Beautiful tribute. So sorry for your loss.by Hope2 - Huntington's Disease Support Center
Hi Steve - The home page looks great. I will register and test out the message board later when I have more time. Thank you!by Hope2 - Huntington's Disease Support Center
My Father-in-Law had CAG 40 (symptomatic in mid 50's - died at 72) My husband was clinically diagnosed - don't know CAG (symptomatic in mid 40's) he has 3 sisters at risk - none symptomatic we have 2 children at risk they have 6 cousins at risk Father-in-law had 1 brother who died in late 60's with no symptoms of HDby Hope2 - Huntington's Disease Support Center
Eric -don't sell yourself short - I too have found your comments to be very insightful and so helpful! You do have a way of understanding the nuances of these situations and communicating them. I have to re-read this thread when I have some time because I am at that early place where I have to put some things into place and I just don't know exactly how to go about this and what I should bby Hope2 - Huntington's Disease Support Center
Yes greeneyes - the memories for later and the fun for NOW - you need it as much as him! It is so hard to do because there is always something that needs to be done but I am also trying to put off the list of to-do's and get out and enjoy life as best as we can not... the future is likely to be much tougher than the present. I have almost the same life except throw in 2 kids (5 and 8) - I doby Hope2 - Huntington's Disease Support Center
about the statistics - think of it a little like dice - every roll is a one in 6 chance to get a certain number but if multiple rolls were made and they came up 4 the chances for a 4 go down and the chances of the other numbers go up. Both kids here had a 50/50 chance but statistically since on did have the gene, the chances for the other go down. Hope this helps (and I hope it is correct!)by Hope2 - Huntington's Disease Support Center
Coming from someone who was on the "is it or isn't it" roller coaster for years I am a firm believer in unless it is obvious there is really no way to know without testing. You can just make yourself nuts trying to figure it out... But, also, my husband was at risk not me... he was sure - it was the rest of us on the roller coaster. Good luck!by Hope2 - Huntington's Disease Support Center
I have read one maybe two stories of people that were sure they were positive but tested negative. I held on to those stories as proof that everything my husband and I were noticing could be due to other things. and they all could have been... but my husband knew in his gut that he had it and he was right. That being said there really is no way to be certain without the test. He could haveby Hope2 - Huntington's Disease Support Center
Jaq - we must have been posting at the same time. I think your ride is just as awesome!!!! You are doing a wonderful thing. Have a great ride!by Hope2 - Huntington's Disease Support Center
Thanks Barb - awesome in so many ways! Go Kevin!!by Hope2 - Huntington's Disease Support Center
Thanks Sara - that link was awesome - gonna print that one out! Hope things are looking up Brent! This life is a roller coaster...by Hope2 - Huntington's Disease Support Center
I think the anti-depressant issue is a case by case thing but for me I agree with Fred. We have good reason to be depressed. We know all too well what an incredible organ the brain is. I don't want to go on meds - would rather find alternatives to improve my outlook - therapy, exercise, the great outdoors are at the top of the list... honestly, meds scare me and I am the daughter of a psychoanaby Hope2 - Huntington's Disease Support Center
CONGRATS!!! That is wonderful news! So happy for you!!by Hope2 - Huntington's Disease Support Center
I was wondering if there is any anti-depressant that people have found does not cause a flat, emotion-less affect. My phd is on Zoloft and seroquel for depression/anxiety/help sleeping. He has become so devoid of emotion - I'd love to see him be able to experience some happiness - it would be nice for me too of course, but I really want it for him... i am not talking about bouncing out of bed wby Hope2 - Huntington's Disease Support Center
It is possible that my head isn't rooted in reality but I find much comfort in believing (and I really do believe) that my husband won't end up like his father did. When my father-in-law was diagnosed EVERYTHING that you could read about HD was devastating - we were all shocked (neither of his folks had symptoms before they died - they both died before I met my husband). I know you have a longby Hope2 - Huntington's Disease Support Center
Done (with first post)by Hope2 - Huntington's Disease Support Center
Does your husband have any family that can help him transition to a life on his own (give you a break)? Aside from feeling that he cannot cope on his own do you want a divorce? Such a difficult position for you! I agree that your daughter needs help to cope with the double whammy of her dad having HD AND being at risk (does she get that part of it yet?) I have seen a few posts of people whoby Hope2 - Huntington's Disease Support Center
Hi - I wanted to get my husband into the huntexil trial but he was excluded because of a med he was on. It does sound very promising - as does a drug called memantine (already approved for Alzheimers). There is sooooo much to be hopeful for. My husband is 48 and diagnosed about 7 months ago. We have him on multivitamin, blueberries, fish oil, creatine and trehalose - all over the counter suby Hope2 - Huntington's Disease Support Center
Barb - what is the dosage that your are on? Thanks, Reneeby Hope2 - Huntington's Disease Support Center
I am no expert but the shake seems perfect - I am trying to work my husband's daily dosages up to that point. I have also been so disappointed by the reaction at the HD clinic that we use. I was trying to get my husband into the ACR16 study (only offered at a different clinic) prior to starting the trial we had an appointment with the psychiatrist at our clinic. I sent over the criteria of tby Hope2 - Huntington's Disease Support Center
Welcome Trudi. My husband has HD and I have found this board to be a wonderful source of support and info. 40 is an average age but everyone is different - my husband was just diagnosed at the age of 48... Try not to let the number scare you! Good luck and post questions if you have them - there is always someone who has a similar situation or can give some support or advice. It is very helpfby Hope2 - Huntington's Disease Support Center
I knew there was a catch! uh... um... check's in the mail...by Hope2 - Huntington's Disease Support Center
Thanks so much everyone - Eve, I feel the same way, so grateful to have this forum to open up and get such useful, inciteful feedback. It is priceless!by Hope2 - Huntington's Disease Support Center
Yes, Eric and Nila - I hear what you are saying - and it has been my assumption too... I am still coming to terms with my role here... and mourning the life that I expected to have. I probably sound like a spoiled kid but things have always been pretty easy for me - even if I had to work hard at something it was always a task and the hard work came easy... this adjustment isn't coming easy. Joby Hope2 - Huntington's Disease Support Center
This will be a long two weeks and I wish you the best of luck. There is no way for you to know for sure one way or the other until the test comes back - you can make yourself nuts trying to figure it out. It sounds to me from what has been posted here and from your neurological that it is very likely you may not have it. When we got my husband tested the neurological exam was all we needed andby Hope2 - Huntington's Disease Support Center
Thanks Francine and Pat. Yes, he was diagnosed in 10/09 by a neurological exam. We have gotten some counseling in the past but communication has become like getting blood from a stone... he is now going to meetings (similar to AA) multiple times each week and working and coping with HD - and we have 2 small children... I want to squeeze in couples counseling but it is so tough... I have my ownby Hope2 - Huntington's Disease Support Center
My husband has spent the last 8-ish years coming to terms with what he knew in his gut was HD. Our marriage has taken a huge hit due to his drinking (which, to his credit, he seems to have kicked), depression, social anxiety, etc. He seems to be doing OK at work (not like he used to but still fine) he has a very demanding job? he still loves snowboarding, biking, exercising, seeing old friendsby Hope2 - Huntington's Disease Support Center
Yes, the LTC insurance is another one. We had the papers, had a meeting but I never took care of it. It may have been partially (and irrationally) due to anger that I had to take care of EVERYTHING - he hadn't been diagnosed and was being percieved as just lame and not helpful... now we have a diagnosis, I have to take care of everything anyway... and we never go the insurance...by Hope2 - Huntington's Disease Support Center