Interesting. The above link didn't work for me so here is anotherby Hope2 - Huntington's Disease Support Center
Thanks so much Eve and Autumn! very helpfulby Hope2 - Huntington's Disease Support Center
Everyone deals with these things in such different ways - some people push it down and don't want to go there - some people need to learn everything and be as proactive as possible. I say research away if that is what you are driven to do - if there is a false positive all that has happened is that you have learned about HD. How old are your kids? I think a parent has to go with their gut buby Hope2 - Huntington's Disease Support Center
Sorry about your dad. I haven't heard of many people doing a confirmation test but if it'll make her feel "better" about it there's no harm.by Hope2 - Huntington's Disease Support Center
Is this a clinical trial specifically for HD?by Hope2 - Huntington's Disease Support Center
The time has come where we feel we need to tell the kids (9yr old girl/6 yr old boy) or at least just open the door to discussion. We want to communicate that daddy is "sick"? has a "condition"? a "disease"?... I want to be sure that any feelings they have that something is going on are validated and open the door to questions.... mostly for my daughter whose reby Hope2 - Huntington's Disease Support Center
Alcohol and HD do not mix for many reasons. One is that alcohol is a depressant, people with HD are often depressed and on meds to help the depression - alcohol will interfere. If someone with HD is an alcoholic they should be sober because as the HD progresses the ability to control impulses will deteriorate. Drinking kills brain cells and the HD brain needs every healthy cell possible. My hby Hope2 - Huntington's Disease Support Center
Good luck Judy - this shouldn't have to be such a hard battle ... over and over!by Hope2 - Huntington's Disease Support Center
We are in Southern Westchester (my husband is from Long Island). We went to Columbia a couple of times - I spoke with DT many times before my husband was diagnosed and she was very helpful. My husband was diagnosed there. I was not happy with my last couple of interactions with them so we have found other docs for my husband but I know that they help many people and I am sure they are a greatby Hope2 - Huntington's Disease Support Center
Wow Klivin - many similarities... does the social worker you are working with have the initials DT by any chance? We are also in the process of figuring out how to tell our kids. They are still young (9 & 6) but I want to open that door. My daughter definitely has a "thing" with her dad.. there relationship is not what I hoped it would be although it used to be wonderful. I thinby Hope2 - Huntington's Disease Support Center
Yes! It is a wonderful thing to do. We tried to get my husband involved in a clinical trial but were discouraged by the HD clinic that we went to - in retrospect I am frustrated about that because that medication is doing very well and people who participated in the study can get it while it goes through the process of FDA approval. There are so many things in the pipeline and they are alwayby Hope2 - Huntington's Disease Support Center
My husband was diagnosed @ 1.5 years ago but he started feeling like he had it probably @ 6-7 years ago. We found out his dad had it before we were married but I/we were idiots... I really feel that way... or just in denial - everything was perfect and no reality was going to get in the way. His dad showed symptoms late in life and his disease progressed very very slowly. no one talked at allby Hope2 - Huntington's Disease Support Center
Hey Theresa - I know just how you feel. I was also feeling how much I miss the man I married - how unfair it is to have so much responsibility when we signed up for a partnership. I was watching a live concert onTV and the band played my wedding song and it was just heartwrenching for me to hear. It took me back to such a happy/love-filled day... so far away from where we are now. I have no wby Hope2 - Huntington's Disease Support Center
I have learned from personal experience and from reading this forum that there is no way to know without the test - every symptom can be explained by something else "is he depressed because he has HD or depressed because he thinks he has HD" etc. Try to be patient now and see what happens with his dad. Even if his dad is positive doesn't mean he is. For us the time to test was when notby Hope2 - Huntington's Disease Support Center
Hi - Welcome. My husband also has HD. He was diagnosed about 1.5 years ago but sensed it for a while. It certainly threw our lives into a tailspin but dust has settled and we are getting back to living. My husband couldn't deal with it when he first suspected he had it but what seems to have helped him is meds, supplements, therapy, fear of being losing his family (our marriage almost fellby Hope2 - Huntington's Disease Support Center
Has anyone tried this? it is a plant: "Rhodiola rosea may be effective for improving mood and alleviating depression. Pilot studies on human subjects showed that it improves physical and mental performance, and may reduce fatigue."by Hope2 - Huntington's Disease Support Center
I thinkTeresa just wrote "I guess I am a little disappointed that..." which sounds like an honest account. I understand why you are disappointed - there are not many places to turn where you will find people informed about HD and you hoped someone could help you find a lawyer here. I think any good labor lawyer should be able to help you. I have a family filled with lawyers and whenby Hope2 - Huntington's Disease Support Center
Welcome - you have found a great place for info an support.by Hope2 - Huntington's Disease Support Center
Hi - Your words touched me very much and made me think once again how much I appreciate this forum - you could get that off your chest and I could benefit from knowing that others out there are going through just what I am. Good days and bad days... it is the human condition...by Hope2 - Huntington's Disease Support Center
I don't think the issue is would someone who is already here rather or not be here. given the choice to bring a new life into this world with the assurance it is HD free vs a new life at risk. Knowing what I know now, I can't understand how a parent could choose the latter. not imposing my will or telling anyone what to do - these decisions are personal. as the mother of 2 at-risk kids I justby Hope2 - Huntington's Disease Support Center
If you win, I wanna come too!! Have a great trip!!by Hope2 - Huntington's Disease Support Center
Amazing Barb! You are doing a wonderful thing for yourself, your family and the entire HD community!by Hope2 - Huntington's Disease Support Center
I remember being told that the difference is nominal between getting LTC early and paying lower premiums or later with higher premiums. I would opt to get it sooner because of the situation - advice I didn't take myself and regret because when we were ready to test we just wanted to do it and didn't wait to get things into place.by Hope2 - Huntington's Disease Support Center
Hi and Welcome. I am so sorry for what you are going through. Your situation sounds a little similar to mine. We have 2 kids, 6 & 9 - we knew my husband was at-risk but we were completely in denial. One thing we were advised to do was to get insurance in order right away - long term care insurance. We decided to have my husband tested when the "does he or doesn't he" began toby Hope2 - Huntington's Disease Support Center
What about employee reviews? I have discussed some of these issues with lawyers in my family and they said that there has to be some warning - like a bad review, a warning something... Did he have any incling that they were dissatisfied with him?by Hope2 - Huntington's Disease Support Center
I think the life outside of the womb is much more important than a few cells that are growing. We are hopeful that there is a cure to HD but in the meantime we can try to iradicate the disease by not passing it on. I hope your daughter is healthy but that is a big risk to take with someone else's life. I say this as the mom of 2 at risk children who wishes she had done things differently to ensby Hope2 - Huntington's Disease Support Center
Wdwilson3 - wow - your post really struck me too. I started another string on this forum about HD+ fathers and daughters because my husband has HD and is so completely emotionally absent that I am so worried about how it will affect my daughter (son also, but they seem to have a better relationship). Other's responded on that post with similar complaints regarding the absence of emotion. A couby Hope2 - Huntington's Disease Support Center
Unfortunately the more I learn about HD the more I understand that each case is so different. My husband started feeling off-balance a couple of years after some of the very early psychological symptoms started. But he still has very little physical symptoms (stil biking, snowboarding, kayaking etc.) every case is very different though...by Hope2 - Huntington's Disease Support Center
For my husband depression/social anxiety/memory issues.by Hope2 - Huntington's Disease Support Center