My husband will be 36 in June and stumbled upon an unknowledgeable doctor who sent him for genetic testing w/no other follow up. The end result was our worst fear, he has HD. My husband's father had HD and was diagnosed while in the last stage of the disease and was by all accounts, a bad man. Abusive, alcoholic and just plain mean and when my husband's mother committed suicide, his father disappeared. He reappeared later in life after his diagnosis, pleading forgiveness while sharing the impact of his diagnosis. I am explaining all this because it is part of the issue with my husband and my family and how we are dealing with this. It is my husband's worst nightmare to get a devastating disease from a man who did nothing but cause him pain and even after his death, has managed to hurt him again and exposed my kids as well. I know it is not his fault but it is a bitter pill to swallow.

That being said, the specialist in our area last year agreed w/the genetic test, my husband had the gene but he was showing no signs of the disease. One year later, same specialist, different diagnosis. "Start the clock" he says. Start the clock ticking on my husband?s life and our terrifying future. I have researched everything I can with this disease while my husband pretends it is not a part of our lives. I understand why. I can't make him face it but I have two small children to worry about too. No one asks how I am doing with everything, the focus is on him. I do not need to be the center of attention but it is hard when I feel like I was diagnosed too. I am scared and alone in this illness that isn't even mine. How can you be hopeful of a future where your spouse has just been given a glimpse into what our future can be and he chooses to lay down and die so to speak. There is no fight in him for this disease. He doesn't want to talk about it. He doesn't want to read the research. He doesn't want to do anything.

I have a hard time not chalking everything about him to HD. All the symptoms in the research are a checklist of my husband. How can I help him? Can I really love him through this? I am only looking for encouragement here but I am hoping you guys have something to say because no one else seems to understand what is happening to my family.

Please tell me, how do I help him? How do I keep from losing the man I love to the symptoms and issues of this diagnosis?

My heart goes out to you. While I don't know exactly what you are going through, we too are going through something similar. A little over a month ago, my father in law was diagnosed with HD. He is 60 years old, but has probably been symptomatic the past 6 years or so. As far as we know there is no family history. We are 33 years old and have 3 small children (5, 2, and 6 months). My husband is not displaying any symptoms and has not yet been tested (although he will this summer).

It has been a rough month. I know how you feel. You are not alone.

This is new to us too, but I wanted to welcome you here and tell you that I am sure you will get a ton of great responses and support. Honestly... I have searched every HD website known to man and this is by far the best place. These folks have a ton or experience, knowledge, hope and support for each other.

Thank you Jodie. It is hard to say and I hope you know where I am coming from but... it is comforting to know there are others out there dealing with this. My kids are 6 and 7 and we haven't talked to them yet and frankly I can't bear to think of what this diagnosis means to them and their future.

I do appreciate your encouragement and I will keep your family in my prayers.

I'm so sorry you're dealing with this but welcome.

Of course your husband's current apathy could very well be a symptom too, but did the doc prescribe anything to help with that (like depression meds?).

It seems as though if the "clock" just started so recently, that your husband should still be able to have some quality years, especially with the right meds + perhaps more time from the shock of the diagnosis.

And as a gene-positive person myself, with a difficult relationship with my Mom for most of my life (due to HD), I hold onto the idea that there is no reason I have to react to the disease the same way as she did.

With both of your eyes wide open, the right attitude (even though he doesn't have it at the moment), and pushing your doc to be as aggressive as possible with the latest meds (try Memantine), there is nothing to say that your husband will have all of the same issues that his dad did.

Not to say it will be easy of course. But this is NOT his Father's HD. They are different people, and this is a whole new era, improving every day. I hope you find the support here, to make the best of your difficult situation.

The doctor said to continue with the meds he is already taking which is Welbutrin & Abilify. He has been dealing with depression for the majority of his life so he has bene on those meds for awhile. The doctor said he didn't think disability would be approved yet and his symptoms were not severe enough yet to warrant medication. That part is good news but I am trying to prepare for the future when things seemed to have changed so drastically in just one year. Where will we be next year? The year after?

You are right in your idea on attitude. Attitude can impact a lot and I guess part of me is waiting to see the fight in my husband to say, like you did, this isn't my mother's disease. I can be different. I may have to accept that he will never approach things that way.

Thank you for your response.

My wife is late stage and in a little different way I kinda had similar feelings and ideas. You will have to find your own internal coping methods... however if you stay isolated they get to be weird coping methods. So don't. You may have a person in the future who is always fairly similar to this person or you have one who evolves into one you don't recognize or even like a lot. No matter what, you will usually be of two minds going from understanding to less tolerant and back.. because HD gets ahead of you sometimes. You have assess love and "in love" sometimes... and decide where you fall on that, and what is the more important. Just because he wants to ignore it though doesn't mean you have to. Be involved however you want to be and talk to who you want to talk with. It will help you and help you to help him. Plus look at the cycle of his family... you have kids and you don't want it to continue for them. They may not always enjoy being around dad in the future, but you don't want them to have to reconcile hate of him. They will need a healthy understanding of him, what is up with him, and to not be scared of HD themselves more than is necessary. They have a more opptomist HD future than dad does, and dad more than grandad did.

Don't panic... it's slow so you don't have to have everything thought through this week. But adding to your own knowledge is gonna be a plus as things move along. Getting a general sense of things and what philosophy you want to try and follow from that sense is at least a roadmap... you might switch roads along the way though. You do want to at least have some expectations for your kids ... that they have some compassion, some responsibility, and good coping skills themselves.

HD isn't a walk in the park... not even close... but a lot of it is manageable. Manageable for him, for you and your family. So start there, with the idea you are gonna manage things, then listen, learn, and share so you can do just that. There will be tough management decisions sometimes... but having a foundation of knowledge makes for the best decisions.

HD was a complete surprise in our family too (husband's dad diagnosed when he was about 80 year old and we'd already had our son). My husband ignores it too, but in a healthy way I think. He's been taking fish oil and blueberry since we discovered he's gene postive, but now at my urging he's starting creatine, CoQ10, trehalose, vit E and unbiquinol (if you're interested, go to the search button on this site and type in supplements). My husband says, "We're all going to die of something." I agree, but I think I do understand how you feel. I have great anxiety especially at night when I have time to think about the future. I feel I will be able to care for him when he becomes physically disabled, but I don't think I could tolerate it if his behavior turns abusive. I feel a sense of grief when I think about him being here physically, but loosing him mentally (his personality). I feel very afraid of our son having inherited the disease. The list of worries goes on and on...but I also try to say, "Why borrow trouble? Try to live your lives to the fullest and enjoy each other in this very moment." I guess to summerize, use this knowledge to try to help your decissions in planning for the future. Try not to use it to make yourself sick with worry (easier said than done because I do that too). I think there are some studies out there dealing with how spouses deal with HD. Maybe it would help you to talk with someone about it. Just finding this site has helped me. People here understand and care.

Wow... Eric, thank you. That is a very insightful and much appreciated. Thank you for your perspective.

All of you have been a huge help. I cannot say thank you enough.

Welcome to this site - I have found it to be very helpful and it looks like you can already see the value. My husband has HD and we have 2 kids - 5 & 8. My husband is symptomatic but early and we have not said anything to the kids yet. We'll cross that bridge when we feel the need - so far there is not a need.

I think what Eve said is very valuable - live your lives to the fullest and enjoy each day. That being said there is much to do to help the situation and you can learn about that - supplements, clinical trials etc. Unfortunately much of the burdon falls on you - particularly since he is resisting coping with the disease.

My husband started to feel symptomatic a while ago and it was very difficult for him to accept - he started drinking to cope (which doesn't help matters) but I mention it because it was a long process to accept the reality and get proactive. Your husband may need time for this to sink in, maybe he'll need some support to help him cope with the anger and not let the anger control his ability to make the most of his future/your future/your kids future... all so intertwined.

I wish you luck... the hope of treatment and cure keeps me going - there is a lot of good things coming down the pipeline... the longer you can keep symptoms at bay the better shape he'll be in when that cure/treatment arrives. Would he be open to staring any supplements? Does he exercise? That helps a lot too...

Do not be afraid of your doctors "start the clock" comment. That clock can have a good lifetime on it, perhaps hard at times, but it can still be good. Your husband may be in denial now but that doesn't mean it will last forever. Continue to talk to him about it. He will eventually come around if he does not want to cause your children the pain his father caused him.

I personally grew up with a father with HD, but in my family it was kept a secret. No one in my fathers family thought to mention the history of the disease to my mother or us children until it came out years and years after his onset. As a child I could never understood why he was the way he was. And as a teenager it was devastating to watch him fall apart with no explanation and no way to help. It didn't come out that it was HD until I was in my early twenties, and by that point I was only relieved to have a name and something I could research to understand. While most people feel devastated to have their future taken away I only felt angry that I had already lost my childhood. If your children are six and seven they are already very perceptive to the mood of your house. You do not need to come out with everything all at once. But let them know that their father is having a hard time and that they shouldn't take it personally. Chances are your children are going to grow up much quicker than they should have to, but if you are open and all in it together it really will be easier in the long run.

I myself am also new to this forum and can tell you that the support you will find here is irreplaceable.

I'll add my welcome. I must say that the "Start The Clock" comment is one of the most callous things a doctor could have said. You won't get that here - just support. People are fighting the disease and winning. You didn't need an ignorant remark like that.

Will

Hi , welcome to the forum .I agree with many of the thoughts expressed to you already . One thought I always have when someone is new to Huntington's Disease , is "take your time , getting used to this new information" .( If you can). Anything new takes time . Your children are young , they need only simple age appropriate answers to any question or situation . Children just want to know they are going to be alright in any situation in their lives . If possible give your husband some time to adjust to his new information .All of my best. db

Welcome. As you have already seen, there is a lot of support and Hope on this site. Lots of it. I'm so glad yopu came here.

Paula

Welcome! I'm glad you've found us.

I think you've already had some great answers, so I'll just say that many of us understand how you feel. My husband tested + last january. He's not symptomatic yet but I understand the not wanting to talk about HD at all because that was his attitude when we first found out about HD in his family. I think the best you can do is to try to find a balance between pushing the issue and giving him time to get used to the idea of having HD.

Take care,

Luz.

Thank you again to everybody. You are right, there is a lot of support here and I truly cannot tell you how much it means to me. I am trying to be hopeful during this time and you have all lifted my spirits immensely. Thank you for your kindness and your suggestions, they mean the world to me. I will continue to look here for support and help others where I can.

Thank you.