Hello Everyone,

My bf has been recently diagnosed with HD, CAG 43 repeats. He is only 26. Recently he started showing some signs like involuntary movement in left hand, some forgetfulness. But overall nothing serious I believe. The worse part is when he found out I was not there with him since I am out on a job related tour for 6 months. We have been together for 7 years now and were planning to get married this year. The news has been a death sentence to us both. He does not want a family or marriage anymore and I am tired of convincing him otherwise. He is scared of all he has read about HD and so am I. He refuses to live till the time things go that bad. I want us to get married and have kids through IVF and PGD. But he does not want a family so that it is easier for him to end it all when it is time. The doctor has told him 10 years more he has till the onset of the disease.
I want to be there for him when things go bad but he refuses. Has anyone been through the same? This disease is killing the most beautiful thing in our lives and I am finding it difficult to cope with the turmoil. I am so confused as to what is the right thing to do.

A

to tell the truth I think your boyfriend is doing the write thing.
hes trying to protect you him and a future family and I think hes right.
there are very few people who deal with HD well either as a person with HD or as a caregiver.
and what children would not be effected by it. I know my husband and children are really impacted.
Laura

Sorry to hear about your boyfriends results. As it is very recently he received his results it may be a while until it all sinks in for him. He may be willing to discuss things more with you after a while. Like Laura said above he is just trying to protect you and any future family you may have.
Also I don't think the doctor should have said it will be 10 years time until the onset of HD. My MIL's cag repeat is 45 and we have just started to notice some symptoms and she is in her early 60's. Take care xx

A- It could've, and still could be, my son you write about. I don't know if there is a wrong way or right way to deal with the situation. My son and his fiance have gone in another direction but are they inviting more heartbreak down the road? We don't know. What I do know is that whatever my son decides I'll back him up. If he tests positive, it will be his disease. It is his life. I can only see myself respecting his wishes as I have tried to do with his father. And his fiance-we love her very much. It would be a great sorrow to all of us to lose her if he rejected her. She is sweet and kind but a very strong young woman. As much as I know she loves him and would want to stay with him, should he call the wedding off, she, too, would respect his wishes. It's a tough choice many of us did not have. Your boyfriend may not feel that he is emotionally and/ or physically capable of dealing with this disease and a wife and children too. Your heart may be breaking now but in my limited experience with a husband who has Huntington's my heart breaks over and over and over again and, as for now, no end in sight. I think Laura is right and I must say I admire your boyfriend for his selflessness. I pray you both find some measure of peace and acceptance.

Best Wishes,
Audrey

I go back and forth over this. I guess that there really is no one answer to give to this very, very heartbreaking situation. You both seem like such good people. I pray that you are able to make and accept the decision which will bring you both to the right place.

Welcome to the board. I'm sorry you and your boyfriend have been dealt this hand.

Can I ask if your boyfriend has had a lot of experience with Huntington's through other family members? Has his pessimistic outlook developed from dealing with other relatives, siblings or a parent with HD? Or is his fear there because HD is new to him and he's scared because of what he's read about it?

And does he have other family members who know about HD who he can sit down and talk to?

Welcome.

Hello AG...I know the feeling of your life turning upside down when you are so young you have so much planned and all the anger and fear- every single thought you have had; has been one of mine or any others on this forum. My husband and I just got his positive results and we are about that same age. We are wanting a family though.

Give it some time for him to cope with the news and make sure YOU cope with it too. Some of his feeling about not wanting kids or marriage are probably a normal reaction to finding out the news because he doesn't want to hurt you or future kids. I know my husband mentioned not wanting kids before testing..but in his heart he does ..I think it was him telling himself-if we can't have kids I can deal with that.

Just be as positive as you can and just let your self be happy. Show how positive and strong you are about the results...maybe it will inspire him. Take a class (dance karate cooking), go fishing, go hiking, white water rafting, kayaking, go on a retreat, sign up for a marathon half marathon tri-atholon 5k--do something--huntingtons or not we are only young strong and have healthy metabolism rates to eat whatever we want for a limited time.

You are probably thinking how can I show him how strong I am about the results when I am not strong at all, so it is OK to breakdown becasue it is all too much....just find that one buddy or family member you can lean on and that can help you just get back up. There are so many other things that can break us down to our knees for help, but we have to get up. If we don't get up, then we will stay down forever. Part of getting up is letting go of trying to be strong and trusting that everything will be ok. For all we know either of us can be gone tomorrow or in five years or get some other disease. For me, church and learning about my religion and growing my faith has helped me more that I ever thought it would.

I would also agree that the Dr. should not have told you you have ten years till the onset... I am sure he was just trying to give a range. I think the cag and family history (others and when they developed the symptoms) both come into play with the age of onset. I also want to say becasue I believe it myself that the mindset of the individual will also have a lot to do with how HD is expressed.

I wish you two the best and remember no matter what let yourself be happy and live positively.

I wouldnt give up the time I had w my husband while he was symtom free and that is what I focus on. we had children 18yrs ago and didnt have the chance to test ahead of time but he(your bf). may deciede adotion,IVF is a good idea later give him time. My husbamd is the love of my life it is stressful but i cant imagine any other life some people marry perfectly healthy people and live bad lives. He is still in early stages I will go through a lot I know Ive seen 8 of his family members go throught it but i so far have 21yrs of a happy mrriage and more to go

Welcome AG.
i agree with the others here, the news is shocking, but you do go on. His thoughts may change once the news has time to sink in and he can process it. Ask him to do research on some of the promising treatments that are in the pipeline now. I try to focus on the hope of a good treatment or dare I even say, A CURE! Both of my sons have HD.
Take care.

Carla

Your situation sounds 100% like mine was at your age. My husband and I have been together since I was 16 and he was 17 (I'm now almost 38, and he is almost 39). He did not want to get married until he knew his results and was too scared to test. Eventually, he changed his mind and we were married when he was 28 (almost 11 years ago). 8 years ago May 31st, we received his test results...positive CAG 42. He is still not showing any outward signs of HD, however, mentally feels he is feeling it. He did not want to have children either, however, 3 years ago this May we went thru IVF PGD and have twin boys that are almost 28 months old. They are beautiful. Hang in there. The tough times for us are still to come, but I wouldn't trade these moments for anything! If you want to chat, please feel free to send me a message. I'll help you as much as a can! Best of luck!