My son was slower with processing that started when in 9th grade. He finished his senior year on home bound, so he would was able to go at his own pace with his school work. Said he wanted to graduate, and that he did.by cbreeze - Huntington's Disease Support Center
It may not be a symptom. I just wondered who did that, that has HD, or jhd. I know symptoms vary in everyone. My mother in-law, x-husband and son all do that, and it was something that I had seen in my husband before I knew of HD. When I saw my sons do that, I worried. My now 18 yr old son has Jhd, and he did that since he was small. Just something they all had in common. Wasnt sure if it was HDby cbreeze - Huntington's Disease Support Center
For all who have HD, and those who are family or friends of someone with HD. I wanted to know if curling toes under feet was a characteristic noticed before testing was ever done. My son who has JHD, and his father with late stage HD both would sit and watch tv etc, and have their toes bent under their feet. They did it involuntary, but when asked they say it just feels good. Was wondering of anyby cbreeze - Huntington's Disease Support Center
I too once blamed God. I did for years. My son is 18 years old. He has Juvenile Huntington's disease. I asked why God would do this to such a great kid. A child who was once happy, and now prefers to stay in his room. My feelings with God now is that only he knows the plan in this nightmare. I tell my son, and I always have since he was small that he is a child of God, and God has blessed me toby cbreeze - Huntington's Disease Support Center
Thank you Steve.by cbreeze - Huntington's Disease Support Center
Sure do! Maybe you will be fortunate enough be my patient some day.by cbreeze - Huntington's Disease Support Center
People suffer with a multitude of thiings every day.You all have opinions, and I certainly have mine. Children and adults suffer from a multitude of things every day. And yes, jhd and hd is an illness along with many others. Do you think people with HD suffer more than others inflicted with other illnesses? If a person is an adult, and at risk. And choose not to test, it is THEIR choice, not anby cbreeze - Huntington's Disease Support Center
I remain firm that y'all need to mind your own business when it comes to if a person wants to test or not. And you want to talk about who the government supports? Our government supports more that are NOT disabled,than those who actually are disabled. So don't even go on about who pays for those affected by HD. The life that others choose is not your business, y'all just tend to make it yourby cbreeze - Huntington's Disease Support Center
Judy, what I am saying is what the girl does is is none of YOUR business!! Nor is it anyone else's business! She is a grown women. If it makes you sick, go stick your finger in your throat and vomit. Yes I have a son with jhd, and a 20 year old at risk. I also can respect ones decision to test or not. This girl has chose not to test. People such as yourself need to mind your own business andby cbreeze - Huntington's Disease Support Center
Sorry to see that you tested positive. I don't have any magic words for you. My son had symptoms. Since he was 14 or 15, I first noticed a decline in grades, then slow movements. I couldn't find anyone to help my son, all said he was too young, and dr.s didnt want to test I'm because he was young. This past year was his senior year in high school, he grades were slipping and I wanted him to gradby cbreeze - Huntington's Disease Support Center
You got it Katie ! Testing is personal. This mother in law needs to mind her own business! This poor girl watched her own mother suffer with HD, and surely worries about her own fate. Koodos to this young lady for moving forward and living her life. I pray her children do not have HD, but the choices she makes are her choices. Soon to be mother in law needs to show some respect! The girl obviousby cbreeze - Huntington's Disease Support Center
AMEN! I have a son who tested positive forvJHD at age 17. I had questioned for years symptoms I was seeing, but it had to be his decision to test. His CAG was 48. I have a 21 yr old son at risk, and he chooses not to test. It angers me to read what you write about your DIL. I say mind your own business! Your DIL has her own reasons NOT to test, she is a grown women, and your son is an adult. Youby cbreeze - Huntington's Disease Support Center
Howard: Thank you for getting the facts. When I first took my son to the Neurologist, I knew exactly what I was seeing. I thought when I went to the Neuro that I could tell them to do the blood test and it would be done. I was told right up front when we sat down that the decision to test was up to my son. He was 16 and legallly able to make the decision himself, he could seek my advice, but theby cbreeze - Huntington's Disease Support Center
In SC, I cannot make my son have a test!. He is of legal age in SOUTH CAROLINA to make his own decisions to testing. the parent does NOT have a say! What do you mean "Take some control"? I do NOT have a say in South Carolina as to make my son have a blood test. Do your research on South Carolina and rules on emansipation before you make judement on who has control. He has the right toby cbreeze - Huntington's Disease Support Center
I don't agree with anything you said Fred. If he is HAPPY playing his xbox, I won't be the one to take that away. How would you feel if you were 17 and told you had symptoms of HD? T0 know at 17 your gonna be like your dad (end stage hd)?To know that your life wont be the same as all your friends at school. Your response may be appropriate for a 17 year old who is healthy, and has his future ahby cbreeze - Huntington's Disease Support Center
Unfortunatly there is nothing around me that deals with HD, unless we drive 100 miles for a doc to ask us questions and use us to teach them. When I can get some extra money together, I want to take him to John Hopkins, they are extremely knowledgable there. I think it is best if I dont mention HD to him right now. He got handed a bad hand, and I do think he is angry about it. I think he has giby cbreeze - Huntington's Disease Support Center
Lesllie, your NOT alone. My ex husband has end stage HD, and my 17 year old son has Juvenile HD. My 19 year old son has no symptoms so far, and I pray he never does. I have times of anger, sadness, crying and other days of just determination to get through it, and do the best I can. If you need to vent or talk, this is a great place. You can email me also at LLstrauby cbreeze - Huntington's Disease Support Center
He is my same ole Craig. He doesn't talk. Does'nt really go out of the house except to ride his bike in the evening after the sun goes down. ( pretty hot here in SC!) Tried to talk him in to playing golf with my older son, but he just isnt interested in anything. Whether he talks or not, I am glad to have him home. I was really mad at him when he left, but missed him while he was gone. I would doby cbreeze - Huntington's Disease Support Center
How old is your daughter? Where did you first take her with symptoms of JHD? Was she still in school? How did she do in school? I took my son to columbia SC, only place near me, (100 miles away) I was not satisfied at all. Don't think they really cared about either of us. I got no answers as to whats next? What do I do ? etc... I go from anger to sadness about the JHD. My son just turned 17. Heby cbreeze - Huntington's Disease Support Center
Just wanted to check in, and say that Craig is home from PA. He spent 5 weeks with his pap and dad. I was very angry at him when I took him to the airport a few weeks ago, but since he has been gone, I did miss him. He came home today, and I told him I was angry when he left, but that I really missed him. Told him I was so happy to have him home again. These past few weeks, I just felt unsettledby cbreeze - Huntington's Disease Support Center
My son doesnt talk about the JHD. He doesnt care about anything. I have not intention on going to counseling. I also am not taking my son to counseling. Why? I am not going to pay someone to have me do all the talking. I am not taking my son to sit in a room and not talk. He could have done better in school, but he chose not to. He could communicate here at home, but for months he chose not to. Iby cbreeze - Huntington's Disease Support Center
My son is turning into someone I don't know. He doesnt socialize with anyone here at home, especially me. Today he told me that he doesn't like me. I in return told him that if he doesn't like me, he does'nt have to live here. I even put some of his things on is bed, and told him to finish packing and go if he was so miserable here. I feel angry that I raised him, made his life easy, do hisby cbreeze - Huntington's Disease Support Center
Thanks for all your advice. I have a doctor appointment scheduled this Thursday for my son. I also called a advocate for disabilities in my area, to help me out with the school, since the school drags their feet. I gave the school paperwork the beginning of the year that showed his cognitive test results, that they were below average, and that they were suppose to monitor my son. The school hasby cbreeze - Huntington's Disease Support Center
Thank you for your response. I just don't know if I should tell him why he does the things he does, or should I just leave it alone? I don't want him to be afraid. When we saw the neurologist last year, and I comfronted him with what I suspected, I could see how fearful he was. I cant do that to him again.I feel like it is my job to protect him. He is going to see his father next week in PA.by cbreeze - Huntington's Disease Support Center
It is sad to watch my own son keep to himself all the time. HD is like the elephant in the room at my house that we all see, but really pretend we don't. I just feel my son has to see what I see. He avoids doing things so others don't see, that is how I know he knows what I know. My other son, and family members see what I see, but none of us say anything to my son. When I took him to the neurby cbreeze - Huntington's Disease Support Center
My son's grades continue to decline. He sniffs alot. He still grunts/hums with eating. His walk is stiff. He postures his hands. He blinks.. I just see so many things. But last year he refused to be tested. We went to the neurologist twice, I just didn't see the point of it. All they do is a mini neuro exam, and ask how he is doing. 15 minutes for a 200 mile round trip. I feel angry thaby cbreeze - Huntington's Disease Support Center
I spoke with the school principle today and the psychologist. They are going to keep eye on things. psychologist is gonna speak to him about lunch and school indirectly. After the holidays may talk to him myself or consider speaking with a therapist who is aware of HD. I find that doctors and other professionals really not familiar with HD. No. my son does not have ADHD. He doesn't have any prby cbreeze - Huntington's Disease Support Center
Thanks. Yes. Today I spoke with the principle and the school psychologist. The psychologist is going to tallk to him indirectly about lunch and school in general. I just feel that kids may have said things to him about the humming. Or the way he carrys himself. Such as movements and walk is not the same as other boys his age.by cbreeze - Huntington's Disease Support Center
WOW.. I just watched the youtube video, and am still crying. My son has symptoms of HD. He is 16, and this video was just so sad to watch. Though in most all the pics Rikki is smiling. You can see all the love in the pics. She was surrounded by so much love. That is just wonderful. But sad that she even had HD and that she is now a beautiful angel.by cbreeze - Huntington's Disease Support Center
I have posted on here a few times, but not lately. My son is 16. He shows symptoms of HD, but doesn't want tested. Had cognitive testing which showed a decline. MRI ruled out a tumor to explain the decrease with cognitive impairment. WEll. my son is in High school. Doesnt seem to have any friends, even though he a a great kid. He told me he doesnt eat lunch at school because he doesnt like theby cbreeze - Huntington's Disease Support Center