katierae13 I am so sorry to hear that you are living at risk. No I can't pretend to understand what that must be like. But you can not pretend that this is something that will only affect you and your spouse should you have it. And that is my main point here. Should my daughter-in-law have HD, (and if she does, symptoms could start really showing up in the very near future, like just a couple of years), my son will have more to deal with than he can possibly handle on his own: Sole bread winner, raising his 2 (at risk) step-children and possibly another baby, if they do have a child, and taking care of his wife. What do you think I will do as his mother? Sit back and say, "Well you got yourself into this mess, good luck!" NO, I will be right there, putting my life on hold, disrupting the life of my youngest child and everyone else in my family who depends on me to help him as much as I possibly can. Because that's what family does!! At least a loving caring family. So don't tell me this is personal, and I should feel lucky I was even informed of this risk. I have a lot at stake here as well as many others in our families. And I'm sorry, you will never convince me that it is nothing but pure selfishness to consider having children born at risk!! Just yesterday I was reading facebook posts from my daughter-in-law's sisters about how terribly sad they are and how much they miss their mother. It is just unthinkable to me to knowingly have children who may eventually have to suffer at a very young age seeing their parent deteriorate and die from this dreadful disease. Yes everyone is at risk of any number of illnesses and dreaded deseases, but this one has a 50/50 chance of being passed on and is one of the rare deseases that we fortunately have the capability of knowing for certain if it will be in our destiny or not. Not testing before having children to me is selfish and cowardly!!

I have been on this forum a long time since its early posts. This topic has come up many times and there are strong feelings on both sides. In the early days the gene had just been discovered and prior to that nobody know which children would or would not get the gene so it really was a roll of the dice.
When you are young and have only been dealing with the disease for a few years your thoughts are not fully formed as to what it would be like to live year after year with the problems that slowly develop. When you are young and have tons of energy it seems as if the problems are surmountable. As you get older it becomes obvious that the problems are not going away. Your life can become a nightmare in many instances and even if it isn't that bad, the challenges of trying to get proper help and financial support is truly daunting and now the next generation is going to suffer and the cycle is going to repeat itself. Your children will grow up and possible have more children with the disease.
I don't believe that the parents of any child who now is suffering from any type of horrible disease wouldn't have chosen to have this child have this disease 'if they could change it.' Of course they would never stop loving the child but would they have purposely inflicted this pain on their child if it could have been prevented?
With this disease the only way to cope is to live in the moment, without future hopes and dreams. Until a cure is found you must live in the moment. When you are young and full of dreams and hopes of having a beautiful family sometimes I think mother nature blinds you to the fact that there can be a very different picture in your future.

AMEN! I have a son who tested positive forvJHD at age 17. I had questioned for years symptoms I was seeing, but it had to be his decision to test. His CAG was 48. I have a 21 yr old son at risk, and he chooses not to test. It angers me to read what you write about your DIL. I say mind your own business! Your DIL has her own reasons NOT to test, she is a grown women, and your son is an adult. You need to mind your own business! Testing is different for everyone. If someone wants to test, good for them, it is THIER choice! It is not up to you to talk someone into such a decision. Surely your DIL knows this disease better than you. You read about it, she has experienced it, let me tell you there is a difference. I would never try to talk my son into testing. If he falls in love,nand gets married, or has children, those choices will be his. As his mother I will support his choices. It is ok not to agree with choices our children make, but it is not your business to try to talk to him about coaxing his gf to test. My oldest sees his father who suffers with HD and now his younger brother with JHD. Your DIL knows this horrid disease and what it means. How she deals with it is her business, not YOURS. I don't care if she if involved with your son or not. Your son is an adult! And God bless him for loving someone at risk and not running away.
This is not a test for diabetes, etc. this is a test of ones fate, and is a PERSONAL decision. Mind your own business!

cbreeze---I just want to give you the biggest hug ever in this world!!!! THANK YOU! Thank goodness there is someone else out there that realizes every person has the right to make their own decision!

You got it Katie ! Testing is personal. This mother in law needs to mind her own business! This poor girl watched her own mother suffer with HD, and surely worries about her own fate. Koodos to this young lady for moving forward and living her life. I pray her children do not have HD, but the choices she makes are her choices. Soon to be mother in law needs to show some respect! The girl obviously doesnt want to test, so people need to respect her decision and leave it alone. I have only 2 sons. My baby who is 18 has jHD, and I asked my other son who is 20 if he wanted to test, his reply was no. He says he doesn't want to know. I leave it at that, because I can respect his choice. If he gets married or wants children, that will be HIS choice. I can only be here for him no matter what his choices. Same with this girl that the mother in law meddles in. Yhecgirl knows the disease more than the mother in law. I get sick of people telling others how they should live. The diagnosis of Hd or jhd is devastating, everyone handles things differently. This is a disease with no treatment or cure as of yet. So I am happy this girl who has lost her mother is now in love and is living her life. Soon to be mother in law needs to mind her own business!,

WOW! I cannot believe what I just read. It makes me sick to my stomach! First of all, I don't think the issue is as much about the fiance testing as it is having more children at risk. Why on earth would someone want to risk their childs future? I don't get it! It's like saying that you have no concern for their well being. It's one thing to have children not knowing you are at risk, but quite another when you do know and just don't care. There are ways to have kids without passing hd to them. That's what a responsible parent would do. My kids have been through hell and I'm quite sure that they would not want the same for their own.

I'm confused by some of the statements made. cbreeze, you mentioned that you have a son with jhd, I would think that you of all people would want to stop hd in it's tracks not encourage people to have kids knowing they may have the same fate as your son. Also, if the fiance has first hand experience and has watched family members suffer I don't get the reasoning for wanting at risk kids. Just so you can watch them suffer, really? Bh would not be doing her job as a mom if she didn't inform her son about what could happen. It blows my mind that you expect her to sit back and say NOTHING! Oh geez son, I am so happy that you want to get married to someone at risk and may pass on a fatal disease to your children. That's wonderful news! Lets get real!!!! If you want to risk your own life doing something stupid, well that's your decision, but doing something stupid that will risk your babies life is NOT ok!!!! I'm in no way saying he shouldn't marry this girl, but if they want kids together they should be responsible about it.



Edited 1 time(s). Last edit at 07/11/2012 07:11PM by JudyF.

JudyF, the good thing is...you don't have to get it.

Really, I don't? I have 3 at risk kids and not by choice! I would never "choose" this for my kids and those who do REALLY don't get it!

Judy, what I am saying is what the girl does is is none of YOUR business!! Nor is it anyone else's business! She is a grown women. If it makes you sick, go stick your finger in your throat and vomit.
Yes I have a son with jhd, and a 20 year old at risk. I also can respect ones decision to test or not. This girl has chose not to test. People such as yourself need to mind your own business and worry more about your own life instead of dictating what others should do. who are you to judge her job as a mother? Let's get real!!! Live your life, instead of judging others!

I haven't posted in a while.. but this thread is very compelling. I tend to lean toward the PGD and preventative measures. If I had known I was at risk for HD prior to having children: I'm sure I would have done things differently. I spent some time terrified of testing because I couldn't live with the fact that I had passed this on to my children. I ended up testing for them, because I wanted to plan for their care if I had it and I wanted to care for my sis's kids if I didn't (she's 34 and very bad off: case of gene expansion as our dad is doing much better than her).

On the flip side: when I was 21 I had a baby (prior to the 2 I have now) and he was born with Down Syndrome and many health concerns. He died at 6 months. I didn't know he had Downs when I was pregnant. I would've kept him anyway(regardless of testing). The point here is despite the struggles he faced in his short life (surgeries, doc visits {over 65 in 6 mo.}, emergency trips, etc...) He was a blessing to this world.

I KNOW this is not the same as HD (which I have experienced many of the terros {multiple suicides, attemtped and successfuls, abuse, etc...} of HD) But, as a result of my prior experiences, realize that sometimes people just need to be able to live without testing. It is not wrong to live life without genetic selection. It is okay, despite HD horrors, to live the life GOD gave us to live.

I don't think anyone has posted an opinion on this thread that shouldn't be valued. We are individuals and have different perspectives. Thank GOD for that because that is how the cure will be found: different and ingenious thinking!!!!! Prays and love to all of you!

Like I said, it really has nothing to do with whether or not she wants to test. That is not the issue. The last I knew I had the freedom of speech! Bh posted and I responded! I am very sorry that your son has jhd, I really am. That is my biggest fear and If I could avoid it I would. That's all I'm really trying to say. Bh came here looking for advice, not to be attacked. She obviously would prefer that her grandchildren not inherit hd, I would think everyone would feel the same way. Believe me, I have plenty to worry about in my life. If I could spare someone else from having the same experiences I would. I look at my 45 year old husband sitting in a nursing home because he is unable to care for himself and has violent outburts directed at me and the kids and all I can think is that I never want another person to have to experience this, especially my kids. I'm sorry if you cannot understand my point of view. A child with hd, a child without. Not a difficult decision. At least not for me.

Bluedaisy, I am very sorry about your son. What an awful thing to go through. You give a very good point of view. I just get frustrated because we all know that hd can be avoided, so why not? My kids are everything to me and I just want them to have the best future possible. All kids deserve the same.

What any of us do affects others, that is the simple truth of the matter. I know a couple where the wife is already symptomatic and unable to take care of a child. However, they want children and have announced to the husband's mother that they expect her to take care of their children for them. Not asked, announced. I know a woman who is symptomatic and has had three children and doesn't know who the fathers are and can't take care of them and her own mother's choice is raise her grandchildren or let them go into foster care. The daughter is considered legally competent. And people in the HD community tell her mother that having children is her daughter's decision to make. Maybe legally but definitely not morally. I have known several parents who have had children at risk and when a child exhibited symptoms of JHD they had them tested for everything else under the sun and forbade everyone in the family from mentioning that JHD was a possibility. Yes it was their choice to have children but once there was a problem, it wasn't fair for their children not to get the appropriate diagnosis and care. When we make choices in the HD community, we have to accept all possible consequences and we should think about how our decisions affect others.

I told my daughter years ago that she was NOT going to bring another at risk child into the world. That she should test before planning a child and if she was positive and she and her husband were determined to have a child, then she should have PGID. I said I would pay for it. Is it my business? I think so because if she were to become ill I would be asked to help out. I think it's her mother in law's business too, for that matter. Fortunately my daughter tested negative and I am very grateful for that.

Here is what I don't understand. If it is so hard to be at risk and so frightening to test then why in the world would someone want their own children to have that experience? Don't people want the best for their children? Don't they want life to be better for them?

I don't want to live in a society where people's reproductive choices are dictated to them by the government. When a child is born, he or she has a right to be here and we should welcome that child. When people have made a decision, then it's done and over with and no one should be criticizing them. However, when people are considering future decisions, they should be open to hearing about people's experiences and they should be well informed. The MIL who posted here is concerned that her son may be making uninformed decisions. Does he know when the illness could affect his future wife if she is positive? Does he know that JHD is a possibility? I don't blame her for being concerned. And I also don't blame her for wondering why people don't want to test. She's new to this, she has no idea.

I think that people have done a good job in this thread talking about testing as well as about family decisions.

I have to agree with the notion that not testing before having children is selfish (and cowardly).

I can certaintly understand why someone might choose to remain untested where bringing at-risk children into the world is off the table (i.e., the person has chosen to remain childless, is considering adoption, would only consider biological children if using non-disclosing IVF with PGD, etc.) If the risk of passing the gene on is non-existent (or exceedingly low), I can completely understand prefering not know one's own fate. Not knowing means you can hold onto hope regarding being negative. Deciding there's no point in knowing (as long as you're not passing the gene on) also is consistent with the acknowledgement that, at present, there's very little to be done where a person is, in fact, positive (although I hope, hope, HOPE that that will change very soon!)

It's scary to test, to find out whether you carry the gene for a fatal brain disease with no cure. The testing process was the most terrifying, wrenching thing I'd ever been through (it was my husband and son who were at-risk).

BUT, I don't see how it can be called anything other than selfish to say, "I'm not testing because it's too scary/horrible/difficult for me," and yet, decide that it's OKAY to risk passing the HD gene on. Is the prospect of having HD, and the uncertainty and difficulty in living at-risk, NOT too scary/horrible/difficult for your child!?

I guess I just don't think you get to have it both ways: If the notion of finding out you carry the gene for HD is too scary, that's perfectly understandable. But, then, don't risk passing that horrible, scary experience on.

I know some would say that it's selfish for an at-risk or gene-positive person to bring a child into the world even if the child is not at-risk. I guess, while I cannot disagree that it would be very difficult for that child to watch an HD-postitive parent deteriorate and eventually succumb to the disease, I just can't say I don't think at-risk or gene-positive individuals should ever adopt or avail themselves of IVF with PGD. Perhaps I'm not being fair to the children here, but my hope would be that the non-HD parent could pick up some of the slack if/when the at-risk or gene-positive person becomes ill; that there would be happy, loving memories made before illness took over; that the illness could be explained well to the child before the parent became ill; that there would be a cure before the parent ever even became ill. I have too much compassion for at-risk and gene-positive individuals (who never asked to be that way!) to suggest that they should never, under any circumstances, experience the joy of adopting or having assuredly gene-negative children.

But I hold firm that, in my opinion, they must not, under any circumstances, risk knowingly passing the gene on. (And yes, I realize that this is just my opinion, and that nobody was directly asking for it.)

Bluegrass

Looks like Marsha and I must have been typing at the same time . . . didn't notice that I was saying some of the same things she did!

Great comments and perspectives. It is amazing that we are able to have these debates. As more conditions and diseases become able to be tested for; more and more people will be having these debates. The topic of the thread is "help to understand choosing not to test." People are offering perspectives on why they are choosing not to test: completely answering the question. While most disagree, we need to respect the fact that people are putting themselves out there and providing answers directly related to the question. We don't have to convince or try to change anyone's perspective just offer them up for consideration.... as the thread asked.

One thing that isn't mentioned here, which my cousin has talked with me about is the religious aspect of PGD and so forth... She is an active believer according to her religion that her faith says no use of birth control, PGD, ect... If it violates your faith, then it would be considered an unacceptable option... While I disagree with her vantage point; I have to respect her faith. It would violate her way of life, her faith. And yes she is at-risk and trying to have a child. For some of us it isn't as back and white as others think it should be.

I'm not trying to argue for or against anyones faith, but sometimes we all have our lines we draw in the sand and it conflicts with HD ethics. I thought for a while my cousin was being irresponsible, but according to her beliefs she has no way around it. Morals and ethics are subjective. Mine are not the same as some: culture, religion, and so forth vary. I do not believe that we should judge others because our own morals differ. It can be painful, yet we do have rights to our own beliefs.

That being said, definately make sure (bh) your son is informed and knowledgeable about HD and symptoms. And you opinion and concern is completly valid: but he may be unwillingly to hear it I tend to agree with all of your reasononings and would even woonder if your future dil may have denial issues maybe already as a symptom... Then again maybe not (just saying that was a big sign for my sis- her denial of long-term implications...



Edited 1 time(s). Last edit at 07/11/2012 10:46PM by bluedaisy.

I remain firm that y'all need to mind your own business when it comes to if a person wants to test or not.
And you want to talk about who the government supports? Our government supports more that are NOT disabled,than those who actually are disabled. So don't even go on about who pays for those affected by HD.
The life that others choose is not your business, y'all just tend to make it your business. There is a lot more things in this world that are worse than hd/ jhd. Things happen to people every day that are not planned. Kids get in accidents, become paralyzed, have head injuries, leukemia, and numerous other diseases. It is an individual's choice to test or have kids knowing they are at risk for hd. There are numerous things in this life I don't agree with, but I m not going to call a person selfish, a coward or irresponsible because of the decision THEY made. How msny crack babies are born every day? It is not for any of you on here to pass judgment on what others choose to do, or not to do!!! I have some choice names for all of you who judge the decisions of others. I stand firm on my thoughts,nif y'all don't like it. Too bad.

My aunt had Huntington's for almost 25 years. She was institutionalised in 1999 and died two weeks ago. We had some warning, as she could no longer swallow and the decision was made not to feed her. Ten years ago I could visit her and she could speak to me. Eight years ago she had to start wearing a helmet because she kept cracking her skull open, so bad were her convulsions. About five years ago she stopped being able to communicate her wishes. When she groaned at me I had no idea if she was trying to tell me she was happy to be alive or trying to ask me to put her out of her misery.

I'm so pleased she is no longer suffering. It's been such a dreadful road for her.

I just want this disease gone and it makes me sad that people in 2012 can make the decision to actively stop future generations from having HD yet they choose not to. As long as people refuse to be proactive then there will still be a need for forums like this in a hundred years time.

I am not persuaded by ANY argument that tells me that terrible things happen to children and adults every day so it's okay to add to them. That makes no sense at all. How does the sad existence of babies born addicted to crack make JHD okay?

This forum is for sharing opinions and thoughts. "Minding one's own business" is the opposite of what we do here.

We invite differences of opinion and I personally enjoy reading explanations as to why people share a difference of opinion. However, this type of discussion may not be a good fit for everyone and some may find this uncomfortable.

I agree with Marsha (no surprise there) that people can do what they want and as long as it doesn't impact anyone else and everyone else should stay out of it, but when a person's decision start affecting others then others become stakeholders in that decision and they have every right to express their opinion in an effort to influence the decision. That's just the common sense way that adults should be expected to behave in a free society. When individuals start making decisions without regard for those whose lives they are going to impact then yes - that is selfish behavior.

There will always be people making selfish decisions - all we can do is hope that there will always be adults around that will deal with the results of bad decisions.


Steve