I'll write more later when I have more time because I have a number of things that I would change. But, #1 thing for me is that I would have had the pre-natal testing. We knew my husband was at risk but we were in denial. He has 3 sisters, all with kids by the time we started having kids and no one tested... My husband wasn't even close to being ready to test for himself - I listened to my Motby Hope2 - Huntington's Disease Support Center
Thanks Marsha for the explanation! So great to come here and get the real story! Good or bad, the reality is what I am looking for.by Hope2 - Huntington's Disease Support Center
Anyone know the difference between Dr. Hayden's findings in 2006 and Dr. Yang's? Is it the same? Wonderful news wherever it comes from! Laura you make me laugh quite often!! Thanks!by Hope2 - Huntington's Disease Support Center
My husband was also diagnosed with only a neurological exam. I think it is common if the person is already symptomatic. We are sure he has it but may do the blood test at some point down the road to find out his CAG #. We also wanted to get into the ACR16 study but took the recommendation of a psychiatrist to put him on a med which was on the exclusion list of the study. I am far from an expby Hope2 - Huntington's Disease Support Center
Grrrrrrrrr - so frustrating! Take some deep breaths... I have no useful advice - I can just empathize with your frustration. Try to take a break from the stress - how would a positive result change your actions right now? When you wrote last time it sounded like your son didn't know what was up. Now it sounds like he is aware that the HD issue is on the table. Let that sink in for him and brby Hope2 - Huntington's Disease Support Center
Can anyone tell me how much they are taking each day and how they are taking it (mixing it with water?) Also, is anyone having the bad stomach issues with it? My husband has a rocky tummy from other meds so I don't want to exacerbate the problem. Thanks!!by Hope2 - Huntington's Disease Support Center
Thanks for alerting us/me to this!by Hope2 - Huntington's Disease Support Center
Wonderful news!!! Thanks for sharing - so nice to have some happy news!! Enjoy!!!by Hope2 - Huntington's Disease Support Center
Hi - I am so sorry about your diagnosis. I agree with what many of the other posters have written - this needs time to sink in - it is not something you can come to terms with overnight. My husband has HD he is in the early stages and has a very demanding job which he is functioning well at - I think the mental exercise is extremely good for him as school would probably be for you. Live yourby Hope2 - Huntington's Disease Support Center
You have a real dilemma on your hands. Sounds to me like you know what you want to do but you don't know how to do it. I am sorry - I don't have an answer as to what the best route would be. Just be kind - she is going to have enough hardship in her life. Maybe you can be a part of her life in the future in a different capacity. Better to be going through this sooner than later.by Hope2 - Huntington's Disease Support Center
Hi - I know exactly where you are coming from. My husband began to think he had it @ 6 years before we finally had him tested. It was a difficult time to say the least - in retrospect I wish we had tested earlier - it would have saved us both so much grief but, as you said, it is a personal decision and only he can make it. Unfortunately my husband tested positive but life has actually improveby Hope2 - Huntington's Disease Support Center
I review research to see if the drug/supplement looks promising... the logistics are less important.by Hope2 - Huntington's Disease Support Center
I just wanted to say how very sorry I am that you and your family are going through this. You may find some strength and support from connecting with those who are going through what you are - like the support group that Pat recommended... I have 2 at-risk children (5 & 8) - it is very scary. Good luck...by Hope2 - Huntington's Disease Support Center
Welcome to this site - I have found it to be very helpful and it looks like you can already see the value. My husband has HD and we have 2 kids - 5 & 8. My husband is symptomatic but early and we have not said anything to the kids yet. We'll cross that bridge when we feel the need - so far there is not a need. I think what Eve said is very valuable - live your lives to the fullest and eby Hope2 - Huntington's Disease Support Center
Will this mean additional trials are needed? If so is it possible that the medication exclusion list may change for a new study? (We were just about to start the study and my husband's doc recommended a med on the exclusion list and we took his advice - a decision I now regret because my husband didn't have a good reaction to that med...) Anyway, I would love to get him into a study if a newby Hope2 - Huntington's Disease Support Center
Thanks Eric. Maybe we'll find out down the line...by Hope2 - Huntington's Disease Support Center
Is it important to know your number of repeats? My husband was diagnosed by a neurologist so we don't have his number. He is in stage one... he is 48... can anything be gained by getting his bloodwork done and finding out his number of repeats. Thanks for your help...by Hope2 - Huntington's Disease Support Center
Thanks so much Steve and Brett! Very helpful!by Hope2 - Huntington's Disease Support Center
Hi - The people on this forum have been the best source of good info I have come across... so I was wondering if anyone had an opionion on two things. 1. Coconut Oil - are PHD using it? I know the doc had wonderful results with her husband's alzheimers and she felt it would also work well with HD. I also read one account of a woman who gave it to her husband with HD and had good resultsby Hope2 - Huntington's Disease Support Center
Hi Nancy - Welcome - this is a wonderful place for information and support. My husband has HD too and we have 2 kids - 5 and 8. There is a lot of hope now for some treatments that can really help with symptoms and hopefully slow the disease until better treatments or a cure comes along. I am fairly new here but if you post your location I am sure this wonderful network of people will help yoby Hope2 - Huntington's Disease Support Center
Thanks Sara - I am very impressed. It is overwhelming for me and my husband is the one who is HD+! Your comments are very helpful. The table that patricia asked for would be helpful to so many people - myself included - does anyone know if it exists anywhere? Thanks!by Hope2 - Huntington's Disease Support Center
I am just getting my husband set up with Creatine, blueberry, Vitamin E, treehalose and coconut oil (and multi-vitamin and his meds) but I think it is overwhelming us a bit. Does anyone know if you can derive benefit from lower dosages - is it all or nothing? If he doesn't get 20mg or Creatine/day should he not bother for example. Or is it that every little bit helps but recommended dosages arby Hope2 - Huntington's Disease Support Center
Does this mean that it is in the works for ACR16 to be available to everyone regardless of whether or not you participated in the trial? My husband was just about to start the trial and the psychiatrist (at the Huntington's clinic we are associated with) knew nothing about ACR16 and recommended a med on the exclusion list and we took his advice. My husband had a horrible reaction to that drug aby Hope2 - Huntington's Disease Support Center
Hi and welcome - Do you have any support system in place? Family, friends, therapist? My Father in law was diagnosed around the same age as your dad and also had had symptoms for a few years prior. It is so hard on the entire family. I don't have any practical advice for your situation with your dad. My only advice is to seek out a support system for yourself... and NEVER feel in adequate orby Hope2 - Huntington's Disease Support Center
Thanks Fred and Paula... we do have a dry house, have for a while now - he's come a long way... but there are many opportunities outside of the home. He has to do it for himself and that is where I worry about the HD. It is hard enough for someone without HD to quit - is he capable of quitting with HD. Thanks for your input!by Hope2 - Huntington's Disease Support Center
We knew that my husbands dad had HD but we did not know if he or any his siblings had it. We all had children without pre-natal testing - there were many reasons but in retrospect denial played a big role. We learned last October that my husband has HD. I wresle with the guilt I would feel if either of them have it. If I had that knowledge I would have tested. I think pre-natal testing isby Hope2 - Huntington's Disease Support Center
Thanks so much Francine and Paulabhouck... we have been reaching out for a lot of support and I have gone to many Alanon meetings and it is very worthwhile. The difficulty is just what you both said - the combo. If he didn't have HD it would be easier to say "get your act together or I am gone" - actually I have said that before but if he didn't have HD it would be easier to followby Hope2 - Huntington's Disease Support Center
My husband is early in his HD and he has a drinking problem. His drinking got worse when he started feeling symptomatic. When he decided he wanted to be tested it got even worse - I knew we had to deal with the drinking first. He stopped drinking last May, tested positive for HD in Oct. and VERY slowly started drinking again (never as bad as before). About 1 month ago I was out of town and heby Hope2 - Huntington's Disease Support Center
The spouse of an at-risk person is a difficult position to be in (I was there too). The decision to find out can ultimately only be made by the at-risk person but the at-risk status affects both partners almost as much. My husband started believing he had HD at @ 40 - he started drinking more and more as a coping mechanism (not the best one for someone with HD)... not knowing was getting too diby Hope2 - Huntington's Disease Support Center