John with his instructor

Growing up with a father and an aunt with Huntingtons desease, I have always known that there was a chance that I too would get this illness. Knowing this, I had always tried to prepare myself just in case I ever had to hear those words, "You have Huntington's, I'm sorry."

Shortly before my sister passed away, also a victim of HD, I began to notice the tell-tale signs of HD, like how I kept dropping things more frequently. I also began moving without wanting to, and I had become very moody as well.

A few months after my sister passed away, I decided it was time to get tested not only to put my mind at ease but also my wife and mother. I had a theory that the sypmtoms were only in my mind, that I had convinced myself that I had it or was showing movements because I had learned the behavior of moving after watching my father and sister with the sickness, not because I actually had it.

The test usually is a rather long process involving the following: 1 - a visit with the genestist; 2 - a visit with the neurologist; 3 - the visit with the psychologist; 4 - the actual blood test; 5 - the followup with the neurologist as well as 2 more follow ups with the psychologist if the results were positive. Fortunately, because of my past history with my neurologist ( was diagnosed with Meniere's desease which left me deaf in my left ear) as well as the fact that he also saw my sister as well, he decide to just give me the test. I had explained to him about my thoughts regarding my movements being all in my mind, and he told me that there was a woman at risk who had also began to show movements as well and actually tested negative.

The big day finally came to go get tested in June of 97. They took a sample of my blood, and two weeks later I went in for my follow up appointment, and unfortunately, the results were not good news. I was only 26 years old and HD+.

Shortly after, I left my job, and applied for disability, which was hard for me because I had been working since I was 15 and suddenly I had to depend on others which really does wonders to one's self esteem. I was still able to do the basics,like cook for my then wife, as well as clean the house, which helped a little bit to regain it back. I was embarrassed to go out in public for fear that people would asume the worse (he is drunk! He is on drugs! etc) This really was a change of pace for me considering my entire life I never cared what others thought of me (I'm best known as being a free spirit!) It was also getting frustrating how almost anytime that I would go for a drive I was always being pulled over.

I have had this disease for 7 years now and during this time have really grown to accept my limitations. After my divorce, my parents were kind enough to take me in and keep an eye on me. I no longer am afraid to go out anymore, in fact I even enjoyed going out and go dancing! I also no longer drive; I must rely on friends and family to take me out to activities. I have also gotten used to the fact that every night before I go to bed I will have a new set of bumps, bruises and cuts from running into various opjects through out the day. Whenever I begin to explain to some one the basics about HD, probably the most frequently asked question would have to be "Does it hurt or can you feel it when you move?" "Well, only if I hit something hard," I always reply! Actually, it's amazing how much pain you can endure after a while of constantly moving into things. Another limitation is that my speech seems to be suffering quite a bit, which is a shame considering how much I loved to talk.

I even started Kumdo (Korean swordmanship) for the past 5 years using japanese swords and wooden swords for teaching my class. I recently got my second degree black belt in Kumdo as well and now I'm teaching for my instructor. My instructor knew about my sickness from the get-go and did not charge me a dime during the five years at his school. As I practice my various forms with my swords in class, or even sparring with one of my students with a bamboo sword, it always amazes me how I almost leave my body and am somewhere else. For that brief time, all of a sudden my coordination returns, and my movements disappear. I always look forward to my next class because it gets me out of the house and also for just for a while I get to feel normal again.

It seems strange, because in some ways I'm worse than before, like my movements as well as having to be completely dependent for alot of things, but I'm also better in my overall attitude towards my life. I am very fortunate to live with my parents who are very, very understanding. I am also very lucky to have great friends that care as much as they do. Every now and then, I will miss my old life, like being able to live on my own as well as my old job as a social worker. But then I remember that I did not choose my illness, I was born with it. God has decided to put my faith to the test, and it is a test that I hope I pass. There are alot more painful sicknesses in the world. I am greatful for the time I have on the earth before passing on to see my family and friends in heaven.