My sister has been diagnosed with frontotemporal dementia. She is 57 years old. In August 2008 she didn't show up for work, and when I went to her home I discovered that she had started hoarding.

Approximately two years ago my husband began exhibiting the classic symptoms of FTD: apathy, social behavioral changes, lack of decision making, irritability, confused, etc. It was not until last May that he mentioned he had some twitching going on in his biceps and asked a physician friend what to do.

My husband, J, has been a patient at the Memory and Aging Center for the past four years. He is enrolled in the FTD clinical research program and has been in the memantine study. Now 57, he remains somewhat of an enigma to the doctors and research staff, as even in his dementia he refuses to be "in the box," with behaviors that cross the lines between Alzheimer’s and frontotemporal dementia. This is typical of J, as throughout his life he has truly marched to the beat of his own drum.

But something began to change about 10 years ago.

My wife M was born in the Bay Area, and we met and married while we were both attending UC Berkeley in the 1960s. We have lived in Santa Fe, New Mexico for 25 years, but have retained close relationships with friends in the Bay Area.

I retired from a career in physics in the mid 1990s to be immediately confronted by two years of mounting confusion as signs of dementia appeared in M at a slowly increasing level that I was able neither to understand nor to avoid. The next two years were perhaps my most agonizing. I was increasingly unable to understand the changes that were happening and became increasingly frustrated as I made ever more determined efforts to get doctors to diagnose her. Her outgoing and gregarious nature, her attractive dress and demeanor, and her continued ability to dominate increasingly meaningless but nonetheless fluent conversation made it difficult for her doctors to realize that something was wrong.

When my husband, Professor J, was first diagnosed with Primary Progressive Aphasia, I had never heard of the disease. I read all the material that was given to us at that time and still felt extremely confused and ignorant of the debilitating journey that lay ahead. It wasn’t until his sister who told us about a research project that was being conducted by the University of California, San Francisco that I felt a sense of hope.