“It can’t be Parkinson’s disease. You’re too young.”
With these words begins an epic journey in a quest for answers to the vexing question, “Could this be Parkinson’s?” One is most likely to hear this response from the family doctor but other physicians are often just as likely to utter the too-young-for-PD refrain when you work up the courage to ask “Could this be Parkinson’s?”
Why is this answer so common?
It is possible to argue that lack of exposure and experience are a substantial part of the problem. I have found figures suggesting about a million Americans have PD. I have also found data indicating between 5 and 10% of all PD cases are under age 50, the working definition for young onset Parkinsons. That means that there are between 50,000 and 100,000 young adults who have or will walk into their doctor’s office and ask “Could this be Parkinson’s.” If you take the 2010 U.S. census figures and extrapolate them, roughly half of the population fall in the age range for young onset PD (about 150,000,000). Consider then that 99.93% of this group does not have the diagnosis. Considering this low base rate for young onset PD, a doctor would be correct far more often than he or she would be wrong if they utter the no-PD refrain. Unfortunately, in any busy medical practice, the likelihood of any given individual having YOPD is so low, doctors might be more prone to play the odds.
It is the doctor’s job to diagnose as accurately as possible, however. This is done with mental decision trees that branch in specific directions based on the presence or absence of identified symptoms. Diagnosis is thus highly dependent upon familiarity with the typical presentation of a disease. If a doctor doesn’t see a lot of a particular condition, making a diagnosis can be more challenging. Diagnosis is further complicated by the fact that PD, as is the case with many neurological disorders, is a “rule out” disease. Symptoms can be somewhat vague and are often common with other conditions. For example, as a physician works down a mental decision tree, while treating a younger person with stiff muscles strains, tears, emotional stress, or poor ergonomics logically considered first. No one would be too happy if a diagnosis for PD was thrown in this mix prematurely. This means that arriving at the correct diagnosis can be a lengthy process.
Waiting to receive a correct diagnosis of PD can be as trying as actually being told one has the disease. When age becomes a factor in this delay, it can be very frustrating. The title from Nat King Cole (and Donny Osmond's) lament about being misunderstood due to one’s age seems to appropriately sum up the frustration many young onset Parkinson’s patients feel.