I'd love to have someone to email regarding HD, especially at at-risk person not yet ready to be tested. I'm 31, been married for 2 years, no children (yet) but we plan to have just one at this stage. My father tested positive for HD 4 years ago at the age of 56, but did show some symptoms for a few years before that. He is 1 of 5 children and 4 of them tested positive. His only brother committed suicide just 2 weeks ago at the age of 55 (he had shown symptoms at a younger age than my father). I have 1 brother who has not been tested either - he is 28 and about to be married. I seem to be like a lot of the people out there suspecting they have the symptoms of HD - sometimes I am almost 100% certain that I will develop it - not knowing is better for me than having it confirmed at this stage. I am an emotional sort of person and I'm not sure if I'm strong enough to handle being told I will develop this disease. I would love to hear from anyone in a similar situation, or from people around my age who have also tested positive but aren't showing many symptoms yet - I'd love to know how you are coping.

Thanks for listening.

Karen,
Hi, My name is Becki i'm 28 and at risk for HD. My mom has been diagnosed with HD since 1996. I had never heard of HD before my mom was diagnosed. I have 2 children, 5 and 1. I was pregnant with the oldest when mom was diagnosed. It has been an emotional roller coaster. Somedays I can handle being at risk... other days it scares me to death. I do not want to be tested because if I tested positive I think It would be hard for me to bounce back from that news.
I like you would love to have someone in the same situation to chat with. Its hard for me to talk to my friends and family because they have no idea what its like to be at risk for this disease. THey always say "well we are all going to die of something one day." Its not dying that scares me... Its losing myself in confusion that scares me.
My email address should be at the top... email me I'd love to talk.
Becky

I'm working on a school project for why an air traffic controller w/ HD should be allowed to stay at work can you offer any help?

I can't really help you much with your question, other than offer my own opinion. And that would be that the air traffic controller would have to be monitored in his work to make sure he is ok. It would depend on how far he had developed in the disease. If he is just someone who has been tested positive but hasn't yet developed any symptoms, then yes, he should be allowed to continue his job, definitely. But it would again depend on the symptoms he had and how they were affecting his job. I'm not sure what is involved in being an air traffic controller, but I imagine you would need to be alert and aware constantly and it could be a job with lots of pressure and I suspect this might take it's toll for someone who has HD.

Sorry I can't be of more help.

i would have to agree with Karen,An Air traffic Controller has probably one of the top 3 stress jobs in the world,and that is no place for a Phd,even if the Person didn't cause anyone else to die,they would certainly hasten their own demise.their are just too many uncertainties with this disease.

Hi Karen and Becki,
Wow, can I relate to both of your posts!! I am 36, at-risk and a single mom of a 12 year old daughter. My mom was diagnosed with HD in 1994. We had no idea that it was in our family until Mom was tested.
I am also afraid to test. To me, a positive result would be too overwhelming for me to handle. There is never a day that I don't think about HD, even if it is for a fleeting moment. My Dad thinks that my brother, sister, and I should be tested, but none of us has. I think we all fear the outcome. Sometimes I wish that I was strong enough to handle it, because I hate the constant anxiety of not knowing.
I think you've said it best, Becki, about not being able to talk to friends about it. HD is such a horrible disease and the decline mentally and physically scares me more than death itself, too.
It's not uncommon to be at-risk and imagine symptoms. If I have a slight twitch or I forget something, I think "Oh God, I'm at onset". Then I think "well, I'm pretty stable emotionally.. No outbursts or depression". It IS a rollercoaster ride... EVERYDAY. No one, except those of us at-risk, can understand what we feel everyday.
If either of you want to talk, please feel free to e-mail me. Also, I don't know if either of you have checked out the Yahoo clubs. There are weekly chats on
[clubs.yahoo.com] . I have found a lot of support there and it's nice to know that you're not alone.
Dee

Hi-You can add me to the list. I am 34, married, 2 kids (6 and 5), my mom was diagnosed in 1979. I grew up knowing all about HD and the devastation on a family. My older sister was diagnosed in August of 2000 and my older brother tested positive in February 2001. I am the youngest and feel like a ticking time bomb and wonder "Am I next?"

It is a relief to hear that other people at risk feel like they have symptoms. Some days I am sure that I have it and other days I am sure that I don't. One thing that I have learned is that if I let the worrying take over my life then HD has won. I live each day to the fullest and thank God that I can still get through each day. I don't know if I have it or not. I am not ready to know yet.

It is nice to know that there are others out there who have similar concerns.

Kathy

i just read your nmessage. i sit here and cry. the pain is on the surface as you know. my daughter has hd. she is 48. living away for about 9 years because she attempted suicide 3x at home. my son is 54. no signs. the reason i am writing is to give you my view on having a baby. my daughter had an abortion in order not to pass this to a child. i am her prime visitor. she is out of state. had she had a child who would care for the child since the marriage usually suffers severly. the women who have children in the facility rarely see them. most of the children have the at risk issues they are trying to deal with, and visiting a place where your demons are magnified is very difficult. some women see the children once a year. and that is not to fault the child. it is such an emotional issue, unless you are part of the hd scene you cannot understand. and adoption only eliminates one aspect. the child still loves you and needs a full time mother. not as some of my caregivers stories say, one who is naked throwing pots and pans around the house.the child of an hd mother cannot readily bring a classmate home for fear of what they will find. never knows what will be in the lunch box. dementia can play a very large role. before the physical, the dementia is uncontrollable. weigh the decision carefully, leaving the selfish motherly instincts behind. give thought to the childs outlook. As i said this is only one very pained point of view.

Barbara, your message reminded me of the first chapters in Woody Guthrie's book Bound For Glory describing life with his HD mother. It is sure strong reading. Woody Guthrie grew up despite it and accomplished so many creative things that have lived long after he did. This can be the case with lots of us who have HD. Sorry for your pain, though.

I am a caregiver to my sister. I have just found a assisted living facility with supervision. I do not have hd, but I am feeling so guilty about being able to care for her at home. Is anyone going through this, too?

HI!

I am 45 years old and have 2 daughters 16 and 12. I am at risk and am afraid to be tested. I would love to hear from other people. My husband left me 18 months ago cause he said I was obsessed with HD. My mother died 3 years ago of HD an I had to care for her and place her in a home. Talk about guilt then on top of everything my husband leaves me!!! I am afraid I will get HD and have to face it alone I have no relavites around to help me.

YIKES!!!!!!!

Pam

Just a note to all of you.

I am not at risk, my fiance is however. I have been learning about HD so that I can better understand what I will be facing with him if he is to start showing the signs. His mother was diagnosed in 1981. He has not been tested and doesn't know yet that he will get tested. I know that I may not have some of the same feelings that you do, but I am here if you would like to talk. You have a friend.

I have discovered a wonderful bunch of people at:
hunt-dis*at*maelstrom.stjohns.edu
this is an ongoing chat that inables you to talk about what ever you like-with people who are going through the same thing that you are. I hope that you all will find some kind of comfort. I am here if you need to talk. My e-mail address is shown above and I am always on my computer during the day. Talk to you soon hopefully. Take care. My prayers are with you.

Mima

I don't know if this will help any of the at-risk people who wrote, but here are some of the reasons my husband and I decided he should be tested.His mother is currently showing moderate HD signs and was over 8yrs post-onset when my husband was tested( 5yrs ago), whose results were positive. I am 12 years younger then my husband and this is his 2nd marriage as his first wife died of cancer. He has a daughter, now 13, from his first marriage. Our motivating factor was financial planning. He now has a health care proxy written (which evolved after weeks of discussing his preferences regarding artificial nutrition,etc.) and is locked in to a life insurance policy (so his rates can't skyrocket when he becomes symptomatic). All paperwork and accounts have my name on them to simplify legal matters during his illness and after death. He learned all this the hard way after his first wife died. Likewise, when I contemplated having children or returning to school, we decided it was best for me to pursue a degree that would enable me to obtain a job that could eventually support us all for when he can't. (Coincidentally, I received my master's degree last Sun.) Another issue is research, I spend time reviewing potential treatments and stuff like that. This is time consuming and wouldn't be necessary if my husband was negative so we didn't want to keep up with all this unless we knew we had to! My husband takes vitamin E, makes a point to stay physically active and I encourage weight gain (as he is skinny to begin with and they recommend pre-symptomatics to be approx. 20lbs. above ideal weight to prepare for weight loss later) Again, all this expense and extra effort would be uneccessary if he didn't have the gene, so we felt like we needed to know.Now, back to having children, we are exploring methods of insemination after embryo testing. Although I've often thought the whole world should live life and cherish our time with family because any of us could be hit by a bus tomorrow, most people don't. Robert's positive results have helped us reorganize our priorities in life. We vacation now instead of dreaming of a retirement! Robert shows some difficulty following and transitioning conversation topics.This was causing some friction between him and his daughter, so I recently had to tell her about HD to help her understand her dad a bit better and hopefully have a bit of extra patience. I've gone on quite a bit here, but these are some of the ways that the definitive knowledge provided by the testing has helped us.Of course I still get bummed out but it's been great to find so much support and info through sites like this. It really helps you when you feel all alone-- and your "outside" friends have no idea what HD is!
Good Luck,
Heather