Okay, I admit it …

I have Kennedy’s Disease. There, I said it! Whew ... That wasn't so hard.

Kennedy's Disease is an X-linked, adult onset, progressive muscle disorder. I often refer to it as the poor man’s version of ALS. Kennedy’s Disease does not show up until later in life and it gradually erodes your strength by killing off the muscles and motor neurons in your body. Doctors classify it as rare disorder and estimate that 1-in-40,000 men have it. There is no treatment or cure for the disease. Living with the disease reminds me of the paradigm, “Is it more difficult to face life being blind from birth or to lose your sight later in life?” I realize that neither are good options, but is one worse than the other? Is it more difficult to lose something that you had or never to have experienced it in the first place? Realistically, what does it matter? You are still blind ... or, in my case, physically handicapped.

Several people have asked why Kennedy’s Disease is called a “disease” when it is actually a defect in our DNA. When I looked up the word “disease” in the dictionary, it provided a clearer understanding. A disease is “an impairment of health or a condition of abnormal functioning.” Well, that explanation does fit pretty well. Kennedy’s Disease is a condition of abnormal functioning of the androgen receptors that fire the motor neurons. I still like the scientific name of Spinal Bulbar Muscular Atrophy. Now that is descriptive and it does not sound like something contagious. Does my being bothered by the word “disease” just show an increased level of frustration? Why should it matter what it is called? All I know is that I am still a “man,” but I no longer feel manly. I feel emasculated because something was stolen from me that I prize.

Kennedy’s Disease takes its toll on people mentally and emotionally as well as physically. Everyone tends to focus on the physical manifestations of the disease and not much is said about the psychological aspects of it. In some respects, the psychological aspects of the disease are far worse than the physical. As the muscle groups weaken and basic movements become more difficult, thoughts and feelings also begin to deteriorate. Acceptance is often the most difficult aspect of Kennedy’s Disease. Acceptance is a hard pill to swallow. Even more difficult is admitting to others that you have the disease. It took me years just to tell my family and friends. It took even longer to admit it to my supervisor at work and co-workers. The last thing I wanted was to be considered physically handicapped … someone that could not do his job. I did not want people looking at me as different or considering me less than a “man."

In my thirties, I occasionally tripped or stumbled when walking on uneven ground. I brushed these incidences off as me not watching were I was walking. More doubts began to surface as other symptoms began to show up. By the time I was in my mid-forties, I realized that I could no longer do certain things that I enjoyed. One such activity was hiking in the mountains with my wife. We loved being together surrounded by nature. We often hiked several times a month. Going uphill was difficult as my muscles weakened, but it was going downhill that became dangerous. My quads could no longer hold my weight. The longer I hiked, the weaker the leg muscles became. I fell many times in those years. Fortunately, my injuries were relatively minor and I always managed to get up and continue on.

Gradually, I had to give up more activities that I enjoyed. Racquetball and tennis were two sports that I was pretty good at and I enjoyed playing. Eventually, I just could not safely play either of them. Then, in my mid-fifties and after several falls and a few broken bones, I realized that even stairs were out of the question. I now needed an elevator if a customer, warehouse, or mill had offices on the second floor. A few years later, just walking with co-workers or customers became a burden because I could not keep up with them. At first, I just gave some excuse and tried to bow out gracefully ... bad knee, recovering from an injury, etc. Eventually, I had to tell the truth and just say, "I sorry, I can't do it." Every time I said, "I can't," I thought of my father telling me that "can't never could do nothing."