[livingwith]

My Grandfather was diagnosed with Huntington’s Disease when I was just a little girl and my Grandmother didn’t know much about the disease, but disclosed the information regarding it. For a long time we all were under the impression that he died of cancer.
Then my Aunt was diagnosed and now my brother was just diagnosed. My father died of different causes before he could ever begin to get symptoms. The more I research the more scared I become and not just for myself but for my b...Read the full article

[jnielie]

I am just five years older than you and I have a four year old. I know what emotions you are struggling with. If you want to know why I'm sure some doctor could give you the medical explanation of your DNA or the church would tell you that everything happens for a reason. I don't listen to any of them. Their words do not comfort me or give me the answer I am looking for to "WHY ME!". What I have decided to do is not ask why,but ask how. How am I going to live my life? How am I going to make sure that my son knows that no matter what happens I love him? How am I going to fight this?

My father-in-law was taking the garbage out and dropped dead from a heart attack at 66. That's something that could happen to anyone,but still my husband asks why did he have to lose his dad? Life is a precious thing. Huntington's Disease might not be the thing that ends me or you. You are so young and have so much to worry about with everyday things that I'm sure this seems really unfair. I am so sorry that your brother is not doing well. Make sure that he knows that you love him. Get up everyday and love your kids and get busy living. You are not alone. We are all there with you in spirit.Be strong.
Jenny

[bettiejean81]

Hi my grandmother is dying right now of HD. We found out that she had it over 10 years ago. And it seems like all of us just have deserted her...All of us except my grandfather, who faithfully cared for her, until he was physically unable. The decision was made to put her into the nursing home a few months ago and here in the last month, she gets infection after infection. This last infection she got, her body is not fighting off anymore. They had her on 7 different antibiotics and nothing was working. Now, Hospice has been called and we are waiting.
The most messed up part is that no one offered any of this info to me. I thought I was going to the nursing home for just a visit on mother's day and I overheard my grandfather talking to the nurse about whether or not Hospice had been there today. I nearly hit the floor. I knew it was coming, but I guess I figured someone might tell me. No, my family is working on the avoidance side of things and trying to keep it all hush-hush. I finally got my aunt to talk to me today...And I was damn scared to ask her anything. I cannot talk to my mom about it at all. I think she has it too. She acts so inappropriate, so different. And she has told me for years to never ask my grandfather or my other family members about it. She never offered advice on what we could do as her children, or what she might do if she got it.
I am feeling so weird about this all, and am so tempted to fall into the same avoidance thing...but that's not who I am.
I think you are lucky you have your brother and he has you. My mother has pushed us so far out of everything and away from everyone, that I feel so awkward talking about it with my family. MY FAMILY the people that have the most knowledge about our history.
I am feeling so lost today.
Mandeline