Eric, i send love and hugs to you and your family. Suzanneby Suzanne - Huntington's Disease Support Center
hello Dutchygil, My brother Paul was in late stage HD, when they found he had lung cancer that was quite a large tumor. At that time, due to his failing health with HD, they did not recommend any kind of treatment. (my brother also did not want any, so that made it easier to make the decisions.) He lived for almost a year, passing away this past December. I think that if you talk with your doby Suzanne - Huntington's Disease Support Center
Oops! I thought being a subscriber that i had insider info! hahahha! I am reading other threads now, and see that this is already being discussed. Please ignore it then! i don't know how to change the subject line! Sorry, all!! Suzanneby Suzanne - Huntington's Disease Support Center
Hello All, I just read an article in the new Newsweek magazine. It mentions HD twice, and that is cool, but it does talk a lot about the hang ups research has to face while searching for a cure for a number of diseases... i just do not have a scientific mind. i honestly know that i do not have the intellect (nor can i spell, i think) to ask the questions that matter. I will try and get a linby Suzanne - Huntington's Disease Support Center
I wish i had been more patient with my siblings, i wish i could have risen above my one brother's anger and ability to get to me....I know that there were many instances that i had to be a pit-bull, but i should have shown more compassion and patience, instead of being hotheaded and expecting that it should go the way i thought it should go. It definitely made things worse, me being that way.by Suzanne - Huntington's Disease Support Center
Welcome, dd. All four of my HD positive siblings were diagnosed without taking blood. I have always wanted to know what their CAG counts were, because i think it would be interested to know, but the neuro i tested with said that if the patient is already symptomatic, no blood will be drawn when i asked him if it could be done after the fact. Eric is correct, that there is no proof that allby Suzanne - Huntington's Disease Support Center
my sister Karen used to repeat words, like "buzz-cut". It started one day when i came to the home to cut both my brothers hair, and i always gave them buzz-cuts. It got to the point that i don't think she realized she was saying it, and often substituted those words for others, like i would tell her i love her, and she would respond with buzz-cut, but spoken in the same kind of tone aby Suzanne - Huntington's Disease Support Center
I don't know if this is posted here yet or not, but since i just got it, thought i would share it. From: nancywexler@hdfoundation.org Sent: Wednesday, May 05, 2010 11:01 AM Subject: PLEASE WATCH - NBC Nightly News, Monday night, May 10 (subject to change)by Suzanne - Huntington's Disease Support Center
I went to see a surgeon last year for a bad mammo (its fine, no problems-just precaution in the end-which took three months to determine!) and the new hot surgeon at my local office was going through my questionaire (sp?) and saw the family history.... her first question? "Isn't that a man's disease?" i did a Reagan on her... (Exorcist move!) I then took a deep breath and explainedby Suzanne - Huntington's Disease Support Center
I have to say that my family has been way fortunate, in getting social security the first time around. And it was years ago now, that they did it. we have been fortunate all along with getting them that, and getting them to Laurel Lakes, and the care they have received. The hardest part was the social services part... and that had been a battle until February of this year... i am hoping that iby Suzanne - Huntington's Disease Support Center
We definitely need a more proactive approach, and assistance, with HD.... we need to ask how can we help, what can we do... I totally agree with that. It should always be about that. i remember back in 2001, Jim Pollard met my sister Carolynn for the first time. He wrote a paper about it, which is right here on this site. What he did that day, and what he has done countless times, is what weby Suzanne - Huntington's Disease Support Center
Please Eric, Let us know what you are saying. Talk to Jim Pollard, that is one thing... he does have a ton of info, and certainly has made me more aware of things. But either way, you do have to elaborate on this. We do an HD walk every year in Massachusetts, and i feel quite confident in it, but i get questioned all the time by people i have asked for donations from. I explain, i give the flby Suzanne - Huntington's Disease Support Center
Oops.... KNEW i needed an edit, and could not see it! I meant, that the HDAC does NOT lack in the personal touch. It is like family here.... that is what i meant! (what a dumbass...) Suzanneby Suzanne - Huntington's Disease Support Center
Hey Steve, the only thing that i can think that the HDSA is lacking is the very personal way that the HDAC is not. The HDSA website ( i confess, it has been a couple of months since i looked, and i am not looking now to see if it has changed) seems to be more based on the reasearch and fund raising, (necessary, but!) than the families' lives that we deal with as the day to day goes. It seemby Suzanne - Huntington's Disease Support Center
Someone i know well has been showing symptoms for a couple of years now. i am no doctor of course, but seeing some completely different behavior and thought processes from someone is when i would say that symptoms began. This person refuses to test, because they say they already know they have it, and yet refuses to do anything else about anything, if you know what i mean. When asking for adviby Suzanne - Huntington's Disease Support Center
Hello PhoebesMom, I have to say that my family has gone through the same thing. Some people will do it, some will not. I used to get angry at that, but i found that it just was wasting my time - it doesn't change anyone, but it does make you bitter. I was told by one of my brothers that it was my choice to be involved with my HD family, and to not expect it of him. It was that moment i reaby Suzanne - Huntington's Disease Support Center
when i tested in 1996, it was a pretty good process. Going through all of the appointments leading up to the results, i honestly did not know what the outcome would be, but i think they did an awesomes job taking care of me. i had other issues outside of the test itself - which from what i have heard, some people's results were delayed because of it - but my team never slowed down. They were oby Suzanne - Huntington's Disease Support Center
My eye!!! My eye!!!by Suzanne - Huntington's Disease Support Center
I am on Facebook... i thought it was a question about facebook? Hahaha! I am on there as my name, Suzanne Muller...befriend me if you wish! you can send me messages through there as well as any email address, when you post a private message. I do not check it every day, and do not post that i am, like, cooking dinner and tired... Hahahha! Or mowing the mud in my yard... I think Facebook isby Suzanne - Huntington's Disease Support Center
Amen... i saw that show too.... much to say about the strength of the spirit, regardless of the strenght of the body. Hugs, Suzanneby Suzanne - Huntington's Disease Support Center
not to send multiple posts, but i meant to say that i often write it out in word, especially if i know it is sensative material, and some never get posted here after i think it through!by Suzanne - Huntington's Disease Support Center
I thought i was losing my mind for a minute, and i have to chuckle... i had no clue what Eric was talking about in the beginning, and now i see... I knew that there had to be something there! Okay, i think PM's should stay, as they have been helpful to me. I also have not had any problems with others, so that is even better. I am very thankful to Marsha and Steve for all of their hard work,by Suzanne - Huntington's Disease Support Center
Thank you Maggie... those CD's, at least many of them, have and are being shared by her friends at the home. What a blessing they were!! it is interesting to think about though... I think of an angel as,not the biblical definition, but based on what that person meant to me. Of course, there are degrees of angels...Brother John was a...well....tough angel, and Karen was once tough, but thenby Suzanne - Huntington's Disease Support Center
You are not alone.... many of us here have felt the same things, thought the same things. I don't have answers for you, but i will tell you that your post may help others, as you say in your last sentence, and at the very least, take some comfort in that. With that knowledge, that will also help YOU. My niece is also in similiar circumstances - every twitch is a symptom, every ache, everyby Suzanne - Huntington's Disease Support Center
So many important topics, and it all boils down to the support and understanding that we get here and hardly anywhere else. Thank you Steve and Marsha, for providing and perfecting this awesome avenue that we can all say we live on, for better or worse. I am live here, and i always will, and i am thankful that i am not alone. Some times its hard, and sometimes its not. We are all a family, aby Suzanne - Huntington's Disease Support Center
Dusty, you ARE awesome. I am so glad i finally got to meet you. Will you be coming again for the Walk this year? Gonna hug you again, if you are! Hugs, Suzanneby Suzanne - Huntington's Disease Support Center
This is a very good thread. I have had several problems in the past (10 years) about support from family members and the lack of it. I had a very long drawn out battle with my only negative HD brother about 10 years ago, and he finally told me that my level of involvement with our family was totally CHOICE for me. I was thinking that he was the oldest son without HD, and should assume some respby Suzanne - Huntington's Disease Support Center
Dusty, so sorry to hear that! I hope that all comes out well for all. Suzanneby Suzanne - Huntington's Disease Support Center
Thank you all so very much. It DOES help, to know i have all of you here, and you all know what this feels like, and i am not alone in it. Thank you so very much. You all are just awesome. Love to you, Suzanneby Suzanne - Huntington's Disease Support Center
Just wanted to say that my dear sister Karen passed away last night. She was such a strong hearted person, so dedicated to her family and her friends old and new, and she will not be forgotten. She was such a strong force, and i will miss her terribly.... Love to all, Suzanneby Suzanne - Huntington's Disease Support Center