My husband's Xenazine over the last 2 years has increased to 100mg per day. We use 25 mg pills, and give 1 1/2 at 8 am and noon, then 1 at 4pm. He was having very uncomfortable chorea of the diaphragm resulting in constant burping and hiccups...very troubling. Thank goodness that has not reared its ugly head in over a year. His chorea is pretty rough first thing in the morning, but subside faby patty c - Huntington's Disease Support Center
If you are not sure of your husband's reaction to his results, talk to him. It might be worth it to go through the counseling sessions prior to learning his results. He is the best judge of what information he can handle at this time. You do not mention his age, but unless he is showing symptoms, I would not reveal anything to his employer. If there is a strong safety concern regarding softerby patty c - Huntington's Disease Support Center
Welcome Estrella, You two are very young. He has now had his genetic test. Unless he is suffering from the juvenile form, or very early onset, he will still have many good years before HD starts to rear its ugly head. There is a wealth of information about how he can live healthy and positively to put off onset of symptoms. I see it as much the same a diabetic avoids lifestyles which causeby patty c - Huntington's Disease Support Center
I would believe that ours is the first generation who has access to so much direct information about HD. Prior to the genetic test being discovered in 1993, many people were diagnosed just based on symptoms , and quite often misdiagnosed. Familys were also very careful about disclosing HD in their family, it was at times the big family secret. It may be what is happening in your family, but thby patty c - Huntington's Disease Support Center
bluedaisy Wrote: ------------------------------------------------------- > a guest speaker said, "You know you > should test when the stress of not knowing is >interferring with your ability to live." Very true words. I like that quote. Pattyby patty c - Huntington's Disease Support Center
Bravo for your advocacy. She needed for you and your mum to be her voice when she couldn't.by patty c - Huntington's Disease Support Center
There are some vocalization programs coming out more recent than Dynavox. You might do well to have a communication assessment by a speech therapist. Even the Apple iPad's are coming up with some vocalization programs using the touch screen and typing. Low tech has always been out there. A simple communication page of pictures can help a person with very little speech get their needs met.by patty c - Huntington's Disease Support Center
Welcome Violet!!!by patty c - Huntington's Disease Support Center
I thought it would be helpful to move this to its own thread. Lil brings up common fears all parents face, not just those facing the risk of HD. I find it to be a very important subject that I think about just about every day. Am I doing it right? Am I freaking them out? Am I giving them enough information for them to make informed decisions about their futures? What are your thoughts?by patty c - Huntington's Disease Support Center
I make homemade ice cream for my husband. He only likes vanilla. He's not having any problem with thin liquids right now, or maintaining his weight, but I am thinking that in the future I can add protein powder or thickening agent to the ice cream base before freezing and it will be more nutritious. (ice cream still melts to a thin liquid, so if you thicken his liquids, you will need to offerby patty c - Huntington's Disease Support Center
good point Marsha.by patty c - Huntington's Disease Support Center
It's unfortunate that Sharon feels they have suffered a financial setback due to the video being uploaded and somehow finding it's target audience. Hey Sharon, how about considering it some free market research? Your video was viewed by some families and peropl affected by HD. The feedback as I saw it was overwhelmingly positive. Having seen it through the link here, I would be more likelyby patty c - Huntington's Disease Support Center
Does he tell you why he is not eating. Is it solely manipulative, or has eating become uncomfortable. My husband seems to have a marked increase in his chorea at mealtimes. We have tried tried timing his medications to meal time, no effect. Perhaps the mental and physical demand of eating is causing some disruption...I don't know, but it looks very uncomfortable, and makes meals less desirablby patty c - Huntington's Disease Support Center
Watching HD develop in a loved one who lives with you is like watching your children grow. The changes are so subtle day to day, that it goes missed by those closest to them. My husband and I were having marital problems when his HD was in early stages (also, we did not expect anything, he was adopted) While we were seperated, friends would call me and ask what is wrong, he's falling for no reaby patty c - Huntington's Disease Support Center
I sometimes wonder too if my husband has any brothers or sisters still living in MA. He was adopted through Catholic Charities and born in Brockton, MA Feb 7, 1968. If anyone has any information, PM me. Pattyby patty c - Huntington's Disease Support Center
Alright. We do all come here from different backgrounds and perspectives. I'm sorry for how intentions get to be misinterpreted sometimes. Katie and Barb, I'm pretty sure neither WANTS to offend, but somehow that has happened. Please still feel welcomed and approach the forum with an open mind. Katie, I understand where you are coming from, being in healthcare myself. Barb, the medical chby patty c - Huntington's Disease Support Center
Welcome back Stephanie! I'm glad to see you are in college and moving forward whether at risk or not. The best advise I have seen on here, I can share with you. Live your live to the fullest. Time is on your side. Live as positively and healthy as you can, whether gene positive or not, you will have a much better outcome if you are treating your body well. Seek out and find support for yoby patty c - Huntington's Disease Support Center
I have nothing further to add....but I LOVE that name Shrimp with a Kilt!!! Welcome.by patty c - Huntington's Disease Support Center
lilbutrfly21 Wrote: ------------------------------------------------------- > My 17 yr old son is probably going to be tested > soon and I wanted some guidence on how to tell his > 15 yr old sister since she also has a risk?!?!?! Hi Lil. I think your question got swallowed in the thread. I feel that honesty is best, and giving kids the information they can handle at theiby patty c - Huntington's Disease Support Center
Though the CAG count is a guideline, it is not a sure thing. My husband has a CAG of 43 and was symptomatic at 38yrs or earlier. He is now mid stages at 43 yrs old. No history of brain injury that I know of.by patty c - Huntington's Disease Support Center
Hello Annekri. Your doctor gave you good advise. Try to stay positive in knowing that you are nearly the same age as your brother, and you are not yet having any symptoms. That is a good sign to start with. Many people after finding out about HD in their family have this first reaction to test right away. You need time to let the information settle in and figure out what to do. Mike is riby patty c - Huntington's Disease Support Center
Wow, do genetic's counselors have to take boards and get licensed like doctors and other health professionals. How this person squeeked by with such wrong information is beyond me. Like Marsha said, your mom may be non symptomatic and still be gene positive. The only way to know for sure is for her to get tested herself. There have been some families in which, because of gene expansion,by patty c - Huntington's Disease Support Center
The blue ribbon is pretty common.by patty c - Huntington's Disease Support Center
That is great news, Carla.by patty c - Huntington's Disease Support Center
Ha ha ha, Sharon.... Yes, I was long winded....but is it really an article?!? Well, I've been looking for something I can do from home. Perhaps I'll become a writer. Thanks for the compliment on the video. Rusty very much enjoys telling his story to anyone who will listen...Did you love the line about the insane asylum? I nearly fell over. He never was very PC in his word choices, even beby patty c - Huntington's Disease Support Center
Hi Yanta. I feel what you are going through, and most likely there are many, many loved ones here who have been or are going through the exact same doubts. It's a very tough and personal decision requiring a lot of soul searching. The caregiver role is not for everyone, and considering bringing your children into the mix is probably part of your dilemma. If you are not sure if you can bearby patty c - Huntington's Disease Support Center
Perhaps it was not ready for public viewing. The video does say for preview only....maybe they want to figure out how the link was shared. At any rate, thanks Kim! Wonderful production! Pattyby patty c - Huntington's Disease Support Center
I don't think so. Atleast we have never been told, and my husband's bloodwork has always been normal. Besides, the people drawing the blood are likely not those responsible for analyzing it.by patty c - Huntington's Disease Support Center
I hear you both. My husband was never a big conversationalist, but he would atleast share opinions and discuss things with me. Now, conversation is quite an effort and very one sided. I look at other couples and listent to discussions. How I miss being able to talk with my husband and get more than one word answers. I do try to sit and spend some time when I get home to see how his day went,by patty c - Huntington's Disease Support Center
Pittsburgh is a very European rich ethnic area. Pork and Sauerkraut is big in this area. We also enjoy the New Years Pretzel (which is actually a danish) on New Years Day. I wish everyone a wonderful New Year. Here's hoping 2013 will finally bring the cure we are all hoping for. Patty Cby patty c - Huntington's Disease Support Center