Personal Story

My childhood was very normal in all ways. I played a lot of different sports and was average or better in most sports. In junior high and high school I was involved in gymnastics. I was a member of the Leaders Club, which was a group who were better than average at most of the exercises.

I joined the US Marine Corps while I was still in high school, but didn’t leave for boot camp until after high school graduation. I spent three years with the marines attaining the rank of corporal E4. During my boot camp training at Paris Island, S.C. I had no trouble or difficulties doing the tasks which we were to do as recruits. The obstacle course, though not a walk in the park, was not too bad.

Even during my early years I had little or no reflexes when they tested my knees or arms. No big thing because everything else seemed to be all right. I was not a big man; only five foot nine inches tall and weighing about one hundred forty-four pounds. Being slight of build, I was still very strong, being able to lift much more than my body weight.

It wasn’t until I was about forty-five years of age that I started to notice having difficulty doing certain tasks. I was building an addition to my house and I had trouble doing some of the jobs requiring me to lift or hammer above my head. At first I thought I was having back trouble which I went to the doctors for examinations. They couldn’t find a medical reason through x-rays and MRI’s to be causing my back problems. Then I thought that it must be OLD age creeping up on me. When we get a little older, how are we supposed to know what to expect from our bodies. I always said that if I knew I was going to live this long, I would have taken better care of my body.

When I started having trouble with my legs about age forty-nine, I wasn’t too concerned. When I started to have trouble with my swallowing and pronouncing certain words, I wasn’t too concerned. When I started to have trouble climbing stairs I became concerned. I went to my family doctor and was referred to a neurologist. After examination they thought that I might have a muscular disease of some kind. So, I went to the University of Rochester in N.Y. to see a Dr. Richard Moxley, III. At first they thought that I had proximal myotonic myopathy. Dr. Moxley, after reading the results of the testing at Rochester that day, thought that I might have Kennedy’s Disease instead. He referred me to a doctor Kenneth H. Fischbeck at the National Institute of Health at Bethesda, Maryland. I went to meet with Dr. Fischbeck for examination. After testing, Dr Fischbeck confirmed that I had Kennedy’s Disease. I was diagnosed with Kennedy’s in October of 1999.