A patient walks into the doctor’s office and says:
I hate feeling this way. Yes, I know it’s not cancer and it won’t kill me, but this shaking has made me a different person. I can’t sign my name. I drop and spill things all the time. I’m afraid to pick up my baby grandson. I don’t go out anymore because I’m embarrassed. And I don’t know what can be done. Do I have to live my life like this?
What could this patient be talking about? This question confounds clinicians, physicians, and specialists alike. Of course, it’s just anecdotal, a few sentences describing one person’s symptoms. But even after seeing a primary care physician, many patients like this one may leave without a clear diagnosis, left to return home unsure of what the future holds for them.
This patient, like millions of others, has essential tremor, uncontrollable shaking that progresses to the point that it can severely impact a person’s quality of life. Search the internet for essential tremor, and you’ll find hundreds of messages like this one — windows into the lives of people frustrated that they have had to give up their jobs, their hobbies, socializing and other aspects of their once active lifestyle. While they are suffering from a disorder that is not fatal, it strips away a person’s independence and joy for life, resulting in both financial and emotional costs.
In the U.S., an estimated 10 million people live with essential tremor, making it the most common movement disorder. However, I’m continually struck by the lack of awareness surrounding essential tremor. Many patients I meet with don’t know that their shaking hands is an actual medical condition. Surprisingly many physicians are also largely unfamiliar with the condition and consider tremor a natural part of growing older. Unfortunately, essential tremor can be also be misdiagnosed as something more severe.
In fact, several patients have admitted to me that their first thought was Parkinson’s when their hands started to shake. Parkinson’s disease is a neurodegenerative condition that often also presents with tremor as well as other symptoms. Patients may prefer to ignore their tremor or learn to live with it due to the fear of being diagnosed with a severe degenerative condition that could rob them of their muscle control as well as their cognitive abilities. This fear can also lead to avoiding consultation with a medical professional altogether, contributing to a sense of isolation and despair.
When tremor patients seek treatment, their first step is usually a visit to their primary care physician. General practitioners or physicians that do not specialize in movement disorders may also assume Parkinson’s disease. In reality, essential tremor is eight times more common than Parkinson’s disease. Education of physicians as well as the general public is an integral component of spreading awareness for medical conditions such as essential tremor.
As a neurosurgeon specializing in treating essential tremor, the following questions can help physicians make an initial assessment of their patient, potentially alleviate some of their fears, and ultimately determine whether they should be referred to a neurologist or movement disorder specialist for further diagnosis and treatment:
Does your tremor occur when your hands are at rest, or when performing a task? Essential tremor is characterized by action tremor, occurring during movement. Parkinson’s tremor is a rest tremor, present when no muscle is being used.
Do any of your family members have a tremor? There is evidence that ET is genetic. If the patient has a parent with essential tremor, they have a 50 percent chance of inheriting a gene that causes the condition. In contrast, fewer than 10 percent of Parkinson’s patients have a family history with the condition.
How does your tremor affect your handwriting? While large and shaky handwriting is a hallmark of essential tremor, slow and small handwriting is a symptom of Parkinson’s.
After a definitive diagnosis of essential tremor, you can share information about treatment options with patients. There are also support groups, which can be found through the International Essential Tremor Foundation or other organizations. These support groups provide patients the opportunity to learn strategies for living with tremor, and most importantly, gain a sense of community. There are also online groups that help show that a person is not alone in their experience.
Many people living with essential tremor report that their condition makes them dread going out in public. They feel as if others’ judgmental eyes are always on them, wondering what is wrong with them. Some patients relate stories of being asked why they are so nervous or if they have been drinking.
We should educate ourselves about essential tremor so that our patients have access to the most up-to-date information about treatment options to help steady their fears and their hands.
Travis Tierney is a neurosurgeon.
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