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Men Dealing With Huntington's Disease

© Phillip J. Hardt

Phil Hardt writes of the HDSA 2000 convention: "Hello everyone! The convention was fantastic. It was informational, emotional, very fun, and very tiring! I wish everyone could have attended. It was a priviledge to be one of the presenter's on Lou's panel. Here's the presentation that I gave.......Phil" by Phillip J. Hardt 06/15/00

Men Dealing with Huntington's Disease The Phillip J. Hardt Family Session I

Living Positively with Huntington's Disease

Good morning. My name is Phil Hardt. I'm going to talk a little about "Men Dealing With HD." Three years ago, when I first began experiencing enough repetitive problems that I was forced to admit that I might have something the matter with me, I was still working full time at AlliedSignal Aerospace, teaching part time at a local community college three to four evenings a week, serving as a youth counselor at my church, and in my spare time I was a husband and father to my eight children, ages 1 to 21 who were still living at home. The onslaught of subtle symptoms that began adversely affecting every part of me were uncharacteristic of my cognitive abilities, personality, physical capability and behavior.

I had always been confident of myself and my abilities to handle anything that life could throw at me. However, overnight I became someone who was very afraid, depressed over the new uncertainty that life now held, and frustrated about this happening to me while in the prime of life. For the first time in my life I felt frustrated that I couldn't figure things out, powerless to fix everything like "Daddy" had always been able to do in the past, and totally helpless to confront the many contradicting feelings and emotions that were thrust upon my HD-affected mind! I was so overwhelmed and insecure that I seriously contemplated suicide as the best way out.

Four months later the blood test confirmed my gut feeling with: "This individual possesses the Huntington's disease CAG mutation and therefore is predicted to be affected with or predisposed to developing the clinical symptoms associated with Huntington's disease." Now that I had my "official" diagnosis I was faced with other questions like: How much longer will I be able to work? After all, I was the sole breadwinner for my large family and I was concerned about how they would survive without my paycheck, insurance, and leadership. When and how should I tell my employer? Will they demote me, or worse yet, fire me if I tell them? I had read horror stories about others who had lost their jobs because of being unable to perform their current job responsibilities.

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