What is Huntingtons Disease
Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of va...
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44 year old with HD and 2 young kids
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I am reading all of your stories about being in your twenties and it makes me so sad. I would love to hear any positive HD stories. I am 44 and took the test two years ago. I regret it because it has made me spiral down and drink more than ever. I have two beautiful young children 9 and 7 - and I wouldn't have done anything different but to have these most precious and special little people in my life. Don't ever change your mind on wanting kids. I had my first at the age of 34. I have been a great mom until the last few years. (I still think I am until I drink). I am very high and very low. I consider myself a lovely person inside and out and am incredibly compassionate, with a great sense of humor.
My mom is bed-ridden with HD and is 67. She is really bad but has been for quite some time. My uncle already died of it, my other uncle has it and so does my 47 year old sister. (Huntington's Sucks!) My husband is not supportive anymore and I think in total denial. I am so at a loss and don't know where to turn. I don't even know what to tell my kids, but I know I am good with them yet I can be so angry and yell at them and make them cry. I guess we can all do that. I am just now starting to feel the chorea and weakness sneak up on me so stay strong. I never thought I would say these things or feel this way. My lil' muscles however are not what they used to be. I would love advice from anyone else out there with kids and/or what you have done to stop drinking and take better care of yourself. Up until 2 years ago, I was walking and doing Yoga and eating healthy. I just need some help and advice and my prayers go out to all of you that are suffering thru this. Has anyone taken any of the new drug studies? What about your parents or relatives. What advice can I give you? Just stay strong and take care of your bodies. The days I don't drink are the days I feel so weak - so then I just repeat the process all over again. (Could this be more depressing? It's just one of these days, I guess. Love to you all ! Molly Posted on 08/14/09, 01:08 pm |
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MOLLY,
SORRY, TO SEE NO RESPONSES TO YOUR INQUIRIES. I KNOW THAT OPENING UP IS DIFFICULT ENOUGH WITH EVERYTHING ELSE BUT TO BE LEFT WITH NO RESPONSE, SOMETIMES YOU THINK NO ONE CARES. TAKE HOLD OF LIFE! BE THANKFUL IN ALL YOU HAVE AND ALL YOU HAVE LIVED THROUGH. REMEMBER YOU HAVE BEEN STRONG AND ENDURED WHAT MANY CAN NOT. DO NOT LET THOSE OF WEAKER FAITH TURN YOU TO SOMETHING YOU KNOW DEEP DOWN YOU ARE NOT. DRINKING IS NOT THE ANSEWER, YOU KNOW THIS TO BE TRUE. YOU NEED TO BE THERE FOR YOUR FAMILY SO HTAT THEY CAN BE THERE FOR YOU TALK TO ONE ANOTHER DO NOT HIDE AWAY DRINKING. SPEND TIME WITH YOUR CHILDREN IN A POSITVE UP BEAT MANNER, YOU WILL CHERISH THIS TIME NOW AND YOUR CHILDREN WILL AS THEY GROW OLDER. DEPRESSION IS NOT THE ANSEWR AND ONLY YOU CAN PULL YOURSELF OUT. YOU HAVE TO DECIDE HOW YOU WANT TO SPEND YOUR TIME ON EARTH. AND REMEMBER, PEOPLE ONLY REMEMBER THE LATER PARTS OF RELATIONSHIPS! SO BE POSTIVE TO ALL YOU COME IN CONTACT WITH! I CAN NOT SPEAK ON THE THINGS OF DIEASE OF ONE SELF OR FAMILY, OR EVEN DEATHS OF FAMILY. I HAVE HAD DEALT WITH FREINDS DYING FROM A SLOW CANCER. I AM ONLY NOW LEARNING ABOUT DIASES WITH MY FINACEE WE GET RESULTS BACK IN 2 DAYS FROM ALL THE TEST, BLOOD, MRI AND EEG. BUT I HAVE OVER COME SEVERE DEPRESSION, ALCHOLISM, IV DRUG USE, PILLS. YOU NAME IT I'VE GONE THROUGH GROWING UP IN A ROUGH POOR ENVIROMENT. I AM HERE TODAY TO BE A TESTMENT TO THE FACT THAT YOU CAN OVERCOME ANYTHING NO MATTTER WHAT THE SITUTION. BUT BEING POSTIVE AND SURROUNDING YOURSELF WITH POSTIVE PEOPLE.;AND YOU INFLUENCE OTHERS TO BE POSTIVE WHEN YOU ARE POSTIVE, IS KEY TO HAPPINESS AND SATISFACTION IN LIFE. REMEMBER TO TALK WITH YOUR CHILDREN OPENLY ABOUT ALL THAT IS GOING ON DO NOT TREAT THEM AS IF NOTHING IS HAPPENING OR THEY WILL ONLY FEEL LIKE THEY ARE BEING TREATED AS IF THEY ARE STUPID. 
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What I do is I keep moving. I am now in therapy, and working on making friends and following my passions...I enjoy every little day that I have left with my family. I know that one day I may forget more than the words coming out of my mouth, and htat someday I will be too far gone, or all of this will be gone. It makes me sad some nights, but its more of a reason to make these days precious and special.
I want them to have good memories of me before I'm too far gone. And you can also write a journal, maybe perhaps a scrap book, chronicalling how you feel, triumphs, how much you love your children, dedicate each page to them. And each page to how you're getting through, so when it happens your kids can have. Maybe that doesn't help, but that's what I do. These moments could be all you have so you have to try and make it your best.
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hey molly i am new to chat rooms i am 49 single with 3 step kids who dont have to worry about hd i was diagnosed infeb i have been drinking my whole life on dec14 iwill be 1 yeear sober. i am trying to send apositive and sober message to them . alcohol only makes things worse
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