My Journey of Discovery

I had never heard of Frontotemporal Dementia or Pick's Disease. I had gone to graduate school to be a clinical psychologist and had studied the brain, but never ran across any information about these types of dementia.

We were an exceptionally blessed family even though we had experienced the loss of our father in 1964. We pulled together as a family and had many wonderful years growing up, taking on careers, making families, and just enjoying life. However, looking back I recognize behaviors in my sister in her late 20's and my brother in his late 30's that just were not consistent with their usual patterns of behavior. Could it have been early onset of FTD?

I love to research anything I have an interest in. Of course as my brother and sister were exhibiting more dramatic behavior changes, I was compelled to research what was causing it. I started with a chart organized by age and started listing odd behaviors and realized they had similar behaviors (maybe looked different, but ultimately the same).

I pulled out a book from school, the Mental Health Resource Guide and went chapter by chapter trying to find answers. I just knew it had to be a mental illness causing these behaviors. Could it be bipolar, depression, alcohol dementia? None seemed fit patterns of behaviors.

Next I called a friend in Seattle and we talked for hours about all these mental disorders and again we leaned towards depression and alcohol dementia. My brother and sister could drink, but I would never say they we drunks. They could drink one day and not drink for a year. As their speech was affected you could talk with them and think they had been drinking due to the slurred speech when they didn’t have a drink in some time.

Then my brother took his life. A young man in him prime (or should have been) at the age of 51 (1 month from 52) sat alone in his home with a gun and shot himself through the heart. A gentle soul that in his right mind would never have had the capability or desire to complete such an act. We now know he was very sick at the time and on a new medication which allowed him some clarity, enough he knew he was sick and couldn’t be a burden to anyone.

Illness in our family was rare. We live long and healthy lives. For my brother to become so out of control by his standards was unacceptable to him. I know some of this is summation on my part, but I feel pretty confident in my opinions. We were very close all our lives and there were not many secrets between us.

I knew I had to figure out what was going on with Patsy quickly before she experienced the same tragedy. It is difficult to write about my brother and sister, but if I do not write about it, how will we ever learn more about it. I do not believe you should put your head in the sand. I am a educator at heart, so information is key for me.

This started my journey to find answers about this disorder.