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Re: Would like to communicate with other members

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  • susie_que_56
    Hi Toni, Sounds as though things are a bit touchy.... Well it can be with HD in the family. My husband (Frank) had HD and passed away in Jan of 2000. I have 2
    Message 1 of 5 , Aug 14, 2002
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      Hi Toni,

      Sounds as though things are a bit touchy.... Well it can be with HD
      in the family. My husband (Frank) had HD and passed away in Jan of
      2000. I have 2 sons At Risk now 23 and 12 y/o.

      Your daughter in law is one scared lady I am betting. She has a 50%
      chance of inheriting the disease and passing it on to her children.
      Now just because she has 2 sisters with symptoms means she is neither
      pos or neg until symptoms start. Taking the blood test puts undue
      amout of stress on a person, and the family as well. This is a
      decision she HAS to make for herself... put yourself in her shoes.
      Would you want to know you can die like the rest of your family as HD
      is not a pretty picture disease. There is no way to say you will go
      through this at any certin time, because HD will take them through a
      hell all it own. Now some are lucky enough to keep their minds and
      personalities but some are not. Think about that too. No I am not
      high or mighty I have seen how HD works through many people. Frank
      had 10 brothers and sisters and out of the 11 kids 5 have or had HD.
      With some we don't know about yet. They all were different! Read up
      on the disease them make a decision on weather you want to know if
      your timebomb is about to go off.

      She won't talk about it might be because she was told not to. Isn't
      that something? Most kids were taught not to say a word as Daddy or
      Mommy is sick and we don't want people to know they are crazy or act
      different. SOme are ashamed to say the word HD as you have to explain
      so much and by the time you are done they have lost intrest. And when
      the person gets the disease they will lose all friends and family.
      What a pretty out look huh? And believe me this happens so much of
      the time as the disease progresses the family gets the brunt of it
      and can not take it so they either leave or divorce. Mostly this can
      happen because they don't know why they are acting this way, it is
      not them it is the HD making them act this way. Took me years to
      figure that one out. I was a basket case until I got on line and made
      friends that nderstood what I was going through. Now I spend my time
      trying to help so they won't go through what we did as a family.

      I feel for your daughter in law as it is not easy and to test has to
      be her idea weather the family likes it or not. It is her life you
      are messing with. Does she want to know? What does she feel deep
      inside? You don't know because she won't talk.... well read up on HD
      then talk to her. Let her know she isn't alone out there. And be a
      strong enough family to stand beside her not behind. I know the
      decision she has to make as I am haveing to make it for my 12 y/o and
      it is not a decision I take lightly. What happens if I test him now
      but his repeat is around 40 and he knows it will start when he is
      older. Will he try suside as many do or will he be able to come to
      terms with it all? That is something I won't know unless I make him
      do it. And will protocal let me?????? All these questions but no
      solid answers is the HD world I have lived in far to long.

      Susie

      Email: susie_que_56@...
      Home Page: http://www.geocities.com/susie_que_56/angelwhispers51.htm
      Yahoo Group: http://groups.yahoo.com/group/huntingtonsatrisk/
    • Toni Surman
      Hi Susie, thanks for your response. I am touchy about this but only because my son and his immediate family were not told the truth. They had been together
      Message 2 of 5 , Aug 14, 2002
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        Hi Susie, thanks for your response. I am touchy about this but only because my son and his immediate family were not told the truth. They had been together for 10 yrs before they married and that is a long time to "come clean" with something that has an effect on us all. Her two sisters have the disease ..the middle sister is in later stages..don't forget I have known this family for 18 yrs. ..I was told the middle one had OCD..I found out about the HD from a neighbor..and there happened to be a Dateline show on soon after their wedding showing HD and I almost died..I called my son immediately and asked him if that is what her dad died of [and his mother] and he said yes.my DIL had turned on the show and asked him to watch it..that is when he found out also..that is water under the bridge now.they are both . seeing a counselor and they are going to go for invitro which costs $10,000 for the first attempt. That money has to be borrowed from my older son..This is what I am soooo touchy about...it's not like they dated for a yr..it was 12 yrs...plenty of time for SOMEONE TO COME CLEAN.. I care about her very much..she does not want the test..we now talk about it..since they can't hide it anymore with her 2 sisters in such severe stages..the middle sister was only married for 6 months when she got very sick, and her husband was not warned either...he is very angry and has to keep 3 jobs to pay the bills. He goes to counseling also..now my son is starting to see signs in my DIL...she has had 4 car accidents in 1 1/2 yrs..he is very worried..that is when I said to him he better think very hard about having a child..then he will have a new house, a baby and a sick wife..I would have to move in with them to help..my heart aches for you with losing your husband and now the worry of your children..there are children involved with my DIL also..the older sister [who is diagnosed in the first stages..she had to quit her job and cannot drive anymore] has 2 beautiful daughters ..aged 10 and 12..I hope someone at sometime soon will take them to counseling so they can begin to understand...I appreciate you listening to my deepest thoughts...sincerely, Toni
        susie_que_56 wrote:Hi Toni,

        Sounds as though things are a bit touchy.... Well it can be with HD
        in the family. My husband (Frank) had HD and passed away in Jan of
        2000. I have 2 sons At Risk now 23 and 12 y/o.

        Your daughter in law is one scared lady I am betting. She has a 50%
        chance of inheriting the disease and passing it on to her children.
        Now just because she has 2 sisters with symptoms means she is neither
        pos or neg until symptoms start. Taking the blood test puts undue
        amout of stress on a person, and the family as well. This is a
        decision she HAS to make for herself... put yourself in her shoes.
        Would you want to know you can die like the rest of your family as HD
        is not a pretty picture disease. There is no way to say you will go
        through this at any certin time, because HD will take them through a
        hell all it own. Now some are lucky enough to keep their minds and
        personalities but some are not. Think about that too. No I am not
        high or mighty I have seen how HD works through many people. Frank
        had 10 brothers and sisters and out of the 11 kids 5 have or had HD.
        With some we don't know about yet. They all were different! Read up
        on the disease them make a decision on weather you want to know if
        your timebomb is about to go off.

        She won't talk about it might be because she was told not to. Isn't
        that something? Most kids were taught not to say a word as Daddy or
        Mommy is sick and we don't want people to know they are crazy or act
        different. SOme are ashamed to say the word HD as you have to explain
        so much and by the time you are done they have lost intrest. And when
        the person gets the disease they will lose all friends and family.
        What a pretty out look huh? And believe me this happens so much of
        the time as the disease progresses the family gets the brunt of it
        and can not take it so they either leave or divorce. Mostly this can
        happen because they don't know why they are acting this way, it is
        not them it is the HD making them act this way. Took me years to
        figure that one out. I was a basket case until I got on line and made
        friends that nderstood what I was going through. Now I spend my time
        trying to help so they won't go through what we did as a family.

        I feel for your daughter in law as it is not easy and to test has to
        be her idea weather the family likes it or not. It is her life you
        are messing with. Does she want to know? What does she feel deep
        inside? You don't know because she won't talk.... well read up on HD
        then talk to her. Let her know she isn't alone out there. And be a
        strong enough family to stand beside her not behind. I know the
        decision she has to make as I am haveing to make it for my 12 y/o and
        it is not a decision I take lightly. What happens if I test him now
        but his repeat is around 40 and he knows it will start when he is
        older. Will he try suside as many do or will he be able to come to
        terms with it all? That is something I won't know unless I make him
        do it. And will protocal let me?????? All these questions but no
        solid answers is the HD world I have lived in far to long.

        Susie

        Email: susie_que_56@...
        Home Page: http://www.geocities.com/susie_que_56/angelwhispers51.htm
        Yahoo Group: http://groups.yahoo.com/group/huntingtonsatrisk/



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      • susie_que_56
        You are welcome Toni. You know she should of said something before they got married to be honest. I feel as soon as she knew it was very serious something
        Message 3 of 5 , Aug 15, 2002
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          You are welcome Toni. You know she should of said something before
          they got married to be honest. I feel as soon as she knew it was very
          serious something should of been said about HD in the family. Now
          that is my opinion only as everyone else has their own. I knew about
          HD but that was it. No one talked about it as it was a secret...
          shhhhhhhh kinda thing. I would of married Frank any way because I
          loved him for who he was not for what he might get. And at 18 what do
          we know about life? I also see it in my niece who has a different
          problem facing her. She loves him and all I can do is say look really
          hard before you have to walk in my shoes some day. And that is all I
          can do for her... well that and be there for her and listen should
          she need a shoulder. So now all we can do is set back be there and
          hope for the best.

          Susie

          Email: susie_que_56@y...
          Home Page: http://www.geocities.com/susie_que_56/angelwhispers51.htm
          Yahoo Group: http://groups.yahoo.com/group/huntingtonsatrisk/
        • Toni Surman
          Hi Susie..life s a B-----, huh? You can t help who you fall in love with, but I feel so sorry for the children. I know my son probably would have married her
          Message 4 of 5 , Aug 15, 2002
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            Hi Susie..life's a B-----, huh? You can't help who you fall in love with, but I feel so sorry for the children. I know my son probably would have married her anyway, but not to be told something that could affect your entire life and family's life is not going into a relationship honestly..and I find it very difficult to be around her mother who did know the truth..I can't look her in the eye..so hiding things causes more problems than being honest..hopefully your children won't be touched by this horrible disease..when we are at family get togethers I watch my son's sister in law and it breaks my heart..she tries to talk and her head is shaking, and when she tries to eat it is a struggle for her to find her mouth!!..she was very popular in school, but I always thought it strange she could never keep a job..now I know why!!..you know what they say "the truth shall set you free"..I am a believer in that ...I run an Avon business and I have a rather large business and that's one of the reasons I am successful..my honesty..[that's what my clients tell me anyway]..I have to run..peace to you and yours, Toni
            susie_que_56 wrote:You are welcome Toni. You know she should of said something before
            they got married to be honest. I feel as soon as she knew it was very
            serious something should of been said about HD in the family. Now
            that is my opinion only as everyone else has their own. I knew about
            HD but that was it. No one talked about it as it was a secret...
            shhhhhhhh kinda thing. I would of married Frank any way because I
            loved him for who he was not for what he might get. And at 18 what do
            we know about life? I also see it in my niece who has a different
            problem facing her. She loves him and all I can do is say look really
            hard before you have to walk in my shoes some day. And that is all I
            can do for her... well that and be there for her and listen should
            she need a shoulder. So now all we can do is set back be there and
            hope for the best.

            Susie

            Email: susie_que_56@y...
            Home Page: http://www.geocities.com/susie_que_56/angelwhispers51.htm
            Yahoo Group: http://groups.yahoo.com/group/huntingtonsatrisk/






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            To unsubscribe from this group, send an email to:
            huntingtonsdiseasewehate-unsubscribe@yahoogroups.com



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