Monday, February 20, 2012 Does Parkinson’s Need a New Name?
Ask anyone with Parkinson’s disease and they’ll tell you it is more than a movement disorder. Yet until quite recently, Parkinson’s disease has been characterized by the three classic symptoms identified by James Parkinson 200 or so years ago -- rigidity, slowness of movement and tremor. Yet Parkinson’s patients complain of loss of smell, constipation, depression, anxiety, fatigue, vivid dreams, light headedness, swallowing difficulties, difficulty with multi-tasking and even memory. These aren’t motor symptoms.
Recent findings reveal that Lewy bodies (abnormal structures that are a hallmark of PD if located in the substantia nigra) are to be found in other parts of the brain and body of people with PD, such as the autonomic nervous system of the lower bowel as well as the esophagus. Parkinson’s may, in fact, begin in the lower brainstem and olfactory bulb or even the gut, not the substantia nigra, and this may occur many years before any motor symptoms present themselves.
These findings shed light on the many non-motor symptoms that plague Parkinson’s patients long before their disease is even diagnosed. Once motor symptoms appear, Parkinson’s may no longer be what is considered “early stage.” It is increasingly accepted what patients already know: PD is a widespread disorder affecting numerous components of the central and peripheral nervous systems.
There are many implications to this new understanding of the disease. Dr. William Langston, Scientific Director of The Parkinson’s Institute, suggests that there are profound implications for the investigation into the causes of PD, and the need for studying mechanisms of neurodegeneration that underlie the entirety of the condition, not just the substantia nigra. He also suggests the need for neurologists not to look at their patients just in terms of their motor symptoms, but also at the variety of other symptoms and conditions, many of which do not traditionally fall within the purview of the neurologist.
I would hope that many clinics treating Parkinson’s patients will be adopting a multi-disciplinary team approach to address this complex disease. If not, we as patients need to be ready to expand our support and medical care team from the traditional motor-oriented professionals to now include GI docs, swallow/voice professionals, sleep doctors, neuropsychologists and others.
So, should the classification of Parkinson’s disease be changed from a Movement Disorder to a Multi-System Disorder? Let us know what you think.
Diane
Note: Dr. William Langston, noted above, is a proponent of a revised definition. He will be speaking to our Denver Support Groups this week and I will report on his talk in my next post. Also, the January 2012 issue of Movement Disorders carried an article by Matthew B. Stern entitled “Toward a Redefinition of Parkinson’s Disease” which is an in depth exploration of the pathology of PD, including a look at when PD really begins.
Reader Comments (2)
Great post, Diane! As you know this is my favorite PD topic, and I am so sorry to miss Dr. Langston's talk! I hope it sparks big changes on how we all - PWPs and non- PWPs - view our disease. Kudos to you for arranging this event!
Looking forward to seeing everyone in a couple of weeks!
Posting from Ventura, CA, Betsy
Thank you this was exactly what I have been searching for.