Barb, I am sorry if what I wrote struck the wrong note with you.by FevreDream - Huntington's Disease Support Center
I guess I was always a sucker for trying to save people. you are all right about this. It is not my job to save him or make him be the person I thought he was. I think for now, I am going to try to just live without the HD ghost hanging over my head. Thank you all. I wish you all well with your personal struggles.by FevreDream - Huntington's Disease Support Center
Hi all! It has been a really long time since I posted on here, mainly because everything has been really quiet. Mr. H moved away, almost across the entire country and I rarely hear anything from him. But I have recently looked at his facebook page and he is posting some way out things. For example, he claims he has rejoined the military and has gotten his overseas assignments, that he is goinby FevreDream - Huntington's Disease Support Center
Hi all, you may have read some of my story. I haven't posted anything lately because there has been nothing to post. R. has completely cut off communications with me. I have talked to his family in two different states and get the same thing. He recently sent emails or letters detailing all the ways his families had not put him first. Example, his stepmom lives in the next state over, about aby FevreDream - Huntington's Disease Support Center
It has been over a month now and not one word from him. No email, no text and he hasn't bothered to call J at all. The judge made it very clear in court that if there is no supervisor then I do not have to leave J. That is good until J is 5. His birthday is the end of Feb. So, I have about one year where J is protected. I seem to relax a little more every week that goes by that I don't heby FevreDream - Huntington's Disease Support Center
Hi all, i just wanted to post an update to my ongoing sage with R. We finally went to court on March 20. The judge ordered us to follow the mediation agreement we signed in November. It says that R gets J every Sunday to Tuesday for a year but those overnights must be supervised by one of three agreed upon people (his stepmother or one of his two friends that J has met). At age 5, J will staby FevreDream - Huntington's Disease Support Center
thanks for the comments. Unfortunately, I don't have the benefit of having fallen in love with R. before the symptoms hit. When I met him, he was dealing with some extreme personal circumstances and any "strangeness" that I observed, I attributed to that. So, no I really did not know him at all. I never claimed to. I wish I had known him because I think he was a really neat guy.by FevreDream - Huntington's Disease Support Center
Hi all, I am wondering if anyone out there can tell me who the softer symptoms are more apparent to...My son's father and I knew each other only a short time (3 weeks) before I got pregnant. he was not a part of my pregnancy but he came back into our lives when my son was a year old. After about 4 months, he moved away and we didn't see him again until about a year ago (after about a year andby FevreDream - Huntington's Disease Support Center
Congrats Carla! It is sad to realize that even though people go into the health care profession, some of them are there because of the money, not because of a higher calling. I hope everything goes well for you. And I hope that you will have peace of mind knowing that your sons are being cared for by the people that love them. Hugs!by FevreDream - Huntington's Disease Support Center
Ok, You love him and you want to have kids with him. You can have his kids. You can have the fetus tested in utero or you can have implantation (there are others on this forum who have gone through this) I think there are even ways to test the fetus that don't involve your boyfriend being tested. It is hard. I think that it is better to know and move forward than to not know and be stuck tby FevreDream - Huntington's Disease Support Center
Maybe the medicine will be so cheap to make that they won't have to charge a lot to make a profit. And after a certain number of years, patent protection (I think that is what it is) goes away so they can make even cheaper versions.by FevreDream - Huntington's Disease Support Center
My mom's cancer meds (one injection once a week) cost about $5000. But I think medicaid covered it because she is considered to have a terminal illness. So, I think it will cost a lot but most insurance will cover it. I hope we have this problem someday.by FevreDream - Huntington's Disease Support Center
I am so sorry for what you are going through. I understand but only in a tiny way. The way you describe "the sky is blue, the sky isn't there" thing is just so right on. I wish I had some words of encouragement...maybe we could email and vent to each other. Sometimes venting is all you have to get you through. And it helps to have someone who understands that the person you are venby FevreDream - Huntington's Disease Support Center
Thanks so much. My son's father, R, is still able to hold a job, drive a car and (sort of) manage his money. He hasn't made the choices I would make as far as spending money but ...whatever. He has an attorney and has been trying to get unsupervised visits since our son was about 15 months old. Just before court, he moved 13 hours away. After about 15 months and a possible fight with his famby FevreDream - Huntington's Disease Support Center
OK let me start by saying that I am not trying to upset anyone with this post. Some of you know what I am going through with my son's father. He was seen by a neurologist and diagnosed with "mild HD" because of some lower limb movement. The neuropsych test showed he has normal IQ but some impairment in his attention and reasoning. We are in the middle of what seems to be a bad tug oby FevreDream - Huntington's Disease Support Center
Dear Josh, It takes time. I learned when I was 8 months pregnant that my son's father has HD and had known about it for three years. He just didn't think it was something I needed to know. I cried nearly every day until my son was born. Then I tried to stop thinking about it for about a year. Then I started reading about it and learning more and crying more. I was so mad because I wantedby FevreDream - Huntington's Disease Support Center
praying for you and your mom!by FevreDream - Huntington's Disease Support Center
I bet you feel like you could just fly away you are so happy. It is such a huge weight to be lifted. I am so happy for you and your family.by FevreDream - Huntington's Disease Support Center
You are so brave. Getting tested means you will be able to join clinical trials, take meds and such if you need them. It also means you will be able to counsel your children on testing and how much strength it takes. Good luck to you, please let us know how it goes.by FevreDream - Huntington's Disease Support Center
OMG!!! Like I have said before, negative must be the best word ever invented. Happy early Christmas!by FevreDream - Huntington's Disease Support Center
I hope everything went well for you. Prayers and good thoughts coming your wayby FevreDream - Huntington's Disease Support Center
I tried to get R to go to him but he told me that they don't make appointments for 25 years in the future. Then he told me that Dr. will only take him if he is showing symptoms. But now he tells me the neuro he is seeing is a collegue or associated with Dr. L in some way. I am at a dead end with R and his docs. I just don't know how to deal with him anymore. All I can really do right now isby FevreDream - Huntington's Disease Support Center
Give thanks for living in a world of modern medicine and the hope for a treatment or a cure for so many awful diseases! And eat lots of yummy food!by FevreDream - Huntington's Disease Support Center
The attorney just seems to be all about him. I even saw another attorney the other day and she told me that it doesn't matter what kind of problem a person has, they will get visits. She gave me an example of a case she worked on where the mother had "suicidal and homicidal ideology" and the mother still got full custody of the child.. I saw him today, he obviously loves this child oby FevreDream - Huntington's Disease Support Center
His friends don't seem to see the same things I do. I have no idea what he has told them about me so I don't feel that I am able to go to them. The one time I did...well, they never got back in touch with me. He seems to be listening to his attorney more than anything...so, I am up the creek. He is coming to see J today at my house and I plan to try to talk to him but I pretty much know it isby FevreDream - Huntington's Disease Support Center
I know some of you were not entirely happy with my rant the other day over the mediation agreement. After thinking about what I signed, I think I did the very best thing for my son and his father. As you probably all know, people in my situation (child custody, visitation) have a hard time communicating with their child's father. I especially do. We never were in a place of loving each other.by FevreDream - Huntington's Disease Support Center
Does anyone know of a support group in or around Memphis TN?by FevreDream - Huntington's Disease Support Center
this is a very supportive place. People don't always agree here but you can get good info and a lot of hugs and prayers. People here have been through just about everything this disease can do. Just hold on and know that you are not alone.by FevreDream - Huntington's Disease Support Center
Thank you nor'easter for being compassionate. I would probably be just as afraid if my sons father did not have hd though i tell myself it would be different. To me, he has not made enough of an effort to get to know j. He blows in and then blows away and now he has blown back into our lives. I wish I could talk to the dad and explain my feelings and my worries but he just looks at me. He neby FevreDream - Huntington's Disease Support Center