Patty, I am so sorry to hear you were turned down today, and I hope you have lots of support around you now. I do not receive SSI myself, and my life if very difficult day to day as a result. What this means is I can relate to how you may feel. Yesterday I cancelled a doctors appointment for later this week due to not having any cash for the co-pay. ( I am too embarrassed to go in there withoby Brett T - Huntington's Disease Support Center
Hang in there, Brent. I like the idea of the punching bag. Fight this. It is not you it's the HD. Forgive yourself too for having this anger. It is not your fault you have it. -Brett Tby Brett T - Huntington's Disease Support Center
"I am more concerned with the information presented to her." Me too. How you translate, "This mutation needs a cure, as it is horrible in every way" to say, one's life with it is horrible all the time, beats me? I don't know what else to tell you, Kid. You think there is a very good possibility everyone with HD is abusive, and this is just who they really are. I don'tby Brett T - Huntington's Disease Support Center
Laura, I am not going, but Virginia is. Make sure you get in touch with her if you are going. ( This is Virginia from the NE HDSA office). I hope you can get something out of it. Brett Tby Brett T - Huntington's Disease Support Center
Eric, I understood what the original post said. Thanks for your help, but I'll still post whatever I like, if it's alright with you. I stand by every word I wrote. You are free to disagree with it. Just remember you are the same guy who wrote to me saying, "I would not say that everyone with HD is abusive... on the other hand.. that it is a real possibility." I disagree with tby Brett T - Huntington's Disease Support Center
HD is a disease. The gene that goes along with it is mutated. This mutation needs a cure, as it is horrible in every way. -Brett Tby Brett T - Huntington's Disease Support Center
I just got this email and thought I would share it, even though it is last minute, in case any of you wanted to go and were close by already. -Brett T Dear Virginia, Great speaking with you. I love your energy and all of the connections we have in common not the least of which is Bill Johnston from the San Diego Chargers whose wife is suffering with Huntington?s Disease. I reaby Brett T - Huntington's Disease Support Center
Danny, have you had a chance to read Phil's stuff? I will be thinking of you guys - hope it works out right away. -Brettby Brett T - Huntington's Disease Support Center
This guy is great, Steve. Thanks for putting it up. Brett Tby Brett T - Huntington's Disease Support Center
SteveI, Would you be willing to add a link Nacho's blog on the HDAC and Lighthouse sites ( if there is not one now )? Brett Tby Brett T - Huntington's Disease Support Center
done.by Brett T - Huntington's Disease Support Center
Eve, There are 4 studies going around me ( again, Boston ) they are: - HART (4 month ACR16 study) - HORIZON (8 month Dimebon study) - Crest-E (3 year Creatine study) - 2Care (5 year CoQ10 study) The one I was talking about was Crest-E (3 year Creatine study). I would also like to mention you do not have to do this study for three years. After ( I think 18 months ) they ask yoby Brett T - Huntington's Disease Support Center
DD, I just wanted to say the folks around me ( Boston ) running a Creatine trial have it set up so you would only be on the placebo for the fist six months, then you are guaranteed to be given the real thing ( for free and a very pure form - for years if you want it ) Also, there is very little, if anything, that they say you can not do/eat while taking it. In addition, you do benefit fby Brett T - Huntington's Disease Support Center
I was just wondering if anyone here was going to attend Arlo Guthrie's 10th Annual Garbage Trail Walk to Massacree HD on 5/16/10 in Stockbridge/Great Barrington MA? I am going to be heading out for it, and believe it will be a fun time. Here is the Web Site in case some of you have not heard of it, and live somewhat close by. If you do not read any posts from me after this date, conby Brett T - Huntington's Disease Support Center
Thanks Kelly.by Brett T - Huntington's Disease Support Center
For me I did not care which ( I was looking to help the one that needed the most humans ) but I did have concern about commitment, and whether I would be able to comply with a long term trial. Luckily the great people in Boston, running mine, explained ( before I even brought it up ) that there was to be no guilt. Period. ( Should I fail to remember to take the drug, or if I felt at any timeby Brett T - Huntington's Disease Support Center
"Makes ya feel for people who live with Tourette's people." Makes me feel for people who have HD. Brett Tby Brett T - Huntington's Disease Support Center
Again, thanks for letting me how you did. Good work. LadyC is at it again this week if any of you want to play along. Here is a link to what your challange will be. -Brett Tby Brett T - Huntington's Disease Support Center
Hi Greeneyes, I was just told by a Neuro to watch my potassium ( eat more) but I do not remember if it had something to do with taking creatine more than HD. Does he take creatine? -Brett T PS I am sorry you had to deal with the EMT not knowing what HD is right off.by Brett T - Huntington's Disease Support Center
That is some good work, MRO. I am glad you are reporting in. Lauralu, last week it would have cost me. This week's rules did not say anything say about the orange whips. Plus, considering for the 2nd week in a row, there were no whinnie the pooh incidences involving myself and the MRI tube so, I figured I had them coming - but don't tell LadyC about the onion rings. -Brett Tby Brett T - Huntington's Disease Support Center
Good work Gordon and thanks again for joining in. I think you know it meant a lot to me. Also know you may blame any pain or discomfort you have on the Brits. Cleary this is their fault. Brett Tby Brett T - Huntington's Disease Support Center
I gotta say I did not mind easier either. I am working on a Silver too. Brett T PS This leaves plenty of Gold Medals out there if others want to grab them.by Brett T - Huntington's Disease Support Center
A good solid B, Sara. Not bad at all. I'm sorry to say my 1st semester GPA was not so strong. I was lucky to end up with a C. But this week I will do better ( for one I did not sign up for any of those early morning classes ) Thanks for letting me how you did. Brett Tby Brett T - Huntington's Disease Support Center
There has been a thread about coconut oil here that should not be too far back. Here it is Other than that I don't know anything about. As for where to give, I would keep it as local as possible. Maybe even find a family in your back yard who needs a hand up and donate directly to them. However, this may not be easy so, an alternative to me would be sponsoring someone in a fundraiser inby Brett T - Huntington's Disease Support Center
Hi Nancy, I am glad you are reaching out. Would you mind sharing which state you live in ( if it is the US ) and maybe people here can help you find better "local" care/resources. Right now your hands are more than full. I know I would be happy to do some research to find out what is in your back yard and help you locate a good social worker. Now that you are here you are not aloby Brett T - Huntington's Disease Support Center
Jimmy, I like your thinking, and would support the Pollard Pact. We just need Tim O to organize the troops. -Brett Tby Brett T - Huntington's Disease Support Center
Lauralu, "(For example Brent T, Brent M which, i used to confuse...." I don't think there is any "used to" going on here. I am only joking with you. Brett Tby Brett T - Huntington's Disease Support Center
Lauralu1212, I think, as written above, using your real, full name under your profile on this site is not helping keeping what you post here stay just here. Given how open and honest you are I would take Steve up on his offer (not that I'm not afraid to read whatever you have to say if you don't have to hold back at all I am very afraid ) Brett T PS Brent, if she gets mad atby Brett T - Huntington's Disease Support Center
Shar, My friend's angel Emily worked with this place to do just this. Please watch this short video about it. Emily was so brave for all of us. Brett Tby Brett T - Huntington's Disease Support Center
I will be once agian joining my friends from the UK in this effort. If you guys want to join in too I think it would be great. ************************* This week I would like us to focus on the three key elements of exercise, cardio, strength and stretching. There are three levels to this challenge, please pick a level and let us know what you are aiming for! The challenge will start on Mby Brett T - Huntington's Disease Support Center