Haven't posted in a while.. Life has been rough. I'm the gf of a guy who is at risk. Chooses not to test because as of now there is no treatment. I understand this but admit it drives me crazy at times. It has been a few years now and I am sure we are not engaged because of this horrid disease.
The past month I have said to myself many times I hate HD more than anything. Last month my bf's mother died from HD...the agony, especially during those final weeks I saw him, his dad, brothers and sisters go through broke my heart.

I understand posting to see other's opinions on if you should continue on in a relationship. I also posted this question a few years ago when my bf first told me there is a chance he has the gene. I even received private messages from well-meaning people telling me to get out of the relationship NOW.

Well, that was over 3 years ago. I chose not to get out of the relationship. Why? Quite simply because my bf has the best heart of any person I have ever met. I prayed for years to meet a truly good, nice guy and it finally happened. If you're in love, it is too hard to let that go for fear of the unknown. With him I've experienced a love I've never known before. Seeing his dad, who took care of his mom for 15 years, refusing to put her in a home, has shown me a love I have never seen before.

So although such a horrid disease I never even heard of before I met my bf, I realize now HD has taught me so much. On here, the many postings of loved ones caring for their HD relative make me see how many incredibly good people there are in this world, while I work in the world of Finance schmucks and see nothing but ruthless jerks most days!
I see the love my bf's dad has for his mom...he is absolutely heartbroken and visits her grave every day.
The research I read on the scientists working so hard to find a cure..the people who run this board... It gives me hope.

At night my bf's legs jerk, his arms shake. Sometimes I think I see early symptoms. But my decision is made - to stay with my bf even if he does get this disease because I'm not going to let this disease be bigger than my love for him and hell if I'm going to let fear of a disease let me give up the best guy I'll ever meet in my life. Sometimes you just know when someone is too special to ever break it off with them.

Someone said on here the other day to 'just accept what is'. Acceptance is what calms me rather than fighting/getting pissed at the crappy reality that he could get HD someday. But I also have the hope, as all of you well know, of successful treatment and a cure one day. After seeing his mom suffer and imagining it could continue on to him or his siblings... that hope for a cure is what keeps me going.

So if you're in a relationship, deep down you will know what to do.. in time. Nobody can tell us to stay or leave. Reality is it could be a difficult future. But I see love and God to be much stronger than HD. And no, I am not 100% sure I can handle the late stages on my own. But I know I want to be there for him if it happens. He is worth that.

So just like a friend who married her boyfriend right after college and sadly lost him to cancer 9 years later. I'll take the plunge. Because we never know what life throws our way. HD or not. Why? Because he's worth it.



Thanks for reading and prayers every day from me from that little cathedral in NYC called St. Patricks!



Edited 1 time(s). Last edit at 10/02/2012 10:21PM by alwayshope20.

Alwayshope, you are a very strong and brave person. Let me give you a little advice...if you don't get married...talk to you bf now about what he wants done when he gets bad off. As a girlfriend, no matter how long you have been together, you have no rights to any of his medical records, financial statements, etc. If you can talk about it now with him, then maybe you can avoid some of the troubles to come. I am in a situation where I am trying to help my son's father. I don't love him but I respect that he is the father of my child and as such, I want to help him as much as possible. But, we are not related, never married to each other etc and I get stalled at every turn because of that. I would take him to Dr. appts., drive him to a COE, anything I could to help him but he won't tell me when his appointments are, or he gives me the wrong time and place. Have your boyfriend make you power of attorney or something. Please, anything, so you can help him when he really needs it. I don't think HD is a hopeless disease anymore. He should be tested so he can get into clinical trials. My mom has cancer. When she was diagnosed we were told that from diagnoses to death was about 6 months. We researched and found the best place around for her. Today, we are going to visit her dr. that is 4 hours away. We have been going to this particular place for 7 YEARS!

Take care but please don't hide from HD. You and your boyfriend have some serious talks ahead of you. I hope you can work everything out.

I have been with my boyfriend for almost 4 years. He had been diagnosed before we started dating and was up front from the beginning. He also refuses treatment as there is no cure. It is not an easy life. I have older children and so does he. The worst thing I deal with is the emotional out bursts almost always aimed at me. I am the closest person. He is not close to his mom or sister - his dad died last March and he can not tolerate his step mom. At this point he consumes ALL of my free time. I love him dearly but it is an exhausting life. It is hard to remember that the anger is just the disease. I wish you the best whatever you decide.

This disease can be exhausting and horrible on so many levels. Some people can be ok pretty far into it and you life can be good for a long while. But as you have already begun to get a taste of, it is a challenge.
I think success is based on the realization that you must be open to and accept and that there is a very good possibility that you cannot be expected to care for him if he becomes dangerous or his needs are beyond your ability. In the back of your mind understand that it is ok in the distant future that he may have to go to secured safe place and you will have done your best for him and go and live w/o guilt or feelings of failure.. Meanwhile enjoy your life together

alwaysshope, like everybody is telling you, you need to prepare if you are going to stay with him if you are not getting married you must get some kind of documents to allow you to be responsable for him, Me and my husband been in love for the last twenty four years and let me tell you when he had the mell down I had to go to the court house to be able to be responsable because he did not want to take his medicine no more the person the you love it goes away with HD sometime cames back but sometime stay away its not a pretty picture, I will try to take care of my husband for the rest of his life if I am able to. Good luck to you on your decision please prepare yourself if you are going to stick around.