Danielle this is not about age, but age is a factor. You think that knowing will be a wieght off your shoulders, I did too when I had my husband got tested. If you get a positive result you will have a bigger, heavier, darker weight on your shoulders. And you will know that the weight if final, no escaping it. I thought knowing my husband had it would be the begining of things being better. They were not. We went through our own depression and tail spins for a year or more.

Even a negative result in some cases is not a wieght off your shoulders as some can tell you about survivors guilt.

Based on your post, you are scared, worried and hoping for things to turn out right. What if they don't? Do you have a plan?

I think talking to people in this situation is a great idea, even people your age. Matt is a positive role model, there are lots out there. But he is the best case scenerio. You need to learn about the worst case scenerio. Will you get counciling with the genetic test?



Edited 1 time(s). Last edit at 07/03/2011 07:42PM by MRO.

MRO - I think you have your positives and negatives mixed up in the above post? I'm also not symptomatic, I don't need care, I'm not ageist and I'm definitely not 'pro-test'.

Here's what I am, I'm a perfectly healthy 22 yr old, who decided that I wanted to know whether I had the faulty gene for HD or not, so that I could plan my life with all the knowledge I felt I needed to do so. And when it comes to testing I am 'pro-make-your-own-choice', because that is each individual's right. And as Danielle has just shown, you can be told to do this, that and have everything in order first, but if she really wants to test, she will. And she will do it in her own order, because that's her right. This is my point, in a perfect world people at-risk would all go down the route Eric spoke of, but that is simply not how things are in real life for everybody, some choose not to go down that route, some get inadvertently taken off that route and others never had that choice to begin with. Life is never that simple. What if your 19 yr old really wants to test and is adamant about it? You try to explain what he should get in place before testing but he is still certain he wants to test, what can you do? Argue with him? Tell him he is wrong? Tell him to wait? Tell him he is not old enough to understand? Sometimes things don't go the way you want as a parent, I doubt my mother wanted me to test at 19 but that's life, I made my choice and she had to stand by me.

Danielle - Testing is difficult, whether you test positive or negative, both will be hard to move on from. The advice given by parents on here is good advice and you would be better off for listening to it (definitely the insurance part). But the experiences of other young people who have gone through what you're going through is also useful to you, and that's important not to be overlooked here. If you need a chat let me know, and very, very sorry for hijacking your thread.

Take care,
Matt.

[www.hdyo.org]



Edited 1 time(s). Last edit at 07/03/2011 06:37PM by just1moreperson.

i understand what your all saying but being tested it something i have my mind fully set on and i really want to go through with it. Im willin / waniting to talk to any one whos willing to speak about what they are going through or what they have been through. I may only be 19 but i do feel i do have a decent head on my shoulders and what ever the result may be i will take each step at a time.
thanx for the comments.

Yes Matt I did have my negatives and positives backwards. Thanks.

I also do think you discount what parents have to say and I think you do it disrespectfully and that you are not responsible in how you advertise your success.

And you are damned right I will say everything I have said on this post to my children in hopes of changing there mind. I will do so up until the time their blood is drawn. I will not say that are wrong, which I have not done in this post. I will say I want better who doesn't. And after the testing process I will be there to do whatever needs be done.

Danielle's original post did not sound so clear about testing. I am glad she feels that she is ready for the testing but I too would prefer she wait, she doesn't have me convinced. Not that I am anyone to her, but maybe what I have said will make sense to someone else.

Maria??? Matt just said it would be good for her to listen to the advice of the older folks too...i'm sorry maria, but let's not continue hijacking Danielle's thread, ok? Let's just get back to her. She seems to have a really good head on her shoulders, wants to go through for nursing...she has plans for her future, has already started the testing process, and would like support and advice. Maybe this is a good time for her to test. But Danielle, this is what i might suggest to you. As you're going through the testing process, you can still change your mind at the end, and delay getting the results if you're not ready for them yet. This is what i think will be important for you to do...get your depression in a better place...maybe a dif dose or dif med...and once that is taken care of, then get your results. What do you think of that idea Danielle? If you test positive, do you think it would change the course of your career choice? I think that's what many of us worry about here, that we just want young people to not cancel their future plans if they find out theyre positive, but to try and have as much of a normal life as possible. You also said you want to know, for starting a family, and that is a very good reason to test. If you're not starting a family right now, then waiting just a couple of years, could be a good thing. But for some people, the burden of being at risk, is greater than the burden if they were to be positive, and that is what i'm wondering, if that is where you are at. Then that can be a good reason, but, if, your depression is stabilized first too. And also, because it is such recent news about your dad having hd, sometimes it's a good idea to process that horrible grief first, and then, when you have had time to deal with that, then go forward with the rest, see what i mean?

PS Maria, i'm not trying to discount what you are trying to say to Matt, and how you are feeling, but i'm just thinking maybe you could start another thread about that? Please don't be upset with me Maria, i do value what you have to say



Edited 2 time(s). Last edit at 07/03/2011 08:31PM by Barb.

The thread hasn't been hijacked. It is about Danelle and if she wants to know how parents feel she is getting a taste. "It's right for me" is one way to go. Is it right for everyone? Is Matt's mom sleeping well at night thinking her window is closing before she is a caregiver again? Probably not. No matter what she says to Matt. I know I won't if one of my son's test and are positive. It's a family disease after all. This young lady was asking that... and effects it will have on her family as well. As you might imagine.. the news will be crushing. And Maria is responding as mother, as a PRIMARY caregiver and as one who's odds are to be one again.

The ones who opinions will be missing from the 'all kid group' are the ones with the life experience. The recorders of the family history as the people with HD come and go in our lives. HD as a community is becoming more fractured and segregated... and I am not personally fond of that. If a person is 20 and at risk from HD and is actually adult they should be able to converse with a 40 or 50 year old person... and not need to swim in the kiddy pool. They are wanting to make adult decisions then speak to the adults who are parents.. who have kids... who have watched the entire process for non symptomatic to death of HD. Those who have a perspective of life, both comfortable and uncomfortable.

Nothing on the forum is completely about the individual person. It's a group conversation. And i am aware what I say to this person might resonate with another person. In a good or bad way. It might to other parents as well who if the parent leans to the way I feel, can direct their own younger child to think long and hard before doing. Just like we encourage with education, marriage , sex, finances.

Anyway Danielle... if you want to know how your family will feel if you test positive... they will feel crappy. My own wife recently passed away and knowing either one or both of my sons will be going this way will be crushing. It's an awful disease, and I have seen plenty of it and cared for it too, as both primary and secondary caregiver... and the news won't be good... and as strong as I am there are limits.

Nursing is something iv always wanted to do and if i test posotive hopefully it will have no effect on me continuing my carer. As for my depression i am going to get that sorted again and i am going to seer my doctor agen. Yes i do see what you mean and i also agree it needs sorting and i need a little time to get my head around things, but as i said i have 2 month till i see the consultant, then another 2 month till i get tested then two week. So it is a while for me to change my mind if needs be. At the moment im concentrating on my future and to know completely what the future does hold for me, testing is something i feel i NEED befor i can fully plan ahead.

Agen thankyou for all your comments..
Danielle

I'm glad to hear that Danielle. I think you have a good head on your shoulders. When i tested it positive and symptomatic at 46,, 7 years ago, it was a very positive experience for me, because i now knew what i was fighting, and could deal with that. But even though i was glad to have my results, i did go through a real time of grief, and i think that is to be expected, but things got better after the grief, and i was able to deal with what i now needed to deal with. It's hard to fight the unknown, but when you know what you are fighting, it can be very positive. How do parents feel. Well my parents did not believe my results, and many many times over and over i had to say, yes the doctors did say i have it, and they would continue to respond with, well maybe someday. That was an extra burden having to deal with their denial, but i bucked up and had to deal with that too. Honestly, it's good that you're concerned with how your parents will feel, but in the end, you're not responsible for how they feel before during or after your testing. It's not like this is your fault or anything, far from that. So care about your parents and others, but in the end, just take care of you, that's what's most important. My children are both adults. If we had known about hd when they were teenagers, i would have had a lot of discussions with them about their future choices. But because they are both adults now, i leave it up to them, completely. If they decide to talk to me about hd, then im happy to talk to them about it. If they do decide to test, it is their decision to make, and hopefully they will let me know if they decide to test, and let me be part of the process with them. Yes my heart would break for them, but i can deal with that. Do your parents know that you've started the testing process? I also know that my life experience with hd is very limited compared to others here, who say their concerns, because they really have been to hell and back with hd. Eric is right, it is worth listening to what everyone here has to say.



Edited 3 time(s). Last edit at 07/04/2011 06:07AM by Barb.

Hi -
for us the time to test was when not knowing was interfering with our lives so much that we just had to know - and it was a very good thing - as Barb said it was so much better to KNOW what we were fighting... but my husband was 46 and starting to be symptomatic so we were 2nd guessing everything and it was making us crazy. He has 3 sisters who are not symptomatic and have absolutely no intention of testing... and, between us, unfortunately, 8 at risk childrend (only mine are 50%)... as everyone said on this string, it is such an individual thing - Daniel, you sound like you do have a great head on your shoulders and you are not rushing into this. you can change your mind at any step of the way and put it off - it can always be done in the future but it can't be undone. In the meantime you can care for yourself like you have it - fish oil, exercise...whatever you choose - all things that are good for you if you are HD+ or not.

Good luck.

Yes my mum and dad both know iv started the process and are both standing by me and my decision 100%, they have let me make all my choices and have not once told me its the wrong thing to do. Feel lucky to have them by my side. They both just want whats best for me.

Good luck Danielle, hope all the discussion is for nothing and you are tested negative. That would settle that...

Barb I am unsure how I have hijacked this post perhaps you can pm me to show the error of my ways. Every post, although contrary to some other beliefs is on subject. I think I was within reason to call Matt out on what I perceive to be his own bias and what I perceive to be reckless.

Sorry you don't agree but there is no reason for another thread.

indeed it would. & thankyou , hope i do too.

Maria, when i said "let's not continue hijacking Danielle's thread, ok?" i meant it as a collective plural question to everyone. I'm sorry if you thought i meant you were doing that, maybe a poor choice of words on my part. What i meant was this, that Matt had just finished apologizing for hijacking the thread, and said Danielle would be good to listen to the older folks, and then your post lashed out out him after he had apoligized, that's all. That's all i meant, i didn't mean you any harm Maria, because yes Matt did hijack the thread and start attacking people, and that should not have happened. So when he tried to bring a stop to it, and you carried on, i just felt it would be better for people to start talking to Danielle again, that was all, that was all i intended. The only reason i suggested another thread, was because i said i value what you have to say, and i feel there is a lot more that could be said on the Matt topic, i just thought another thread would be a good place, that's all, it was just an idea, not a firm statement, just a suggestion, that was all, and none of this was meant to be taken as anything other than a suggestion, and so if i didn't word some of my words right i'm sorry i didnt word them right. I did not mean you hijacked the thread in any way. I was speaking plural to everyone, but that was a poor choice of words. I just wanted the thread to come back to Danielle, that was all i was suggesting

Maria, yes, i will send you a pm tonight too, so i can tell you i'm sorry, i didn't mean to upset you