Hi, my name is Dana and my husband and 2 children are at risk. I will tell you our story, it will be long and I will probably ramble so please forgive me. My husbands father's side of the family carries the HD gene. His mother gave it to him and pretty much all of his siblings. He (my father in-law) died last summer from HD, he was in his mid 50's, his siblings have either died or are in nursing homes. When the hubby and I started dating he had not seen or heard from his father in years. His parents divorced when my hubby was around 2yo and he had very little contact with him after that. My father in-law moved on with his life got remarried and had 2 more kids. Oh, btw my hubby has a sister too. So that is 4 kids from this man (1 biological sibling and 2 half siblings). When we got married we knew nothing of this disease and that he had a 50/50 chance of having the gene and giving it to his children. If I would have known I still would have married him, but would have gone through IVF to have children. We did not find out about it until his father was in the middle stages of the disease. My hubby went to visit him but we still had very little contact with them. I think I had only been around him maybe 3 times and I always found him to be kind of strange and silly, but a really nice guy. Still not understanding what HD really was we went on with our lives. My hubby's sister kept in contact and would visit her dad and his family, so we started getting more info on what was going on. I started doing some research on HD and boy did it hit home and fast. Not only could my hubby have this disease but all his sibling and our children.

Real quick, we grew up in Southern California, but moved to NC about 5 1/2 years ago, so we are 2000 miles away from any of our family. 2 years ago when we went back home for a visit I started noticing his sister not acting like herself. I talked with his mom about this and she just kind of danced around it, but I knew what it was. That was the begining of her private hell and the families realization that she was sick, but no one wanted to face it and so they acted as if everything was great and normal, but I knew other wise...but went along with it. Last summer my father in-law died of HD and in November she called to tell us that she had tested positive for the gene...cag 43 just like her dad. Of course my hubby was completely distraught by this news...his big sis was going to have to suffer this horrible disease and her 2 girls were going to have their wonderful loving and caring mother taken from them. How we got through the holidays, I still don't know. Us on the east coast and them on the west coast, all I wanted was to be with them. I cried a lot when the hubby and kids weren't around, just knowing what they were having to deal with. I wanted to be there...I wanted to fix everything, but this is something I can not fix. That is how I work, I am the one who will find a solution, who will be proactive and get out there and make everything better. So here I am 2000 miles away looking for meds that can help and foods and vitamins she should start taking, but she does not want to try anything. Her doc wanted to get her into drug trials, but she will not go...she now even refuses to go to the doctors. They refuse to tell anyone about what is going on for fear the girls, ages 11 and 12 will find out that there mommy is sick. I'm pretty sure they already know something is going on...mommy is just not mommy anymore. She does not cook anymore, she can't do her hair or makeup, she is in bed for sometimes days and drinks a lot. They say they will tell the girls when they are in high school...ummm, not to be a bitch, but I really don't see that working out so well. I get that they don't want to scare the girls, because they did have contact with the grandpa and saw him at his worst, but these lil girls are already confused and don't understand why mommy is mad with them when they did nothing wrong. Why she goes through the house screaming and then goes to bed for days...mommy is not like she use to be and they know it. So everyone walks on egg shells around them and acts as if everything is okie dokie when it's not. Luckily my mother in-law and I are very close, I love her like I do my own mother and we have each other to talk to and cry with, but I am 2000 miles away and she is dealing with this everyday and she has no one she can unload on because it is the family secret. My brother in-law is doing his best trying to keep it together for the sake of his family, but I think he is about to snap. His family has no idea this is going on, he has a brother, sister and mother who would be there for them, but he refuses to say a thing because it is the family secret. So he is angry and sad and trying to be the best dad he can. He told my mother in-law a few months back that when he hugs his girls he is hugging HD. This whole family needs the support of each other...this is a family diseaes, not just one person going through this by themselves, but it will remain the family secret. We are going home to Cali for a month in June and I can't wait to see everyone. The hubby and I have 2 beautifuls kids, a daughter 9 1/2 and a son 6 1/2, I wanted to prepare them a bit and tell them that their auntie is sick, not to get into the details, but just so they know that she is a different person from the last time they saw her. I am not allowed to though, so now my kids will be confused and have questions...I am not ok with that...I am not ok with this family secret.

If someone could get your SIL to a dr and get her on a medication or two it might make a huge positive difference at this time. Someone
could go with her advising her that the appt is for both people going - just take her or whatever works. It would be best to let the dr know
what is going on and what you would like prior to her appt - a good psychiatrist would be the most beneficial (could tell her it is a counselor),
etc.
If she is not on an antidepressant that may help and also something like a low dose of zypexa, etc. may make a huge difference for her.

She could be told these medications will help the HD and to try them and after a period of time see how she feels. I would bet she
would stay on them.

Just a suggestion - good luck to you.

You have found a wonderful website full of wonderful people, with tremendous advice.

Welcome. This is such a tough situation. Secrets are hard on everyone.

Hi, I am happy you found this site. You will find lots of comfort and support here.... Before I say what I feel is most important in these situations, I'd like to share with you how I became a member of this "select" group. My husband has HD and my daughter had the juvenille form. Like you, we were not initially told of HD and due to an estranged family relationship back to my husband's grandparents there was no history at the time. So when we noticed "symptoms" in my MIL my hubby was given some strange made up diagnosis as an explanation as to what his mother was going through.... Well that was until my husband brought my MIL to the doctor and the doctor asked my hubby his feelings on HD and having a 50% chance! Talk about shock!..... ok, have a nice day, drive home those 50 miles----- see you soon!

subsequently, my sister in law and brother in law were diagnosed when our daughter was 2 yrs. old and my hubby (her father) when she was 3yrs old.


So now that I gave some history,,,, and experiences.... I feel a little more comfortable in replying to this comment you made in your post.... " I wanted to prepare them a bit and tell them that their auntie is sick, not to get into the details, but just so they know that she is a different person from the last time they saw her. I am not allowed to though, so now my kids will be confused and have questions...I am not ok with that...I am not ok with this family secret". YOU ARE YOUR CHILDRENS' PROTECTOR AND PARENT... YES YOU ARE ALLOWED TO DO WHATEVER NECESSARY TO PROTECT THEM, GUIDE THEM, PREPARE THEM.......with that said, I had a comparison model with my daughter and other children within the family... she knew the illness prior to her father's "obvious" symptoms... she was informed by us, her parents what the disease did to personality and she was MUCH more comfortable being around family members who were symptomatic... she was more sympathetic and willing to help rather than frightened and avoidant as the other children were!

So with all my own rambling... I just wanted to be a support for you in relation to your role as a parent and the heart wrenching decisions that you are and will continue to face!

Stacy

Thank you all for your input, just know that I am wrapping my arms around you and hugging you so tight. Besides watching my father suffer and die from lung cancer this is one of the hardest things for me. To you Shar, my SIL is on meds,but she still seems to be not wanting to face it. We have talked to her about seeing a therapist, but she refuses to go. If it was up to me I would put her in the car and just take her there, but no one who is there with her has the strength to do that. Why??? I still do not know. Stacyw, thank you for sharing your story with me. Let me tell you what happened this weekend. I took it upon myself to tell the 2 other sibling who are at risk that their sister was gene positive and is now suffering from this horrible disease. They are in their early 20's and wanting to get married and start a family. I needed them to know that this did not end with their father, that they needed to be responsible adults and not start having kids without getting checked themselves. Saturday morning my brother in-law called and was very upset that I told them about her condition. He said that it was not to be told to anyone about what was going on with her. He is so afraid that his girls will find out. So I became public enemy #1. My husband was very upset with me that I would go and do something like that. I wanted to yell and scream, HELLO PEOPLE this is not going away, we can not cover it up. The only one who understands is my MIL, she feels the same way I do. I really do not want to piss off my husband by telling my children anything, but I feel that I need to. So here I am stuck between a rock and a hard place, damned if I do, damned if I don't.

Having grown up in a household where we weren't told until our late teens......I can definately say that all of us knew something was very, very wrong. I was a very fearful child and now adult. My mother would lie in bed for days on end, and not eat. She would lash out in anger and would withdraw from us months at a time. She wasn't at risk....it was my father. She was convinced we were all going to get it and she was in turmoil over how she would cope having to look after all of us and pay the bills. I think also she was worried about the possibility of her children getting it early....since the gene was being passed by a male. She was terrified and I understand why. Looking back now I wish I had known because my mind was certainly going overtime to what was going on. It certainly is a greiving process for everybody. Growing up around secrets and lies was painful, I understand why they didn't want to tell us but I think the not knowing was for me more hurtful. Now still as adults we keep to ourselves and say nothing..... I try to talk about it but my other sibling don't. It's like we just all suffer alone filled with anxiety and fear....hoping that we won't get it.

Rest assured you did the right thing telling the other two siblings, no shadow of a doubt. Can you just imagine them getting married, having kids, maybe God forbid, one of the kids having JHD, THEN they found out the family knew? These family secrets are INSANE.

I also would tell your kids to prepare them. Until I got MY brain wrapped around my former husband testing positive, I told my kids their grandfather had a neurological disease and that he would be different and have some movements. After I was stable with the news, a few months later, THEN we told our kids the rest of it. You can respect their wishes by not calling it HD, but a neurological disease. Has your husband decided to test yet? I am one of the few that believes if there is a wife and kids involved, it's morally right to test for everyone's sake, but not everyone feels this way.

Good luck with everything, and keep us posted. Pat

This is such a difficult situation, but I truly think you did the right thing.

My biological mother wasn't going to tell anyone about being diagnosed. I'm adopted, so I never would have known if it wasn't for one of her friends who had the courage to contact my biological father and tell him what had happened. I'm also at the point in my life when I'm thinking about settling down, and luckily I don't have any children yet. I'm so very thankful I can prepare for the future.

Generally people here are over estimating what we know about HD.My mother was dxed with Huntington's Chorea probable which was not confirmed until autopsy after her death at age 63. My sister saw Dr. Barbeau and had a diagnosis of HD probable until her death when it was confirmed bby autopsy. HD is the first genetic disease. Before the blood test we simply decided whther we would eradicate HD by having no kids as my sister did or hope for a cure and have kids. Dr. Barbeau did my genetic counselling and said No kids was the fastest way to get rid of the disease. He also loved kids and said there was a time ption of how long I would live before it started, and the longer time that each child would hjave, and hopefully by then we would have a cure.

This is the advie of the Doctor who went to Venezuela with Wexler to dx the HD, and no one else on earth knew more than he did about HD. So each person with HD in the family was told this as a best possible method to handlethis disease in your family.

Other people who looked at public health cost of disabilities, mental illness retardation and HD would sterilize them against their wills. In the late 60s Etobicoke the boruogh next to where I lived in toronto passed a bylaw to sterilize me with HD./ I was so frightened that I moved to another provinceWhen my mother died her death certificate said she had a heart attack.

As you may know my CAG is 47 and moving from mid to late HD. I have children but my family has asked me to keep them off the web. Its quite funny because I don't do HD on facebook but search engines today are terrific and pull up marvellous stuff.
So in 2000 it became obvious to me that I had lost the HD toss and was happy to have a test. At the time that we tested people with 39 cags were told they ddd not have HD, did not have worry about the next generation. o each step in research that comes along the more enthusiastic are interpreting this or that. I would abort s child with HD ,it is a horrible disease. I have worn out my neck with the head movement, had botox and am due for more botox this week. Also have to have the reest of my teeth out and I'm woprried that I will be in pain at home and not able to swallow the pain pills. I am still playing the piano, but am fed up with the expectations of home health care, I have no more physio at my home and have to go a hopsital once a week which doesn't cut it.

Generally most doctors don't know that much about HD or once they read the emedicine which I suggest they realize that I know the article.

I prayed for a sceentific test so my children would not have this burdden of not knowing before reproducing.

The test finally started in 1993.

So after reading all your posts and then going on the new HD kids website, I have decided to tell my kids that their aunt is sick. The kids and I are flying out first to Cali and then my hubby will come a week later, so I will tell them on the plane. I will tell them that she is sick and sometimes this illness makes her do or say things that she wouldn't normally do. I will reassure them that this doesn't mean they need to be afraid of her, she still loves them and wants to be with them just like she always has, but if they see her acting differently it is just the illness. If you would please give me your input, do you think that is the right way to tell them???

Yes, I think that's a very good way to tell them.

One piece of advice I got when my former husband's late mother was diagnosed 14 years ago was to start as we mean to go on. The patterns that you put in place of talking about and coping with this disease are very hard to change later on so you don't want to start off being dysfunctional. I would sit down with my husband and talk about exactly how he thinks and you think this disease should be handled. And if you can't come to an agreement, I would go to a counselor. There are other ways to cope than denial.

Who decided it was the family secret? Your brother in law? As Dr. Phil would say, How is that working for him? He needs help and the children need to know that their mother is sick, otherwise they will blame themselves. And safety issues need to be very carefully considered. Is she driving? Is she driving her children? Is her driving safe? How is her judgment with the children? Does she ever hit them? Your brother in law says that when he is hugging his own children, he is hugging the disease? How sick is that? He needs help.

Ignoring HD doesn't make it go away. Making it into the family secret is dysfunctional and results in people not getting the help they need. Your SIL is in early stages of the disease and already her quality of life is poor because she is not getting the right medications, pursuing the right lifestyle and getting support from other HD families. It does not have to be like that.

I totally agree with your decision to tell your children. If it helps to tell them while your husband is not present then do that. Again, I encourage him to test so HOPEFULLY you won't have to worry about your kids anymore. Have a good trip! Pat

Starlight,
Welcome!

Jumping right to it, I cannot express how strongly I feel that we need to talk about Huntington's disease. Living in shame and denial is no good!
I wish someone would have been kind enough, or strong enough to have told me way back when what was wrong with my ex-FIL. Amazingly, they all talked about what an bad alcoholic he was but never a peep about HD. I thought he had to have been the worst drunk I'd ever seen! When my ex followed in his footsteps, I thought, wow the alcoholism in this family is the worst I've ever seen! Talk about crazy mean drunks, they were!
Now, I have 2 sons HD+ and 3 grandies living at risk. I found out by chance.
In our family, we talk openly and candidly about the disease among ourselves, with our friends and I speak about HD in general whenever I get the opportunity. The silence that surrounds Huntington's needs to end.
Tell your story. Explain to your children so that they can stop pretending not to notice anything.

Take care,

Carla