Hello Everybody, I've lurked here for awhile and just registered. I'm an at risk 39 y/o and am waiting for my predictive test results. I'm very torn about whether or not I should tell my parents if the results come back positve. My Dad is HD+ and wasn't diagnosed until his early 60's. Before his diagnosis, we didn't know HD was in the family. If I do come back with a positive result, chances are pretty good that my Dad won't be here by the time symptoms start and become noticeable to others. So I thought that by not telling him, I would save him the worry and the guilt that he would feel (even though we've told him not to).

I'm really undecided if I should tell my Mom. She's healthy and in her late 60's. I don't want her to worry and who knows, if I had a late onset, she might not be here to witness it either.

They don't know that I have had the test so they are not expecting to hear results. If I have a negative result, I will tell them. Any thoughts on what I should do? This has really been weighing on my mind!

Thanks,

Tes

Tell your Mom, in person, write a letter, whatever, tell your Mom. You think she doesn't already worry right now? I'm a mom of 2 at risk, Let me tell you, I'm scared to death, but I want to be told. Tell your Mom. Then I'd tell your dad. Do you have someone to bring with your to hear the results? If not, consider bringing your Mom. Best of luck to you, Pat

I'd tell them and show them your strong enough to take it. But it's your choice, very personal one at that.

Matt.

[www.hdyo.org]

I think that I am the different opinion here so far.

I agree with your reasoning. I think that you could choose not to tell your father at all and only tell your mom if you think she should know for future dealings with you?

I agree that this choice is a very personal one but I would weigh it very carefully. You will also be choosing to cause a distance with your mother if you choose to keep a secret from her. If you are close I would think that you would not want to do that. But if you are not close, then it might be option.

Hi Tes and welcome. Hmmm, these are my thoughts. Do you have someone supporting you while you go through this, a husband, a good friend, or will you be needing your moms support during this waiting time? This is just a thought. If you don't need your moms support, i don't think she will be offended if you were to wait to tell her. My idea is this. I think if you tell your mom ahead, then you would be dealing with her stress of waiting for results. And then when you get your results, her wanting to know right away, and what if you need a few days emotionally just to cope or unwind and process your own thoughts and emotions, and also knowing you have someone "waiting" for you to tell them. If you don't need your moms support, and have a support person, i think you should worry more about just having to deal with your own emotions. I think it would be good to tell your mom after, no matter what the results, but this way, you can give yourself the time and place that you choose to tell her, rather than her waiting on pins and needles. You can just say, you know, i've had it on my mind for a long time to test, and recently i decided that would be a good idea. And so, i want you to know that i have had the test done, and i have some results to share with you. And just let her know that you just didnt want her to have the stress of waiting.

Hi and welcome, I agree with Barb. When I tested aged 22 I didnt tell anyone apart frm 2friends bcoz I knew id have to deal with my own emotions before I told anyone if I were positive and I didnt want ppl treating me different in the waitin process and thm stressing. Also there would have been some family members I wouldnt have told like my gran as she had been through enough with losing her husband, children (my dad) and her grandchild - my sister to this disease. If my dad was alive when I tested I wouldnt have told him just like my sister didnt when she tested pos bcoz of guilt plus he was pretty far advanced by then.

Everyones circumstances and family life is different, I hope you figure out whats best for you and good luck with your test results, I`ll have my fingers crossed for you that u have the same gd result as I did

Louise



Edited 1 time(s). Last edit at 07/19/2008 04:55AM by lou_22x.

I pick and choose what I tell my wife and have for a while. If her sister or dad passed away I wouldn't tell her I don't think... but I do bring up lesser problems so life seems somewhat real to her also. If a son gets in trouble at school for instance I would mention that.

Your mother should know. It could affect you in the future and she will be a part of it and needs to deal with it correctly. Plus a parent has the right to worry about her kids. Assuming your mother and you are on good footing, there are very few people who understand what you will be going through and she would want to be there for you. I would leave the decision to tell or not tell your father up to her. She will make the best educated guess as to what is right for you both in that regard. Secrets over all tend to be about as destructive in normal relationships as whatever the secret is about. Keeping it from dad won't hurt. It might bother you keeping it from your mother though over time. Life is both good and bad at times and the people who care about most want to share both.

Thank you all so much for your thoughtful answers! It's a relief to be able to ask people who are familiar with the issues. I do have a support system, my husband will be with me when I get the results. He was very supportive of my need to be tested even though the results could effect both of us. I have two children and I do realize now that I would want to know their status if they turn out to be at risk.

Right now I am leaning towards telling my Mother. We are close and, as Eric mentioned, I believe it would bother me to not be open with her. I believe letting her decide if Dad should be told or not is a good one.

Thanks again!

Tes

I haven't told my mum, and unless shes asks me directly I'm not going to. Why? Well, I can handle it in myself, and I can deal with my mum being symptomatic but the thought of my daughter being HD+ kills me (she's 10). So it's kill my mum if she knew. She'll be long gone by the time I'm symptomatic, so why worry her? She doesn't need to know.

Probably not what you wanted to hear, but there you go.

Thanks DH, for your thoughts. That was my original thinking too. But I now realize that if my children are found to be HD+, I'd want to know because I would want to help them though it. Even if I wasn't around to help them through the symptoms, I'd want to help them if they needed to talk about their future, etc. That's why I'll tell my Mother if I'm HD+, but I'd still rather not tell my father as I just don't want him to have another burden to bear.

Tes

Welcome to the forum, Tes.

I suggest you consider asking one or both of your parents if they would want to know your result "if" you were tested.

Good Luck with the testing process,

Tim

It's hard to give good advice on this, without knowing your parents or you.

I didn't/don't tell my wife any bad news. Her sister died a couple of months ago of HD, and I didn't tell her. I don't think I need to add any dimension of pain or suffering at this point in her disease process.

So I wouldn't tell either of them if it was me. Especially with the hope of emerging science and the hope of real treatments and even a cure in the future.

You should worry about you. If you feel like you absolutely need to tell them, then you do what your heart tells you.

Tes, first of all welcome to the site!!
I have deleted several times here because what I am trying to say doesnt come out just right...but the best advise i could give is Go w/your Gutt feeling...tell who you think you NEED to for you to mve forwrd. Like Eric and Fred--i pick and choose what I tell my dad who is in late stage hd..you will know if you give it some heart felt thought who needs to know your results...........I found out 5 1/2 yrs ago I am gene pos. and the releasing of information does fall into place in time--first you need to deal w/you!! and what it means for you

DCB
*Living for today*

If only we had a crystal ball you could see their reaction to your results and decide what is best for all concerned. If only we had a crystal ball, we would decide if we ourselves really wanted to know our own results! Getting tested for HD is a bit like peeking into a crystal ball. Would your parents like a peek too? Genetic counselling gives you an opportunity to discuss some of your concerns, but no-one really knows how your parents will react to such news (or you for that matter). The issues are far greater than burdening them with worry and guilt, or getting the timing right. I hope my story helps reveal some of the 'often unsaid' issues regarding HD results.

My Dad was diagnosed HD+ in 2007, aged 59 (CAG 42), before which we had never heard of the disease. Granddad was 67 when he died of a massive heart attack. My uncle is 63 and suffering neurological damage from what they thought was caused by an undiagnosed stroke (hindsight!) and my Aunt is 68 and although HD+, still appears 'normal' to the untrained eye. Dad still rides his bike, swims and is quite fit for his age; it was his violent behaviour and loss of cognitive abilities that was of concern, and still is. Of Granddad's 31 decendents, I (and therefore my 2 children) are the only ones who have tested negative so far (surivors guilt!)

My sister later tested positive, which in a weird way was a relief as it explained some of her difficult behaviour. She is 40 this year and suffers from terrible migranes, relationship breakdowns and personality changes, which we attribitued to a serious car accident several years ago. Like yourself, we felt if any of us kids did have HD, we wouldn't show symptoms until 50-60+ years and well after Dad had passed away. We have been told now that HD may have caused the car accident, or at the very least, triggered HD to start its progression. She has now been diagnosed with bipolar (some HD+ get it and some do not) and can finally access some effective drug treatments for it.

Before any of us got tested, I discussed with Mum whether or not she wanted to know, to which she said yes, of course. I also discussed with her the impact on Dad if any of his kids were HD+. My main concerned was guilt and possible suicide. Mum's response was interesting. She said having one of us kids test positive will help him accept that it is not a disease for bad people. He inherited the gene from his father whom he hated, and his deepest wish was not to be HD free, but that he got it from his Mother instead. Having someone whom he loves and respects also have the disease is helping him to see HD for what it is, and not characterised by whom he inherited it from. Had my sister not shared her HD+ result with them, he may never have had this peace.

Every relationship you have is suddenly redefined and renegotiated with a HD+ diagnosis (and even a HD- one!) The hardest decision I had to make was not about how my 'good news' would impact my siblings still being tested, but revealing my decision to change the Guardianship on my Will. My preferred Guardian has decided against testing, which I respect their right of choice. However in accepting their 'at risk status' I have questioned their suitablility as guardians of my children. It is very sad when we assume they are HD+ in the absence of a test result (although desparately hoping otherwise) we are looking for symptoms, questioning every jerk or twitch, something I'm sure you're parents are also doing with you, perhaps unconsciously.

Another issue that arose throughout the past very difficult year, was that Mum turned to me for support, thinking I can handle it because HD won't affect me. It does affect me, I have to witness this horrible disease ravage one loved one after another, but at least I am not seeing my own future in their deteriorating conditions. She will not 'burden' my brothers because they are still in the process of being tested. If they decide to keep their results a secret, their relationship inevitably changes, Mum won't share the burden of caring for their HD+ Dad. Both miss out on a level of intimacy and understanding. Is that easier to live with than worry and guilt? I can't answer that because I've only witnessed one side of the debate.

My Aunty (also HD+) has decided not to tell her youngest son (21 years old), in fear that he won't marry and settle down with a family of his own one day. While I accept this is her decision to make, I feel that HIS right to make informed decisions about marriage and children has been taken away from him. How will he react when he realises that his own mother withheld this information from him, and that we too knew of his 'at risk' status but were made to watch him self-destruct and put at risk another generation that IVF and other treatments could have prevented.

Our parents have to make decisions that are equally important and knowledge of our HD status could affect the outcome considerably (future health care, power of attorney, custody of younger siblings etc). After knowing my HD- status, Mum and Dad have appointed me power of attorney, over my siblings. This information was important to them and allowed them to make informed decisions about their future care.

To confide your results in your Mum and Dad will really depend on the relationship you have with them, and whether or not 'the secret' and your 'guilt of not telling' will be harder to deal with than HD. Your relationship with them will change whatever your diagnosis - asking this question already has changed your relationship - you are taking on the parent role, protecting your 'children' from worry and guilt. Ask yourself how 'knowing' will affect them, but also ask yourself how 'not knowing' will affect them and your relationship with them.

They confided in you their HD+ result. They had to trust you were strong enough to deal with it, so that you could make your own informed decisions. Do you trust that they are strong enough to deal with your results?

I wish you all the best with your test results. It is a very difficult time for you to deal with, so don't be too hard on yourself. Your parents will continue to worry about you whatever your HD status - that's what parents do. Whatever you decide will feel like the right decision some of the time and the wrong decision some of the time and that's just the nature of relationships. I hope your crystal ball reveals a better outcome for you and your children.

Shy, have you ever considered telling your cousin his status yourself? Your grandfather has 31 innocent descendants. It could start all over again.

I agree, tell your cousin. One of my exhusbands first symptoms was poor decision making. I'd consider this a poor decision and possibly related to her HD. He ABSOLUTELY needs to know he's 50% at risk. I'd risk the wrath of my aunt out of concern for my cousin's future and tell him. JMHO, Pat

Hi Tes and welcome,

I have mixed feelings here too but I know my Mum would want to know, she doesn't want us to hide anything from her. As others have said then you can decide whether or not to tell your Dad, together you can talk it out and make the best choice for him.

DH - you are making the best decision based on your knowledge and of course protecting your family. However to say your Mum will be long gone before you show symptoms is something you can't be sure of. I have found HD+ people show symptoms long before they realise it themselves, often others pick up on it way before they do. Don't kid yourself that your Mum won't notice signs before you do. In saying this I honestly hope that you are correct and that you won't show signs for a long time to come, the shorter time you have this disease the better. Lets hope you are well into your 60s before signs appear.

Debbie

Again, I'd like to thank everybody for their wonderful posts! I knew this would be the absolutely right place to ask my question. I appreciate the views from different levels, meaning parents, children, HP+ and caregivers. I have a lot to think about and will hopefully reach a decision by the time the results come in.

Thank you all so, so much!

Tes

Of course you want to tell them! Think positive...it will be a good result and they will both want to be happy for you!
On the side of reason, best of luck!