Hi, My name is Theresa. I am 33 & 1/2 (yes that half matters)... My mother started showing physical signs of HD when she was 34. The mental signs started about 5-7 years prior.... Anyway, I am having a real identity crisis right now and am scheduled to be tested next week or the following. (I can't remember). I have made an appointment a few times over the past few years and due to anxiety I chickened out... My mother was up this weekend and my father is again going to try and put her in a nursing home, it was definitely her last visit to my house... She didn't realize it anyway but I did.. I am glad to have found a place I can vent and get these emotions out with people who know exactly what I have been through or am facing.. My husband is supportive but I don't think he really knows the deep down emotional scars that this aweful disease does to someone not only with HD but who has been affected by someone they love having it.
Thanks for your ear.. Looking forward to chatting with you. Hope this hasn't been too long.
Theresa

Hi Theresa,Good to hear from you and glad you found the HDAC,Lots of good folks here all dealing with HD in one form or Another. I would like to take a moment and invite you to join Hunt-Dis,this is the largest HD support group on the Internet and you would be most welcome to join us,we know where you are in dealing with this disease, and understand what you are going through,Come join us, you will find instructions for subscribing to Hunt-Dis on the HDAC Homepage.Hope to see you there Theresa.

I would love to Ron, but I had a bad experience with it a few years ago. My husband & I were trying to get pregnant at the time alot of people were against it. I suffer from seasonal affective disorder, it was January and I was reaching out for support. I responded to someone I saw from my original home town (forgetting it was viewed by 400K people), next thing you know I was getting 2 weeks worth of hate mail before I finally left. Now I am really shy about opening up my heart, mind & soul in front of the world. I know people were just giving me there opinions but some women were downright nasty to me typing me parargraphs of just hate & disgust. I know it stems from the disease and no one had a more violent, abusive, neglectful relationship as a child with her mother with HD then me. The thought that these people thought that I would bring a child into this world only to send it to destruction just pushed me further into my depression. I was then convinced I was a bad person, maybe they were right? Anyway, that was years ago and my husband & I have had our problems, infertility being one of them. I can't focus though on that right now. I am here to hopefully find some support with HD. I posted to the yahoo groups HD Support & HD at risk and I have only gotten one response from the list/club owner.

Just call me once bitten, twice shy....
Thanks though
Theresa

just finished tweleve months of psycho-neurologicals, gene counseling , and finally testing at hopkins. took forevever since I couldn't just shoot down to the hospital to get it done more quickly. Just got my result, positive ,but pre-symptomatic. I have three young children. In that twelve month wait there were some bad days of anxiety. I really had to struggle with living in the moment, the immediate present, the now, and somedays I haven't done that very well. I am flying out to the convention in san diego at the end of June, just to really get as much information as I can. My spouse could not deal with this at least for now for a variety of reasons. In the end, I think any support I get and direction on how to deal with the children will have to come from the hd community. Exercise, physical fitness and a lot of prayer are helpful. I try to focus on the positive, we do live in exciting times in the field of genetics. Hope is there. jim

Dear Teresa,

Bless your heart. I have been living with the Dragon (HD) since I was 18. It swooped over a hill and breathed fire on our unsuspecting, HD illiterate family.
It took a decade for us to figure the whole thing out.
I am 43 now, and after 20 years of living in fear and hiding from HD.... God sent a couple of his finest down, slapped me upside the head and convinced me that my fear was the demon and I would never have peace until I faced the demon and stared it down. (easier said ...!)
At my weakest moment, right before I tested, God picked me up and carried me
or I'd still be runnin. Up until that point, a lot of denial and a whole lot of "ernie and julio" tote'd the note. Not a good plan...
I am now caregiver/guardian for my two fine brothers that are living with HD.
I think I was spared to see after them and make living with HD easier for them.
When I read your letter, I wanted to reach down the phone line and suck you through the fiber optics and into my living room so I could hug you and and make you some herb tea, and then tell you this whole stinking HD mess is a bad B-grade TV nightmare some kid who was jealous of you in high school dreamed up to make you feel like doo-doo. Since I can't, don't give up on your spouse yet,,, he may end up being able to give you more support than you think he will.
I lost my best ever, friend, all kinds of kid loving, goofy long haired friend accepting, non-judging, book reading, masterpiece theatre watching, pizza eating, chicken frying, homework checking, camping, canasta playing, popcorn poppin, floor moppin, poet quoting, small abandonded ugly dog lovin, bell bottom buying, untried new hobby encouraging, off key singing, chocoholic, Christ loving, Mama to HD.
She's been gone 7 years, and I still want her back every day., so I just take
them one at a time... If Mama was still around she'd tell you that the people
that wrote those nasty letters to you have never been to the "wall", and they can't
"know", and they can't understand, and you just don't have to take that kinda
c___p off em.
When I was in my early 30's there was an article in a magazine that interviewed Arlo Guthrie, son of Woody Guthrie. He said something very simple that made it
alot easier to put HD in the right place in my life. This is not a quote, but he said
to the reporter... "If there is something that I need to change in my life because
I found out tomorow I had HD, then I ain't living my life right, am I?"...
I never forgot that all these years.....
Take it one day at a time girlfriend.....
kyimputdig
(keeping you in my prayers until the dragon is gone)...
Marlene's Girl