Hello, I am new to this site and still learning more about Huntington's disease I join this site because I am looking for answers and just hope. I am 20 years old and I am sophomore in college, I have an amazing boyfriend in my life since two years we met in high school and he's a year younger than I am I have grown to love him everyday and even though we may be young I know deep in my heart he is the one. My story begins when I learned about the disease a few months ago when he told me for the first time that there is a risk that he may have HD and through the months later I was just hoping and praying that he will not be diagnosed with HD until a few days later when he decided to get his final test done. And came back with the shock that he has HD I was speechless because we always talk about a future together and just growing old. I don't know what to do I feel completely lost, I am still very young and I want to learn more about HD. I was hoping that someone would write back and help me learn more about HD and to also give me hope that maybe we can continue to have a life together now and in the future I want to hear about other peoples stories and opinions about how they are dealing with HD with themselves or as a caregiver, please I need answers and that's what I'm searching for anything will help. thank you

Welcome to HDLF Estrella and thanks for sharing.

One of our goals for this site is to bring people up to speed on HD as quickly as possible. So to achieve that we've posted many stories that several of our fellow HD family members have chosen to share with us.

We have them grouped into HD Family Life with subgroups for Living HD Positive, Caregiving, and Living at Risk.

You can go straight to HD Family Life by clicking on [www.hdlf.org]. Please take some time to read these stories because they will provide a lot of insight into what it's like to live with Huntington's Disease from many different perspectives.

If you are looking for insight on a specific topic then we offer the search boxes at the top right of the page. On the message board the search box will scan messages that have been posted on the message board. On the story side of HDLF.org the search box will search the articles for the selected topic.

Best wishes to you ... stay strong.

Steve

I would highly suggest reading over older posts here. That's what I did when I first found this site...I spent hours looking over what everyone had to say. One thing I learned from Barb (a pHD) is that HD affects different parts of the brain in different people, so no 2 are really affected exactly the same. But there can be many common themes. Some people seem to be less affected. I personally feel Will (check out his supplement and exercise regimens) is on to something with his diet, exercise and supplements. Other times it could be those with a higher CAG are usually likely to have earlier onset and therefore you may see more symptoms maybe...I don't know.
Some caregivers have a horrendous time with a person who becomes unmanageable and abusive. Others seem to get along fairly well and treasure their time caring for their loved one. For others it's somewhere inbetween. There have been some really sobering stories though. Some people report that the person they once loved is now just a shell and unrecognizable to them. I guess everyone changes (pHD or not), but you should thoroughly research what the worst could be and prepare yourself to see if you are up to it. Maybe the worst wouldn't happen, but it could. Another thing to ponder is about children. That's a huge hot topic. There are ways to conceive an HD free child, but I believe it's expensive. There is the controversial method of abortion if you do testing before the baby is born. A lot to think about. My husband is pHD. So far I don't regret marrying him, but he has no real symptoms yet. I married him without knowing HD was in the family (he didn't know either). I wonder if he will change much...that is a hard thing for me to deal with: the unknown. It's like a potential time bomb ticking. If he would become violent, that would be a deal breaker for me. I hope others chime in and give you more info to think about. Right now you're in the honeymoon love phase, but you need to try to put yourself in the 20 years + down the road phase and think about the different ways reality might look like.

Welcome to our community. You can find many answers. It is up to you as what you do with them.

I am a pHD and there isn't anything I could add to the fine responses you received from Steve and Eve. Join in with questions and concerns.

Everyone does seem to present differently both in terms of symptoms and age. Will must be on to something with his routine.

Marsha does a lot of researcwritingitting about HD and her husband Steve contributes a tremendous amount of effort to this site. We can thank them for this wonderful site. I found more information and support hereanywherenywher I turned after being diagnosed.

Good luck in your quest,

Mike

Welcome Estrella,

You two are very young. He has now had his genetic test. Unless he is suffering from the juvenile form, or very early onset, he will still have many good years before HD starts to rear its ugly head. There is a wealth of information about how he can live healthy and positively to put off onset of symptoms. I see it as much the same a diabetic avoids lifestyles which cause their blood sugars to go up, people who are gene positive for HD can do a lot for themselves through healthy diet, exercise, well-being and spirituality, avoiding activities and "chemicals" which damage the brain....there are many ways to face this diagnosis positively. Will and Matty both have great advise for living positively during the pre-symptomatic phase. Time is on your side, and we are ever hopeful that an effective cure is on the horizon. It's a matter of your BF treating himself and his brain well in the meantime.

As for you, it takes a special person to be a caregiver as a spouse. By mid stages, my relationship with my husband has changed greatly. He is more my ward, a person I love and care for and devote my life to along with my children. He is no longer able to be my knight, my lighthouse to pull me through darker times, my maintenance man, parenting partner, breadwinner, snow remover or defender. I have found strength I never though I had, but it took a long time to find it.

I love the feeling of love and admiration from my husband for my help. I feel we can have more trust and care than many friends with "average marriages" I can't let myself get burdened down with anger toward my husband, jealousy of what others have. I would drive myself carzy. I am not going to grow old with him. I need to make the time with him as wonderful as it can be. This is his entire life, but it is not the rest of my life. I'll save my own wants and dreams for after his part of my life is over. Only then can I put my own needs first.

I hope this can give you a little insight into how it is to live with HD.
Patty