Let me first introduce myself, seeing as I'm a new member. My name is Stephanie, I'm seventeen and my boyfriend has tested positive for HD.

Before we ever started dating, I was friends with his friends. I heard things like 'Well, he only has so long to live" and "he's got to live it up now, since his time is shorter" and things of that sort. It was never in a demeaning way or joked about, but his close friends know and therefore talk about it. I always had my assumptions (that he'd been diagnosed with something that shortened his lifespan) but I never asked anyone what he had.

About 7 months ago, he decided to move out of state. At his going away party 5 minutes before he left, I kissed him because I wasn't sure if I'd ever get to see him again. We talked via facebook pretty consistently, and he tells me now that he couldn't get his mind off of me when he was gone. Lo-and-behold, three and a half months later, he had to come back to living in Wisconsin. We immediately started hanging out the day he got home and we went out that evening to a friend's house. While outside having a long discussion and a cigarette, he started talking about his mother and her HD. Eventually, we came upon the subject of his test. I asked (very bluntly) if he tested positive. He paused, but then told me he had. I accepted it immediately and told him so, which I think came as a surprise.

Now, three months later, we're still dating. He's the most amazing person and I feel like the luckiest girl just to know him, let alone be his. I'm also incredibly grateful of the fact that we found each other so young, because we have all of this time to be together before he starts to show. I was the kind of child who never fantasized about my wedding or having a family of my own and, until I met him, I grimaced at the thought of it. Now, I'm not saying we're going to jump the gun, but it's something that I don't oppose anymore and I really feel like we will get married within the next few years.

I see his mother every day, and she's (pardon my knowledge; I've yet to learn all of the terms) pretty far in to her HD. I think she is a wonderful woman and I enjoy spending time with her, as well. I was appalled when I heard that, in previous relationships, his girlfriend's had a very hard time with it. One even went so far as to never even acknowledge her presence. His father and mother separated when she started showing signs, but he now lives with her. I don't know the story, but I always wonder if it was because of the HD. I've thought about asking his father to sit down with me and discuss his side of the story, but I'm a little too shy.

So, my question is, would anyone like to share their story of being married to someone with HD or being married with HD? Or would anyone like to give me some advice as to what I might expect and how to cope?

Thank you all so much. (:



Edited 1 time(s). Last edit at 12/22/2011 02:39PM by Stephanieleigh.

Welcome to the forum Stephanie! I think that you could really benefit from reading some of the older posts on here. The problem with HD is that you never know how someone will present with symptoms. My husband has had anger issues and is now in a nursing home, but not everyone has the same experience. It's possible to have many great years despite HD, but being a caregiver as the disease advances can be very difficult. It's a decision not to be taken lightly. How old is your boyfriend? Is he showing symptoms? You are very young and I definitely would not jump into anything. If I were you, I would do lots of research and read the posts on this forum.

Wow. Sounds like a pretty serious relationship for 17. Sounds like you didn't go looking for it, but have found an amazing connection.

I met my now-husband when I was 14, he was 17. We married at 24 & 26, and have been married 11 years now. And as Michael J Fox once said, I would definitely say my life has been "front-loaded".

My grandmother had HD, but she got it at a relatively old age, so it was not as much of a shock; and I'd been told as a kid not to worry unless Mom got it. Well, it was 2 years ago that I realized Mom does have it. And I tested positive that same year.

I still don't have any symptoms (even though many people with HD don't recognize their symptoms). I can't really tell you how HD has affected our marriage. But I can tell you that almost every day, I think about how I can make things easier for him in the future. I have a great husband. He even arranged for us to renew our vows for our 10th anniversary, which was the first one we celebrated after my test. That was really sweet to know that he would marry me all over again.

My parents have it very rough, and I'm sure you'll get other stories. Irritability has been my Mom's worst symptom.

It was even tougher to deal with her irritability before we understood the cause. And I'm guessing that may be what happend with your BF's parents, splitting up when he thought they were just having disagreements all the time, & getting back together after he realized it was b/c of an illness....

I think that if we KNOW what is coming, we can be much better prepared than our parents' generation. But that does not mean it will be an easy road.

I also believe there are lots of things in the pipeline that could cure or really change what it means to have HD. But even if you expect the best, you should be prepared for the worst. Read whatever people post here + some other posts for a slice of life with HD, and decide if you think you could really stick around through that. If you can, great. If not, it's better to be honest now, than hurt him later when he may be more vulnerable.

No matter what happens in your future, I'm glad you've found eachother now.

You are so very young and full of optimism. My son is 24 and at risk. He has not been diagnosed yet and plans to marry in the next year or two. His fiance is 27 and is aware of the possibilities. They've been going together for about 4yrs-before his father was diagnosed. In that time she has gotten her master's degree and has a very well paying job. She also has a considerable income outside of her profession. They have decided to test before they have children and she has the resources to insure their children will be "healthy". She has a large and very strong support network of family and friends. They also plan to get life insurance and long term care insurance before he's tested. On his part he keeps himself as physicaly healthy as possible. He doesn't smoke but has an occasional drink. He exercises, eats very sensibly, and has begun to take supplements that may help. He keeps himself informed. They're trying to cover as many bases as they can but it doesn't keep them from having a wonderful time right now.
My husband, had no obvious symptoms until he was in his mid 50's. However, others have not been so lucky- young mothers, unaware their husband's were at risk, becoming the sole breadwinner for their families, raising young children and dealing with physical and/or personality changes in the man they adored- much too soon. They had hopes and dreams but those have been replaced with fears, sometimes isolation, and overwhelming responsibilities. It breaks my heart to hear their stories. At one time they had met an amazing man too.The future they had planned evaporated but still they persevere. I can't begin to imagine how they do it. My husband was very laid back and easy going but even he has had to deal with violent tendencies and depression in the last few years. Some have had to take measures to protect their chidren from their own fathers. Very hard decisions have had to be made and often there is no win/win solution. At seventeen you really have not had enough life experience to even begin to know how hard life can be under the best circumstances, let alone the very real hardships of devoting your life to someone with a devastating condition. Your boyfriend is lucky to have someone as accepting as you. Stand by him but be aware that things often change as you both continue to grow. What may seem very noble and even romantic now may not survive reality. Pray, as we all do, that there will be a breakthrough in treatment or a cure may be found. Keep yourself informed and read other posts here.

Best Wishes,
Audrey

You sound like such a sweet young girl!! It is so difficult to tell you how HD effects relationships/marriage, because everyone and every situation is so different. If you look back at old posts, you'll see that everyone has had different experiences with HD. It is difficult, though, that is for sure. I was caregiver for my son's father for years. We were married young and shortly after we were married, he started exhibiting symptoms. It was very difficult and eventually we divorced, but still lived together as a family, because even though I didn't want to be married to Ray at the time, I knew I always wanted to be there for him and help him as much as possible. Obviously, this is because of the deep love and affection I always had for him. Things were difficult, confusing and scary on many levels way back then, but I'm so grateful that we stuck it out, because once we got through all of that, in the end, I was so happy and blessed to have been a part of his life. He was such a special person, who suffered so much. Eight months ago today, he passed away, and I miss him so much . . . I don't think so much about the bad times, I think about the blessings that we shared, especially our beautiful son. It is not easy,though, it impacts the person with HD and their family profoundly . . . I was lucky to have a very strong family and friends support system, without them, I'm not sure I could have made it through some of the dark times. Years ago, I remember asking why this would happen to us, why does Ray and our family have to endure this, but I've learned and strongly believe that people come into your life for a reason and sometimes we don't realize it right away, but it's to affect us and propel us to be better or do better. I'm sorry if it sounds so mushy, maybe it's because it's Christmas time, but i'm feeling very emotional/sentimental.

No matter what anyone says (because people told me to run - and sometimes I wanted to), when we find someone we love, I think the heart does all the thinking. You are young, though, so I wouldn't rush anything, just enjoy your relationship, be friends, enjoy good times, concentrate on your future goals, whether it be college or work and have lots of fun!

Bless you for not writing in chat room shorthand! You write with the maturity of someone much older. You'll be fine wherever life takes you

Will.