In July 2009, after 42 years of marriage, my 69-year-old husband, Michael Reynolds, was diagnosed with frontotemporal dementia (FTD). As frightening and horrendous as that diagnosis was, it went a long way toward explaining the frustrating and puzzling changes in Mike’s behavior that I’d been experiencing from as early as 2005.
Neither I nor any of our family members or friends had ever heard of frontotemporal dementia until the term was applied to Mike. Upon delivering the diagnosis, the neurologist explained that FTD is a neurodegenerative disease. It affects the frontal and temporal regions of the brain—regions that control personality and social behavior, reasoning, speech and language comprehension, and executive functions. There is no known cause. No cure. It is progressive, but the rate of progression is unpredictable. Aricept and/or Namenda, drugs often used to slow the onslaught of Alzheimer’s disease, might in some cases slow the progression of FTD, though that, too, was uncertain.
We were certainly aware of Alzheimer’s. The Alzheimer’s Association estimates that 60 to 80 percent of all cases of dementia result from Alzheimer’s disease. Vascular dementia, caused by inadequate blood flow to the brain, which often occurs with strokes, accounts for 20 to 30 percent, FTD perhaps 10 to 15 percent. In comparison to the wealth of Alzheimer’s publications and media reports widely available, information about FTD was scarce and required a degree of diligence to uncover. I, our grown children, my brother and sister-in-law, and some in our close circle of friends, set about gathering and sharing whatever information we could find. While we familiarized ourselves with whatever FTD information was available, we watched Mike increasingly embody classic textbook symptoms.
This account of the steady deterioration of a much loved, bright, talented, funny, emotionally connected husband, father, brother, uncle, music colleague, and friend is unavoidably skewed by my own particular view. But, particular as it is, it also depicts much that is common to victims of FTD and to the ones who love them.
For those whose lives are being turned upside down by FTD, I hope this account of our experiences opens a window onto the emotional and practical tasks ahead. If such tasks are behind the reader, I hope there may be some comfort in knowing that he or she is not alone with the pain, sadness, frustration, guilt, resentment, and loss that inevitably accompany this journey.
Marilyn Reynolds
Sacramento, California