WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

I lost my mom, she was 46, in 2001 of Huntingtons Disease. My mom fought the battle for 16 years of her life. I felt like the older she got, and the worse she got that the roles had switched. I felt like I was the mother and she was the kid. I tried so hard to help my dad as much as I could. She had such a big temper. It was so hard to get along with her towards the last 5 years. In those years, she weighed about 85 lbs. and we had to help her in the bathroom, feed her, bathe her, clothe her. She couldn't do anything by herself anymore. Before she went into a nursing home she was wheelchair bound. If she tried walking by herself the slightest she would fall. No balance what so ever. The last time that I saw her before she passed away, she didn't even remember me. That was the saddest moment ever. But....even all of the craziness and drama, the weird habits.....I would take all of that back in a second just to have her back. I also lost my 3 aunts. And my grandfather commited suicide at the age of 30 because he knew he was abusive menatlly nad physically to my grandma and their 6 kids. He didn't want them to live that way....
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My name is Amy and I am 26 years old. I just recently tested positive for the HD gene in March. I have a hubby of 5 years and a daughter who just turned 3. I have 2 brothers that have a 50/50 chance of getting this thing. I was really scared to have a life until I got tested. I was used to it being drilled into my head that I should get tested before having kids or getting married. I was always told that if it ended up being positive not to have a family. But in my eyes....its the only thing keeping me going. I've been through so much depression because of this. But when wake up every morning and see what you have, and what you will have for the rest of your life......its the greatest feeling in the world. It doesn't make me think about it near as much. I had the option of being tested when I was pregnant, and I decided not to. But now after having my daughter for the past 3 years and debating on having more kids i thought it would be a good idea. But that's OK. I'm actually doing a lot better than I thought I would. I think that getting tested was a great decision, I don't regret it at all. It has made me a better person. I stay very very busy to stay focused. There's always a reason for everything. And I was given this to do positive with it and for it. My goal is to do as much as I can until I can't anymore.This past May 5th I held my 1st annual walk-a-thon here in Deltona, and raised over $11,000 in 6 weeks of planning. Over 150 people showed up! It was the best feeling ever...Now, my 2nd Annual is in the works for April 12th, 2008.
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I have a certificate that I earned at Daytona Beach Community College in 2002 for Early Childhood Education.

I've worked in a middle school for the past 5 years. I work with special needs kids!! Yes! I have to say it is the best and most rewarding job I've ever had. Its super challenging and I guess that's why I love it so much.

I love the Bourne Movies! The Bourne Identity, The Bourne Ultimatum....and I am still waiting to see the final Bourne movie!

Knocked Up, The Ringer, Remember The Titans,  Sixteen Candles, The Breakfast Club, Weird Science, I loved the classic 80s movies....

Also, I love anything with Lucille Ball, Bob Hope and Bing Crosby......like The Road Movies, and The Long, Long Trailor.

Everything! Without music I would just die! =) My fave is Green Day and The only Country I like is Rascal Flatts.

Mexican, Italian, Chinese. I love chicken! I love  Spicy! And I hate fish! Blah!

I'm not a big reader. I never have been. I would be into anything helping me keep up with HD though.

mom, 3 aunts, grandpa, great grandpa, great great grandma

none that I know of...I feel like what ever I feel is in my head....I don't know what to think..

none

Dr. Juan Sanchez-Ramos

The great Dr. who tested me

yes through my work.....but my ins. comp. doesn't know that yet.....and we'll keep it that way!