Now I am my brother ...

It doesn’t seem like that many years ago when my brother came home from Germany. He was just discharged from the Army. I could not believe how physically fit he was. He had some guns (biceps) and there was not any fat on his torso. One day he was telling me how he made extra money while stationed in Germany. He said he would take bets on how many one-handed push-ups he could do. These were full push-ups where he had to touch his chin to the floor. I asked him how many he could do and he said he would rather show me. I could not believe it when he knocked out one hundred one-handed push-ups.

Now segue forward twenty-five years or so. When I came home for a visit, my brother came over to play some cards. I noticed he was having difficulty standing up from the chair. He also had some hand tremors (mild shaking) and I noticed his voice sounded nasally. It also seemed like he was always clearing his throat. I was too embarrassed to ask what was going on and he didn’t bother to tell me.

About ten years later during another visit I noticed that this time my brother was riding an electric scooter. He could not walk the half a block from his house to our mother’s house. Before he sat down, he put several pillows on the chair. I asked what the pillows were for and he explained that it elevated him enough so that he could stand up from the chair without anyone’s help. He choked a couple of times on the coffee and seemed to have a difficult time swallowing the cookies. He couldn’t quite extend his arm out straight when playing a card and had to almost raise it up above his shoulder before extending it out. The right side of his lip sagged constantly. The short-sleeve shirt showed loose skin where the huge biceps and triceps once had been. When he tried to stand up, he pushed down on the top of the table with both arms and almost fell forward before righting himself. The difference in this visit was that I now knew what my brother had because I was beginning to have similar symptoms.

I had recently seen a neurologist for difficulty in walking and occasional falls. My legs just wouldn’t hold me up; especially when I was fatigued. After several tests that I would not want to go through again, the doctor referred me to the University of Pennsylvania Neurology Department. When I walked through the door into the examination room, the neurologist said almost immediately that I had Kennedy’s Disease. The doctor ran a few tests and drew some blood. When he had finished all the tests, he explained that Spinal Bulbar Muscular Atrophy (SBMA) was also known as Kennedy’s Disease. It was named after Dr. William Kennedy; the person who first diagnosed the disease at the University of Minnesota in the late 60’s. The bad news was that the disease was progressive and there was no treatment or cure.

In the weeks that followed the diagnosis, I began to understand why my brother never wanted to talk about his condition. It was something that was almost unfathomable to consider because it was happening to me. Now I am my brother …