im so scared my parents just told me i tested possitive for hd on june 27, 2009 i dont know how to get into a clinical trial or any of that i have lost complete hope im angry and i dont know who to talk to about this someone please help me my parents are supportive and are willing to do anything to get me better is there anyone in boise or anywhere for that matter that can help me i need some kind of support im so lost in a world that doesnt care ive had depression since as long as i can remember its been a rough road I NEED HELP ASAP!!!!
thanks katey

Hi Katey,

Welcome to the forum, I am so sorry that you have tested positive for HD, how old are you if you don't mind me asking, i don't know where boise is but everyone on this board is here for each other, maybe you can ask your parents to get you some counselling to help you with your anger and depression.
Take Care

Yvonne

Katey,
This is the e-mail for the Idaho HD chapter. huttonsm@aol.com Maybe they can get you in touch with someone closer to you. You shouldn't deal with this alone. You did the right thing coming here and talking.
Sue

I'm sorry but there isn't an Idaho chapter and that email is not valid anymore.

I'm so sorry you tested positive, Katey. I gather you are in your teens? The HDSA has a group for people under 30 called the NYA (for National Youth Alliance). You will find friends and support in this wonderful grouop of young people. And of course we'll do all we can to be supportive and answer questions here.

Are you taking any medication for your depression? Most people with HD are taking antidepressants. SSRI antidepressants work well for most and they may even fight the disease itself.

It's normal to be sad and angry right now. It wasn't good news and also you just got the news. I agree with Marsha, getting to a doctor and explaining how you are feeling to him or her would be a good idea. Sometimes with this kind of news we need a medication to take the edge off of our sadness so we can look at things with a clear head. I am sure your head is racing right now.

Katey, HD is very slow. You are the same person you were a few days ago. You will be for a long time to come. Don't panic. Get back to a doctor and let the doctor help. He can look for any trials and maybe help you participate in them. The doctor can also help you get over this hump so you can deal with things and feel better. Your feelings are normal though. I would feel just the same way. Let mom and dad know you are feeling very bad and would like to talk to the doctor. It sounds like they would be happy to help, so let them. We are here for you too. There are people here who have HD and enjoy their lives just fine. You can too. I am glad we met you.

I'm so sorry Katey....We live in the Coeur d' Alene Idaho area...we went to the University of Washington and talked with Dr. Bird the social worker there is Donna Ross...please call her and i'm sure she will be able to direct you on were to go (206-598-3492) or (206-598-8753)....she is very sweet...

Katey, I'm sorry for your news. I agree with the others, antidepressants and talking with a pyschologist would go a long ways. I hope you keep active on this board as well because talking to people who really understand helps a lot. Take Care

Patty

I am so sorry to hear your news I think Eric said it perfect take his advice and take care .

Welcome. You have received a lot of good advice. I think it would be an excellent idea to call the Social worker in Idaho, whose number was given in a prior post.

Welcome. You have had good advice from ppl here but you need to give yourself some time to adjust. You only recieved your results on the 27th, your emotions and feeling may change from day to day, hour to hour.

Absorb this info. Dont jump or rush into anything. Sounds like your parents are very supportive, lean on them if u have to. Just take time to come to terms with things, no need to jump into trials etc at this moment in time

Takecare and keep posting

Louise x

thank you guys for all your support im just trying to take things day by day its hard please continue to give me good advise all my friends have left me and im starting to isolate myself the things that use to bring me joy dont i cant even motive my self to smoke a cig or drink a beer thank you again

KAtey

Hey Katey, i'm so glad to meet you. How old are you? It sounds like your parents are real supportive. But you have news that's going to take time to absorb for sure. You know, i'm 51, and i'm in the early stages. When i first got symptoms, all my friends left me too. It wasnt that they didnt care, i think they just didnt understand me any more. But there are lots of people here who understand and care. Please go and see your doctor too. There are medications that can help when we're feeling down...notice i said meds, not smokes and beer LOL LOL Glad you came back and posted again.

Katey, do ya need me to smoke one and have a beer for ya? No trouble at all. Anything I can do to help..

im 20 but it feels like im older way older its nice to meet you too

So have you been diagnosed with HD or Juvenile HD? It sounds like maybe you've been having some symptoms for awhile maybe? Awe, try and remember what Eric said too, HD is slow...you're just upset and angry about your diagnosis, i was angry when i got mine too, and that's ok, it's ok to feel angry for a time. What kind of things did you used to enjoy doing? You said you dont do the things you used to like doing?

i use to love to smoke drink go to the hooka bar i use to enjoy sex but now nothing seems to make anything better i have a 8 year old corgi that use to be my life now i cant even look at him anymore i use to like hangout with friends now i just try to push them away i dont want to be around my parents cause i dont want them to suffer with me i have a boyfriend but i just dont know how to show him i care anymore
katey

does any one know of a clinical trial i can get into for hd in the usA I AM WILLing to go anywhere just to get help my mum has been treying to get ahold of this toll free number and hasnt had any luck

katey

HI KATY,

kate dont freak girl, your not dying anytime soon...

we need more information,

how old are you?
what kind of problems have you experienced besides
feeling depressed?

so your parents told you about the positive results,
umm were you with them and the doctor?
did the doctor talk to you about medications of any kind?

again need more information about what you feel, and why
you got tested? ok....

im 20 ill be 21 in august
i have arm twitch
i have been clenching my teeth in my sleep
im clumsier then usual
im confused and cant remember important conversations
my birth dad and his dad have it
my parents have always known it was a possibility
but they finally decided to get my blood tested 3 years ago
my mom had my ginotoligist take more blood than neccisary when i went to get an hiv/aids test i didnt think anything of it my ginotolgoist sent the results to the university of washington to be tested they tested it three times and all three times it came back possitive i was not with them when they did it my mom decided to tell me on her birthday on june 27, 2009 cause she started noticing symptoms like my arm twitch my parents did it behind my back i feel alittle betrayed but i undeerstand why they did it i have never been stable my whole life 3rd grade was when it really kicked in my depression is more biological i think but ive been on the same meds for awile and ive felt fine up until 6 days before they told me and its just been getting worst and worst i want to be left alone soooooooo bad but im also afraid of losing my boyfriend and my family ive already lost my friends but hopefully everything will get better cause i feel ive hit rock bottom

katey

Awe, sounds like you've had a rough time of it, but i think your parents do a lot to try and help you. What kind of meds are you on? It could be that you need to go to your doctor, and tell your doctor how you are feeling, and maybe he will decide to adjust your meds a bit. Depression can be so horrible, but there is help, your doctor can help you, and just talking helps too.