MARSHA, THIS WAS ALL DISCUSSED HERE BEFORE LUCKILY... so when i saw it, i took it with a grain of salt... i'm with just1moreperson, i'm happy they are persueing so many avenues avidly. on the other hand, i wont set myself or anyone else up for disappointment, when i hear the word here, i will know i have legitimate information, and should that day ever come, i will pop the bubbly anby skmf12 - Huntington's Disease Support Center
O M G MRS PAT !!!!, THANK YOU... and yes, we really are dear little things arent we? LOL... at least i keep telling myself i am.... te he he... HAPPY MOTHERSDAY TO YOU TOO...by skmf12 - Huntington's Disease Support Center
LADIES: HAPPY MOMS DAY TO US ALL!!!! listen, we are all sisters, we are family, we share secret heartaches... dedicated today to my 'HD' sisters... (with much love) from bill withers: Sometimes in our lives we all have pain We all have sorrow But if we are wise We know that there's always tomorrow Lean on me, when you're not strong And I'll be your friend I'll help you carryby skmf12 - Huntington's Disease Support Center
wow.....VERY IMPRESSIVE... yesterday i commented the same as you all did, and as usual at the end, i opted to ignore my comment... but... its what you've all said... pretty much we're on our own, and we learn to get tough and learn survival skills. but i must tell you, it makes me so proud of all you guys! sink or swim? you all swam... congrats to all the fighters.. luv you all....by skmf12 - Huntington's Disease Support Center
well stevei, just to add something to what kag2000 is saying here, how bout a 'Peoples Referral Guide'... maybe we could have a board where people could list doctors. clinic, services, or help lines, even health food stores, that have been either 'helpful', or 'useful' to hd persons in our own state and towns. so than i could go on it, and look at: san francisco bay area, and see if aby skmf12 - Huntington's Disease Support Center
ofcourse Marsha, you have good points. and i'm not discounting them. but sometimes i feel that we are a little callous. we are talking about the very people who inhabit this blog, and frankly where would so many be without the love of someone... would we for instance tell Barbs husband to think twice about staying with her? NO... Barb is incredibly sweet and i'm quite sure he treasures her.by skmf12 - Huntington's Disease Support Center
ok well now i've got to step in and give a dissenting opinion here.... many people have stayed with their hd love, and were happy to take the journey... not everyone quantifies their life by all the 'happy and successful standards of everyone else... people are fulfilled in different ways and so no one can tell you, that you would be wasting your life... is there reason to feel bitter for aby skmf12 - Huntington's Disease Support Center
i dont know debonaire, all those things you describe, sound like situations any woman could have with any man.... seriously... relationships!!!!! on the other hand, hd will insinuate itself into any relationship whether the person is exibiting symptoms or not. its about the decaying effects of 'the prospect' of having it... a young man may want and yes even need a relationship, but realizby skmf12 - Huntington's Disease Support Center
eric, this place is sneaky...lol.. it makes you want to divulge secret feelings locked up for years... its easy to come here and feel comfortable enough to work thru complicated memories... dont ask... i love you guys, thanks for giving us this place.by skmf12 - Huntington's Disease Support Center
well when i was with my phd husband, sex was good, and when it wasnt, everything else wasnt good either, and i left... i was very young than. relationships and sex, in non-HD relationships, often end up the same way... either way, its sad when it happens... its not just an HD problem...by skmf12 - Huntington's Disease Support Center
ALICE... YOU ROCK!!!!! that is the coolest question i've heard, since i've been on this site....seriously cool... girl if you feel up to sharing time with someone, and if someone wants to share time with you, ENJOY! I know you wont hold your health restrictions back, so that means, its a decision made by two consenting adults, so what could be better than that....cant wait to hearby skmf12 - Huntington's Disease Support Center
ALWAYS HOPE, GIRL, DO WHATEVER YOU FEEL IS RIGHT.... HONESTLY, WE DONT KNOW THE ANSWERS ANYMORE THAN YOU DO... and, there is no right or wrong here, there is only you and your boyfriend. alot of pontificating goes on here, some of us appear to be rather bitter of our life... WHATEVER... let that be a lesson to you, if you take on this relationship, dont let us hear you whining aboutby skmf12 - Huntington's Disease Support Center
O M G !!!!! I DIDNT KNOW THAT... thanks for sharing, i've never seen it, and now i will make sure that i never do...by skmf12 - Huntington's Disease Support Center
by skmf12by skmf12 - Huntington's Disease Support Center
ERIC, i care about you but... your obsessing over JL. leave it to the moderators to be blog cop, it belongs to them. let it go, if someone gets kicked because of their own behavior, so be it, but i dont want to feel like there are people here that go tattle incessantly, and control the blog... stevei if you dont like what i just said... PM me... MUAHAHAHA but dont make it publicby skmf12 - Huntington's Disease Support Center
JL, here in the san francisco bay area, we have the same thing. they have little buses that are free, and you just call and tell them a time and they and pick you up, no cost. its cool!!!! i dont use it, but its a good service, if you see one on your street, they let anyone get on actually...by skmf12 - Huntington's Disease Support Center
WHOOOO WHOOOOO !!!!!!!!!by skmf12 - Huntington's Disease Support Center
UMMMMMM.... WHAT THE HELL ARE YOU GOING ON ABOUT THIS TIME? YOU NEED TO STOP TALKING ABOUT ME BEHIND MY BACK AND JUST COME OUT TO THE WHOLE GROUP AND ...... OOOOH....UMMMMM, SO......were you talking about, me?... cause i thought..... AAAHH SO,... STEVEI...... DISREGARD ......by skmf12 - Huntington's Disease Support Center
HEY JCARROL42, thanks for explainging the dosage reason, i could not wrap my head around the whole smaller dosage verses larger dosage thing, but you explained it so well!!!! BARB, thanks as always for being there with answers when anyone asks, luv u!!!!by skmf12 - Huntington's Disease Support Center
OK SO QUESTION THAN... what are the side effects? barb, nila, anyone...by skmf12 - Huntington's Disease Support Center
thanks you guys... its so good to have you... i want you to know i love you... thanks...by skmf12 - Huntington's Disease Support Center
FINGERS CROSSED MARSHA... its our time.... thanks for all your work... honestly, thank you...by skmf12 - Huntington's Disease Support Center
oh thanks barb!!!! i should tell my phd to try it. its a delicate subject, i will wait for an opportunity... thanks barb, its worth a try.by skmf12 - Huntington's Disease Support Center
oh... so Marsha, if it turns out a positive result, than we would be waiting another two or three years for the us trials?by skmf12 - Huntington's Disease Support Center
but you dont have alzheimer barb... so did u just talk your doctor into it? i know how much you like it, and anyone here can see how well you do on it... just trying to figure out why more doctors have not offered it for hd patients, do they offer it at COE's?by skmf12 - Huntington's Disease Support Center
OK SO MARSHA, i cant pretend to understand this well, but i get bits and pieces... it sounds wonderful. i mean its just a matter of finding out the right dosage? we could have been taking it all along? but why are some people like Barb able to use memantine if its not perscribed for hd? Barb, were you perscribed it? ok maybe some of the people now taking memantine, could talk about tby skmf12 - Huntington's Disease Support Center
O M G !!!! seriously? wow that ACR16 trial was begining to sound like a myth, i expected to see the LOCKNESS MONSTER before seeing the acr16 trial come to a conclusion.... what if the results arent promising? oh man, we need some good news... should i say a prayer?by skmf12 - Huntington's Disease Support Center
thank you.... very interesting.... ofcourse like everything else, waiting to see if it EVER, becomes reality...by skmf12 - Huntington's Disease Support Center
ummm ok, not that i know anything, but following in the vein that everyone else is going, maybe you should show up at your senator or one of your representatives office, and tell them that you girls are at your wits end, and cant take her in much less find someone who can... demand that they assist you as your representative, and push them to become aware of the situation. one thing i do know,by skmf12 - Huntington's Disease Support Center
bridget, so funny! thanks for the cheer...by skmf12 - Huntington's Disease Support Center