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RE: [Huntington's Disease The Monster]

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  • Erin Rogers
    happy holidays have not been coresponding fo awhile,,,,still living single in marion more than one relationship has gone sour due to my diagonsis---i am not
    Message 1 of 12 , Dec 21, 2004
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      happy holidays have not been coresponding fo awhile,,,,still living single in marion more than one relationship has gone sour due to my diagonsis---i am not dateless (: had to hang up my biking gloves-last year , my hands are still my major problem----i baby sit every once in awhile---I LOVE KIDS-but when it takes ove 20 mins. to change a diaper well it is humbling
      since i hung up my biking gloves--i traded them in for running shoes--i joke to my fellow runners-- i am running for my life!! i am running for my health (: i also volunteer at the local nature center, specializing in pr-school programs. still no steady job offers): i am okay now! i am as heathy and beautiful as i can be! i love you all erin r,,,,"E"

      Divya Savania <DivyaSavania2@...> wrote:
      HELLO My husband has HD and it is devestating our life. We too have good
      days but at the moment they are seeming bad .We try to stay hopeful but it
      is so difficult wtching someone so lovely go through this. We are struggling
      as this monster invades our life and burrows deeper
      >From: "wigglywooathome" <wigglywooathome@...>
      >Reply-To: huntingtonsdiseasethemonster@yahoogroups.com
      >To: huntingtonsdiseasethemonster@yahoogroups.com
      >Subject: [Huntington's Disease The Monster] Re: I'm New, please help me
      >Date: Tue, 23 Nov 2004 17:58:45 -0000
      >
      >
      >--- In huntingtonsdiseasethemonster@yahoogroups.com, "rpb22000"
      >HELLO, My partner of 4 years decided to tell me that he is at risk
      >of the disease last week. I'm 25 now and he is 23...I love him to
      >bits but wish that he could have let me know a little sooner..He
      >won't talk about it at all. I managed to get him to talk to me for
      >about an hour, but he gave me very few details. His DAD is starting
      >to show the symptoms, but instead of being straight up and honest
      >with me, I was left to beleive he was just Odd, when acutually he is
      >unwell. He has talked about being tested, but he is scared of the
      >outcome., so much so that he shouts and screams at me when I bring
      >up the subject. I love him to bits and I've told him that it
      >wouldn't matter if he did have this awful monster, but I think that
      >he is simply thinking it might go away if he ignores it. I feel
      >terrible because I don't know how to handle this. I don't want to
      >push him into being tested if that's not what he wants. Does anyone
      >have any advice..is it better to know for sure, or is it better just
      >to live and hope? I'm so confused. If anyone could help I would be
      >soo grateful.
      >
      >
      ><rpb22000@y...> wrote:
      > > Hello
      > >
      > > I know the changes that you see in your family are very real and
      > > upsetting, your family is really close to you and you are so
      > > powerless to control the disease so if you are worried about the
      > > children thier are test you can have then take. My brother did and
      >he
      > > is negative. So he decided to have some children, which they are
      > > really heathly. So stick in their and make the most of your time
      >that
      > > you have know and learn to cry sometime because it is ok my father
      > > had hungtington and my sister also has the hd disease so sometimes
      > > the changes happen fast other times over a long period of time my
      > > father died 15 months ago. he had HD for a total of fiveteen
      >years.
      > > My sister was dianose with huntington at her age of 25 years old
      >she
      > > died two weeks ago at the age of 41 so the changes are going to be
      > > different in each case. I had one huntington worker say to me and
      >my
      > > mother that my sister was going to make a complete recovery, I
      >felt
      > > like sending her my sisters memorial. So be very wary about the
      > > information that you have recieved. They will be missed so take
      >care
      > > for know rpb
      > >
      > > --- In huntingtonsdiseasethemonster@y..., ginnie grimm
      > > <ggmama2002@y...> wrote:
      > > > Hi anyone who will answer. I do not have HD, my
      > > > husband of 16 years does, as does his mom,aunt and his
      > > > deceased grandmother. Our 3 beautiful sons are at
      > > > risk. It is so strange how my husband has changed. It
      > > > is scary. The most ironic thing is he is so talented
      > > > and handsome. The perfect dad. I get angry at the
      > > > waste of this precious mans life and I lay in fear for
      > > > my wonderful kids. We have good days and bad. Some
      > > > days Scott, my hubby, is himself. Other days he is the
      > > > HD monster. But we are pulling through. We found a
      > > > center that treats and studies this disease. I have
      > > > attended seminars and we will participate as a couple
      > > > in some studies to help find a cure. We are excited
      > > > about that-what if the scientist and doctors find a
      > > > cure during our study?? Wouldn't that be great?? I
      > > > read so much on internet about exciting things going
      > > > on so keep the faith everybody. Maybe it will all work
      > > > out.
      > > > --- Erin Rogers <eburpsalot@y...> wrote:
      > > > >
      > > > > Betsyjp---
      > > > > I aam certainly glad you replyed! If I may ask,
      > > > > what made you decide to get tesetd if you weren't
      > > > > showing signs? BLESS YOU FOR BEING TESTED!!!
      > > > > How old were you when yyou got tested? I have
      > > > > chosen to call Cedar Rapids my home--it is ssuch a
      > > > > wannabe small town! I pretty was raised in Iowa
      > > > > City--still have alot of friends --family--- I
      > > > > attend an awesome support group once a month at the
      > > > > University. I have been in the area since I was19(:
      > > > > Had a good idea to have a "TIME OUT'' to figure out
      > > > > WHO I am--I choose the quad cities---and now I am
      > > > > back enjoying my independnt single life while I can.
      > > > > It is thee whole future of hd and what will do too
      > > > > me next i try not to think about it it is still
      > > > > there in the back of my mind (: PEACE erin
      > > > > betsyjp wrote:Hi Erin,
      > > > >
      > > > > My name is Betsy and I tested positive in January.
      > > > > I don't have any
      > > > > symptoms. My mom is in the end stages of hd. Some
      > > > > of the things you
      > > > > said really struck a chord within me. Everyone
      > > > > wonders why I'm ok
      > > > > with my hd status. I think that the thing that
      > > > > keeps me from
      > > > > depression is not having symptoms. I also have good
      > > > > and bad days.
      > > > > I'm sorry to hear about your struggles. I keep
      > > > > praying that they
      > > > > will find a cure very soon. What a coincidence, my
      > > > > relatives live in
      > > > > Cedar Rapids!
      > > > >
      > > > > Take care, Betsy
      > > > >
      > > > > --- In huntingtonsdiseasethemonster@y..., Erin
      > > > > Rogers
      > > > > <eburpsalot@y...> wrote:
      > > > > >
      > > > > > GOOD AFTERNOON LISA,
      > > > > > THANK YOU FOR REPLYING! MY BABY SISTER WAS A
      > > > > TODDLER WHEN SHE WAS
      > > > > DIAGONOSED. ME? I WAS DIAGNOSED LAST YEAR AFTER
      > > > > SEVERAL OTHER
      > > > > DIAGNOSES WERE PROVEN WRONG IT IS BASICALLY IN MY
      > > > > HANDS, RIGHT NOW,
      > > > > I HAVE NOT PUT A CURLING IRON TO MY HEAD FOR OVER A
      > > > > YEAR. I HAVE
      > > > > SCARS ON MY BACK FROM WHEN MY HANDS FAIL PUTTING A
      > > > > BRA ON! UNLOCKING
      > > > > AND LOCKING CAR DOORS, TYPING IS BOTHERING ME --I
      > > > > NOTICED THINGS
      > > > > WEREN'T RIGHT WHEN MY I WENT TO CHANGE MY NEPHEWS
      > > > > DIAPER AND MY HANDS
      > > > > FROZE UP!
      > > > > > I DO NOT WANT PITY FOR THIS DISEASE--I WANT
      > > > > UNDERSTANDING,LIKE
      > > > > ANYTHING ELSE IN ONES LIFE YOU HAVE GOOD DAYS AND
      > > > > YOU HAVE YOUR SHARE
      > > > > OF BAD DAYS TOO! WHEN I HAVE A BAD DAY, I LOOK AT
      > > > > THE SUN AAND
      > > > > CURSE AT MY GRANDFATHER FOR GIVIVV ME THIS
      > > > > DISEASE--I EAT A BUNCH OF
      > > > > HOT TAMALES,,,,,,,ON GOOD DAYS I LOOK AT THE SUN
      > > > > PERFERABLY FROM MY
      > > > > BICYCLE AND THANK MY DAD FOR GIVING ME THE STRENGTH
      > > > > TO BE WHO I AM
      > > > > AND TO EAT LOTS OF HOT TAMALES(:
      > > > > > I LIVE IN CEDAR RAPIDS, IOWA. I HAVE BEEN JOB
      > > > > BOUNCING FOR THE
      > > > > LAST YEAR AND HALF, I WORK UNTIL MY HANDS CAN NOT
      > > > > TAKE ANYMORE. I AM
      > > > > A SINGLE MOM OF A 12 YEAR OLD HEALTHY CAT, KITTY.
      > > > > > THANK YOU AGAIN FOR TAKING THE TIME TO REPLY! MY
      > > > > PRAYERS ARE WITH
      > > > > YOU-- E
      > > > > > lilmama312000
      > > > > > wrote:hi E.
      > > > > >
      > > > > > i am sorry to hear about your diagnosis i have
      > > > > been diagnosed for 4
      > > > > > years i just signed up for this group becuase i
      > > > > too feel like
      > > > > > huntingtons is a damn monster.
      > > > > > i am 32 years old and i am going through many
      > > > > symptoms of
      > > > > huntingtons
      > > > > > too!! i know what you are going through and if
      > > > > you need to talk
      > > > > let
      > > > > > me know. i am very clumsy myslef and the
      > > > > frustartion of losing my
      > > > > > mind and my body is making me so mad sometimes!!
      > > > > >
      > > > > > where do you live?? how old was your sister when
      > > > > she started
      > > > > having
      > > > > > signs and what kinds of signs are you having at
      > > > > this point.
      > > > > >
      > > > > > my prayers are with you
      > > > > >
      > > > > > Lisa
      > > > > > -- In huntingtonsdiseasethemonster@y...,
      > > > > "eburpsalot"
      > > > > > <eburpsalot@y...> wrote:
      > > > > > > How does anyone deal with this "death sentence?'
      > > > > > > I was diagonsed w/ HD in May of 2001
      > > > > > > My father lost his fight to HD in the spring of
      > > > > 1999
      > > > > > > My baby sister lost her fight in febuary of 2002
      > > > > > > my grandfather, a month later.
      > > > > > > I ride my bike as much as my body can
      > > > > take,,thanking my dad for
      > > > > the
      > > > > > > sun on my face,,,,
      > > > > > > of course, I have more alot of anger towards
      > > > > this disease, i
      > > > > pedal
      > > > > > > harder and harder on my bike when i am in one of
      > > > > these moods.
      > > > > > > I do not want to be forgotten
      > > > > > > I am a 29 year old KLUTZ (:
      > > > > > > I just signed a 2 year modeling contract,,,where
      > > > > will i be in 2
      > > > > > > years?
      > > > > > > dead ?alive? Will I still be enjoying my bike
      > > > > rides?
      > > > > > > I can't even walk in heels as its (;
      > > > > > > I am a self proclaimed jock/ tomboy americas
      > > > > sweetheart
      > > > > > > NOT the modeling type so why am I trying the
      > > > > modeling thing?
      > > > > > > Because like ANYTHING in life you have to TRY
      > > > > > >
      > > > > > > my name is erin---call me E please
      > > > > >
      > > > > >
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      > > > > >
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