April is Parkinson’s Awareness Month. My email is packed with posts urging me to get the word out about Parkinson's and offering me a multitude of ways to do so. “Disease Months” serve an important public relations function and typically do a very good job of disseminating information about what a particular medical condition is. As I have gone through the literature and notices I have received about PD the past few weeks, I notice that this Awareness Month focuses very little on what Parkinson’s is not. This prompted me to supply my own list for this blog (in no particular order):
Parkinson's is not an excuse to retreat from life. Although many people find their world seems to have contracted around their PD, this is very often a function of how they respond to the condition. Parkinson's does not demand heroism or unique qualities to cope with it, only a determination to maintain one’s dignity along the way. We are told that it is impossible to understand another person’s lot in life until we have walked in their shoes but many who have PD cease to walk. They become beaten by the disease when they fail to embrace possibilities that exist in the face of PD. Even a shuffle is forward movement someone unfamiliar with the disease can understand.
Parkinson's is not a death sentence. It is a life-altering neurological disorder that presents a unique set of challenges most of us were never prepared to address. It slows, it stiffens, it aggravates with tremor- but it no longer kills. Most people who have the disease face the same health problems that challenge and ultimately kill the rest of us because modern PD treatments continue to improve. PD treatments do not stop the aging process. In this regard, we remain part of the human condition.
Parkinson’s is not just a movement disorder. It is a disease process that alters deep brain structures that have a host of important functions. The movement alterations are the cardinal signs that confirm the diagnosis but people who have the disease are also challenged by changes in their autonomic nervous systems, sleep, mood, and cognition. A lot of these symptoms appear years before tremor or rigidity. What have traditionally been discussed as “non-motor” symptoms ultimately have the greatest impact on quality of life. It is important to keep PD in the proper context as a brain disorder affecting many different aspects of a person’s daily functioning.
Parkinsons is not managed until we involve the family. A person with PD meets with Dr. Neurology a half hour or so three or four times a year but the bulk of the 8760 hours in a typical year are shared with one’s family. Even allowing for sleep and job demands, that leaves a very large chunk of time a person with PD is a family member not a patient. Any chronic illness can have a dramatic impact on a family because it demands a multitude of changes. Family members must learn to live with PD but we do a very poor job of helping them meet this challenge.
Parkinson’s Awareness month is an opportunity to help others understand the disease better. That goal can be accomplished talking about what the disease is- and is not.
Good luck in spreading the message.