Hey BJ, welcome to the posting side of things here. I am glad you did and I would like to add, in case some here do not know about your event, it is a great one! Everyone here should at least visit your site whether they live close by or not. I know it lifts me up to see stuff like this happen. Keep up all you do! (your family too) Brett Tby Brett T - Huntington's Disease Support Center
JLC, If Margie is not sure here is a list of places that are running the Trial, that may be able to help and say for sure. I will ask my contact that question too, and try to find out for you. The United States of America Location Site Name Contact Person Telephone No. AL, Birmingham University of Alabama at Birmingham Donna Pendley 205-996-7865 CA, La Jolla University of Cby Brett T - Huntington's Disease Support Center
Thanks Margie, That is great news. So glad to hear it and thanks for your help, not in just with my question, but for doing the trial and helping us all. Brett Tby Brett T - Huntington's Disease Support Center
Tim, I do and I did speak with her. She is going to look into it for me. I found out about her and it from a hdtrials.org email ( but it had an old number listed as hers, however I could get through using it, forgot to let her know when we spoke). They have 4 trails going on. ( Hart is almost full ) I am going to go up and meet with a doc and assess the best one to help out with based on hby Brett T - Huntington's Disease Support Center
If you live alone is there no way to join this trail or any others? I ask this based on this one's requirement of having a family member or caregiver come with you to two screenings, by family member I am thinking this means someone who lives with you. ( I can see why this is ). Also, please know I do know how to contact this trial directly to find out, but thought I would ask here too if otheby Brett T - Huntington's Disease Support Center
I'm a big fan of your attitude, Will. It's funny for a bunch of kids that are supposed to be wicked smaht they seem to miss, it's not so much about the getting in, as it is about the finishing what you set out to do. -Brett Tby Brett T - Huntington's Disease Support Center
since when do Marines quote Shakespeare, or go to Harvard for that matter?by Brett T - Huntington's Disease Support Center
Thanks for letting us know. I had been thinking about you today. This is not news I wanted to hear, but think you are brave for sharing it and your plans. You know how to reach me if you would like to talk about your family situation. -Brett Tby Brett T - Huntington's Disease Support Center
I commend your courage in informing us with what you know. Brett Tby Brett T - Huntington's Disease Support Center
Eric, often I get the feeling with you, you are looking for an argument which is not there. I simply asked how you felt on a topic after you stated, " no one can force a test." It was a frank question, and not one that implied I know how you felt about it, or said something you did not. I also asked if you felt the previous things I wrote were considered to be, by you, just excusesby Brett T - Huntington's Disease Support Center
I read this today and thought I would pass it along...by Brett T - Huntington's Disease Support Center
I would say, if some are morally wrong they get to pay for their sins here on earth, and currently, as it stands, there is no possibility of parole. I do agree with personal responsibility though, and with greater awareness more pHDs will be able to take it. Eric, I hope you are, or get to, see someone about all your resentment. This is a sincere comment, not a wise crack. Brett Tby Brett T - Huntington's Disease Support Center
Buddybird, I would happy to send you a PM letting you know about the history of HD in my family if you would not mind that, and I think you summed up my thoughts pretty well, thanks. My ability to articulate them in the past year has diminished quite a bit. Often I know what I want to say, but I just can't express it as well as I once could. At times it can be painful to read stuff I've writtenby Brett T - Huntington's Disease Support Center
Hi Buddybird, First I would thank you for sharing your life with all of us here. I'm not sure I would be able to if my kids fell ill. I guess I am more speaking about when "at risk" kids are dating, not popping the question, but I do think/agree simply saying I'm at risk for HD does not go nearly far enough in explaining what this means. I did not know about HD when I met my wife inby Brett T - Huntington's Disease Support Center
Who wouldn't, who is not at risk themselves, want to know someone else's gene status? I know this thread is about two specific people, but again, alwayshope20 I don't know you so, I would rather not give direct advise to you, or pretend to know what is going on with you guys, but would like to use this opportunity to address this moral aspect of HD and dating in general. Why would it be &quoby Brett T - Huntington's Disease Support Center
I hope the interview went well, and your project is coming together for you. I appreciate your work getting the word out. Brett Tby Brett T - Huntington's Disease Support Center
I think some questions have no answers, at least none that are correct, but I hope the changes in his medication improves things for both of you. Brett Tby Brett T - Huntington's Disease Support Center
Barb, I pray so, I will be sending both of you some. Matt, I may be more of a bigger sinner than you, giving me less of an option not to. Brett Tby Brett T - Huntington's Disease Support Center
To me no one here can help you figure out what the two of you should do regarding your relationship, as none of us know either one of you, but we can offer some advise as to what other "at risk" people do to be as proactive as they can in fighting HD, whether they have been tested or not. First and foremost is to start living the healthiest lifestyle you can. Eat right, exercise/by Brett T - Huntington's Disease Support Center
Good luck, Judy. As far as how likely it would be for them to have it too, it would be the same, 50/50 for both of them ( if they have the same parents ). I do believe you can not assume siblings who are both HD + will manifest symptoms at the same age, or even have similar symptoms when they first do. Brett Tby Brett T - Huntington's Disease Support Center
Thanks Luz, and Matt I've seen "your" vid too. I think they are well done also. Big help to us caveman. Brett Tby Brett T - Huntington's Disease Support Center
I remember being taught about HD in my 9th grade biology class. It seemed to be a popular model for explaining how genetics work, but I must say they did not go into describing the symptoms, or what it meant to have it, other than it would show up by the time you were 45 if you carried the gene, and you would not live more than ten years after that. This would have been 1983. I am not sure howby Brett T - Huntington's Disease Support Center
I am thinking of you, Sara... Brett Tby Brett T - Huntington's Disease Support Center
JL, I did not mean it sound that way. I was trying to say there are so many reasons why creating awareness is important, that they need to be thought out ahead of time to give them the best chance of being heard. I would love a cure, but I need other things too. I not only want people to become aware of HD, but also what they can do to help, specifically ( If they want to ). I can notby Brett T - Huntington's Disease Support Center
My prayers go out to her family, and you Matt. Brett Tby Brett T - Huntington's Disease Support Center
Thanks, Eric. It's just some feel memory loss is not an issue with subcortical dementias. Again, they could be wrong. I don't know. Brett Tby Brett T - Huntington's Disease Support Center
Fred, having a specific purpose, or suggesting one, when engaging in any kind of advocacy is never wrong. Awareness for the sake of awareness does little. The fact you question it is good. For it gives those who support it an opportunity to explain why they want it, and this may lead to others better understanding our cause, and/or (more importantly ) know how to help. If I can help you in &qby Brett T - Huntington's Disease Support Center
Thank you, Fred responding to my question, and jl too. I am hoping to hear what others think as well. Brett Tby Brett T - Huntington's Disease Support Center
I have had trouble with this cortical dementias and subcortical dementia. There is a very limited number of health care providers who understand HD, who are local to me. These not so experienced providers have questioned why I would have memory loss if my dementia was the subcortical type, as they have read. Is there another reason why pHDs suffer from memory loss, or do they not fully understanby Brett T - Huntington's Disease Support Center
To me, there is also the secrecy aspect of this disease to consider. It is devastating to be surprised by HD. Life choices you have made, which now make your circumstances more difficult ( if possible ) may have been avoided if HD came out of the dark. At some point you have to move passed worrying what others may think or do, and do what is best for your children. To be burdened with this diseby Brett T - Huntington's Disease Support Center