WE DO STILL NEED TO SEND THESE IN..... THEY ARE STILL ASKING... THANK YOU!!!!by skmf12 - Huntington's Disease Support Center
ohhhhh trial results....... scary......by skmf12 - Huntington's Disease Support Center
OH HOW CURRENT... CONGRATULATIONS ON MAKING IT INTO THIS CENTURY... oh nows a good time to update the smileys to something less... ummmm last millenium...by skmf12 - Huntington's Disease Support Center
LOOK IF YOU ARE A FAMILY MEMBER OF A PHD, YOU COULD DO THIS FOR THEM.... its not easy for our phd's to do some of these things... BUT WE HAVE NO EXCUSE TO NOT FIGHT FOR THIS FOR THEM... even if you dont have a phd that needs money and help, THINK ABOUT THOSE THAT DONT HAVE A WAY TO SUPPORT THEMSELVES... STEVEI, CAN YOU TELL THEM WHY THIS IMPORTANT TO ALL? ------------------------------by skmf12 - Huntington's Disease Support Center
HI STEVEI, I recieved one of those action alerts for the HD PARITY ACT IN MY email. i sent my letter, but we should make it easy for everyone to sign.. i guess senator kirsten gillibrand (ny) is introducing the bill, but they need more original cosponsors by march 16th... i cant reprint the letter cause it would go to my representatives, could you get a copy from jane kogan at HDSA, andby skmf12 - Huntington's Disease Support Center
DEAR LORRAINE, SORRY MY DEAR, BUT THAT POST MADE ME ROTFLMAO!!!! that was so funny, i would enjoy you as a writer, i could imagine the whole scenario performed on SATURDAY NIGHT LIVE... a book with hilarious anecdotes, from people with life threatening diseases, about just how singularly under-informed. doctors can be....by skmf12 - Huntington's Disease Support Center
HEY STEVEI, I JUST GOT MY LETTER, AND I IMMEDIATELY SENT MY LETTER TO MY REPRESENTATIVE.... this is just so depressing.... i know the news says obama has said his new budget was going to hurt, and there would be major cutbacks.... word is its a campaign necessity as he is losing ground on the ecconomy, for the next electiion, its unbelievable, but there it is... my friend who spends aloby skmf12 - Huntington's Disease Support Center
THIS WAS A GOOD THREAD.... another gem....by skmf12 - Huntington's Disease Support Center
OK IT WASNT ME THIS TIME.... i ummmmm... i'm not that smart.... :-)by skmf12 - Huntington's Disease Support Center
"Scientists Find Genes for Longer Life By Seth Fiegerman Forget all the folklore and movies, the real fountain of youth isn?t a place, but a cluster of genes. Dutch scientists recently announced the discovery of a group of genes that may be the secret to a longer life. These genes actually prevent other ?diseased genes? from acting up and deteriorating the body. The finding is basedby skmf12 - Huntington's Disease Support Center
CBREEZE, MOTHER TO MOTHER.... PROBABLY.... you know what you feel, and instinct is rarely wrong... kids may very well have pasted the 'wierd' tag on him.... know that, all us mothers know what your talking about.... its so devestating... ok lets not wallow... WHATS A SOLUTION? difficult... how far out are you willing to go? if you could home school him would you? hows his grades? couldby skmf12 - Huntington's Disease Support Center
MARSHA, MUCH LOVE AND RESPECT... glad you have steve and the kids, who love you, at this difficult time...by skmf12 - Huntington's Disease Support Center
sorry marsha, about your mom... it is not good news, but you will get thru it... thanks for your time.by skmf12 - Huntington's Disease Support Center
HEY MARSHA, BRETT left this article on his facebook page, have you heard of this? "Washington, Nov 28: Scientists have made a novel discovery in the fight against Huntington's disease (HD). HD is an incurable progressive neurodegenerative genetic disorder which affects motor coordination and leads to cognitive decline and dementia. The disease pathology stems from a mutatioby skmf12 - Huntington's Disease Support Center
HOPING EVERYONE KNOWS YOUR NOT ALONE ON THANKSGIVING.... WE HAVE EACH OTHER.... ;-) MUCH LOVE..... AND MUCH CHEER.....by skmf12 - Huntington's Disease Support Center
BARB, I just read this and i'm shocked.... i didnt know your husband was sick, i didnt expect to hear this news... i know how you leaned on him, its just so devestating to have this happen.... i care about you, and i hope you can find lots of strength... its not comforting to say this barb, but we all end up in the same place sooner or later. so i guess people are finally reunited somewhere soby skmf12 - Huntington's Disease Support Center
OH CRAP.... I DONT WANT TO HURT YOUR FEELINGS ERIC... BUT YOUR HURTING MINE... its a painful thing watching our loved ones go thru this, and im looking for support... i hate that i feelthis way...by skmf12 - Huntington's Disease Support Center
well i have an agenda.... i want to know eric, if you have a actual position on this website... and heres why, you pm'd me some months back when you and i got into it, and said you worked for marsha and stevei... i'm not imagining this right? well here is the thing, im not shy, i will say whats on my mind... i think you are one of the most critical persons i've ever heard of phd's. i dontby skmf12 - Huntington's Disease Support Center
marsha and stevei, i love that you rarely get involved in our posts except to clarify basic issues that pertain to you as admin or moderator, or to discuss hd from your professional standpoint, and to leave the 'occasional' helpful and caring observation or salutation...no agenda, no coloring the waters with your personal opinions... in the interest of full disclosure... who exactly is iby skmf12 - Huntington's Disease Support Center
well fortunatly for all of us, some phd's do have some loving partners, and family, if they didnt, than none of us would be here talking about it right? im reminded of the nazi's and how they wanted to wipe phd's and their families off the face of the planet... we've come a long way... today a person with huntingtons disease, can have some semblance of a normal life without fear of censor...by skmf12 - Huntington's Disease Support Center
alice.... love you... many phd's seem to get married, so i guess, there is love. and those who choose to spend their lives with phd's regardless of what the future will bring.... thats love for ya... have hope...by skmf12 - Huntington's Disease Support Center
wow.. bad barb!!... try and get your hd under control and not be so HARSH!!!! psssst... maybe that lady doesnt know that hd makes you blunt sometimes.....squeeeeeeeby skmf12 - Huntington's Disease Support Center
ok well im with jsr here, it makes me feel p*%$ed off too... you'ld think i've been here long enough to be understanding... but apparently not... some caregivers on here, have young phd's as well, and to hear this kind of talk, is ummm, well offputting... moon, he doesnt need your 'pity', what the hell? he's not a freak, he's just ill. to say you just feel guilty so you thought you'ldby skmf12 - Huntington's Disease Support Center
wow thanks... all good answers... you know, i guess its true that, we can have alot to do with just how bad, or just how painful this whole experience will be... and ERIC, thank you so much for those words, its very encouraging to put it into perspective like you did... it was so 'relieving' to hear someone say basically,'its not our mothers disease', we've come along way, and with knowledgeby skmf12 - Huntington's Disease Support Center
oh yeah: 6- IS THERE SUCH A THING AS A MILD CASE OF HUNTINGTONS? 7- WHAT EXACTLY HAPPENS WITH PHD'S VISION, WHAT CAN THEY SEE OR NOT SEE?by skmf12 - Huntington's Disease Support Center
@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@ MARSHA, STEVEI, ERIC.... 1- DO ALL PHD'S GET ALL THE SYMPTOMS ATTRIBUTED TO HUNTINGTONS? OR JUST SOME OF THEM? 2- DO ALL PHD'S GET MENTAL ISSUES? 3- DO ALL PHD'S GET CHOREA? 4- DO ALL PHD'S GET THE SAME DEGREE OF HUNTINGTONS AS EVERYONE ELSE? 5- DOES EVERY PHD HAVE THE SAME EXACT LIFE EXPECTANCY AS EVERY OTHER PHD? ok... this an openby skmf12 - Huntington's Disease Support Center
jsr, well look, people say those seemingly ridiculous statements, with good reason, believe it or not. its a fear of adding to another persons load. i mean, would you say, "yeah man that sucks, your screwed"... i mean lets be honest, if people are already feeling over the edge, which one of us wants to push them over? and as a family member of a phd, this can also be true, if they arby skmf12 - Huntington's Disease Support Center
BARB.... WHAT THE HELL? DID I MISS IT? HERES TO YOU ON YOUR VERY OWN DAY.... LU YA ) .........by skmf12 - Huntington's Disease Support Center
WILL, ITS YOUR BIRTHDAY! COOL.... ITS TIME FOR A PARTY..... WILL HOPE THIS IS A FUN DAY FOR YOU... :-Dby skmf12 - Huntington's Disease Support Center
solvey, i would suggest you get a book on 'grieving'... you will find it most helpful...it will probably make alot of sense to you,,, take care...by skmf12 - Huntington's Disease Support Center