Hi. I am engaged to a wonderful man who has a history of Huntington's in his family. His mom currently has it. We are getting married on May 2nd and I will be vowing to take care of him in sickness and in health. I am going to honor this so I wanted to join a support group/forum to prepare myself for what might be in my future. We don't know if he has it yet and I don't know if he wants to know. Also, We want to have kids and I don't know how fair it would be to bring a child into this world that might develop this disease. I've googled and researched but I want to hear about life instances and people instead of what the books and "Google" has to say. I have so many concerns and questions and hopefully this forum will help me. Thanks for listening and God Bless.

to the forum . I hope you have an enjoyable day for your wedding . If it was me ( I am an old Grandma ) I would put off overwhelming yourself with Huntington's Disease for a few months . Marriage the first year, is wonderful as well as stressful , I think a few months of focusing on yourselves would be a good thing . But , also I myself would , put planning babies on the back burner , for a while . Like you indicated you need to find out some answers , first ; Like does your partner have Huntington's disease , does he really want to know or not and a multitude of other questions . My best thoughts to you both . db

Thanks so much db. All of that was great insight. Have a good day!

I have two children ... both "surprises". In fairness though had my wife, who is now late-stage, planned on having children we would have. She was at-risk at the time and we were fairly ignorant. Now I have one spouse with HD and two at risk children. That's quite a leap from one spouce at-risk. This is an unpleasant position for me to be in. HD made the marriage difficult.. and now I am a single dad. It's okish. I would definitely take their being at risk off the menu tho if I could. You can with preimplantation testing. He doesn't have to test or know what they find.. they just tell you you have an HD free child. It's pricey but less than a car...small price for a child's health.

My kids didn't have a great childhood so just being born into the situation is something to think about as well. They got stuck with my vows. They weren't their vows and didn't even get the choice of breaking them. They will see their mom pass away after 10-15 years of living with HD. My oldest son barely remembers his mother as she was. My youngest never knew her without symptoms. It really sad knowing they may be her one day and it's tough for them to know it. It might be more palatable to me if I knew that they weren't behind the 8-ball too.

At least you have choices we didn't have like the Internet to help understand different implications of your choices. Or like preimplantation testing to have HD free children. Or even your husband testing himself at some point.

Many people's vows have been broken due to HD. It's one illness that is so encompassing of so many things that when the vow of "in sickness or in health" was conceived that HD wouldn't have been included as a sickness. Unfortunately HD has lead many people to have to separate because the symptoms manifest in behaviors that are not tolerable or are unsafe. I am very forgiving of that vow not holding up around here. It's very seldom from lack of effort to keep it. There are many couples that make it all the way through as well. It takes dedication and luck of what symptoms you have to deal with. Sometimes you have to think of your children before your sick spouse. It's awful to have to make those types of choices.. everyone is innocent and don't deserve to be chosen against. The more people you add into the mix..the more likely things will get difficult. It would be helpful to have his test to go on. But it's far from fair to insist on it. It is fair to ask him to consider testing. Sometimes the way a person feels about testing when single, and it only affecting them, changes when it encompasses more than themselves. It's ok to talk about it.

Thanks Eric. My biggest fear is the fact that if we have kids they will live in fear of getting this aweful disease. I have a 5 year old from a previous marriage and he has a 3 year old from a previous marriage. He is very afraid of her being at risk. I am afraid of that and afraid for all of our futures. You used the word "unsafe"....can you clue me in on this? Is it the mood swings and aggression? I'm terrified. I hope I'm strong enough for what I may have in my future. Thanks for your response.

Hi Erika, welcome to the forum although I'm sorry you need to be here. I hope you have a great wedding and I hope you can put HD out of your mind for a bit while you enjoy it. My biggest advice is to live in the moment and enjoy the time you have.

Patty

I agree with Eric 110% I'm one of the ones that had to break her vow, but waited until our kids were older as I could not face my kids spending weekend visitations with an unstable Dad.. altho it was NO fault of his own. My ex and I are at peace, recognize our love for each other and I see him as often as I can as he lives in another state in a NH now.

It is NOT a good life for kids growing up in an HD household. If you decide to have kids tho I would recommend the preimplantation testing. At least enjoy the child you have now! Pat

Eric gave you some excellent advice but for myself, taking care of my husband was never dangerous except for the fact that he might fall etc. If your future husband is willing to see a neurologist who understands the treatment modes and get on proper medication as soon 'if' symptoms occur you can live a manageable life for a long time. Honestly I would openly ask him that question and get it in writing now that he would do that. Establish a good rapor with a good knowledgeable neurologist 'just in case'. Once symptoms begin some are afraid or act depressed and it causes more unnecessary pain to those around them because early symptoms of depression and anxiety can be treated.
A very common symptom of the disease is an inability to control rage. If you are able to get a handle on a problem which seems to be arising before it gets to that boiling point then you will be ok. It is like heading off the posse at the pass.
Remember this disease can last a long time and the committment is all encompasing. It is something to think about and know that it is not easy, it changes your life. Would I do it again? Yes because I never thought of my husband as anyone but the person I married,a good man. It was the disease which changed him over the years. I know many people who had marriages which had terrible problems in other ways. A happy carefree life is never a given.

Thank you to both of you.

Bridie.....that was great advice. I do want to get a headstart on this disease just incase. I want us to be prepared and educated. I'm so glad I found this forum. I can't imagine life without my fiancee so I'm willing to risk whatever our future holds. I would rather have hard times with him than easy times with anyone else.

Thanks so much.

I'm not trying to put you off marrying. What comes, comes. You are an adult and can make appropriate decisions if you need to for yourself. Even if the the decision is self defense. My thought process was more geared toward the thought of children. His child is right now 25% at risk assuming it was by natural means. If he is HD neg. it drops to zero for her. Under the assumption he is symptom free now those children won't grow up with HD around too much or at most will be older children and more able to process it anyway. Some families do pretty well. I just happen to be an example of a downward trend of stuff falling apart. That happens too. I wasn't regretful I married Teresa. I regret I didn't have a clue that decision making about the disease was as important as it was. When Teresa and I finally got a clue as her relatives got ill one by one we made darn sure to stop having more kids. Any luck we may have been blessed with, we pushed far enough with two children. I say may have been blessed with, because I may have two kids, each with the gene also. But marriage is different. Come what may you can handle that and have a lot of good years either with or without HD.

Welcome, ErikaLynn!

Please understand, darlin' - that the vows "in sickness and in health" do NOT in any way cover the stresses of Huntington's. They simply do not!

I say this as one who HAS HD - and has grown up with it.

It seems that your at-risk fiance should be willing to have the DNA test for HD, so as to know for sure.

Sooner, rather than later........

jl



Edited 1 time(s). Last edit at 03/11/2009 06:33PM by jl.

yes, in some cases the word unsafe can include mood swings and agressions, but NOT in all cases. Also poor decision making skills. What one might think of doing but our screening process would never allow us to do, is sometimes poor with neurological diseases. At times the screening process is missing or impaired and someone with a neuro disease may do something they would never ever do when they were healthy. It's all something to think about with having children around. Pat

I think Eric's post has some really great points.

I was struck by the part in your original post where you say you know guys want kids but you don't know if he wants to know (about hd.) I think that knowing his stance on hd, even if his answer is that he doesn't know what he wants to do, is very important to know before you wed. I personally think it is very important to at least open up the discussion. And there were some great tips of ways to ensure that you would be able to get the right help if he were to start develop symptoms. I would put the hd discussion ahead of the "kids". I don't think anyone is trying to scare you but onset of HD often throws a person's regular "reasoning" skills right out the window. Maybe sitting down with someone on his side of the family might help you understand hd better if there were an aunt or someone available.

And one last thought, It was very difficult for me growing up in a household where I was the only child at risk for Huntington's. It seperates you in a way that is hard to discribe. Please promise to nurture this child : )

Good luck to you and your future wedding. Hope all goes well!