As a child my father did not want any patients of his to know his wife was ill. Around age 12 my sister Joan told me I should not have kids
The form McGill had to be signed by your doctor, I mentioned HD and he made me get another form from McGill. He said ?Never tell anyone about the disease because you won?t get into college, you won?t get a job or insurance. My mother choked on toast, but her death certificate says heart attack. So does my fathers.

.I carried the first pregnancy to term without informing my sister who was already diagnosed with HD probable. We were cranking out babies quickly as Dr. Barbeau had suggested, and I told Joanie when I was pregnant with the second child. Joanie died before the end of the pregnancy. Joan had more paper about the Burgeoning HD society of Canada. I went through every paper and threw out anything with HD on it.

My other sister and I had a pact not to tell anyone about HD especially our kids. My first GP was told after he promised not to write it down. He remembered for 30 years. My sisters daughter did a BSC in Marine Biology, a Masters in Neurology at Sand ford and a PHD on Lou gherigs in Harvard without knowing about the HD. The secrecy worked fine until I turned 52 and getting pneumonia twice in one year.

52 years. My sister needed another gap of 2 years after my diagnosis before telling her kids.

I kept HD in a little box and took it out to think about once a week.

We are open on the net to help other people but I still don?t tell most people I have HD, so its really 60 years



Edited 1 time(s). Last edit at 11/25/2009 09:12AM by dustyblues.

Dusty, my dad refused to even address the issue of HD until he died at age 69. It was very frustrating, because we were all aware of his at-risk status. Only in the last 2 years of his life did it start to become apparent that he might have HD.

It became fairly obvious that even HE (despite his denial) - believed that he had it. Due to the fact that he shot himself, rather than go thru it.......

He of course watched his dad go through it. Dad was probably not too supportive - since he and his dad did NOT get along!

Mom was actually the one who explained the HD in the family to me....

jl

In our family, we didn't even know about HD. It wasn't a secret. We didn't know there was a history. My brother was first mis-diagnosed because there was no family history. However, after my brother was diagnosed, my cousin, a psychiatrist, was able to find out that two of my father's cousins had died at Greystone Psyhiatric hopital from HD related compliations when they were in their fifties. My brother and father were diagnosed by physical symptoms on the same day. Dad's suymptoms were very mild. In retrospect we realaized that our grandmother had had late onset HD and she died at the age of 87. I have been open about HD since I have been retired and not concerned about its efefct on my employement. However, I don't think any one else in my immediate family or my brother's family (he died of HD related pneumonia) are open about it.

HD was never really a secret here either in a generational sense. Like Paula's family it was an unknown. Teresa's grandfather had five kids..then he took off never to be heard from again. He had HD and probably made an HD decision to do that or was forced out of the house because of his HD... not sure. just no one knew he had it. As Teresa's aunts and uncle fell ill three had problems but were misdiagnosed. I don't know who was the first to be diagnosed correctly... but we got word of HD after we were married. So we were all quite frankly too dumb about HD to be secretive. I had not seen early HD.. just pretty late HD. And some funerals. I was pretty protective of Teresa and the boys at first and didn't speak of HD a lot. I honestly didn't know what to say about it to her , the kids, or anyone else, So I didn't.

The lighthouse forum, and later this one helped me decide that isolation was the worst thing. For me and my kids at least. Teresa didn't like the subject too much. But secrecy is self imposed isolation.

I decided from the people who talked about HD and people who didn't on the forum in their real lives, that not talking socially was the worst of the two choices. So I "outed" me and the kids. Names, pictures, or anything. Over time they have talked about HD with friends. 95% the discussion doesn't get too far... their friends don't know what to say. But a few friends do get it to some extent. They have some adversity in their lives that translates pretty well. Rightly or wrongly... I decided that them living with that knot in their stomach about HD forever and never venting it is a pretty perverse way to go through life. If by some strange twist of fate later they don't get a job or lose a job over HD risk... they will find another. Normal people get to talk about their problems..and my kids should get to also. No job was going be a substitute for that normalcy. Everyone has some particular problem in life. I had an alcoholic mother. I always felt better for being able to speak freely about that. I remember trying to hide that as a child. Making excuses for her that were lies, and being embarrassed for myself and my family for what she was. I started that cycle with T at first with the kids. Then I said screw it... these kids have HD problems now.. and will be concerned about for a long time. At least they can be like other normal people and talk about what bothers them with people who can give them relief. I am sure like everything there will be pitfalls to this... but generally better.


And here is the kicker... I think anyone who has kept HD a secret has zero right to complain about lack of services. Ya can't help people ya can't find. We set HD standards here in an unofficial way by taking on issues one by one and calling the kettle black. My decisions were part of personal problem of mine by excuse making... lies ..and having my kids do the same. It also is part of the social problem with HD that I was a part of, partly by my own hand and by people who were doing the same thing as me as well. Chances are one of my kids are HD positive. I want them to have more than I did... if they marry I want their spouses have ways to cope better than I did. When they need treatment, I want them to have better than I did. I also decided they could be part of their own solution. There is two of them and they can do twice as much as I can alone for them. It's their destiny.. not so much mine, and they deserve the right to take some control over it themselves. I also have to point out that they have some responsibility for what happens in the future for themselves..and if they do absolutely nothing that will be the return on investment...nothing.

My husband and I just told our kids, 16 and 11, about my HD status. It was time because I am showing "soft" symptoms (by the way, I really dislike the term soft symptoms....there is nothing soft about temper outbursts,impatience, and uncharacteristic behavior) There was no secrecy in our family growing up-we just didn't know. My mother was diagnosed about 4 years ago at age 75 after 3 decades of my sisters and I wondering what the heck was wrong with mom? Her so called soft symptoms ruined every important relationship she ever had and left my sisters and I confused, frustrated, helpless, and angry. It was hell. There was no way I was every going to let my kids experience that, so we told them. Both of them seemed relieved. Now they have an explanation as to why it has to be so quiet in the house, why they can't interrupt me or try to talk to me at the same time, why I won't answer the telephone, why I can't drive with the radio on, etc. etc. etc. The good news is that unlike my mother, I have the benefit of being on an antidepressant which most of the time works amazingly well. I am so much more prepared to deal with this then she ever was. In the end, it was better for me to tell them and perhaps take away a bit of their innocence then to let them draw their own conclusions regarding my behavior.

That's really admirable, mrspippen. I'm glad you decided to be upfront with your sons, Eric. Dusty what a good question. In my family it was more like denial than a secret. We all knew that HD was in the family, that my great grandma had it, and Uncle Clarence and some others siblings of Grandbee. But when Grandbee started having chorea and being rather rigid in her manner, it was like no it can't be HD. It must be palsy. So she went to her grave having palsy. Then when my dad got the chorea, it was denial all over again. He's had a stroke! All those wild behaviors in his 40s/50s were midlife crisis. It was my husband who stopped the denial in my mind. He said upon seeing my dad walking toward us, he has your family disease. Duh! Now it all made sense why my brother was having such trouble, and so many movements. HD hit our family like a ton of bricks falling on top of us. Some still denied it, in other parts of the family, but they, too, came to realize the truth. The truth is out, now, because of the blood test. Hopefully the blood test will eventually eiliminate secrecy and denial.

Alice, I too was very relieved that the advent of the DNA test would eliminate all of the mystery!

jl

Previous generations just kept going until they could no longer work. Every jerk might be the beginning of the end. My sister who did not have HD spent just as many years looking for symptoms as I did. The only thing I prayed for was a difinitive test which happened in 1993.

Thank you, Eric, for your post. I am hoping someday I have the courage to do what you have done. My husband does not want anyone to know he is HD positive. We have gone thru IVF PGD so our children won't have it, but I still feel they need to know. When they are old enough, I will have to be the one to tell them. We have a 15 year old Foster Son as well who needs to know sooner than later, but my husband does not want to tell him yet...he doesn't feel he is ready to handle it because of his past.

Any hints on how to tell your children when they don't grow up hearing about it?

I strongly agree that if your friends and family don't know, they can't support your situation....either with physical support or donations to find a cure. People don't donate to a cause they don't know about!

Thank you dusty for bringing up this topic!

Its funny that you have asked this Dusty... My one HD- brother has been so ticked off at my father for so many years because he was HD+, and it was a really bad situation with my Dad. When we learned what he had, my HD- brother didn't care... it was all about the abuse that my Dad did to my Mom, and most of us kids, at the time. Apparently he has felt the need to share a lot of info between us with the passing of our brother, and he really seems to think that our father decieved our mother back in 1950...he purposely lied about his mother who was in an asylum because of HD, and therefore made my Mom have the six of us kids, only to pass HD to four of them! Wicked man, he says! You know what? What did they know in the '50's?? Very little! My father was originally diagnosed with mental illness, and it was not until after this happened that we discovered that his Mom was ill before him, and finally it was labeled as HD. My HD- brother goes on and on about the kids they had (WTF???) and has been talking all kinds of trash about the whole thing! 50 years ago! Whatever... All i could say to him was, he had two of his three children before testing negative... so how bad was our Dad in a time when there were no tests like there is now and had six of us, and he had the tools to know and had two with one on the way? He has no answer...Glass houses, you know??

Personally, i am all for honesty, and as Eric said, our kids have a right to complain or commiserate or whatever they may do, over HD all they need to. Protections are not as in place as they should be with regard to privacy and insurance, but dang it, it doesn't get much more serious then this, and we all need to be open and honest. The honesty has helped us so much for the past 20 tears if not more, in getting the help, research, and supprt we need now. Full steam ahead with that.

Just my thoughts.

Love to you all,

Suzanne

My sister has a broken home. She divorced her first husband after having three children. No one discussed HD with her boys, who went to live with their father at a young age. My sister went on to have two more children who know of HD because they are in touch with aunts and uncle, who can explain why their mother acts as she does.

Two of my sister's first 3 boys have not been in touch with any of their maternal relatives. We haven't been able to establish contact with them, other than to find out both are fathers. An issue to add to the secrecy is the guilt of knowing they must be told, but having lost communication with at-risk offspring.

I guess this is negligence except we didn't know about my sister's condition when the boys left, and they were too young to deal with the issue. But I think those of us in the extended family should have done a much better job of keeping track of offspring, just in case. The only explanation is that we were too busy trying to ignore that we might be carrying the mutated gene. It has only been with the onset of my brother's symptoms that my sister has admitted she has HD. It took years for her to see a doctor about her symptoms. She seems unable, physically and emotionally to inform her children, even though the one daughter (second to the last child) has been tested (positive).

I'm new to the forum and this is a great question. We didn't know HD was in the family until my father-in-law was diagnosed around age 80 and our son was only a few months old. I immediately and instinctivly decided that we should not mention the gene positive status of my husband (once he was tested) and he agreed. He is a very introverted and private person anyway, but I mainly was thinking about protecting our son. My husband is active in a couple research studies and we are so paranoid that we don't give the ss# to them. But in reading the responses here (especially Eric's), it makes me re-think our decission. It is true that if HD doesn't have a voice, then no one will hear our cries for help in dealing with and defeating it. I also know that someday there will be hell to pay with-in our family for not being forthright. I also feel the horrible deceitful pressure of keeping this secret. My mind is like a closet that is getting ready to explode from being packed with too much junk. I recently saw a therapist for the first time ever and decided to share this information with him. It was such a cathartic experience, altho I tend to be a practical person who tries to reason through things and I really didn't think there was any value in telling him...in fact I thought there is risk. I guess that's one reason I am thankful for this forum and amazed at the courage I see here. I am still trying to process this and it's been about 5 years since we found out this news. I

No secrecy in my life.

What a great topic!

We also did not know the HD status of my Husbands family until we googled his name and found a relative. As with Eric, my father in law had 4 children that we know of by three different mothers after my Husband and his brother were born he left. It was always the family story that he had gone insane and left. We now know the reason. We were able to locate one half sister( who passed prior) threw her mother and some of the Jaescke clan but none seem to have any idea what became of Bills father. We have been very honest with our two children regarding HD. We both feel it is very important...It is hard to fight when you don't know what your fighting against!~

The secret is at least as old as my oldest kid. 18 years. Ouch! Not a day goes by that I don't think about telling, but its difficult. Originally we thought it would be best to keep it from them because we wanted them to lead a normal childhood. Now that they are older (16 &18) it seems like we should tell them. I am completely twisted about it and am not really sure when the best stage of life is. I used to think it depends on the pHD's progression. Now I just don't know. However, if I had known then what I know now I wouldn't have kept it a secret at all. As time rolls on I feel more and more sick to my stomach about keeping it from them. The 16 year old might take it pretty badly. . . the 18 yr old. . . IDK.

It was interesting at the most recent support group meeting I attended and told this story - all of the jaws on the floor. LOL

Previous to the generation of HD I am dealing with, Laura's grandfather had it. When he passed L's mom & sister demanded an autopsy to confirm HD. This split the family of four siblings. The other two went there own way with families etc. & I'm not sure if HD was discussed. I have been informed that one of L's uncles has recently been either diagnosed with HD or is gene +. I don't know if L's aunt ever got tested but she is older now and we are not close so I don't know her or her children's health status. L's mom had it and she passed in '03. My kids were exposed to some of the horrors of HD via L's mom. Laura's brothers & sister (as far as I know) don't speak of HD amongst them selves. If it comes up at all, it's through Laura.

I kept the secret from my family for a long time when L & I were dating and early into our marriage. When I told them (mom, dad & 2 sisters) about HD they were pretty much like "whatever" and unsupportive. Even today, still unsupportive.

Great post Dusty.

Pete



Edited 1 time(s). Last edit at 11/29/2009 09:06AM by lauraandpete.

I think this thread shouls be a "sticky" as it shows very well how secrecy doesn't work as well as honesty and communication.

Quite so, Alice!

jl

I haven't figured out yet if HD was a secret in my husbands family or if they simply didn't know. Our kids know that their father has HD, but I'm not sure if they know yet what it means for them. The oldest 2 are 14 & 17. Like you Pete ,I really don't know how my kids will handle it (assuming they don't already know) and I also wanted them to have a normal childhood for as long as possible. I am absolutely dreading the day when I have to discuss it with them. We just found out about HD a year and a half ago. I guess that should have been part of the discussion the day I told them about their dad. But, I guess I don't know what the benefit is of young kids growing up knowing and thinking the worst about their future. Of course they do need to know before they decide to have a family.

Well one of the benefits to kids knowing the whole truth, and being able to talk to their parents about hd is this. I know a family, that a few months ago, the teenage son tried to commit suicide. The son knew his mom has hd, but what he was being told about hd, through all very good intentions of his dad, was a very light version of hd, but the son was seeing much worse than that in his mom than what he was being told, and so his fear of the unknown and what he was seeing, may be the reason this happened. Now father and son are talking straight up truth about hd, and the son is doing much better, and is coping with life better now. And the father too, is seeing fully now, that is wife isnt doing well, and has had to accept that himself too, before he could be honest with his son, so i think they are going through a very hard time as a family, but at least they have each other and are able to talk to each other now.



Edited 1 time(s). Last edit at 11/29/2009 07:38PM by Barb.

Children in families with HD need psychological or psychiatric support. This was my first issue about HD with
Dr. Dubinski at UKansas before HDlighthouse existed. My mother abused me and I had 1 ten minute appointment with my mother's shrink over the course of my childhood. HD is messy disease. We often turn to children for parent care. My sister was asked to move back home to help with me.