When a neurologist makes a diagnosis of PD, nothing truly changes from the moment the patient and family first came to the office, except confirmation of the disease. But I have heard the moment described as the emotional equivalent of being hit by the entire defensive line of a pro football team. It is an understatement to say a family is left reeling and confused. The subsequent sense of disorientation endures for weeks or months. In fact, my clinical experience leads me to wonder if the disorientation from the blow doesn't take several years to subside.
Feelings of disorientation can lead to a sense of crisis. When a family perceives itself to be in crisis, decisions tend to focus on relieving the instability of the moment and are necessarily weighted toward making a rapid response. Crisis response shifts the viability of any solution to a short term perspective of containment and damage control. Although this should be a time for careful reflection and methodical planning, crisis thinking drives many families to make less than optimal decisions.
The sense of crisis is often fueled by paradoxical glut of information that overloads and overwhelms. A family will be immediately directed to support groups, websites, pamphlets and PD 101 books. These materials certainly have a place, but it takes time to digest them and it may be difficult to navigate them to find specific answers to a pressing question: What do we do next?
The answer is simple: Take a deep breath.
There is no aspect of PD than cannot be made worse by haste. This is not the time to ruminate about retirement or going on disability. The moment is not right for telling friends or co-workers about the diagnosis (unless these people have always been trusted confidants). It is certainly not time to tell your employer. Do not evaluate nursing homes and assisted living facilities unless you had already planned to reside in one of these facilities. Do not re-write your will (although it might be a good time to consider talking with an attorney if you don't have one). Do not consider divorce because there is some notion the person with the diagnosis will be a burden.
In short, do nothing that you were not already considering the day before you got the diagnosis. If you were going on a vacation in the next few months, go on the vacation. If you were applying for a promotion, continue the application process. If you were going to attend your child's graduation or wedding do not change your plans.
There is an old zen saying that is appropriate here, "When hungry, eat. When tired, sleep." There will be a time when the sense of crisis dies down and the family may begin to make solid choices and develop viable strategies for approaching the future.
"To every thing there is a season, and a time to every purpose under the heaven." There is time enough to manage all the aspects of PD but it comes when all the stakeholders have had a chance to regain their emotional equilibrium.
If the diagnosis of PD has left your family feeling off balance, contact the PDFSO for more information.
Paul Short, Ph.D.
President, The Parkinson's Disease Family Service Organization