just feeling really scared and really sad. people around me are sympathetic and saying and doing all they can- but I feel like they just dont get it. I feel very alone with this. I swing back and forth between wanting to die now and get it over with so my kids and I dont have to go through this.I remember how awful it was to watch my mother suffer.I dont want to be the source of that to my children.
Then for a brief moment I feel hopeful- it is not lasting very long, but it is a moment.
Then for an even smaller moment I feel like I can take it.
At night alone in my room is the hardest. Hd is all I can think of. It seems so unreal that this is happening to me. Sorry to be so dark here- but I have no one else to be this dark with. Kag

I understand exactly. I went through a terrible time of anger and fear, and sadness. I mean, you've just received this news, and you're feeling a great sense of loss. I did for sure, and the people around me didnt understand, but really, how can they? I finally came here, and it took awhile, but i finally started to feel a sens of connection, and that others understood. I'm no longer angry, and i hardly ever feel that sense of loss any more. But right now you have every right to feel that way. Grief is very real, and it's ok to experience these feelings. There will be a day, when you no longer feel frozen in grief, but for now it's ok. I'm really sorry you're going through this. Can i ask, were you just diagnosed as positive? Or were you diagnosed with symptoms too? It must be very scary being a single mom too. Of course you're worried, will you be able to provide for your family in the future, etc etc. Try not to worry too much about the future right now, for now just try and work on getting through these feelings. I promise you, there will be a day when life feels happy again. I know, cus i went through the worst grief, i was so sad and angry, and it was constant, for two years after my diagnosis. And of course, i had reason to be sad. Can i ask you, maybe an anti depressant could help you get through this too, something to think about.

I was just diagnosed as positive- but I know I have been having the initial symptoms of depression, anxiety, and slight confusion.
I have a cag of 46--- what is yours? how long have you had it?
I do not have insurance, I do not have a retirement plan, I do not have ANY family. I am petty freaked out. I am 36 years old with a 9year old daughter and a 4year old daughter. Thank you for your response. kag

I'm 51, and was diagnosed in 04 as being in the very early stages, i've been symptomatic for about 6 years. Well, we don't have insurance or retirement plan either, if that makes you feel better Eight years ago my husband had to quit work, because he got very serious circulation problems in his legs, and he went on BC disability. A couple years later, i became symptomatic, and was diagnosed with hd, and i'm now on disability too. If you are able to get insuance and plan for your future that's great, but it's not the end of the world if you don't. Do you wqork right now, and do you enjoy your job? Or are you a stay at home mom? My daughter is a single mom, but is now engaged, and her and fiance live together. But i also know, that hd aside, when she was on her own, i know she felt the pressure of being the sole provider for her daughter. I know it's hard being a single mom, and now you have this on top of this. Just remember what Eric sways, hd is slow, take time now just to work on today and absorb your feelings from this news. And when you're feeling better, you can help yourself and your kids by beginning to plan your future. I know when i was feeling this bad, it didnt do me good for someone to say, come on, get on with things. So just know that grief is a very real thing, and you have every right to go through these feelings, and just know, that someday, you will feel better. I can promise you that. And please, dont forget, if youre really struggling, your doc can give you meds to help you through this. I know that night time is the worst time, for your thoughts to run away on you, believe me, i know that too The hardest part for me, was wanting to still do and be everything that i did before. I had expectations on myself that were too high, and when i finally let go of that full plate, i was able to enjoy doing Some things, not all things, but some things, without a sense of guilt that i wasnt doing all things that i used to do.

Please hang in there. It does get better over time. Your children need you and there's a lot of hope for treatments soon. There are dozens of drugs in the pipeline and several clinical trials for some very promising drugs.

Please talk to your doctor about antidepressant medications and get a referral to a counselor. You can feel better and when you do, you will be better able to fight this disease. All of us here care very much.

I'm sorry that you are feeling so down today. Remember that your children need you very much. You also need to find a counselor or therapist to talk to about the feelings you have been having. You could call your doctor and tell your doctor about the thoughts and feelings you've described here and your doctor could recommend a therapist or counselor.

Cannot talk to a doctor-- no insurance-- cannot afford meds without it-- single mom struggling already. these are the things i have been feeling very upset about. thank you though.

As a single Mom, are you eligible for Medicaid?

no. right at the moment-- I just make too much money. I do not get benefits though. I am a commission based employee, so insurance is too much. I am going to look around though and see what my options are= just have been in too much shock to get much done. thank you though.

Based on your salary, you may be eligible for reduced fees at Mental Health Clinics and some pharmacies like Walmart offer reduced fees on certain generic prescriptions. Some pharmaceutical companies also offer reduced fees on certain prescriptions if you have no insurance and have difficulty paying for them. Some mental health clinicians provide services on a sliding scale. There are some options to look in to. The social worker at the center where you tested may also have information on mental health or medication resources for low fees that could be of help.

Just wanted to say I'm sorry of your positive result, are you having any symptoms now, besides depression? I'm glad you are here and sounds like you got alot of good advice about supplements. I'm 33 and at-risk, I have been experiencing some anxiety symptoms but I don't know if it's just because I found out my dad is positive about 8 months ago and I'm worried about my status as well as him, or if it''s the "initial" sign. I stress about it daily, it's very hard...even though I try to stay positive. Nice to meet you.

nice to meet you too! I hope the anxiety is just about your dad too. It is very scary, wondering and knowing. how old is your dad? good luck and nice to have all these people here to support me right now. kim

He's 53. CAG- 43. Long story, but I saw him about 8 months ago for the first time in 15 years, He had some balance issues and twitching of shoulder and would move his feet around and his head as well, I think he was probably symptomatic for at least 6-7 years (just a guess), the doctor said he was in the early stages, and started him on some med and his speech wasn't slurred, but it was hard to follow him in a conversation at times, but now when I speak to him, he's much clearer, so hopefuly the med is working. He never really took care of himself, supplement wise and he drank and always told me via phone he didn't have any symptoms, I don't know if he was in denial or really didn't think he had any. Hard to say. Hopefully the shock will ware off, but it's been 8 months and I still think about it daily.

where do you live? I am in Atlanta ga. My mother had it. I think her cag was probably 46 like mine. Her symptoms started early. She drank too and never took good care of herself. Her story was nothing short of tragic. She had a terrible run. ABSOLUTELY crazy!! I think it is why I am so afraid. be well. If I had any advice for you- Follow wills regimen on hd lighthouse NOW. While you are still young. You will feel much better.

kag2000....as someone who took care of her mother who battled HD...I miss her! I am glad that she is at peace...but I miss her. She was never a burden...I did hate to see her face this. Please know I am thinking of you and your family.

Misty

I'm from Texas. I'm taking fish oil and I exercise regularly (that darn ole stair-stepper) and do pilates. I heard about the fundraiser, that was very sweet of your friends. I wish you the best.

rj. have you found that it helps? are you taking anything else? how old are you? love to hear as much feeedback as possible.

I'm 33. I don't really have many symptoms, just vague ones and one's that could be brought on by all the stress of finding out that my dad was positive and I was at-risk. Like, about 10 years ago when I was much younger, I started having anxious feelings, but I was newly married, working full-time and going back to school full-time, so I'm sure I was a little stressed. My mom who doesn't have HD used to have panic attacks, and I've learned some of her behavior (coping skills to stress while I was growing up), I listened to some self-help tapes and my anxiety magically went away for about 8 years, and then I recently heard about my dad and dealing with not seeing him for 15 years and then seeing him and finding out his diagnosis, so about a month after finding all this out, I started feeling anxious some, although not as bad because I know how to deal with it now and I started having little "muscle twitches all over", however we were on a mini-vacation last week and they magically went away, so I'm hoping it's all just stress, but of course anything that could be HD symptom related freaks me out. The stair-stepper and pilates has helped me with stress and over all well-being, I need to keep in shape anyways rather I have HD or not, I know I have more energy after working out and my legs are in pretty good shape, (I even wore a bikini, hehehe). I take fish oil, but I'm not taking the recommened dose for HD, trying to work up to it, can't say if it's helping, cause not many cognitive symptoms, but if it can help delay then I feel it's worth taking in the long run, of course I worry and have guilt thinking I could give it to my kids, but I'm trying to hand that over to God, it's hard though. Do you have any symptoms or think that you did? I've thought about testing, but don't know how I would handle knowing for sure. sorry this is so long, I will be praying for you.

I just recently got tested and I was positive. I am 36 years old and have two small children. I have been a wreck since I found out-- but I am glad in a weird way because now I can plan better. I have only had emotional symptoms. Panic, depression and a little memory stuff. I am taking a million things. My prayer life has gone in the dirt-- God and I are duking it out right now so- say a prayer for my babies. kag

Did you have your emotional symptoms before or after you tested? Didn't you just recently find out your status? I know for me it has taken 8 months and that was just finding out my dad's status, and I still stress and think about it, I'm considering talking to a counselor just to get all my feelings out, maybe that will help you too? Don't know how much it will cost though. Consider it done, me praying for your babies, and of course I will pray for you too.