Huntington's Disease Forever
Tags: Huntingtons Disease, Support, Testing, Disease

Huntington's Disease Forever

Anyone opening this article to read about Huntington’s Disease most likely already knows what this disease is. Long story short, it sucks. If your parent has the disease, then you have a 50/50 chance of having it as well. That isn’t even the worse part. The worse part is see the child of get it before they are even old enough to drink or really enjoy life, but that is not what this blog is about. I want to share with you how my life is affected by this disease by first starting with the longest 30 days of my life.

So, when you are getting tested for this disease, you have to find a clinic that will test you. Let me tell you right now, that can be a huge pain in the A$$. So, trying to sleep the night before going into this clinic to get tested was a no go. However, I had my brother with me during this and he was already positive for the disease which in some odd way made me feel better. Knowing he was strong enough to go into this with me after we went into it together for him really gave me strength, but enough of that heart warming stuff.

No matter what people tell you, no one is truly ready to take that leap into knowing if their life is going to be cut in half, but they do because that’s just what you have to do. So, walked in nervous but got the test done, they ask me questions after questions. Then they say, “hey, you have to wait a month before we will share with you the results. See you in 30 days”.

“Awesome”. That was my word to them. Nothing else. Like “hey, see you later for a huge life changing news.” The whole thing took about 1 hour and they have to send you blood off to be tested. I’m pretty sure they can do it right there, but they want to make sure you are ready for this life changing advice. So, I went home and your going to notice a theme with going home in this blog.

1st day was oddly calming, like ‘yeah I got this.” Acted like my life was back to what it was before. Nothing has changed, until I went home. Nothing like sitting with your own thoughts after starting the process of learning a life changing event. Imagine you think you won the lottery, but you have to submit the ticket and they will let you know if you won in 30 days. Its like that, but $hitter.

Day 2–10 was okay. As long as I was outside and with friends, I didn’t really think of it. However, my girlfriend at that time was really unsupportive. You really never know how someone views you until they are rely upon them for just a few days. Every time I went home, it was a battle because she didn’t want someone who wasn’t going to be around, but in the same token, I understood.

Day 11–20 was slow. Like I wanted the days to be over. Remember when you are a child and it’s Christmas eve and you can’t wait to full asleep, but the day is taking forever? Same thing but $hitter. I wanted to know the result, Just tell me already is what I told the video game I played. Oddly I picked up a new hobby of video games at this point. Needing to do something when I was home. I played FFX for days. I destroyed this game.

Day 21–28 was good. I knew it was coming soon. I took a few days off of work. I started to play golf with my father. Got into wood working again. I really build up some actual hobbies. I also created a game plan for if I was going to die at 40. It involved a lot of money I didn’t have, but it was a plan and that was more then I had at Day 1. Every time I went home, I played some FFX and wrote down new and exciting ideas to get the most out of my life.

Day 29 was awful. The last day before I got to know the results and man it was a nightmare. I told my GF at this time to get lost. I couldn’t eat, couldn’t focus. I just sat on the couch and thought about everything. The first thing I was going to do if I didn’t have it was break up with my GF and find a way to help find a cure. I was also going to go to church, I am not a church goer, but it doesn’t hurt to thank something. If I did have it, I was going to take a large loan out, sell my house and explore the world and maybe die a heroics death; Become a firefighter or something. I honestly didn’t eat that, I didn’t sleep and I called off of work. Word to the wise, if you getting test, take the day before off.

Day 30, The day. I had a army of friends and family come with me and I needed that more then you realize. I was only 25 when I got tested so most of my friends were able to show up. Boy walking into that clinic and sitting in the waiting room was rough. I of course had a smile on my face and pretended like I gamed all night and that was why I looked tired. My father was on standby ready to come down if I needed him. So, all that was left was knowing. When I walk in the room with the doctor my stomach dropped in my A$$. She looked me dead in the eye balls and said I have good news and boy the wave of relief that came off of my was huge. Hugs all around.

I then went home, had a large glass of chocolate milk with my best friend and my brother and immediately started my list. Broke up with my GF and started on my charity. Its small, but it’s worth it. I do my best to help others with finding a testing spot and I go with my brother for his treatments. My mother has Huntington’s chorea so she is hospitalized. I see her as much as I can, but I will never stop working towards finding this cure. I may not be smart enough, but someone will and I hope my money gets to that person, but one thing I know for sure is that I will forever be tied to Huntington’s Disease.