Is there anybody out there who tested positive and doesn't regret being tested?
I have not been tested but there isn't a day that goes by that I don't think that I have this terrible disease. However I am afraid if I test positive I will go into a deep depression. I sometimes feel that if I leave my family now it will save them the pain later of watching what will become of me. They can go on and live a happy life.

My dad doesn't regret testing positive. In fact, he made life changes and now (even 5 years after diagnosis) lives a better and more fullfilling life than he did during my whole childhood.

I hate seeing my dad and my sis suffering with HD, but I am amazed at their strength and courage to keep living and growing with HD. Please don't leave your family. In my experience, that causes worse suffering than seeing your loved one live with HD. My Grandpa and uncle both killed themselves and it caused so much pain and resentment in the family. I think you leaving before onset would do the same. Your family will not be happy with out you.

Your family needs you to show them how we can live through HD (even to the end) in a positive manner. This will happen if you decide to, even through the bad times. People with HD struggle and change, but they most definately have a lot to contribute to this world. If you test positive (and you have a 50% chance you will NOT have HD), you will have the opportunity to show your family how to cope with HD in a healthy manner. Do you have kids at risk? If you do, make them the center of your will/passion to maintain the courage through HD. They will need you to show them that HD can be faced head on.

If your not ready to test, don't. But realize, myself included, many have been convinced they had HD and they did not. In my case, I fell into survivors guilt. It sounds selfish to complain about a HD- result, but it took me over a year to accept it. I felt I had betrayed my sis and my brother because I was not going to have it. It was a lot of pain, but my sis (HD+ and very symptomatic) helped me see that it was okay to live. Without her, I would have been lost.

My husband said he chose to test because he couldn't stop wondering if he had the gene. It was consuming. He wanted to stop worrying about the "what if" and instead put all that energy into dealing with the result- positive or negative. In his case he was gene positive.

I think in his case it was the right decision. With his positive result he accessed medical assistance early on. He had routine appointments with a neurologist before he started noticing symptoms. He developed a trusting relationship with his physicians and we received valuable help from the beginning. There were challenging times with this disease but they would have been challenging wether we knew or not. I knew early on in our relationship that he was gene positive. For me, I know it was helpful knowing. I took the time to learn about the disease and it's symptoms. When I started to see things happen I was better able to separate the disease from him. I was able to understand what was happening and could seek professional assistance when it was needed.

Knowing didn't end our lives. It gave us the knowledge that we needed to learn how to live our lives to the fullest with what we were dealt.

Lisa

Thanks Lisa, can you tell me what some of the early signs were?

Thank-you. I do have two kids ages 8 and 10. I will get tested before they have to make this decision.

My mom has Huntington's and it so hard to watch. My step dad says that she gets ugly with him daily. Her moods change several times a day. My mom has never been mean to anyone especially her family, He said that he feels like he is losing his wife. I don't want to put my husband thru that.

I can't guarantee that what I think were early signs were truly HD and not just normal life issues but I noticed that he became "clumsier", had a harder time focusing and learning new tasks (especially at work), tolerated the normal day to day stresses less (became frustrated quicker), became agitated quicker. less impulse control,

There are days where I could say I show all these and I don't carry the gene. I just progressively saw more and more until it was obvious that HD was present.

Hi Peggy,

I tested positive a few years ago (CAG 42), and don't regret knowing. I just started showing symptoms a few months ago. The earliest symptoms for me were clumsiness, slurring my speech, occasionally losing my temper, my mind going blank. I was tested at 50, now I'm 58, and knowing for the past few years has been a blessing (in disguise). I was able to tell my loved ones, get them involved in research studies, and get good medical help for myself. I did wait until my daughters were in their twenties to tell them about my positive result, and that worked for us.

tellie

Peggy, if you are ready for the answer then perhaps you should test. It can go either way as you know.

I really didn't have a choice to test. I was symptomatic and didn't know it was HD. No family history so this was a virgin territory for me and my family. It boiled down to needing an answer.

I too have children at risk. They are much older and must make their own decision. I think of this each day.

Depression is in my opinion understandable. Who wouldn't be depressed. I've dealt with this as well. It's not only the diagnosis but the life changes that come with it. Life got complicated when we were no longer children (wish I remembered when that was).

It sounds like you are aware of many of the issues. Knowledge can be powerful. Use it to your advantage.

Mike

Thanks Mike. I am seriously thinking about it. I have been doing poorly at my job and wonder if it's the Huntington's disease or the other stressors in my life. I make such obvious errors every day. I'm at risk of losing my job. I want to take classes but because I feel I have Huntington's disease I don't think I would pass any of them and would be throwing away money. I don't even know if I have it and it's holding me back from living my life.

My daughter at the age of eight has been diagnosed with depression. This of course makes me wonder if she doesn't have it. It's driving me crazy!!!

Peggy I believe each situation is different, but alike. If this is consuming you on a daily basis testing may be the right thing to do. You would need address things like insurance and long term care, before testing. It will be impossible with a positive result. My wife was tested last year with a positive result, but I think it was the right thing to do for us. My children are older 15 & 17 , but I think it made the relationship with their mother alot better, because they understood what was going on. I will pray for you for what ever decision you make.

I absolutely agree with you! You guys, no disrespect, but how many of you are spouses that thought that it was right thing. Not that I am not a big fan of spouses, but it was the worst decision I made and though I deal with it better everyday, I don't support any one testing without symptoms and kids, do the en vitro thing. It will ruin your life and if I had spent time on this sight before, I might not of made that decision.

Yeah it gets easier, but its always there. Sorry girl. My blessings and to all you out there knowing is not better its hell.

This is one of the hardest questions anyone will ever have to ask themselves.

Mare you are right who is it easier for to be tested, the spouse thinks it was the right thing but its not their body and mind they are not really the one who has to live with it. I'm not saying its easy for the spouse either but it is defiantly not the same thing.

I believe (you can agree or disagree) you get tested for HD when YOU ARE READY to know the answer, or when the signs are so prominent you already know the answer and need to see a doctor and get some control. Everyday I want to know if my spouse has HD, I want to know if the symptoms are real, I want to know what our future looks like, but right now does it matter? We are happy, he is happy. I would ever push him to be tested unless as I mentioned the symptoms were at the point where you already know the answer. Maybe I am naïve, maybe I don't really understand because we are not at that point yet but what I do know is right now our life is fabulous not knowing and a positive result would send our happy little world crashing down around us far far sooner then it needs to be.

We talked my mom into getting tested because she showed signs. Now both me and my sister are to scared to get tested ourselves. I feel guilty for having her get tested. My husband doesn't want me too.

I couldn't live without knowing for sure

This is a perilous journey for all who are on it. Many don't have a choice. If you are positive everyone in your life is affected whether they will admit it or not.

I go through talk therapy at least once a month. It's always good to have an outside professional opinion. Things get so blurred in life and we miss a lot. Us and our support groups.

I was reminded today that I am not addressing my situation. Seems a little selfish at this point. I still want the same things I did before the diagnosis.

mike