Wow,
Thank you all so much for your responses, you all are so understanding and open.
That really means alot. The only people i can talk to about all this are my
brother & sister. My husband and Dad try to understand, but as you all know its
very hard for them to understand the true impact of this whole situation. I also
think sometimes my husband doenst really want to believe that i have a chance of
having this, he always tells me that i dont have it and i will be ok. Well even
if so this is very difficult going through this with my mom and possibly my
siblings. I just wonder how i could even deal with life if my brother, sister
and i all had it. I am the youngest (25) My sister is 35 and my brother is 34.
It would just be a domino effect and there would be no room for a normal life. I
used to want children but now i dont, which sucks because my husband does. There
would be no way i would have children if i had the disease, but i dont want to
get tested so i just wont have them. As you
can all see this is very complicated. I just feel that if i tested possitive
right now it would move a big rain cloud over my head. i would be constantly
judging myself and picking myself apart and i feel it would bring out signs that
may not even really be there yet. Even since I found out my Mom has this, my
brother, sister and i all think we have the signs. It is almost a physological
thing. (or maybe not). At this time my Mom lives in Virginia with my brother and
soon to be his exwife, she is moving out here cause she is getting to the stage
where she can not live with family. Well her sisters went out there to surprise
her and my Mom did not even recognize them. It took her a few minutes. I found
this out today and it really made me feel depressed. I just cant believe that
she may not know who i am eventually. I go back and forth with the whole guilt
thing. I sometimes feel like ok maybe i can have my Mom live with me, she is my
Mom for crying out loud, but then again I havnt
even been married for a year and i want to start a life with my husband.
I also wonder if there is anyone out there that had a parent with this disease
and none of the children got it. Probably not, but i am just curious. My Mom is
not even on any medication right now, when she comes out here i would like to
get her on something, if you all have any refrences as to what works, please let
me know.
This feels very theriputic to type all of this and know that you all care and
understand. THANK YOU!!!
Doris i may take you up on a phone call sometime, i wont call collect though :)
You all are so sweet. Thank you so much

Colleen

dori derricotte <dori_34@...> wrote:
Dear Colleen,
My name is Dori, Huntington's disease is in my family
too, my grandfather and my great-uncle died of HD, and when my I was 8 yrs old
my mom died of HD. I have 5 sisters and 1 brother, 4 of my sister have HD and
all are in nursing homes, their in the last stages of HD. my brother refuses to
get tested, I have been tested and I don't have the disease. I have 7 neices and
nephews at risk of getting HD. My only sister that doesn't have HD, has a
different mother, in other words shes my half sister. How old is your mom? how
is she doing? how old are you and your brothers and sisters? I want you to know
if you need someone to talk to you can call me collect 24/7 at 240-383-0710 or
301-260-0710. I'm 40 now, and I have a son who is 14 yrs old. Im so thankful to
know he will never get this horrible disease. When you don't have the bad gene
you can't pass it on. All families with HD in it are in someway all related.
Well, I just wanted you to know your not alone, there
are people out there that care about you, and what to be your friend. Take care,
and know you and your familys are always in my prayers. Your friend always, dori

Colleen Hutt <carebear22_00@...> wrote:
Hi everyone,
I am new here and i am a little confused on how this works. I basically recieve
an email every time you all reply to eachother. Is there a chat room? Or is this
all?
Also, my mother has H.D. and myself, brother, and sister have not been tested
and choose not too at this time. I guess we are holding on to any little shred
of hope that we dont have it. I am curious though how close we are to finding a
cure, if anyone has said when they approximatly think there will be one. Is
there anything we can do to help, such as fund raisers? I am not sure how to
even organize something like that, but i feel i have to try to do something,
this is just a crazy disease that has ruined our lives. I want to keep faith
that they will find something soon.
Also my question to everyone: Do you feel torn about how to go on with your
lives right now? I am only 25 and recently married, I am trying to have a normal
life as possible and not let this whole thing get me down. My Mom will be coming
back out to Denver to live in assisted living next month and i know i will feel
that burden of always going to pick her up and do everything. I am not trying to
sound selfish, its just that i guess i feel some resentment that she can not act
like my mother and that i have to be the Mom. If you all know what i mean. I
just feel ripped off. Just wondering if any of you feel the same??

Also i always have this nagging voice in the back of my head that i could very
well have this and it gets me down, so i want to try and live as normal as
possible right now, which is hard to do considering. I also tend to beat myself
up when i forget things and blame it on H.D. My father trys to tell me that
everyone forgets things and it doesnt mean anything. I know i am babbeling right
now, but i was just curious if anyone feels the same?

I have read all of your stories and it scares the hell out of me and whats to
become of my future, but you are all brave and very strong people whether you
realize it or not

Thanks for the support

Colleen

shabs96@... wrote:
hey vivki,
I know the feeling. My uncle acts the same way. Ever since my father, his
younger brother, was put into a nursing home, my uncle has been drinking
non-stop. I haven't seen him sober in over 3 years now. Though my uncle was
never
tested, I can see the signs of HD in his movements, and I believe that is why he
drinks so much. Perhaps he sees it too but is too afraid of knowing the truth.
HD took my father's life this past june, and since then, the family has net
been the same. I too am at risk and have no yet been tested...I have an
appointment in September to meet with the Huntington's doctor. I know your pain.
Good
luck, and no matter what, keep on smiling. -Shannon


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