Let’s talk a little today about Young Onset Parkinson’s Disease (YOPD) by diving into a common stereotypes that may limit identification and treatment of often overlooked secondary symptoms of Parkinson’s disease, which creates delays in diagnosis and misdiagnosis (especially in those who are not senior citizens).
Imagine the following scenarios: a young early stage adult attends his first local Parkinson’s community event or a topic of education on Parkinson’s disease, only to be handed a bib (to wear while eating – to keep drool off clothing as well as spilled food) – which was provided as a gift contributed by a pharmaceutical company or an agency sponsoring the event. Imagine another scenario: a 38 year old woman who has recently been diagnosed with Parkinson’s, is astounded when a volunteer or representative hands her husband a “caretakers” brochure about making “end of life” decisions, and a quick glance at the content of the brochure reveals information about caring for the family member who is dying with Parkinsonism. As you probably are aware, these scenarios can and do happen. The issues that these educational materials or tools address are relevant, but mainly to those in later stages. This type of informational material or handouts are questionable for someone who is younger, who may be newly diagnosed, trying to work through the mix of initial acceptance and denial. These things also further the image that society has of viewing Parkinson’s as solely an older person’s disease, one that is mainly limited to tremor and possibly a shuffle walk.
I have also heard a story of a person with YOPD going to a Parkinson’s event and was repeatedly questioned if he was a caretaker, to the extent that it was uncomfortable for him, as those who were running the event displayed difficulty believing that he could have the illness at such a young age, especially given his appearance of appearing physically healthy.
On a separate note, during watching your favorite TV shows, you may have noticed commercials for pharmaceutical medications that treat various illnesses, in which the person or people impacted by whatever the medication is for, are often portrayed as being young, vibrant, healthy looking men or women (yes, I know, these are actors playing the roles); yet, when a commercial portraying someone with Parkinson’s disease appears, what is shown is typically an older person, one who looks the part of the standard stereotypical image that society associates with this illness (a senior citizen, who may be stooped over, or who is having a struggle trying to hold a utensil).
I realize that the dominant population afflicted is what is being “marketed to”. I am also well aware that there are far more senior citizens with this disease, compared to those who are in the younger working/raising a family age range. I am in no way trying to minimize the impact of this disease in senior adults. However, I strongly believe that the way society thinks of Parkinson’s (and related conditions), with the currently image being that of an older adult (with the stooped posture, shuffle walk, and shaking hands), really needs to be modified or at least be expanded.
Why do I think it is very necessary to modify the predominant view of the Parkinson’s disease patient? I see the following as being valid reasons for doing so:
- We need to catch the disease sooner, then avoid this illness being overlooked or misdiagnosed as often as it has (Parkinson’s is not just tremor or stooped posture, etc.), and treat it for better quality of life.
- We need to educate those who have Parkinson’s related diseases to be aware of – and to talk about – the symptoms that otherwise might not be associated as being a potential part of Parkinson’s disease. There are many who feel uncomfortable addressing symptoms that may be embarrassing to talk about, and to those with PD, they may think that these other symptoms are unrelated to their Parkinsonism. Furthermore, many untrained physicians do not have the knowledge of the various manifestations of Parkinson’s disease (including the potential overlooked symptoms, such as: psychosis, depression, sexual dysfunction, bruxism, sleep problems, swallowing difficulties, and numerous other overlooked symptoms).
As more and more younger people are being identified with Parkinson Disease (and related disorders) – often after having gone through years of possibly being undiagnosed, misdiagnosed, or self-attributing their symptoms due to injury or stress, it is imperative that we try to put a more inclusive representation in the minds of society, including doctors.
I find it disturbing to know that many people do not have access to a movement disorder specialist, because many primary care physicians or general family doctors are unaware of the many manifestations of the illness, as well as the reactions or side effects that can occur with treating medications. Without better knowledge put into the hands of medical professionals, and other ancillary disciplines, as a society, we face continued issues such as having some people who have an anxiety disorder unnecessarily worry and possibly be misdiagnosed with PD, while another person that unknowingly does have PD, is mistakingly informed that his or her symptoms are due to stress or feigned illness.
I am excited that bloggers are getting the message out there, many of whom were diagnosed at a younger than typical age. I am also thankful that celebrities have stepped forward who were diagnosed at a young age, and that their presence helps to put a younger face on the disease.
It was great to see someone make a video showing faces of Parkinson’s who have youthful faces and are younger than what most people would associate a person with Parkinson’s disease should look.
Myself, I am doing my part in educating and attempting to develop a more encompassing image (expanding one the diversity in ages, degree of progression, and symptoms) in the minds of professional individuals and agencies, such as pharmaceutical companies, as well as other providers in various disciplines.
In a separate blog post, I plan on addressing some of the overlooked symptoms that can occur with Parkinson’s disease. Even though there is a common core set of symptoms, the disease symptom presentation is just as diverse and uniquely individual as are the people who have the illness. Just like with many other illnesses, “If you have seen one person with Parkinson’s disease, you have seen ONE person with Parkinson’s disease”. Keep on!