Hi, my name is Viktoria and i'm 19. My father had Huntington's Disease for about 13-14 years. I was around 6 years old when my father got Huntington's. I really didn't understand what it meant to have Huntington's. My daddy was an amazing father, he could draw very well and loved working on cars. I heard that my grandpa ( dads dad) had Huntington's disease and he passed away from it. about 3 years ago my dad fell down our basement stairs and he had two fractures in his skull and was in the ICU for awhile. He came back home and things started getting worse. He would stumble and fall. He hit his head a lot on the walls and on the corners of things. When he would eat he would choke on his food. We had to stop giving him some of the food he liked because he would choke on it. On April 1st of this year was his 49th and his last birthday. He was fine on his birthday, he was laughing and smiling. Then something changed, he got really sick. He slept for days and lost a lot of weight. They put my dad on hospice a couple months before he passed away. I didn't understand it then but I wanted my mom to take him to the hospital, but before my daddy got sick he told my mom he didn't want to be hooked up to machines. I got a phone call from my mom saying that the nurse told her that he only had like two weeks to live. Then the nurse came back two days later and said he only had 48 hours to live. I went to my moms and stayed there. My dads family came over to see him, and they said their goodbyes to him. He started fighting with us, he didn't know who i was. he kept telling us he was leaving. He told me he saw his father in the corner of the room telling him to come home. My mom looked at my dad and told him it was okay to go. That he could let go. He settled down and fell asleep. I thought everything was okay and he would still be there in the morning. I told him that I loved him and hugged him, and went back to my house. On April 12 at 9:07 a.m. my daddy passed away. and i wasn't there. I got there 7 minutes to late to tell him goodbye. I wasn't there with my family when god finally decided to stop my daddy's pain. I want to get tested but i'm so scared. I have 2 sisters, i'm the youngest and 4 beautiful nieces, all of us could have Huntington's disease. I don't want to have kids because i don't want my kids to go through what i went through..

Thank you for reading. I just had to let it out thank you.

So sorry for the loss of your Dad. You are not alone here with your fears! Sounds like he went downhill rather rapidly and that seems to be a blessing, even though you are never really ready to say good bye! Please still know that there is still a chance that you DO NOT have this disease and until you confirm or deny it, you will be peeping around every corner trying to decide if " this is it". We are all here because weve either been where you are or have cared for abd loved someone in your same shoes! Please come back and read other peoples stories and you will gather much encouragement, love, support and just general knowledge! Bless your heart and your dear mother who honored his wishes fully. That's a hard call too. Don't kick yourself for not being there as he was passing. You are doing the best you can and I feel sure he knew how much he was loved.
Vicky

Thank you! that means a lot. I will come back to read more stories of other people dealing with Huntington's disease. I know there is a chance the I don't have Huntington's disease but it still worries me a lot. I'm glad my mom honored my father's wishes. I love him so much. It just hurts that I wasn't there. I've heard of other people who having Huntington's disease but I've never really talked to other families who have or had to deal with the same thing.
Thank you!
Tori

Of course it still worries you. Wouldn't be human if it didn't. This is a dreadful disease , as you have seen, and until you know for sure either way, you are going to question every thing. That is very normal. My husband has Huntington's and I have 3 stepsons and one granddaughter at risk. Hard enough to lose someone to it, but to also have a chance of inheriting this ugly little gene or other you are close to is almost unbearable. I am sorry any of us are in this boat, but the only thing we can really do at this point is get involved. I fully believe there is someone out there who can figure this all out. Someone holds the key and we just plan to support their efforts by volunteering, donating, raising monies and awareness, praying, participating in studies, supporting other afflicted and at risk family members... etc. This is all we know how to do to try and find the answers to cure this sucker. Too late for your dad, and most likely my husband, but hopefully not for those currently at risk. Please know that we are praying for you and your family and come back and see what others are currently sharing, you may see many similarities to your own situation.
Bless you
Vicky

Vicky

Viktoria, I am so sorry that your dad passed away. I have 2 sons who have HD one of them lives with me, the other one still able to live alone. I also have 3 grandkids, 2 live at risk and one has tested and is negative. (she was 21 when she decided to test) This disease is a heart breaker, your daddy is finally free and I'm sure he is smiling down on you every minute of every day.
Sending you much love,

Carla

Like you, my dad passed from HD. I also haven't been tested. Part of me doesn't want to know, part is scared. My advice is, that only you know if you are ready. You have to be able to deal with the rest of your life if your tested. It's a huge step and only you can make it. Only people living at risk can know exactly how you are feeling, which it's another challenge in itself. I'm here if you need me.
Christine - chriss6007@comcast.net

Find peace in what you did for your Dad. Please don't second guess what you did versus what you could have done.

I am a PhD and didn't know how quickly people can cross the line until I met a fellow a few days ago. I was sharing with a contractor about having HD, my cane and balance issues when another worker turned to me with a startled look and said, "you have Huntington's"? "I've never met anyone outside my family with HD'. Then we talked, I got the stories and very much willingly; it was good for me to hear those stories. I know more than my family and friends about what is ahead.

You did what you could. Be proud, not sad.

Mike