When I met my boyfriend, everything was fine. We were together for two years when I started talking to him seriously about the future. He told me he never really thought of any future with anyone but me. He told me that he was scared because he was at risk for Huntington's. He brought up that his father who I thought was dead this whole time is actually in a Nursing home suffering from the disease.

After our discussion all I can think about now is my future with my boyfriend. I want to be with him and love him. I want to grow out with him. I cry almost every night while he isn't around because I feel destroyed inside. I feel like this is a sick joke from life that the person I fell deeply in love with has to be someone who may not even be able remember me someday. I want to have children someday as well. I feel like having children is essential to my life, but I can't have them with him if he has the disease. I couldn't do that to them.

As selfish as it sounds, I don't want to be alone, I've been thinking about leaving him because I can't handle not knowing. He refuses to get tested. He said if he finds out, he'll feel like his whole life and everything he is doing now, will be worth nothing. If he does test positive, I'm not sure what I'll do. I may stay with him still. I just want to know so that someday, if he shows symptoms, I won't regret anything. I'll know it was my decision to stay and I will be better prepared.

What do I do when my boyfriend refuses to get tested? I try to educate him here and there about the disease but he doesn't want to even acknowledge that. I know it is his choice and I respect that. I just don't know if I can handle myself. I don't know if I can handle my own thoughts. I'm sorry if I sound trite, but I fully wanted to secure myself a long, beautiful life with this man. I wanted to raise our children together and invest everything into him and our future.

I've tried to express how I feel to him but he shuts down. Sometimes he just lays there still and cries quietly. Any advice, help, similar situations would be greatly appreciated. Thankyou.

WOW Sky...what I am dealing with, with my hubby having HD I wouldn't wish on my worst enemy. I want to say run as fast as you can, get away because if something so important he won't deal with now, what happens if you have another important thing come up?, will he check in or out.

No this is life or death for him and or children you two could have. This is NOT A GAME!!

If you want a relationship and a family HD is not the way to go but if you truly love him and if he has HD then you better be a strong woman, 10-20-30 plus years of possible hell...you choose. I am already married to my man, to me I do not have a choice but to stay with him as long as possible.
Some may think this is harsh but I am going through it and it is hell...HELL.
I am alone, all my friends have gone, family checked out, doctors, nurses think I am crazy when I tell them what he does, people just don't believe us the caretakers.

Sky-
You have to decide who you are and what you really want.
In my case, my husband has had HD for probably 18 years. There were ups and downs like most marriages - I now wonder if
some were not attributed to HD but will never know.
If you decide to stay there are medications that can help him that were not there years ago.
To test is a very personal choice for him. Some may handle it well, others may not. It has nothing to do with how he cares about
you or your future but how he may react and how it may change him. Personally, if it were me, I would probably choose not to
test. As I said that is an extremely personal choice and nothing based on you. Everyone is different in how they may handle this.
I can only tell you my experience. We have been married 40+ years. In my case I would not change what I have done. We had a
couple rough times that I know were attributed to HD but through this forum I found a couple medications that have worked wonders
for him. Yes, there are things we are not able to do but there are many we are. We still travel and enjoy life, we just adjust when needed.
I know he would have been there for me and I will be here for him. It has probably made me a stronger person. Unlike Marylssa I do
have many friends and family that have supported me and I am very greatful for that. I would also be here to support them on anything and
am.
Take care and take time to make your decision

Shar

Sky-
You have to decide who you are and what you really want.
In my case, my husband has had HD for probably 18 years. There were ups and downs like most marriages - I now wonder if
some were not attributed to HD but will never know.
If you decide to stay there are medications that can help him that were not there years ago.
To test is a very personal choice for him. Some may handle it well, others may not. It has nothing to do with how he cares about
you or your future but how he may react and how it may change him. Personally, if it were me, I would probably choose not to
test. As I said that is an extremely personal choice and nothing based on you. Everyone is different in how they may handle this.
I can only tell you my experience. We have been married 40+ years. In my case I would not change what I have done. We had a
couple rough times that I know were attributed to HD but through this forum I found a couple medications that have worked wonders
for him. Yes, there are things we are not able to do but there are many we are. We still travel and enjoy life, we just adjust when needed.
I know he would have been there for me and I will be here for him. It has probably made me a stronger person. Unlike Marylssa I do
have many friends and family that have supported me and I am very greatful for that. I would also be here to support them on anything and
am.
Take care and take time to make your decision

Shar

Ok, You love him and you want to have kids with him. You can have his kids. You can have the fetus tested in utero or you can have implantation (there are others on this forum who have gone through this) I think there are even ways to test the fetus that don't involve your boyfriend being tested.

It is hard. I think that it is better to know and move forward than to not know and be stuck there, not knowing.

Marylssa and I are having bad experiences with this disease. I didn't even have the benefit of knowing my son's father without the HD affecting him. So all I know about him is that he is unreasonable, irrational, stubborn and doesn't listen to anything I say.

Good luck. Whatever decision you make (stay, leave, etc.) is the right one for you.

I know this must be difficult for you. I didn't know when I married that HD was in my husband's family. He didn't know either, so it was both a shock and a relief when he was finally diagnosed. We finally had some answers to his strange and difficult behaviors. I'll be honest, it's been 4 years since his diagnosis and yes, the first two years where extremely difficult and many times I wanted to leave. After a lot of prayer and support from my family I decided to accept what I couldn't change in him and learn what I could change in myself to deal with this. After all, I'm a military wife, and if I can live through the many separations during war time and throughout his career, with God's help, I knew I could be strong enough. .
It hasn't been a picnic, but as a family we strive to find humor in the ridiculous situations we find ourselves in on a regular basis. We've finally found the right combination of psych meds to somewhat control his unpredictable and sometimes scary behavior, and he seems to be much happier. As his brain continues to decline, I'm sure there will be many more adjustments to come. After 25 years of marriage, I can't give up on him, and I know if I were in the same situation, he would do the same for me. It's been years since I've felt that intense passionate love we had when we were first married. Now, he's more like that favorite sweater from the 80's that you can never send to Goodwill because of all the memories attached to it and even after many washings, it's still so comfortable.
If you decide to marry and your spouse eventually develops HD, these are the 5 things I think you must have in order to survive.
1) Strong sense of independence and ability to manage the finances and household on your own without being a perfectionist.
2) Support system, to include chuch, friends, family, and local support group or counselor.
3) Thick skin and ability to not take your HD spouse's remarks or actions personally
4) Job or hobbies outside of the home, that give you a sense of pride and accomplishment
5) Most Important: SENSE OF HUMOR
Good luck to you.

I just want to comment/compliment djcloc's HD caregiver's survival list...it is excellent and really puts things into great perspective!

djcloc's got a good list. I would add to expect being the scapegoat for the phd's family.
My phd takes his anger and frustrations out on me then tells his family what a horrible person I am. Never mind that they've only seen him once in 5 years. It hurt a lot at first and our kids don't understand why that side of the family is so cold, but I've learned to accept it. We live out of state so I don't expect anything from them.
I also understand now that most of their issues come from being at risk themselves and seeing their brother scares them.
They also subscribe to the "we refuse to test" group.
I just have to accept what is and handle what is on my plate. I love my husband and have to make the best decisions I can to keep him and our children safe.
Expect a lot of hurt and not a lot of support. Sometimes being strong is mistaken for being cold, but your true friends and family will understand.

Your post hits so clost to home. I wish there was the perfect answer for you. Something concrete to tell you that this is what you should do. But there isn't. Each of us has our own experiences, some may be harder than others. Some have had the blessing (or curse, depending of how you look at it) of knowing about the disease from the beginning, and some have not. Yet, here we all are in a somewhat similar place. All dealing with this devastating disease.

My story... I have been with my husband for PHD husband for 20 years. We met when I was only 19 years old and he was just 20. It was certainly young love. We fell for each other hard and fast. But the thing that was different for us than most couples was that he sat me down very quickly in our relationship and told me about this HORRIBLE disease that was in his family and told me that he was at risk. 25% at risk. Both of his uncles had it and his mom was at risk. If she had it then he would be 50% at risk. He told me then and there that he would not pass this on to his children. He had seen too many of his family members suffer with this horrible disease. Well, I was young and in love and thought he was so strong and in the Army and couldn't imagine anything being wrong with him. I told him that there were other ways to have children.

We were married 6 months later. True to our word, we sought out a doctor and geneticist and my husband refused testing, thinking it would be a death sentence. It was recommended to us to seek alternative measures to conceive a child. After 8 long years of fertility treatments, and thousands of dollars later, my twins were born through IVF with donor sperm.

Unfortunately, my husband starting showing symptoms when our children were very young. We kind of made excuses for the symptoms at first, but things started getting worse. He was finally diagnosed in 2010 with a Cag of 48. He is 40 years old now and is pretty symptomatic. He hasn't worked in several years, though he does most of the light chores around the house. I would be lying if I said that our life is easy. Things aren't easy. Our twins are 10 years old now. Their life isn't "normal". We do the best we can, but our situation is just different from everybody elses.

I can't say that I'd do anything different about my life, however I do sometimes feel a little guilty about what I'm putting our children through. The stress they have to go through. The fact that they are losing a parent at such a young age. The fact that their other parent is always under such extreme stress. It is very hard at times and this is really only the beginning.

On the flip side. Our children are so compassionate and giving. They are always some of the first to help out and lend a hand to others. They recognize when somebody is in need. And most importantly, they never look at anybody with a special need any differently than a typical person. For that I am most proud. It makes me feel like they will become pretty awesome adults.

Hi skybetweenbrances,

Firstly, sorry you've found yourself in this situation. I'm new to this forum and this is my first post because my heart went out to you and your boyfriend when I read your story. I actually found it through reading about some other HD stuff, then registered on here as I'd been meaning to. Anyway... please, please, please do not let the looming risk of HD ruin what you have with your boyfriend. You can still be with him, you can still have a life and have kids. His risk does not define him. There are many options available to you both and you have to make the decisions that are right for you two, so long as they're well thought out. I know it must be hard on you, but it really is your boyfriend's decision whether or not to get tested. As someone who is in a very similar position to your boyfriend, I have decided not to be tested, at least for now. I may be more inclined once better treatments are developed. I really believe there will be better treatments in the future and just perhaps even a 'cure'. There are a lot of great people researching this nasty disease and the advances they have made even in the last decade are promising. But nothing is there right now and the unknown is a scary thing (as you full well know!)

Now that you know I'm an 'at risker' (?!) as well, let me tell you this - it was heartbreaking to find out about my position and I have spent hours, days and weeks weighing up the pros and cons of testing. Since I found out I'm at risk, not a day has gone by where I haven't thought about it and it's draining and upsetting and frustrating. I feel like I've done something wrong, or done something to deserve it. I haven't, I'm a good, honest person and I'm now coming to terms with the fact that it's just the lottery of life. If my partner were to leave me over HD - my heart would be broken twice over. If you really, really love him, then please don't let HD get in the way of that. Do you really want a life without him? I know it's a massive ask, but he needs your patience and support at the moment. It feels like a huge cloud hanging over you but here's the thing... if you let it. Lots of things could happen to any one of us and it's important to keep perspective. I have had such a difficult year coming to terms with my situation and have been lucky to have people there to support me and I will be eternally grateful for their patience. I don't want HD in my life (even though it might not end up affecting me personally, but you know what I mean!) However, it has taught me a lot about myself and it's actually strengthened my relationship with my partner and with my mother. It's made me realise life is precious and has made me appreciate the value of what I've got. I'm coming to terms with the fact that I have to live with this and know that there are people worse off than myself too - so I am grateful I have not been dealt an even worse card, if you see what I mean. Finally, I can't stress enough the value of a supportive partner and/or family member/s. To be as loved as they ever were and to be supported in their predicament is absolutely invaluable to the at risk person and will, trust me, be eternally appreciated. And finally (I mean it this time) I know it's hard that things aren't necessarily going the way you would have liked them to - I've had to face that too. But life is still out there and if you really love eachother, life is still out there for you as a couple. Life often doesn't turn out as we wanted and/or expected, but sometimes we're suprised by the alternative and you may be suprised at how well you adapt. The ability to adapt is within us all, it is, afterall, a key attribute of the human race.

P.s. One more thing (!) If you stay together and have your life together, you will both need to be honest and very brave. If you feel this is within you, then go for it. Sometimes you may feel so emotionally drained by 'the risk' that it doesn't seem worth it, but in those moments, never forget the good things and the good times. Alot can go wrong, but a lot can go right too.

Well said I am a Marine wife married for 24 years, and on our second year of HD, like you we did not know about HD until his mother pass away in 2000, its has been very hard but we had adjust it so far just playing day by day I am stil able to work and someone keep on eye on him while I am away, my family has help me and I do feel very bless about that, medicine its working good so far, I am sure will have changes but we will readjust to it, the only problem is that I dont have any support group thats why I was so lucky to find this site this is my only releave.

-Some may think this is harsh but I am going through it and it is hell...HELL.?
I am alone, all my friends have gone, family checked out, doctors, nurses think I am crazy when I tell them what he does, people just don't believe us the caretakers.-

Fine words indeed. You have made my day! This is exactly how I feel. My wife is displaying all the symptoms and people think I an going crazy! Even our GP. He is totally dismissive of my insight. The psychiatrist briefly mentioned HD, off the record, as my wife refuses to go back to her. I still visit periodically, to maintain my sanity! My wife 's family have abandoned me and refuse to acknowledge anything I say. She has been peddling lies and confabulated stories - insane stuff - and this is accepted as the problem. I feel like screaming from the high heavens at people to take heed.
I would appreciate hearing from other people in similar situations.
Thank you so much.
Greetings from Ireland.

Wow this sounds so much like my husband and his family. His family lives two hours from us. When he gets angry he tells them all how horrible I am and they believe him, no support at all. I could just ditto your comments about your husband and his family, only thing different is they see him a few times a year.