I understand your fear for your children. I think it is great that you have found an outlet for all your worry and stress and that you are trying to see the light.by salamandah - Huntington's Disease Support Center
Thanks Bridie! I start to doubt myself. No one that has known him for his whole life can bear to admit there is a problem. I am afraid that I am forcing them all to see that he does have a problem. I am keeping my fingers crossed that he doesn't reschedule this appointment that is coming up on the 13th. He really doesn't want me to have anything to do with his doctor visits. Because he is tby salamandah - Huntington's Disease Support Center
congratulations!!!!by salamandah - Huntington's Disease Support Center
Hi all, I don't really know if R is in the early or middle stages. I feel like he is obviously impaired. I feel like if I met him on the street and had a conversation with him I would walk away thinking "that guy is messed up". But his best friend that has known him since high school says R is fine, maybe 98% rather than 100%. His stepmother (who cared for his father for 13 yearsby salamandah - Huntington's Disease Support Center
happy dance!!!by salamandah - Huntington's Disease Support Center
Well, I am glad that you are having a good time and that everything was going smoothly. I truly think that nurses need to undergo some psychiatric testing of their own. My mom deals with some nurses that are totally dedicated and caring and really looking out for the patient. And she has to deal with some that are just there for the paycheck and the benefits. What a totally uncool, uncaring tby salamandah - Huntington's Disease Support Center
absolutely you deserve this time!! Don't let the nursing home make you feel bad. I get the feeling that they rely on you to do most of the "heavy lifting" when it comes to your husband anyway. They need to do their job. What if something (god forbid) happens to you and they have to take care of him without you? Take your vacation! You deserve it!by salamandah - Huntington's Disease Support Center
I started crying as I read this! I feel like I have been living in a land of acceptance. I accept that Hd will affect my child in one way or another. But now, it seems like there is hope! I am overwhelmed!by salamandah - Huntington's Disease Support Center
hang in there! grief, anger, denial...I keep feeling betrayal. Betrayed by my son's father because he didn't tell me, betrayed by nature and the universe for letting this possibly happen to my sweet baby boy. I think the stages of coming to terms with a positive diagnoses are much the same as coming to terms with a death. try to think of positive ways to deal with this. Try really hard not tby salamandah - Huntington's Disease Support Center
I hope your dad gets well. I hope you and your kids can relax for a few days and have some fun. I have no advice about what or when to tell your husband. Hugs!by salamandah - Huntington's Disease Support Center
Hey, one of the symptoms I have noticed with my son's father is denial. Even though he has tested gene positive and his father died at age 46, (R is 38) he tells me he does not have any symptoms and that he has no problems even though I can see the problems. One thing that really clarified it for me was when he told me he had tried to make a dr. appointment but they wouldn't take him for somethby salamandah - Huntington's Disease Support Center
My son's father has HD. He decided that HD was not something I needed to know about when I told him I was pregnant. Then, when I was 8 months along (turned out to be exactly one month before my son was born) he sends me a letter. It was the letter that his doctor had written to him when he got tested. His CAG is 48. I am terrified. If I knew when I got pregnant about HD, I would have hadby salamandah - Huntington's Disease Support Center
Hi all! You may or may not know that my mother had cancer. It is called multiple myeloma and is a blood cancer. She is thinking of starting a mostly raw food diet. I was wondering if there is any research on raw food in people with HD. I have decided that I have to believe that J does not have the gene and that I have to treat him like he does. I have decided that the best way I can help hiby salamandah - Huntington's Disease Support Center
Thank you juliew! That is a fantastic essay! I hate to nitpick on such a wonderful essay but shouldn't the word be affected rather than effected in the next to last paragraph? I hate to be a grammar freak but I would hate for her to lose the scholarship based on one word. I hope I have helped and not made you madby salamandah - Huntington's Disease Support Center
No problem Judy. Feel free to PM me and vent if you ever have a need.by salamandah - Huntington's Disease Support Center
thanks Judy! I really feel like R must have fallen down on something. I guess he could have lost his footing and fallen down some steps. Like I said, I am worried about him. Last year, I got a MRSA infection from a bug bite. My entire arm swelled up and it was very painful. I worry that something like that will happen to R. It just really bothers me that he seems to have no one who cares aby salamandah - Huntington's Disease Support Center
Yay! Congratulations!! I wish you both all the bestby salamandah - Huntington's Disease Support Center
I just really don't know how he could have gotten the marks. Maybe it has nothing to do with HD. He was alone IN the pool with J but not alone at the pool. J is a good swimmer and always wears floaties.by salamandah - Huntington's Disease Support Center
Hi all, R came over today to visit with J. Since it is Memorial Day, I told him to bring his swimsuit and plan on swimming with J. Well, he seemed nervous but I didn't really think anything of it. He finally got into the pool and just sort of stood around in the shallow end for a while. I was not in the pool but sitting on the deck. I was trying to be there without being there. Anyway, heby salamandah - Huntington's Disease Support Center
Just so you know, as long as your sister is recognized as the mother (her parental rights have not been revoked) she should have some sort of visitation rights to her children. I understand the oldest is old enough to choose if she sees her mother or not but there may be some way for her to have some visitation with her kids. Just in case her ex gets the kids, she should still have rights, no mby salamandah - Huntington's Disease Support Center
My son's father has a CAG of 47 or 48. He is 38 and I am beginning to notice some jerkiness in his legs and other movements. He has been having the mental symptoms for a few years I think. He got tested at age 32 but has never been diagnosed symptomatic. I am trying to get him to go through the tests but he is very (understandably) resistant. Good luck with your friend.by salamandah - Huntington's Disease Support Center
not one of three of my TN senators has voted yet. I have sent them all a letter.by salamandah - Huntington's Disease Support Center
I do think you need an lawyer. You may be able to find some sort of legal aid or reduced fee lawyer. In the meantime, write down every time the father visits, calls, etc. And write down every time he was supposed to and did not. If the girls are not living with you, also write down every time you visit, or call. It could go a long way towards showing that you are involved in their lives andby salamandah - Huntington's Disease Support Center
Does he have any family you can call? Or friends? I wish I could tell you exactly what to do. Is he on any meds? Can you get him to a doctor? You need to do your best to take care of your kids. It is not a good environment for them with someone who is always negative, criticizing, etc. I have read that meds can make a huge difference. Prayers for you and your family. Good luck!by salamandah - Huntington's Disease Support Center
Isa, It will be ok no matter which way the test comes out. I am still coming to terms with the fact that my precious baby might have HD. I keep telling myself that they are coming up with new treatments everyday. Keep busy like others have recommended. When you get the results, give yourself time to absorb the results. Then, move forward with the info you have. Good luck. I know it is hby salamandah - Huntington's Disease Support Center
what great news! my mom says you love your grandchild even more than you love your kids. She is totally in love with Jackby salamandah - Huntington's Disease Support Center
I just heard that the little girls who were kidnapped have been found alive and unhurt. Their kidnapper is dead! Everyone around here is just overcome with happiness!!!by salamandah - Huntington's Disease Support Center
Diggingdeep: Congrats on your decision to have a baby. Also, congratulations to your husband for being upfront about his disease. You are very lucky to be able to make an informed decision. 90% is great, fantastic and I think you should absolutely do it. Remember that 50% is not bad odds either. If you read any of my posts, you will know what I am experiencing. There are many things I wishby salamandah - Huntington's Disease Support Center
thanks blue daisy, that is great to know. I went into the local post office today and there was not one thing. We live ten miles down the roadby salamandah - Huntington's Disease Support Center
On April 27 2012 a mother and her three daughters went missing in my county. Their car was found a day or two later and everyone kind of thought the mother ran off with a guy she knew and took the girls with her. On this past Friday, two bodies were found in his backyard, buried. I just found out that the bodies were identified as the mother and her 14 year old daughter. My little sister is 1by salamandah - Huntington's Disease Support Center