious to the person with Parkinson’s disease, the family, and the physician. You should discuss with your doctor whether you should take levodopa, or any other Parkinson medication.
The time of diagnosis is a difficult time for a person with Parkinson’s disease. If the diagnosis comes as a surprise, it is difficult. If the diagnosis is slow in coming, or different doctors disagree about the diagnosis, that is equally difficult. Make sure that your doctor has told you what you need to know about the diagnosis, any medications that you might receive, and any rehabilitation therapy that has been recommended. Seek out accurate information, as available through the National Parkinson Foundation pamphlets and books. And don’t be afraid to ask questions! There is life after a diagnosis of Parkinson’s disease!
For more about Parkinson’s disease, early symptoms and useful information visit the national website: www.parkinson.org.