This is a little off topic, but I thought I would add it now for those who may be thinking of applying. I chose not to up 'til now, and have been working well passed the time I should have. As a result I have ruined my reputation, created a lot of addition stress in my life (which I can tell you does not help my HD) beaten the hell out of my self esteem, and increased my depression. Far more thanby Brett T - Huntington's Disease Support Center
jl, thanks for writing back. I personally had doubts about going that route too, but wanted to hear what others thought.. as I tend not to want help to begin with ( even if I need it ). What you say makes sense to me, and in my case it would take a while to see a net gain after paying one. indigo, I forgot all about Phil's article. I am glad you brought it up. Phil has even personally offereby Brett T - Huntington's Disease Support Center
Laura, did you obtain an attorney at the beginning of this? And what do others think of getting one to help out? Will it speed things up? ( I understand some will charge you only if it goes through, and they will take it out of what you get.) Further thoughts on this would be a help to me. Thanks, Brett Tby Brett T - Huntington's Disease Support Center
I think there is a difference between telling someone there is hope for treatment down the road, and telling someone their current health is what it is not. If this is the case, that is wrong, but to withhold a positive opinion because someone believes this message will be misconstrued... at the very least, should be done on a case by case basis, if at all. I for one could use all the hope I canby Brett T - Huntington's Disease Support Center
I am glad to hear this jl. I have tremendous difficulty staying on long, drawn out tasks ( that are harder than they need to be ) In truth, the importance of how badly I may need to complete them, for my own benefit, does not get factored in one bit when deciding to throw in the towel. It's not right, but it is to a large extent who I am right now... and it sucks to remember who I was. I F&aby Brett T - Huntington's Disease Support Center
Judy, Please don't consider yourself to be a quitter, and stay safe. If the doctor you are seeing now can not find the right med(s) for your husband ( w/ the understanding he will take them ) or agrees a hospital stay is needed before someone in your family gets hurt or he gets arrested, I too think you/he needs a new doctor. IMO you should never have to stretch the truth, you just needby Brett T - Huntington's Disease Support Center
It was a joke, Eric. Just sticking up for us less intelligent, uncompassionate, occasional Rush listeners.by Brett T - Huntington's Disease Support Center
Would an example of that compassion be making brain power cracks on a HD site? Brett Tby Brett T - Huntington's Disease Support Center
Hi, Blondie I'm 41 year old father of 2 at risk kids who has HD ( living in the States ). I hope you can find some other families who can directly relate to what you are going through. The JHD aspect of the disease breaks my heart the most. I have begun a local campaign to create awareness for both HD and JHD. Recently I sent out some videos about both to my friends, and asked them to pass themby Brett T - Huntington's Disease Support Center
Thanks you Jeff. The way you put it allows me to understand it, and lets me tell her where to go for "good" info. Dusty helped me on this too, so I want to say thanks to her again, as well. Brett Tby Brett T - Huntington's Disease Support Center
oh, thanks.. you are right. I am not a good speller, would say it's the HD, but could never do it. Instead of working at it I chose to remember a quote by Mark Twain.. "I feel sorry for people who only know how to spell words one way." Again, I do sincerely thank you for pointing this out, and I will fix it. Brett T UPDATE: I think I got it right this time, but you all mayby Brett T - Huntington's Disease Support Center
This is the third and final video I made. It is focused on JHD. Yesterday on the arrival of the some positive news, I asked my Internet friends to share a HD awareness video of their choice ( by pointing out several ) with everyone they knew in an effort to keep the momentum going. If you belong to a social network web site, and would like to do the same I would appreciate it. I know many of yoby Brett T - Huntington's Disease Support Center
I like the PM application as well - for the simple fact it allows one to thank someone for what they said w/out "bumping" your thread back to the top, when it does not need to be. Also, I have gotten to know some people here better as a result of doing this, which I am grateful for. Brett Tby Brett T - Huntington's Disease Support Center
Happy Anniversary to you both. Brett Tby Brett T - Huntington's Disease Support Center
I don't think so, it seems to be a lot like HD though. If they have it "bad" they don't live past their mid thirties. I also think it works the same way as HD does and their kids have a 50/50 shot of getting it too, and many of the symptoms seen to be close to ours. Thanks Matt, I think they found this out the hard way.by Brett T - Huntington's Disease Support Center
A friend of mine just told me she has MJD in her family. One of her relitives just few over to China for a stem cell transplant, but it did not seem to help. Does anyone here know of any good resourses for this disease? I ask b/c for some reason I think some here may know about this too. Feel free to PM me if you don't want to discuss this topic on the HDAC site. Thanks, Brett T PS I hby Brett T - Huntington's Disease Support Center
Thanks, Sara, and jl, I know, we all seem to have "more dogs than bones." Will, I appreciate your feed back too. For me it was pre GINA as well, and although my insurance would have paid for it too, my great concern was my kids who are on the same plan. The bottom line came down to if I wanted to protect them the best way I could, I needed to pay for it myself, and then if it cameby Brett T - Huntington's Disease Support Center
In response to something Will wrote, I was wondering if the cost of obtaining a generic test for HD was ever underwritten by drug companies looking to conduct clinical trials? It seems to me many ravished by HD do not have the economic means to shell out the money required to get tested, that I assume one would need to participate in said trial. Has anyone ever heard of such a program, or a nonprby Brett T - Huntington's Disease Support Center
Does this improve the use of muscles needed to swallow? Can it help prevent people from choking? Brett Tby Brett T - Huntington's Disease Support Center
...you know after posting my comments, referring to the cutting edge technology I use, I thought I better watch it or I might get kicked off the HDYA site.by Brett T - Huntington's Disease Support Center
I wish I was 2009, Matt. My pickup truck still has a tape deck in it, but it works out well b/c my "iPod" can play them too. OK it might be more of a Walkman than a iPod. (My truck really does have a tape player)by Brett T - Huntington's Disease Support Center
How many words/ letters can you fit on a button? I thinks something about HD and HD televisions could work well. Like, "I can't wait 'til HD only stands for a type of tv." or something like that.. may someone else could shorten this up, or put it better. Brett Tby Brett T - Huntington's Disease Support Center
If it's in the budget I would look into some DVD players you can take in the car, and/or getting some good books on tape/cd that you think everyone may enjoy. A good story can make the time fly by. I think it is great you are doing this and I hope you have warm weather. Also, most important, don't forget to pack your sense of humor. PS I will take the long way home all next week to try andby Brett T - Huntington's Disease Support Center
I would like to thank you, Rebecca for putting yourself out there, in so doing you help us all. Many will argue, that real hope is foolish, but throughout the world's history there has never been a shortage of people who say what can't be done. Please keep your hope burning strong, and take care of yourself. I see no reason why you should not have it. Also, know when I hear someone with HD is eby Brett T - Huntington's Disease Support Center
Sharon, Thank you very much for your kind words, but in truth I am that "gentleman" and those are my boys. Brett Tby Brett T - Huntington's Disease Support Center
Here is a video that shows the fears, feelings and hope of a man with HD who has 2 at risk kids. Brett Tby Brett T - Huntington's Disease Support Center
I will be sure to do so, just, both of you remember THIS pHD can be a little slow on the humor at times.by Brett T - Huntington's Disease Support Center
Stevei, if you would like me to take down the link here I would be happy to. Matt, as long as you are just linking to it on facebook and not uploading it I think you are safe, but I am not a lawyer. If both of you want to play it safe I know my friend will not mind, or be offended by that decision in the least. Brett Tby Brett T - Huntington's Disease Support Center
A friend of mine passed this along. Thought I would share. Brett Tby Brett T - Huntington's Disease Support Center
Keep up the good work, both on and off the stage, Trey. I greatly appreciate what you do. -Brett Tby Brett T - Huntington's Disease Support Center