Excuse me, I am not a victim, I may have HD, but it does not have me! I find your post total rubbish, it has to go through clinical trials first! And then, after successful clinical trials, then this new amendment can be used while waiting fda approvalby Barb - Huntington's Disease Support Center
It's not about being stubborn, I think that's a poor choice of words. Num 1, they don't see symptoms in their parents, and so in their eyes that gives them hope for their future, and that is all they have is hope. Just because some people find it easy to test like myself, does not mean that others don't find the thought of possibly knowing that their whole future could be filled with sheer horrorby Barb - Huntington's Disease Support Center
That's funny Will, I was thinking of Dusty too, and how she loves making her snow angelsby Barb - Huntington's Disease Support Center
I actually don't remember when these things are, but thank you for thinking so Your good friend posted on your facebook page, some great pics of you the night before the marine corp marathon, and they were great pics, that's how I remembered Oooh, sorry you missed the cut-off, but so good to hear that your other partner in crime did complete the race, and so now, yes, you can get him next year,by Barb - Huntington's Disease Support Center
I sure would have been glad to have some Will, but they weren't the right type for my printer. Hey, I heard there was another Marine Corp Marathon and that you were in it again, hope you did well and congratulationsby Barb - Huntington's Disease Support Center
I wanted to let everyone know that our good friend Dusty spent the last several weeks in hospital. Her daughter was kind enough to take time to post on her facebook page to let her friends know. We don't know the details, but that doesn't matter. Dusty is back home now, and has posted on facebook that she came home last week, and she says they even had a piano there that she was able to play Weby Barb - Huntington's Disease Support Center
Will, that's so nice about your ink offer, so nice of you, but I don't see mine on the list, mine is a hp D2560, oh well Hey, glad to hear you're doing well and your Enroll visit went so good, way to go my friendby Barb - Huntington's Disease Support Center
No, mri's are not helpful, they don't show any damage until later in the disease. I wrote you a post on your other thread where you were asking about cag 39, and I might want to see another neuro. It depends if he found anything wrong with your gait, or slow eye movements are part of diagnosing, but maybe he didn't find anything like this. It would be helpful to find out specifically if he foundby Barb - Huntington's Disease Support Center
Actually 1 in 10 people have jhd, and yes, occasionally a cag repeat goes lower when passed to children, but more likely it stays the same or goes higher.by Barb - Huntington's Disease Support Center
Hey Lisa, I haven't been on here in awhile, but just saw your post and wanted to reply to you. I have a cag of 39, am 59 years old now, and still very very early stage. I became symptomatic around age 42, and did the bloodwork and neuro exam at age 44, I came out positive and I was also symptomatic. It's not just memory and thinking tests that they do. They do certain physical tests, having you wby Barb - Huntington's Disease Support Center
I was talking to someone at ubc a few weeks ago, and the patients here started first. She said the patients here, 6 I believe, have been getting the treatment for a few months now and it's going good.by Barb - Huntington's Disease Support Center
Will, good to hear from you! I have lots to say lol, but just can't form my thoughts tonight lol, so will check-in and post some more tomorrow, but for now, glad you're on the mend!by Barb - Huntington's Disease Support Center
Happy New Year everyoneby Barb - Huntington's Disease Support Center
What I'm trying to say is this. Of course he has told you he doesn't want to die alone, nobody does. And yes, he is still human if he says he has feelings for you. He is telling you, not just out of pity for you, but also for his own sake, he does not want a relationship that is and would be his new reality. He's not just trying to spare you. Quite obviously, that type of relationship would be paby Barb - Huntington's Disease Support Center
I don't mean to sound callous, well maybe I do, because I don't understand what you don't understand about this. I don't get it. He told you he doesn't want to be in a relationship, it seems to me he had enjoyed having a friend, but he did not want to go through the pain of another relationship. What don't you understand about thatby Barb - Huntington's Disease Support Center
Hope everyone had a wonderful Christmas, and wish everyone the best in 2016by Barb - Huntington's Disease Support Center
Welcome to the forum Vin, and what a positive post you wrote for sureby Barb - Huntington's Disease Support Center
Happy Thanksgiving to you to Mareby Barb - Huntington's Disease Support Center
So glad to hear your trip went good. You don't need to worry about Donnie ever not remembering the trip though, he will always remember it. HD is not like Alzheimer's, in that, in hd you don't lose your long term memory, only short term memory, so he will always remember this. Happy Thanksgiving to you tooby Barb - Huntington's Disease Support Center
Oh my gosh Howard, I am so sorry. I think Marsha would be a good advocate for you also, why don't you send her a pm in case she doesn't read your post. Please keep us updated, and wishing you and Allison the very bestby Barb - Huntington's Disease Support Center
I know that if Howard is around, he usually has good advice and ideas on insurance. I have heard that employer insurance is easier to get than other insurance, and from what I've learned here, it seems that employee disability coverage is the best thing to have. I know it's nice to have life insurance too, but disability and medical coverage will go a long way with hd. I would look into what someby Barb - Huntington's Disease Support Center
Lol Tyler, I don't watch hockey, or any sports of any kind lol Yeah, the first part of this trial is completely on safety, and I read after this, it will also be opened up to the US, if all goes well in the safety trial first. I get what you mean now too, think we're all just venting on what has not been a very transparent process in this trial. If I ever get a canucks jersey, i'll send it to youby Barb - Huntington's Disease Support Center
I'm so sorry to hear that, and will be thinking of you with much loveby Barb - Huntington's Disease Support Center
Actually no, bc is 1/6,000, not 1/10,000 like the rest of Canada and the US. Never heard anything so foolish, where would these places find enough candidates that are closeby. They only need 6 each. I don't know why they chose the sites that were choses, but i'll tell you one thing, UBC is one of the top research centres in the world, why wouldn't you choose ubc. Sorry, find your post a bit foolby Barb - Huntington's Disease Support Center
Also, this will be silencing both hd genes, enough for a holiday, but I always thought just silencing the bad hd gene was what was hoped for. I realized that silencing both genes is what we have now, so we go with that, and that slowing just the bad one is maybe more difficult? So are we doing it this way just because the other way isn't developed yet, and that we still want to wait for that. Orby Barb - Huntington's Disease Support Center
Marsha or Robi, would either of you know this, or have a good guess at this question, I'd really like to know. Giving best possible results for this trial, and further trials, I want to know a possible future. Would a possible future be that people with hd would need to get spinals at set intervals to stop the disease, or, are there ideas that this could eventually be turned into pill form???by Barb - Huntington's Disease Support Center
So I just checked out the trial link Robi gave, it's a very good link, everything I wanted to know about the trial, and about physical health criteria to get into the trial, etc, the things I wanted to know. It also said they are not doing recruiting yet, and I think that is true and false, because it turns out they are not really doing recruiting, but they are doing hand picking. I know this becby Barb - Huntington's Disease Support Center
So I have finally been up to reading the link I posted in my above post. Wow, I had no idea what I truly posted. Anyways, the low down on the article, is the globe and mail did a story about the trial, and about hd, and it said that 6 people in Vancouver have been picked and are beginning the trial in august. It also said these people all had to live very close to ubc, because they would need verby Barb - Huntington's Disease Support Center