no way to know whether it will or will not be but the likelyhood is that there will be many many many many many more very happy vacations and good times. getting used to this diagnosis is a process... there is no easy way to get used to the fact that your lives are not going to be what you thought they would be. The unknown is the scariest thing and an HD diagnosis is chock full of unknowns...by Hope2 - Huntington's Disease Support Center
Can you explain the "pre motor" diagnosis? Does that mean no physical symptoms? My husbands driving is still very good. He is extra cautious and always leaves a lot of room between us and other cars - like if we see brake lights ahead he'll slow down before I would in the same situation.by Hope2 - Huntington's Disease Support Center
So sorry Dusty.by Hope2 - Huntington's Disease Support Center
It is a crazy disease that is completely unpredictable on an individual basis... there are statistical trends in terms of CAG but they don't help what will happen with an individual or family. Plus there are other factors that play into the equation... meds, awareness of the illness, head trauma etc. Unfortunately trying to figure that which can not be figured out will make you crazy... Beforeby Hope2 - Huntington's Disease Support Center
That is such a tough situation. I think the most important thing is to be sure they know (and you are acknowledging) that these are daddy's problems/issues - I think the healthiest thing for them is to validate the reality rather than pretend that the situation is something it isn't. I heard of a study where children of psyhotic mothers were studied - some did well (in terms of mental health) soby Hope2 - Huntington's Disease Support Center
Good luck at the doc Patty. Maybe a tweaking of the dosage will help. it is like playing darts blindfolded trying to figure the puzzle out!by Hope2 - Huntington's Disease Support Center
My husband takes "see yourself well" omega-3 fish oil - I think it has been good for him...by Hope2 - Huntington's Disease Support Center
Hi Eve - I also felt no need before my husband was symptomatic - that felt right... there just didn't seem to be a good enough reason. Opening the door and giving some validation for feelings and observances is really what our goal was so we feel very good about it... How old is your son? You will know when the time is right and it will be a relief - probably for all of you...by Hope2 - Huntington's Disease Support Center
Hi - We have been wanting to tell the kids for a while now and finally had a talk with them yesterday. they are 6 & 9. It went very well - our purpose was to open the door to a dialogue and to validate feelings that they may be having about their dad that they don't understand - feelings that they may be drawing their own erroneous conclusions about. It was short - they asked a few questiby Hope2 - Huntington's Disease Support Center
I feel your pain. it is the hardest part of the disease for us... just have to have hope that IF they have it it'll be way down the road help will be available. I have to believe that because it is too hard to think about it any other way.by Hope2 - Huntington's Disease Support Center
Sara makes an excellent point. It is a lot to be the caretaker for everyone in the household. For us even though my husband is doing very well he basically gets himself to/from work (I give him a lift to the station ) and takes care of his own meds - he is still fine behind the wheel - all of which I am very grateful that he does... but I deal with ALL financial, cars, repairs, medical bills/iby Hope2 - Huntington's Disease Support Center
I think you could start a string here regarding growing up with an HD parent and get lots of valuable info... my husband's dad wasn't diagnosed until he was an adult in his 30's... my kids are not aware yet although we are now learning everything we can about telling them because we are going to do that very very soon...by Hope2 - Huntington's Disease Support Center
LJH - You are doing the right thing by taking things one step at a time. This takes a while to sink in... As the mom of 2 at risk kids who very much shares Stella's story (lived in denial and now living with so much guilt) I am so happy that IF you decide to have children you will make sure they are HD free. I never want another parent to have to wonder what their childs future holds...by Hope2 - Huntington's Disease Support Center
A few people were talking about this so I thought I'd re-post the tables. I found them interesting. they are from 2007 and it s a pretty small number of people sampled - I wonder if there has been an update to this study...by Hope2 - Huntington's Disease Support Center
Hope you feel better soon Marsha!by Hope2 - Huntington's Disease Support Center
Very sorry about the news. The stats don't mean much on a case by case basis - just trends - I will try to find the percentages because it does shed some light. Also, the more you read these forums the more you see that it manifests itself differently in each case. IF you do have it you have a big advantage over your dad in that you would know what is happening and why - you can get meds and doby Hope2 - Huntington's Disease Support Center
My understanding is that there can be expansions or contractions when the gene is passed down from either the father or the mother but statistically expansions are more prevalent when passed down from the father. percentages were posted here once - I'll try to find them...by Hope2 - Huntington's Disease Support Center
Good luck - sending healthy vibes your way.by Hope2 - Huntington's Disease Support Center
Yes - my husband is a prosecutor - he just did a very demanding murder trial in recently. His work is very important to him. He is also trying to write a book about a previous trial - slow going but he is motivated. He is pretty senior and seems to be doing OK but not like he used to (he is frustrated with his performance and his memory)...by Hope2 - Huntington's Disease Support Center
That is great - sounds like the best thing he could do for himself. I know my husbands work is soooooo good for him - keeping his brain challenged...by Hope2 - Huntington's Disease Support Center
I can't imagine that they would presume to know how is going to be 1-2-3-5-10 years down the road. It is impossible to know. If these are his docs from his COE then they should be his advocates and complete the paperwork using his current abilities. There is no upside and no reason to do anything to interfere with him pursuing this - it sounds great. This is just my completely uninformed opiby Hope2 - Huntington's Disease Support Center
Hi - for us the time to test was when not knowing was interfering with our lives so much that we just had to know - and it was a very good thing - as Barb said it was so much better to KNOW what we were fighting... but my husband was 46 and starting to be symptomatic so we were 2nd guessing everything and it was making us crazy. He has 3 sisters who are not symptomatic and have absolutely no iby Hope2 - Huntington's Disease Support Center
Hi - As I am sure you have read there is "no treatment and no cure"... many on these boards would agree that there are treatments that help. There are also a few things in the pipeline that we are hoping to be a "cure" and may be ready for clinical trials in the next few years. There are a number of meds that help with the psychiatric problems. Many people (my husband inclby Hope2 - Huntington's Disease Support Center
Wow that is fantastic on so many levels! Thank you for getting out there and doing it! Thanks to you and everyone involved...by Hope2 - Huntington's Disease Support Center
Thanks very much Barb. The doc we are seeing is sort of following our lead on this one. He said there is a slight risk of seizure as the dosage goes up but I mentioned that some people with HD were on 10mg and he was open to it. I was hoping my husband would have that "lifted fog" feeling I have read about from you and others but so far he has not...by Hope2 - Huntington's Disease Support Center
Hi - My husband is on 5mg memantine for @ 1 month and has not felt anything. what dosage are people taking? should we go to 10mg? any input is helpful. Thanks!by Hope2 - Huntington's Disease Support Center
I agree - it has been helpful to me and I have used it to explain what I am going through to family members/friends. thanks Fred...by Hope2 - Huntington's Disease Support Center
Hey Betty - I know you are not alone - so many people post with that same frustration. My husband's symptoms aren't so bad now but I can already hear when some members of his family ask how he is doing they only want to hear "fine" and move on. It is so frustrating because a bit of support for you would go a long way I am sure... I hope you have some time for yourself - don't burnby Hope2 - Huntington's Disease Support Center
Good luck! I have read so many people write here about how things got so much better for EVERYONE involved when the person with HD goes to a NH. When the time is right it seems to be best for the persion with HD as well as the family. I hope everything goes well tomorrow...by Hope2 - Huntington's Disease Support Center
So sorry you are going through this! Where are you located?by Hope2 - Huntington's Disease Support Center