Hi Colleen,

I am new at this group experience also - we can sort of learn things together. I
am 32 years old and have in the past couple of months learned at the doctors
office with my mother that she has HD. My grandmother died of it several years
ago in a nursing home of neglect. But that is a story for another day. I didn't
have the experience first hand of her HD since I was young and lived many many
states away from her - she lived on the east coast - i lived on the west coast
with my mother. Upon her death I persuaded my mother to move back home and have
been here since. I am the oldest of 4 (to my mother) and obviously at risk. I
have been married for 13 years and must admit this disease makes you take a
serious look at your own personal life. I have 2 children (6, 9) and have a
difficult time thinking of the future - to get tested positive could mean I may
have medical coverage issues in the future and may never get more life
insurance, etc. and to be tested negative - I have the guilt
of knowing that my siblings may not be so lucky. If you ever need to talk - I
have AOL instant messenger - yeplisaagain - where you can try to reach me for
immediate talk. In my case my mother has a husband (my step-father so I don't
have to take care of her completely) although I seem to (as the oldest gain many
more responsiblilties) - I have always looked out for my mom financially when
able, etc. so I have the burden of making sure she has medical coverage and to
learn as much about this disease as possible and oh yeah pray for a cure.....
I just want you to know their are others out there to talk to! I don't know that
much - I am just starting to learn what I can! We can learn together.
Lisa

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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