Hello all, I am new to this forum. I am freaking out and nobody knows what it's like... I took the HD test a week ago and I am not taking the waiting period well. I made a suicide attempt right before I took the test, partly because I am pretty sure I have it. My Dr. said something along the lines of, "you've already convinced yourself that you have it, so you may as well know." I am so scared and if I do have it, I'm going to seriously lose my shit. I am NOT going to live in a home. No offense to anyone who does, but I would rather die than lose my freedom. Any words of encouragement for me?

Waiting is hard, especially for this news. this is a good forum to come for encouragement, knowledge and venting when you need to. Stick around.

Take it easy,

Carla

Keep doing things you enjoy doing while you wait to take your mind off of things. I know PLENTY of people who SWORE they had it and the test came back negative, Keep in touch

OK, thanks for the responses. I would really appreciate some encouragement, though. Like, "even if you do have it, it will be OK." You know, that sort of thing.

Or really anything. Any words would be better than the deafening silence. I am begging you, reader of this post.

I was pretty sure I had HD when I took the test but the psychiatrist didn't seem to be convinced that I did after meeting with me.

After the blood draw I kept extremely busy in any way I could--going to the movie theater, reading books, going to Barnes and Noble, going to a coffee shop and reading...just getting out and keeping busy. I also stopped reading about HD online during those weeks because I guess I had no need to read anything more at that time since I had finally made my choice to get tested. That was very good for my mental health.

When I went for the results the day of was nerve wracking...I am sure a few days before were, too. The doctor told me my CAG was 43 and so I knew I was really having symptoms like I had thought.

I felt relieved to finally know for sure and a bit validated since my friends and family just didn't seem to "get" that I really had HD and I wasn't imagining things.

I felt really fortunate knowing all of the resources I have access to which my mother (who had HD) didn't. Genetic testing, Center's of Excellence, some meds, research, drug studies, internet with lots of information and support, support groups, etc.

I know when I first became symptomatic when I would look in the mirror I would just see my mother looking back at me. I wasn't doing so well at that time. I thought my HD would be the same as my mother's HD. But then I realized by going to support groups and national conferences that there are so many people with HD and lots of different symptoms and degrees of disability. Some people were maintaining and doing really well over the years.

So then I realized this was my HD and my HD wasn't my mother's HD. My mother had had suicide attempts, etc. But I realized not everyone with HD goes that route. So I put my mind to trying to do what I can to be as proactive as I can. Reading about how others were coping with their HD on this forum helped me to think positively.

I also stopped labeling my new limitations as "bad"--like "oh my handwriting is so bad now." "My walking is getting so bad." And instead said "oh my handwriting has sure changed. I will try to type as much as I can instead of write things by hand to make things easy on myself." Or "I will plan out in advance how I will get around before going out so I can feel secure knowing there will be places to sit along my path. Then I can break up my walking and manage much better."

It takes time to work through all of this, of course. So be easy on yourself and take the time you need to work through everything.

Wow, Margie. Words cannot express how much I appreciate your taking the time to answer. Please understand that I am way too anxious and upset to effectively put into words how much. You have truly made a difference in my life.

Isa,

It will be ok no matter which way the test comes out. I am still coming to terms with the fact that my precious baby might have HD. I keep telling myself that they are coming up with new treatments everyday. Keep busy like others have recommended. When you get the results, give yourself time to absorb the results. Then, move forward with the info you have. Good luck. I know it is hard to wait for such a thing.

Thanks, salamandah!!

ISA,

Read my story.[www.ruledomain.com]

Will

Isa, the best thing you are doing is coming to this sight. I didn't discover it until 2 years after my positive 42. I was such a mess. There is so much knowledge and support and those who are living positive with a positive test. Since I've committed to the supplements a couple of months ago I feel so much better. The research is going pretty well right now too. So much even since I discovered my HD gene. Thanks everyone. Keep doing your thing!

I just took the opportunity to re-read Will's story. He's among the most inspirational people here, in my opinion.

I can relate to so much of it, feeling better after my positive result (43) once I had ordered my supplements & signed up for PREDICT and knew I was doing all I could to take as much control as possible of my situation.

Testing will not change whether you have the HD gene or not. It just changes how you can react to the knowledge one way or the other.

Besides supplements & tests, I've also decided to live life to the fullest a bit more. Nothing totally irresponsible or on the edge. Just saying YES to a girls trip to another gf's wedding across the country, even though I was a bit short on cash at the time and it would have been smarter to say no. I'm all about NOT spending money on unimportant THINGS, and saving it for fun EXPERIENCES.

I agree with the others that those ultra-sensitive to symptoms will always find them. Even if you have the gene, I'm not sure if docs would necessarily attribute what you are experiencing to HD. Certainly if you have the gene, you have a possible explanation for perceived symptoms. But people with the HD gene and people without the HD gene can experience some similar things when under stress or with aging.

Even if you HAVE the gene AND have symptoms, you should concentrate on how to make the most of life, manage your symptoms and/or take available supplements to give yourself as much quality time as possible, and hope that one of the dozens of things in the pipeline might make things even more manageble. One of them might even be the cure. And it only takes 1....

While you are waiting, find some positive distractions! Research a new hobby, google how to fix something, volunteer somewhere, or even just take a nice walk!

Thank you for all the responses. I got the results back... 39 repeats.

Isa, how are you doing? Not the best result, but still an optimistic future. I hope you are doing okay

I am sad, but also thankful that it's not worse... I feel numb. We are celebrating Mother's Day tomorrow (she was out of town on the real date) and I don't know what to do. I don't want to ruin her day by breaking the news, but it would also be weird and difficult to fake it.

It is difficult sharing test results with family. I did not want to share mine (even though it was neg.). I was afraid of the implications. I didn't want my sis to resent me or my brother (he's untested). I felt very guilty. I feared my mom would think why not me..., instead of my sis etc... It was hard to accept good news while seeing my family suffer.

I can't imagine what you are going through. In the end you will know what you need to do for you and your family. Praying you have an enjoyable time with your family and that your spirits are lifted.

Hope you're doing ok. We still haven't shared the pHD info with any family. I don't want to cause any insurance or other such problems for my little boy is one reason. The other reason is that we don't need any "sympathy" or any support at this time so we just don't see the need right now. Someday I know we will have to when symptoms start. I actually think some very mild symptoms have started (often "short fuse". I certainly wouldn't fault anyone who would disclose results. It would feel much better to know we aren't withholding information from those we love.