Hi This is not an easy post for me to write. When my husband and I decided to have kids we knew he was at risk for HD but for whatever reason (in retrospect it just feels like stupidity - but it was most likely a severe case of denial) we decided to just go ahead. We have 2 kids - 8 and 5. My husband tested positive last October and the MOST difficult part of the process is thinking that weby Hope2 - Huntington's Disease Support Center
Welcome Audrey - so sorry about your husband's diagnosis. My husband was diagnosed in October and I have found this site to be an incredible source of information and support so I am so glad that you wound up here. My husband is not on abilify but since his diagnosis he has been on Creatine, blueberry, fish oil, multi-vitamin and vitamin e. Somehow between the relief of having a diagnosis (evby Hope2 - Huntington's Disease Support Center
Best of luck - you are doing a wonderful thing and it is a huge undertaking. No apologies necessary - I think everyone who is on this site understands frustration. I, for one, am very impressed with your accomplishments so far and wish you the best of luck completing the project!by Hope2 - Huntington's Disease Support Center
Good luck Kippers - I am also hopeful and trying to keep my husband as healthy as possible until something is approved and on the market - he is willing to take anything but doesn't take anything unless I put it into his hand... so I do On this forum I learned about "micronized creatine monohydrate"... it was recommended on a string about supplements so that is what we are using. Somby Hope2 - Huntington's Disease Support Center
I just sent it out on my facebook - up to 3598 votes...by Hope2 - Huntington's Disease Support Center
Thanks for posting the link. I just watched the video regarding telling kids about HD - very worthwhile. I look forward to checking out the rest.by Hope2 - Huntington's Disease Support Center
Thanks for posting the link. I just watched the video regarding telling kids about HD - very worthwhile. I look forward to checking out the rest.by Hope2 - Huntington's Disease Support Center
CONGRATULATIONS!!! Fantastic news! Thanks for posting - it is wonderful to see some happy news on here!by Hope2 - Huntington's Disease Support Center
Great idea - NASCAR reaches sooooo many people. My vote is in! Thanksby Hope2 - Huntington's Disease Support Center
Hi Marsha and Steve- Looking forward to hearing about the conference! Thanks!!by Hope2 - Huntington's Disease Support Center
Hi Ryan - I think it is a great idea to talk to someone - there are so many different issues to work out. My husband was at risk when we married but we were both sort of in denial - he was in great health, great career, great personality. When he started feeling symptomatic he had a very hard time coping and started drinking - not the best tact for anyone nevermind someone with HD. Hopefulby Hope2 - Huntington's Disease Support Center
Since my husband was tested in October he has been taking fish oil, blueberry, creatine, multivitamin and E... he is doing very well - better than he had been doing for quite some time.by Hope2 - Huntington's Disease Support Center
Hi Paula - Yes, I have 2 kids at risk - they are 5 & 8... I agree with Eric that one "should" test when other people are involved... before that time it is a personal decision but for many (for us) it is the right decision. Testing doesn't change the reality - knowledge is power... getting the insurance in line is very smart to do too. we had all the paperwork for Long-Term Caby Hope2 - Huntington's Disease Support Center
Hi Paula - I know that "bad dream" feeling! I am so sorry about your mom and wish you and your brother the best of luck. This forum is an amazing place for information and support. There are many people here who are also going through the testing process. I hope you are both negative but I just want to share with you that my husband tested positive last October and even the positiby Hope2 - Huntington's Disease Support Center
Hi - I agree with BJ V in theory and I hope to put it into practice. I want my kids growing up with HD as part of the equation. I want them to have an explanation for things that are happening in the family. Right now they are little (5 & 8) and their dad is very early in his symptoms but I do plan to tell them once his symptoms become stronger...by Hope2 - Huntington's Disease Support Center
Maybe something about pros/cons of participating in a trial for a drug that is already out on the market - either over-the-counter or on the market for another illness...by Hope2 - Huntington's Disease Support Center
My husband was diagnosed by the neuro exam alone (he is early stages, not pre-symptomatic) - it was surprisingly basic... repeating words, walking, balancing on one foot etc. Good luck Sara!!by Hope2 - Huntington's Disease Support Center
Hi - Thanks for sharing Marsha - it is so nice for things to have gone that way. My husband is very early ... and my kids are still young so I often wonder about what the future will bring for us. Glad to see things going well for you.by Hope2 - Huntington's Disease Support Center
Hi Saram and welcome. I also think that you are doing the right thing. I hope you are negative but if you happen to be positive finding out won't change what is already there... it will just give you the ability to prepare and take care of yourself to optimize your chances in the future. More importantly it'll give your daughter the awareness she'll need going forward and planning her familyby Hope2 - Huntington's Disease Support Center
Another bone head here with the same question... my husband was excluded from the study because of a med he was taking - when will it be available to people who were not in the trial? Thanks!by Hope2 - Huntington's Disease Support Center
Thanks Josh!! Good luck in the run! I agree that the cure is out there - you are doing a wonderful thing...by Hope2 - Huntington's Disease Support Center
Hi Jenc - I just wanted to say that (as you can see here) you are not alone - not by a long shot. My husband was diagnosed about 6 months ago so we are still getting used to the idea... we also have 2 kids. I work and, like you, take care of pretty much everything... The worst part is the fear that the kids may have it. My real fear is reagarding JHD... but I have decided that I just haveby Hope2 - Huntington's Disease Support Center
Jeff, you should re-write that response and post it. Even if you think your position is so different from Erics that you can't "change" his mind - there are many people here reading this with much interest and want to hear what you have to say! Please post your response, I am sure I am not the only one who wants to hear what you have to say.by Hope2 - Huntington's Disease Support Center
Is 400IU/day of E high? Reminds me of the book that I got when I was pregnant - it was 3 inches thick and proceeded to scare the crap out of me. You must have exactly x amount of magnesium - too much will cause this in the baby and too little will cause that, same with A, D, zinc and on and on and on... Eventually I had to toss the book and go by my gut. What Will said is so true - part ofby Hope2 - Huntington's Disease Support Center
Can you recommend a dosage of Treholose? I thought the dosage was like 75 grams which is so much. If that is the dosage what is the best way to take it? My husband is also taking the equivalent of 1cup of blueberry/day - are you saying that this may not be good for him? Thanks very much.by Hope2 - Huntington's Disease Support Center
I just want to add my experience because I was there - my husband was at risk for HD - he started to believe he had it (not twitches - more cognitive)... we had a very rough few years wondering is it or isn't it until, as you said swgirl, the stress of not knowing became too overwhelming. It took us a long time and a rocky road to finally get him tested but we did. He tested positive but the reby Hope2 - Huntington's Disease Support Center
This seems to summarize a problem that I am having (and so many others are probably having too). The docs don't want to stand behind something unless it has been tested and approved - at our clinic I seemed to be met by downright ignorance regarding what is happening regarding supplements and clinical trials "if there was something out there that helped we'd be prescribing it to you" iby Hope2 - Huntington's Disease Support Center
My husband and I went throught that roller coaster for years - is he or isn't he... is this from HD or is this from the stress that he might have it... it started to consume us both and we went through some difficult times. We finally decided to have him tested because he was living as if he had it anyway. He tested positive and the diagnosis seemed to be tougher for me than for him - he totalby Hope2 - Huntington's Disease Support Center
My husband has HD and has needed a sleep aid for quite a while - before he was diagnosed it was ambien and now it is seroquel. We used to think it was stress related but maybe it is connected to HD.by Hope2 - Huntington's Disease Support Center
Wow - thanks for posting - very valuable info. My husband had a similar type of episode a few months ago. We are assuming it is due to meds and he seems to be doing well now but this is great info to have. ... and it is ALWAYS so great to hear good news! Best of luck!by Hope2 - Huntington's Disease Support Center