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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