Barb, this is one of the reason I love you so much. You are so open about yourself and you understand yourself so very much. I love that you told the story about your grandchild on the sofa, thanks for sharing that. You always offer insights into the life of our Phd's thanks! love, Pat

Oh, Barb, I am so sorry. I do think you misunderstood what I was trying to say, but clearly I did not articulate my thoughts very well, since they were so prone to being misunderstood. Gosh, I feel really bad.

I didn't mean to convey that I'm sick of people making excuses for HD. And I certainly didn't think that YOU were making excuses for HD. Re-reading my post, I realize I didn't do a very good job, at all.

When you said that my MIL's not telling because she wanted grandchildren doesn't sound logical or reasonable, I agree, 100%. It doesn't. And I'm able to see that, very likely, that is the illness talking, not her. To me, that means that, even if it sounds unreasonable, selfish, wrong, etc, I need to be understanding. I need to understand that she wouldn't think this way if it weren't for her illness. To believe that she wouldn't have done this, were it not for the illness. That's what I meant by "excuse." I meant that we need (I need) to understand that the things we find upsetting--even horrific (violence, unreasonable behavior, concealment of family history, etc.)--are not a product of the affected person being a "bad person", but, rather, a product of the illness. Not having a properly working brain, to me, is a valid reason (or, "excuse," if you will) for unreasonable behavior. The person can't help it; it's her disease. I didn't mean "excuse" in the sense that the behavior is "okay," but only in the sense that, at a certain point, people cannot really be held accountable for their behavior (where they're brains are so damaged that they can't make decisions properly, e.g., they're behavior--or misbehavior--is not really their fault.)

EXCEPT: I really, really believe that my MIL felt the same way BEFORE the illness reared its ugly head. Because of this, I guess I DO hold her accountable. What I haven't shared is that my husband's mother was pressuring him to give her a grandchild from the time he was 18. That, to me, also is unreasonable, but I do not believe that my MIL was impaired by HD at that time. My husband told her that he was not ready to be a parent so young, that it wouldn't be very fair to the child to have a parent who was not emotionally or financially ready for parenthood, etc. and she just said, "Well, hurry up and get ready, I want my grandchild!"

Maybe, she was impaired by HD then, too. But I don't think so. This was at the time that she learned of her mother's HD positive status, the time that she obtained power of attorney over her mother, and the time that (in my opinion) she should have told my husband and his brother of the fact that HD was in the family and of their own at-risk status. Instead, she began pressuring them both to reproduce, pretty much at the precise time of the discovery of the diagnosis. It almost seems like, having found out, she wanted them to hurry up and have kids before they learned enough to decide not to. IF this was the case, i.e., if she wasn't impaired at that time (and I must confess, again, I really don't think she was), and she nonetheless concealed this information because she wanted grandchildren, then isn't it a whole different situation?

Is it not fair to say that, if she WASN'T impaired by HD at the time that she made these decisions, she did something that was really, really unfair to her children, to their potential spouses, and to their potential children, and that she should be accountable? Or am I to attribute every bad thing she's ever done (e.g., beating my husband and his brother when they were tiny boys and she was in her early 20s) to HD? Being that she's 58 now, I can't imagine that she would have been affected by HD way back then! Sure, she's affected by HD now, and to a large extent, I have to be patient and understanding that a lot of what happens today is not "her," but her illness. But I stand by my position that some things really WERE "her," and they were not okay. A person can be gene-positive, but unaffected, and, in my opinion, that person still must be held accountable for his or her bad behavior. It's not right to just say that every awful thing she's ever done in her life is attributable to HD, I don't think.

It's ok, don't feel bad, thank you for saying that, and im sure im misreading your post too. I can get emotional too, and read more into a post than is necessarily there, so i apoligize too I think you're just trying to make sense of an unfortunate situation

Thank you Pat. But i think i was being a bit overemotional too, guilty

It's hard NOT to get emotional with HD. I know I do. As I've been reading this post, I have been thinking that I'd be really ticked too with the MIL because she was probably well when she made the decision not to tell her adult son who was getting married and starting a family about the family medical history. But now I'm thinking that it's very likely that she was already affected at the time. It is just not normal for mothers to want an 18 year old son to start a family. No one can make enough money at 18 to support a family and teen marriages are very much at risk for failure. Who in their right mind would urge this?

I'm like Barb - I tell personal stories to illustrate my points. When my daughter was about 2, I was sitting at my in-laws' Thanksgiving table when my mother in law wondered aloud if perhaps my daughter was fathered by someone other than her son. It wasn't said with anger and suspicion, but had to do with family resemblances (actually my daughter looks a lot like my ex's sister) and I don't think she had a clue about how offensive the remark was. I assured her that this was out of the realm of possibility and went on eating. My husband's jaw dropped open and he was about to raise a fuss but I shook my head at him and he went on eating. The reason for my calm was because I knew that there was something psychiatrically wrong with her, I just didn't know what. We didn't get the HD diagnosis for another SEVENTEEN years. We now know that cognitive and psychiatric problems can occur two decades before the physical impairment leads to a clinical diagnosis in a doctor's office and I have absolutely NO doubt that HD was behind her remarks and I am very glad I didn't tell her off.

So here's the thing, it's fine to vent and it's okay to feel angry but you need to be able to feel it and then get past it for your own sake. There is a lot to complain about with HD. I wish I had a dollar for every time I have heard about family members who could not be bothered to help for example. And if you are caught up in righteous indignation over people behaving badly and anger towards the disease, it will just poison your life. Focus on friends who act like family and support you, focus on the positive, find reasons to hope. Do things you enjoy.

Fred,

I'm sorry, but I have to disagree with you about the things that her husband said. I think that she needs to take them seriously. My husband did lash out at my kids and I. He told me that I needed to be hit, so he hit me! He also hit our youngest and grabbed my daughter. She was able to get away from him. If he is able to say those things, then he is able to act on them. Someone with rational thoughts would not threaten a newborn baby! I just think that she should keep a close eye on things.

Bluegrasslady,

I do understand your feelings about your MIL. I'm not exactly sure how I would feel about mine today if she were alive. There are several reasons why I think she had HD and had made some comments that now make sense to me. I do understand her not wanting to tell her son at 18. I really struggled with that myself, although HD is fairly new to us.We have not known for very long. My whole world fell a part with my husbands diagnosis. It went from having 3 beautiful healthy kids with a great future ahead of them to, 3 beautiful kids who may inherit a fatal disease. Their futures are up in the air. Now having said that, I do believe that there will be either a cure or a med to slow progression in their lifetime. I do think that your anger is justified if she truly kept it a secret just to have grandchildren.

It sounds like there is alot of stress in your home right now. Some, hopefully can be alleviated by a cooling off period. I am sure
your husband is stressed talking about HD as most would and you are stressed with the prospect as well. Maybe staying away from the subject
for a short while will help or watching how we present it - maybe trying to be more compassionate if not already so.

In our family I can't say that we "hide" the fact that HD is in it, however, we do not broadcast it either for various reasons - insurance, jobs,
etc.

As far as the anger/behaviorial issues most times these can be treated with medications the same way other illnesses/symptoms can be
treated. That would be something to check into immediately - it may help him feel better and possibly resolve some of the behavorial issues.

My husband of 42 years has never been a threat to our children. There was a time in our marriage where there were some issues and he
was put on an antidepressant and it helped immensely. Many years later there have been other medications that he now takes which help
him with some of the HD symptoms.

Having HD or being at risk for HD is a tremendous weight on those involved. The way I have always looked at it is that those with the illness
or at risk didn't ask for it. It is hard on the spouses too, however, as spouses we need to be there for each other. None of us know when we may be faced with a serious illness other than HD.

By being there for each other I mean help each other through it. If medication is needed so be it. If counseling or a psychiatrist is able to
help then their services should be used. Sometimes those who need the help do not realize it whether it be HD or other illnesses/diseases. Then we need to try to make them understand or have others help who may get that person to understand.

Many times some of the above will alleviate many issues. If there is physical abuse that definitely needs to be addressed. As I said medications can help a majority of problems including the abuse.

Each situation is different and needs to be treated as such - everyone has to make their own decisions based on their circumstances.

There are good people on here with good advice. Good luck to you.



Edited 1 time(s). Last edit at 10/30/2011 09:59PM by Shar.

There certainly are good people on here that are willing to go out on a limb to help.

Barb, thanks for sharing your personal stories (forgot to mention that!) It meant a lot. You sound like a wonderful grandma! Recognizing that at times your thinking wasn't right, and that for that reason, you shouldn't be alone with your granddaughter, must have been really, really difficult.

Marsha, it sure IS hard not to get emotional regarding HD! Maybe you're right, in that my MIL was affected for longer than any of us realized. That might explain some of the decisions she made/thought processes she had, years and years ago, that seem so reprehensible to me. I guess I should remain open to that possibility. My anger doesn't really get me anywhere good. But, gosh, I'm SO angry!!!!!

Shar, thanks for sharing your story. I wonder how we'll know whether my husband is indeed affected by HD, and whether medications might help. He is so far untested and, we think(!) asymptomatic. (Although I engage in a lot of symptom-hunting, and I sure do find them when I'm looking! Need to stop that. :-( )

Yesterday, he choked on his food, and he had to gag over the sink for a while. That's never happened before. It TERRIFIED me!

Please, tell me it's normal for people to choke once in a while? Gosh, I hope so. That episode really led to my having a pretty rough day yesterday. My brain went someplace pretty scary. He thinks he was just eating too fast. Hope that's the case.

A choking episode, were it not for this HD risk, wouldn't really phase me. It just happens sometimes, right? (This wasn't a "wrong tube" scenario, though . . . he said it was stuck in his esophagus, and wouldn't go down, so he had to stick his finger in his throat . . . ) Now, because we're worried about HD, the choking thing really, really scared me. Sigh.

Yes, choking is also one of the leading cause of death in people with HD.

What was he eating?

Scary. :-(

He was eating chicken noodle soup. He said he was eating it really fast because he was watching the football game, not really paying attention. A huge clump of noodles got stuck, and he couldn't get it to wash down with water. So, he stuck his finger down his throat and gagged it up into the sink. He wasn't too upset about it, but I was.

I freaked, actually, but tried to do that in private. I went into the bedroom and sobbed. Didn't want him to see that!

Gosh, I hope it was just a fluke thing. :-(

I did receive a kind and helpful PM assuring me that it probably was a fluke thing--that choking is an end-stage affliction. Although, I've read in some other postings that for some, it's the beginning (for Barb it was, I believe).

My God, I wish I could relax!

Hey there Yes, for me i started choking on fast liquids, like water and coffee, bout 2 years before any symptoms or memory problems. And you're right, usually it's a matter of it going down the wrong way, and water trying to go down into the lungs instead of the stomache. So for that reason i would not worry about this either. But what can happen is this, non hd related. I have a sulphate allergy, that will cause my throat to swell, and food get stuck as you call it. Now if he has a sulphate allergy, and was say eating canned soup with chemicals in it, that could have been an allergy rather than hd. And it was just one episode, so i'd say not hd, and just watch and see if this happens more, look into the idea of an allergy if it happens a lot, take care

I just wanted to add a couple of things, because as I've been reading these posts, it kind of dawned on me . . . Ray started symptoms when our son was very young, but looking back, I don't ever think if it wasn't for me, he could have told our son about the HD, had Joey been older . . . I think it was just the way he was wired from birth. Throughout his illness, he'd actually cry thinking about Joey having it, I'd have to reassure him that Joey was fine, wasn't going to get HD, just to make him feel better (I really tend to believe that he is okay, but really don't know 100% as he's never been tested), but in any event, Ray watched his mom with HD, and it was just too painful for him to face that our son could have it. I guess my point is when you see it and you're the one with HD, it's a whole different level of despair . . . this is what I'm thinking anyway. I know that if Ray had just developed symptoms now, when Joey was 19, he couldn't have had that conversation with him, I just know it, and it wouldn't be because he was being a horrible person or parent . . . I don't know. I was just thinking about this as I was reading about your MIL, and it dawned on me, that if it wasn't for me, Joey wouldn't have known either . . . I don't know if this makes sense, but I guess we just don't know why people do or don't do the things they do when faced with the unimaginable. I can understand your side and your anger, but with HD, I can also understand that there are so many different levels of grief that people sometimes don't know what to do or how to approach the subject.

To be honest, I think that I haven't done a great job with our son, either, because everytime we've talked about it, I feel the need to reassure him that he's okay . . . I can't accept it, and I don't want him to feel bad, so I always say 'I really believe that you're okay." (which I do, but I could be wrong, I guess) . . . so until you've actually lived it, who knows what you'll say or do or how you try to protect the people you love . . . when in the long run, you're not really protecting them . .. it's just all messed up, I guess.

On another note, Ray didn't start choking until further into his progression . .. but it was a problem eventually.

Barb! You over reacted! It sounded to me that she was expressing justifiable anger with her MIL and you made it about yourself. So much anger.We all have hot buttoms I know but it's a good idea to wait a day before attacking in writing like that. Waiting a day might have allowed you to calm down, reread her post and realize it had nothing to do with you and I bet you never entered her mind when she wrote HER FEELINGS.

Uhm, no jduff, i won't wait to post. I am real and genuine. I could also suggest you read all the posts before you post, but i won't tell you that. I have already realized what you said, and did apoligized, up above, and meant it. It has given me and bluegrass a better understanding of each other. That is why i am real. Because real life is about being able to come to understandings with other people, and always trying to bridge a gap. So no, i have hd, and you're gonna try and tell me to wait a day? lol Good luck! And seriously, me and bluegrass already realized that perhaps we were both already venting, and i think we both really care about each other a lot more now. I know i appreciate her so much more, because of how kind her response was to me, and realize she is a very kind person. And so jduff, my first response was not out of some kind of respressed anger, it was from what i read in her post, and then bluegrass realized she had been misread, and we both totally got it. Sooo, to make a long story short, which i really didnt want to have to post all this at all, if you want to say, oh gosh barb, i think you misread her post, and only said that, i would have simply said, i agree, and taken care of, and then the thread would have still been about bluegrass, but, gonna tell me what to do? No. That does not happen with me, unless it comes from Steve or Marsha, period. So, tell me what to do? Nope, not gonna happen, and im sure you will realize this didnt work for you Oh yeah, the answer is no

bluegrass, i was kind of light about my apology too, but i did really mean it, hang in there



Edited 2 time(s). Last edit at 11/01/2011 02:52AM by Barb.

I know that you apologized but it was uncalled for meaness and I think you needed to be called out for it. If people are to feel safe expressing their feelings, they can't receive a practically page-long rant where someone else takes it personally. It was mean and it was wrong.

I was not mean. I apoligized if i had misread her, that was all. There is nothing big or mean going on here, at all. I took a lot of care to write a very personal story, to help show bluegrass how hd can cause denial and poor judgement, that was all, so that she might have possibly been relieved of her anger, and possibly seen what could have been going on with her mother in law, that's all. So please leave this alone now jduff, you're really causing me unnecessary stress now too. I really don't think it's as big a deal as you're making it now, unless others want to tell me the same



Edited 1 time(s). Last edit at 11/02/2011 01:46AM by Barb.

logically until her husband tests no one knows. i find it hard to believe that a bright child would not notice anything and not do some fishing on the net.HD was in my grade 9 to 11 biobook in the 1960s and much more info in grade 13 bio after the genone discovery because it was a perfect example of the mendellian dominance. even in grade 13 the last thing i would have chosen to do a school project on was huntingtons chorea with my own mother for show and tell. hubbie has had the right to test since he was 18. i'm sure part of his behaviour is pretesting syptom watching. it is possible to drive yourself nuts.

HD is not the only gen. disease. one of our twins was born with a hole in her skull...i thought the doc did it was the scapel but they a computer on emedicine in the delivery room and a diagnosis of cutis congenita aplasia 20 minutes afer her birth a genetic condition which was not in either family
[emedicine.medscape.com]



Edited 1 time(s). Last edit at 11/02/2011 11:33AM by dustyblues.