When anyone begins writing a blog, there is an implicit agreement with readers that new material will appear with some regularity. I have been remiss in that bargain but I hope my reason was good.

Everyone in my Partner support group has heard me say "If you break, the whole system breaks."

When the system breaks, families may be forced into making very hard choices under duress. Often this means that the deepest fears of the person with PD become reality- institutional care, divorce, or the dreadful feeling that one has become a burden.

"We need to have a plan in place for when things get bad."

This statement was another that arose when I canvassed my Partner's Support Group about things they wished the person with Parkinsons knew (see my previous blogs "You May Be Down but I'm Not Out" and "The Parkinsons Feedback Loop"). There are many topics families with PD find difficult to discuss but this is one I find to be marked by the most active resistance. I think this is neither coincidental nor surprising. Uncertainty about the future is one aspect of the disease that is sandwiched within layers of anxiety, if not outright terror.

In her response to my blog ("Living, Well, with Parkinson Disease"), a reader wrote, "My personal experience has been a crap shoot at best and I have come up on the losing end in a big way."

The take-home message from the June, 2009 Living Well with Parkinson Disease retreat sponsored by the Parkinson Foundation of Western Pennsylvania was that there appears to be no single place to find all the pieces a family needs for living well with the disease. Coping with the demands of PD is lonely and confusing because the disease is rarely treated by the professional community as a whole life disorder.

"It is hard for me to stay positive when you are down and not willing to do something about it."

I recently had the great privilege of participating in a weekend retreat sponsored by the Parkinson Foundation of Western Pennsylvania. The stunning beauty of the Laurel Highlands served as a backdrop for one of the most rewarding experiences of my professional career. I came to the retreat featured as a presenter but left as a student. Over the course of three days, I was able to learn volumes about the disease from families struggling with it daily.

Recently, I asked a group of Parkinson's Partners what they would most like their loved one to know. The results were fascinating and I will be discussing them over several blogs.

There are two types of individuals with Parkinson's Disease - those who have it and those who do not. This is not a question of semantics or clever word play. It is a statement of how an individual responds to Parkinson's Disease. The category into which any person falls has great bearing on the quality of life for the Partner.

The late Dan Fogelberg's question, posed in a 1983 hit song, is not a trivial one for couples with Parkinson's. The challenges of living with a chronic degenerative illness are manifest. The search for an effective response fills books and websites, is the grist of support group meetings and, on occasion, becomes a topic for consideration in my office.