They said that the study participants needed to live within like a hundred miles of the test sites for emergency situations. They didn't say exactly which criteria was used. Just some of the general things that I mentioned earlier. But there was apparently a huge amount of disqualifiers for the phase 1 part of the trial. The participants for the trial were already picked before the conference. Aby BrentM30 - Huntington's Disease Support Center
Apparently the places that are actually doing the studies, wanted patients that they have known for a while and had a pretty steady history of their condition. Plus they needed people that were for the most part pre symptomatic, that are able to communicate finite changes in how they are feeling. That way if there is a dramatic situation that comes up, it will be much easier to notice changes froby BrentM30 - Huntington's Disease Support Center
At the HDSA conference, there were a lot of people asking about the trial. Basically the ISIS reps that were there, let everyone know that the study has already started. It is taking place in both Europe and Canada. All of the participants are already picked out, and it is less than 40 people that will be in the study. There is no way for anyone to become eligible the next phase (if it is safe),by BrentM30 - Huntington's Disease Support Center
At the conference, one of the younger two doctors that are working with HD on a daily basis was asked that question during a Q/A session. They said that all of the incidence and prevalence numbers are very much incorrect and that they have current medical data that proves it. But when he brought this to the people in the government that provides them funding, and basically they were told that havby BrentM30 - Huntington's Disease Support Center
I think that a lot of people question if the heads of HDSA should be making that large of a salary . I'm not saying that they should or shouldn't be getting paid that much money. I have no idea what they do on a daily, or weekly basis. I think people that are struggling with HD everyday get frustrated that they see HDSA pull in 7.1 million in 2014. And they pay six people close to a million in saby BrentM30 - Huntington's Disease Support Center
On page 8, it states that Louise Vetter is making roughly $236,000 from HDSA . Plus an additional $40,000 from other sources. The only six people that are paid by HDSA are making $894,000 and an additional $115,000 from other sources.by BrentM30 - Huntington's Disease Support Center
HDSA is adamant that they are only focusing on research. I wonder why there isn't a secondary charity that it's sole focus is helping the people and families that are actually dealing with HD on a daily basis. At least it would give individual donors a choice of where they want their funds to go.by BrentM30 - Huntington's Disease Support Center
I was at this latest convention. And I found it pretty hilarious when Vetter announced in one of her speeches that because of all of our amazing fundraising, that they have been able to get the HDSA's debt down from $4 million to somewhere around $200,000.00. It make me feel so good inside to do a bunch of charity work, to pay the HDSA's bills.by BrentM30 - Huntington's Disease Support Center
As a sibling that is positive such as yourself, you have a duty to tell your brother. If you don't tell him and he finds out down the road after he gets married and has a kid(s), it will cause a guilt rift that neither of you may be able to fix. A lot of parents will tell you not to worry until there is something to worry about. This is mostly driven by guilt. But they don't realize that all theby BrentM30 - Huntington's Disease Support Center
I live in Minnesota. Where are you from?by BrentM30 - Huntington's Disease Support Center
I know how you feel. I can barely afford to live off of SSD. also it sucks that I am the only one I know that doesnt work anymore, so it is quite boring.by BrentM30 - Huntington's Disease Support Center
I have a question for you since we are on opposite sides of this issue. I am a 31yo single guy and I'm having a hard time figuring out whether it is better to be right up front with telling someone you want to date about HD? I kind of feel like like if you wait until there are solid feelings between you and that person, and you dont tell them right away, that might cause some serious problems. Iby BrentM30 - Huntington's Disease Support Center
as a person with HD i can say that when i become more of a burden than a participant to my family, that is the when its over of course i am a single guy with no kids that depend on me so it might be a bit deferent for me. I will let family take care of me point. but when the negatives over run the positives, im ok with leavingby BrentM30 - Huntington's Disease Support Center
sounds like Dystonia.by BrentM30 - Huntington's Disease Support Center
In some cases based on your income and stuff it is best not to marry someone with HD. If he needs to go on medicare eventually and a nursing home, there are all kinds of ways that the government will try and get your money or your home to recoup their loses. You should definitely talk with lawyer that specializes in elder care law. They will help you protect your money and assetsby BrentM30 - Huntington's Disease Support Center
its not too bad. they just want to make sure that you are emotionally stable enough for the test results. usually they will ask your reasons for wanting to get tested. and if you have though of all the ramifications. its usually pretty basic stuff. just be firm with your answers and you should be good. and dont get tested for someone else's benefit, only for yourselfby BrentM30 - Huntington's Disease Support Center
they will try protein rich drinks and supplements. but in some cases that isn't enough and the patient will eventually pass away. I know that I have chosen not to get a feeding tube when my HD gets to that point. I have put that in my health care directiveby BrentM30 - Huntington's Disease Support Center
that neuro needs to get over their learning disability it seemsby BrentM30 - Huntington's Disease Support Center
Honestly I think it is the HD persons lack of being able to respond as quickly to a fall as someone without it. they say the if you do fall, the best way to not get injured is to not tense up and try to catch your body weight. I know when I was in the Army and doing drills which included catching your weight, they would tell us not relax and roll rather than sticking out our arms and such to catcby BrentM30 - Huntington's Disease Support Center
Do whatever you feel you need to do. You can't worry about what others think. At times they are thinking of themselves in the testing situation and are trying protect their self as well from having to deal with it. No one should influence your decision. by the way I am 31 HD pos with a 45 CAG. I found out last summerby BrentM30 - Huntington's Disease Support Center
exactly how I feel BJby BrentM30 - Huntington's Disease Support Center
done, and doneby BrentM30 - Huntington's Disease Support Center
I can totally feel ya. I am taking the route of letting everyone know what I have and what I am going through and let the chips fall where they may. I know some friends and family won't be able to deal with it, so I don't want them around. Also I have found that some people that I haven't even talked to in years have stepped up to support me. Granted it might not be profession help but more likeby BrentM30 - Huntington's Disease Support Center
if anyone needs help with applying let me know. my mother has an entire binder of all the info we had to send in to get approved. look forward to getting denied the first time around. It seems that they do that for every case. apparently there is a ton of fraud happening with the recession. plus the government usually sucks. lolby BrentM30 - Huntington's Disease Support Center
there really isn't a certain medication that will help. there are things like video games focused at mind and memory that can help. Keeping the brain busy seems to be the best way to maintain memory. Learning new ways to remember, such as when meeting a new person, repeat their name several times over and over(not in front of them) helps me. I used to think reading helped but I've gotten to the pby BrentM30 - Huntington's Disease Support Center
hang in there. suicide is not a good thing. sorry for you and your familyby BrentM30 - Huntington's Disease Support Center
Thanks everyoneby BrentM30 - Huntington's Disease Support Center
I think I just wet myself. lolby BrentM30 - Huntington's Disease Support Center
what the hell? what happened?by BrentM30 - Huntington's Disease Support Center