Hi,

I'm Robin, I'm new here. My father had HD, as did his father before him, as does one of my older brothers. I'm 33, right about the age my dad was when he became symptomatic. Being tested is something that I've been going back and forth with for years for many different reasons.

Is there anyone who struggled with the decision of getting tested? And, if so, what made you decide one way or another? Or are you still struggling with it?

I've been noticing that I'm more irritable lately, but there has been a lot of stress in my life and I blamed it on that. Then add to that increasing forgetfulness, losing my focus, unusual fatigue.... and then my husband told me the other day that I drop things a lot....... It's just got me scared.

It might be worth asking your mom or siblings about how you were growing up. When I first found out I was at-risk I got really nervous because I drop things ALL the time and I feel like I'm getting more and more forgetful. When I talked to my mom, she said I was always a clumsy, forgetful child. XD

I could still be positive and it could still be symptoms, but it was reassuring to hear that it wasn't anything particularly new for me. You could just be hyper-aware of yourself, now that you know you're at-risk. LOTS of those things can be attributed to stress.

I never really struggled with the decision to get tested...but I'm certain there's many people here who have and can give input on that.

Hi Robin, I'm somewhat new here too...and I hope that this community page will help you to get your feelings out, make you feel better about any decisions you are facing, and to get insight from many others with experience with HD, as it is helping me.

My boyfriend has HD, and I had told him that when he got tested I didn't want to know the results.
Well, I found out anyway, it was impossible not to.

Then, the main reason I did end up wanting to know his results, and mainly his reason too, was with respect to planning a family and having children. Other people in your situation may have different opinions.

Now, I am glad that I know, well if I had no idea about this HD, because he is so unreasonably jealous and mean sometimes, he would have been LONG gone! I wouldn't have put up with the way he treats me if he were someone without HD, and I would have left him, truthfully. Recently though, I have been struggling with whether or not his behaviour issues are indeed coming from HD, or if he is just like the way he is naturally (but that's all a different story). It really is all so confusing.

That is my reasoning, and other peoples' reasons vary greatly for choosing to get tested. Personally, I think a major pro to getting tested, in addition to what I've mentioned above, would be getting proper medical attention, or even getting into preventative lifestyle habits, as it seems the disease, if treated properly, can be managed more easily, and potentially even delay onset, of course no guarantees.

I think you are doing the right thing by posting on this community. Read over previous posts that may apply to your situation, or to any questions you have about this disease in general. Listen to what people have to say, listen to what your heart tells you, and seek counselling with a specialist about the subject. It sounds also like you have done some soul searching already, and perhaps you are just still not ready to find out.? Take your time, and best of luck to you!

Take care!

OK - I don't have hd and it is not in my family. But my boyfriend does and his grandmother and father both passed because of it - they were 73 and 69. My boyfriend was tested (before we met). After dealing with him knowing I don't recommend the test. He has given up because in his mind he is a dead man. None of us are guaranteed a tomorrow. Until things are out of control, mentally I believe quality of life would be better not knowing. His sister has not and will not get tested mostly because of how it changed him.
You have to do what is right for you. This is just my opinion.