Hello all-- my name is Grizmo, and I am a college student studying biology! My mother was diagnosed with HD in 2008, when she was 59 and severely progressed. Today was her 67th birthday, and all I could think was that I wanted to call her on the phone and say I love you, happy birthday Mom. I'm also writing a neurobiology paper on HD and it has just been all over my mind lately, I can't control my thoughts and starting crying in genetics lab today. She is completely vegetated now and cannot walk without assistance and falls when she tries. My father takes care of her full-time every day, and my heart hurts for him. I am going to make a long story short before I pour my heart out, so I have been a wreck today and think I've released a lot of suppressed memories... I didn't remember that she would literally say or gasp "help" in that horrible mouth awful jerky raspy horrible HD voice, but no one helped her. We had no idea. After I moved out at 16 and my dad coaxed her into a hospital/doctor's office (at her adament opposal), it took two years of hospitalizations/appts and a number of diagnoses before she was diagnosed w/ HD-- by one, simple blood test. I can't help but think of how scared she, and all HD patients must feel when they don't know what's happening to their body. It breaks my heart, I am having trouble forgiving myself, terrified that I have it (so similar my mom), and I'm furious about the limited acknowledgement and current understanding that exists. I want my mother's birthday, Nov 5, to be National Huntington's Awareness Day. I know it already exists, but we need more. What can we do? All of you are so strong for sharing your stories on here, thank you and keep fighting!



Edited 1 time(s). Last edit at 11/07/2014 12:30AM by Grizmo.

Hi Grizmo, welcome to the forum. First, I want to say how sorry I am for all you've gone through, and very proud of what you are doing with your life. You know, try not to also feel guilty, if your mom was well, she wouldn't want you to feel that way. Welcome