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new to the news of HD

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  • kennethpaul24
    Hello, My name is Kenneth Latham and I live in Bham AL. I am 34 years old and just recently found my biological father in California. That was great news that
    Message 1 of 10 , Aug 1, 2004
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      Hello,

      My name is Kenneth Latham and I live in Bham AL. I am 34 years old
      and just recently found my biological father in California. That was
      great news that quickly turned bad when I found out that he has HD.
      His mom was one of 6 siblings who died with HD. His older brother and
      sister did as well. One of his sisters son's has just been diagnosed
      with it.

      I'm having my blood drawn this week to be sent to Texas for testing.
      If there is anyone in here who would like to share with me some of
      the symptoms that you fell like your having, I would be open and more
      than happy to share. ( either publically or private)

      I look forward to making friends with others here who understand what
      I'm going through.

      Kenneth
    • Tara Bintliff
      Hey, I just wanted to say.. you found a great place for support.. the people on here are amazing.. with all everyone is going through. theres so many out there
      Message 2 of 10 , Aug 2, 2004
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        Hey,

         

        I just wanted to say.. you found a great place for support.. the people on here are amazing.. with all everyone is going through… theres so many out there who are willing to help anyone in need… and answer questions best they can.

         

        I’m Tara, 24 and at risk.  Currently I live in Florida (since 2003), but I was born and raised in Ontario Canada.

        Untested at this point till my husband and I decide if we are going to have children… we have decided not to have any children if I test positive.. and to not have any while im untested.  But for now we don’t see a reason to know because I have no symptoms and we’re not ready for children.. (my depression comes from his kids and x wife!!)

         

        My mom has hd and is in early stages, her mother also has hd and is no longer capable of living alone… but does anyway.

        My mother has 4 siblings her 2 sisters tested negative, but her 2 brothers do not want to get tested.  

         

        My grandmothers hd has made her very mean grumpy and unhappy.  She is in denial that theres anything wrong with her… which is very common...

        My mother is totally opposite.. shes the most caring person you could meet… and shes very open to talking to people with hd.

         

        The first physical signs we could see on my mom were with her hands.. things like cutting small objects.. or pushing the wrong buttons on the cash register…

        The first signs anyone seen in my grandmother was depression.

         

        Feel free to message me anytime… I also have yahoo messenger u can find me on there as Tara1644

         

        -Tara

         

         

         

        -----Original Message-----
        From: kennethpaul24 [mailto:kennethpaul24@...]
        Sent
        :
        Monday, August 02, 2004 2:03 AM
        To: huntingtonsatrisk@yahoogroups.com
        Subject: [
        huntington's at risk] new to the news of HD

         

        Hello,

        My name is Kenneth Latham and I live in Bham AL. I am 34 years old
        and just recently found my biological father in California. That was
        great news that quickly turned bad when I found out that he has HD.
        His mom was one of 6 siblings who died with HD. His older brother and
        sister did as well. One of his sisters son's has just been diagnosed
        with it.

        I'm having my blood drawn this week to be sent to Texas for testing.
        If there is anyone in here who would like to share with me some of
        the symptoms that you fell like your having, I would be open and more
        than happy to share. ( either publically or private)

        I look forward to making friends with others here who understand what
        I'm going through.

        Kenneth



      • Sue Adams
        Hi Kenneth and welcome to HD At Risk Group. In this group you will find people with your At Risk status, caregivers, pHDs (persons with HD), People who have
        Message 3 of 10 , Aug 2, 2004
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          Hi Kenneth and welcome to HD At Risk Group. In this group you will find people with your At Risk status, caregivers, pHDs (persons with HD), People who have tested Neg, friends and family. I feel this is a wonderful HD Family as we do take post seriously and do our best to support each other. And please feel free to ask nay questions that you have!
           
          I was a caregiver to my pHD husband who passed away in 2000, and I have two at risk sons one 25 and 14 y/o. I live in a hick town in Missouri. My oldest son made up this Group and I have the privilege to moderate it. We do have live chats on Wednesdays at 7 PM Central time if you would like to join us. I will also post if I can not be there, but everyone is welcome to attend weather I am there or not.
           
          I do have a question for you though if you don't mind answering it.... Why when you found your biological father and found out he had HD and it was rampet through his family did you get tested? And how long did you wait between the time you found your Dad until you decided to test?
           
          BTW good luck in your testing process and please keep us posted on the waiting period and the results.
           
          Susie  "I'M BONA FIDE"
          Email: angelrose@...
          Yahoo Messenger ID: susie_que_56
          Yahoo Group: http://groups.yahoo.com/group/huntingtonsatrisk/
           
          A Friend is one who comes in when the whole world has gone out.
          Help Find A Cure For  HD...
        • kennethpaul24
          Thank you both,Tara and Sue, for your warm welcome. To answer your questions Sue, I could not imagine trying to live with the thought of possibly having the
          Message 4 of 10 , Aug 3, 2004
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            Thank you both,Tara and Sue, for your warm welcome. To answer your
            questions Sue, I could not imagine trying to live with the thought of
            possibly having the gene while waiting on the symptoms. Also, I have
            a 14 year old daughter. I did not want to risk her having kids
            without knowing about HD. I do not plan to tell her (if I have it)
            until she's 18. I found out about my father on May 18th this year and
            began my testing process the next week. I am having my blood drawn
            this Thursday.

            I have dealt with depression for about 7 years now. I have had
            compulsive behaviour for as long as I can remember. I have problems
            concentrating on projects at work.

            As far as physical symptoms, I have occasional jerks and twitches.
            But they usually only happen at night before I go to sleep. Either
            both of my arms or my legs will jerk as if I have been shocked. When
            I wait on it to happen, it won't. It only happens when I'm thinking
            of something else, then it happens out of no where.

            Two weeks ago, I was interviewing for a job, and I had 2 jerks at my
            mid section that alarmed me. I don't think it was noticable to the
            man I was speaking with, but it really concerns me.

            Of course, my hope is that these are not signs of HD and that I'm
            just paranoid. I would apreciate anyones thoughts or coments.

            Kenneth
            --- In huntingtonsatrisk@yahoogroups.com, "Sue Adams"
            <angelrose@c...> wrote:
            > Hi Kenneth and welcome to HD At Risk Group. In this group you will
            find people with your At Risk status, caregivers, pHDs (persons with
            HD), People who have tested Neg, friends and family. I feel this is a
            wonderful HD Family as we do take post seriously and do our best to
            support each other. And please feel free to ask nay questions that
            you have!
            >
            > I was a caregiver to my pHD husband who passed away in 2000, and I
            have two at risk sons one 25 and 14 y/o. I live in a hick town in
            Missouri. My oldest son made up this Group and I have the privilege
            to moderate it. We do have live chats on Wednesdays at 7 PM Central
            time if you would like to join us. I will also post if I can not be
            there, but everyone is welcome to attend weather I am there or not.
            >
            > I do have a question for you though if you don't mind answering
            it.... Why when you found your biological father and found out he had
            HD and it was rampet through his family did you get tested? And how
            long did you wait between the time you found your Dad until you
            decided to test?
            >
            > BTW good luck in your testing process and please keep us posted on
            the waiting period and the results.
            >
            > Susie "I'M BONA FIDE"
            > Email: angelrose@c...
            > Yahoo Messenger ID: susie_que_56
            > Yahoo Group: http://groups.yahoo.com/group/huntingtonsatrisk/
            >
            > A Friend is one who comes in when the whole world has gone out.
            > Help Find A Cure For HD...
          • Ian Douglas
            Hi Kenneth, My name is Ian Douglas, 56, HD Pos, Brisbane Australia. Welcome to the group. We are a friendly bunch of people and more than willing to share
            Message 5 of 10 , Aug 3, 2004
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              Hi Kenneth,
               
              My name is Ian Douglas, 56, HD Pos, Brisbane Australia.
               
              Welcome to the group. We are a friendly bunch of people and more than willing to share thoughts and help where we can.
              I lived all my life surrounded by HD and was certain I was Pos before I was tested in 2001.
              From the description of your symptoms, I would be very surprised if you did not test Positive, but if you do, it's not the end of the road. Life goes on, and remember we are here to help you as part of your new extended family.
               
              Regards, Ian Douglas (oonied)
               
              ----- Original Message -----
              Sent: Wednesday, August 04, 2004 12:17 AM
              Subject: Re: [huntington's at risk] new to the news of HD

              Thank you both,Tara and Sue, for your warm welcome. To answer your
              questions Sue, I could not imagine trying to live with the thought of
              possibly having the gene while waiting on the symptoms. Also, I have
              a 14 year old daughter. I did not want to risk her having kids
              without knowing about HD. I do not plan to tell her (if I have it)
              until she's 18. I found out about my father on May 18th this year and
              began my testing process the next week. I am having my blood drawn
              this Thursday.

              I have dealt with depression for about 7 years now. I have had
              compulsive behaviour for as long as I can remember. I have problems
              concentrating on projects at work. 

              As far as physical symptoms, I have occasional jerks and twitches.
              But they usually only happen at night before I go to sleep. Either
              both of my arms or my legs will jerk as if I have been shocked. When
              I wait on it to happen, it won't. It only happens when I'm thinking
              of something else, then it happens out of no where.

              Two weeks ago, I was interviewing for a job, and I had 2 jerks at my
              mid section that alarmed me. I don't think it was noticable to the
              man I was speaking with, but it really concerns me.

              Of course, my hope is that these are not signs of HD and that I'm
              just paranoid. I would apreciate anyones thoughts or coments.

              Kenneth

            • kennethpaul24
              Thanks Ian. Ilook forward to getting to know you all. ... than willing to share thoughts and help where we can. ... before I was tested in 2001. ... you did
              Message 6 of 10 , Aug 3, 2004
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                Thanks Ian. Ilook forward to getting to know you all.
                --- In huntingtonsatrisk@yahoogroups.com, "Ian Douglas"
                <idouglas@b...> wrote:
                > Hi Kenneth,
                >
                > My name is Ian Douglas, 56, HD Pos, Brisbane Australia.
                >
                > Welcome to the group. We are a friendly bunch of people and more
                than willing to share thoughts and help where we can.
                > I lived all my life surrounded by HD and was certain I was Pos
                before I was tested in 2001.
                > From the description of your symptoms, I would be very surprised if
                you did not test Positive, but if you do, it's not the end of the
                road. Life goes on, and remember we are here to help you as part of
                your new extended family.
                >
                > Regards, Ian Douglas (oonied)
                >
                > ----- Original Message -----
                > From: kennethpaul24
                > To: huntingtonsatrisk@yahoogroups.com
                > Sent: Wednesday, August 04, 2004 12:17 AM
                > Subject: Re: [huntington's at risk] new to the news of HD
                >
                >
                > Thank you both,Tara and Sue, for your warm welcome. To answer
                your
                > questions Sue, I could not imagine trying to live with the
                thought of
                > possibly having the gene while waiting on the symptoms. Also, I
                have
                > a 14 year old daughter. I did not want to risk her having kids
                > without knowing about HD. I do not plan to tell her (if I have it)
                > until she's 18. I found out about my father on May 18th this year
                and
                > began my testing process the next week. I am having my blood
                drawn
                > this Thursday.
                >
                > I have dealt with depression for about 7 years now. I have had
                > compulsive behaviour for as long as I can remember. I have
                problems
                > concentrating on projects at work.
                >
                > As far as physical symptoms, I have occasional jerks and
                twitches.
                > But they usually only happen at night before I go to sleep.
                Either
                > both of my arms or my legs will jerk as if I have been shocked.
                When
                > I wait on it to happen, it won't. It only happens when I'm
                thinking
                > of something else, then it happens out of no where.
                >
                > Two weeks ago, I was interviewing for a job, and I had 2 jerks at
                my
                > mid section that alarmed me. I don't think it was noticable to
                the
                > man I was speaking with, but it really concerns me.
                >
                > Of course, my hope is that these are not signs of HD and that I'm
                > just paranoid. I would apreciate anyones thoughts or coments.
                >
                > Kenneth
              • nelson1344
                Hi Kenneth, welcome aboard. You are a brave soul to undertake the test so soon after learning about your father. But, then again, maybe facing it quickly
                Message 7 of 10 , Aug 3, 2004
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                  Hi Kenneth, welcome aboard. You are a brave soul to undertake "the
                  test" so soon after learning about your father. But, then again,
                  maybe facing it quickly is the way to go. I'm of the untested sort,
                  so far. Three immediate family members have had HD and lost. As of
                  now, no other family members have it.
                  I do not think occasional leg jerks or stomache spasms are HD. Try to
                  spare yourself the torment of examining every movement. The stress
                  can make them seem worse than they are. And...I think...make them
                  seem more frequent. And, by the way...we're in Bham AL too.
                  Best wishes for you with your results. Give us an update when you get
                  them.
                  Rachel












                  --- In huntingtonsatrisk@yahoogroups.com, "kennethpaul24"
                  <kennethpaul24@y...> wrote:
                  > Hello,
                  >
                  > My name is Kenneth Latham and I live in Bham AL. I am 34 years old
                  > and just recently found my biological father in California. That was
                  > great news that quickly turned bad when I found out that he has HD.
                  > His mom was one of 6 siblings who died with HD. His older brother and
                  > sister did as well. One of his sisters son's has just been diagnosed
                  > with it.
                  >
                  > I'm having my blood drawn this week to be sent to Texas for testing.
                  > If there is anyone in here who would like to share with me some of
                  > the symptoms that you fell like your having, I would be open and more
                  > than happy to share. ( either publically or private)
                  >
                  > I look forward to making friends with others here who understand what
                  > I'm going through.
                  >
                  > Kenneth
                • Kelly Goodwill
                  On Aug 3, 2004, at 9:13 PM, nelson1344 wrote: Hi Kennith, My name is Kelly. I am 18 and my mother has HD. I have two younger siblings and they havn t been
                  Message 8 of 10 , Aug 3, 2004
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                    On Aug 3, 2004, at 9:13 PM, nelson1344 wrote:
                    Hi Kennith, My name is Kelly. I am 18 and my mother has HD. I have two
                    younger siblings and they havn't been tested (too young).I also just
                    got tested. I was tested negitive and I am hoping the same goes for
                    you. It's hard, expectally the waiting part. You have found a great
                    sopport group here. either was we are all here to help you through
                    this.

                    >
                    >
                    >
                    >
                    >
                    >
                    >
                    >
                    >
                    >
                    >
                  • Tara Bintliff
                    Im going to have to agree with Sue here Kenneth. There is an amazing support group for youth aged 9-29. where she could meet so many people in the same
                    Message 9 of 10 , Aug 4, 2004
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                      Im going to have to agree with Sue here Kenneth…

                       

                      There is an amazing support group for youth aged 9-29… where she could meet so many people in the same situation as her.. she can talk… and have so many people who will be there for her no matter what.

                       

                      They are all very open about everything.. and will answer any questions.

                       

                      They have been amazing support for myself.. through everything… I got to meet a bunch of them in June at the HDSA annual convention.. everyone I met is now my extended family.. and it was like I had known them my whole lives.

                       

                      She doesn’t have to feel she’s alone.. and we wont let her…

                       

                      -Tara

                       

                       

                       

                      -----Original Message-----
                      From: Sue Adams [mailto:angelrose@...]
                      Sent
                      : Wednesday, August 04, 2004 2:58 PM
                      To: huntingtonsatrisk@yahoogroups.com
                      Subject: Re: [huntington's at risk] new to the news of HD

                       

                      You are most welcome Kenneth.

                       

                      "I have dealt with depression for about 7 years now. I have had compulsive behaviour for as long as I can remember. I have problems concentrating on projects at work."

                      To be honest this also sounds like ADHD and I know the two are symptoms running side by side, but just a thought. Now the twitches might be something and could be just you and your body relaxing after a long hard day. We never know 100% why we jump and twitch at night. And I also know just how scary and thought provoking it can be when there is a disease like this in the family.  And some people have to know their status!

                       

                      Now let me dig into your brain some more about telling your 14 year old daughter...... This is a subject I feel strongly about but I will also let you make up your own mind. Just throwing in some suggestions and reasons why OK?I would not wait until she is 18 to tell her. How did you feel when you just found out at your age? Were you not worried for your daughters sake as well? After you test and to be honest you really need to let her know you are testing for it. You never know where your best support can come from. Kids are not blind any more they KNOW when something is up. If you keep this a secret they will feel it and feed on this huge secret you have been keeping. Then in 4 years you pop this reality at her and say I waited until you were old enough to handle it. Meanwhile her life has went on and now she has to reconsider life all over again. How do you know she hasn't planned her life to get married have kids, or heaven forbid an accident happens and she is pregnant. To late to say BTW honey I have HD and you really need to start worrying about you and this unborn child. OK you can get this unborn child tested BUT if the test comes back pos they will abort. We have a lady who is going through this now with her family.

                       

                      I have seen parents tell their kids at 18 and it turned out disastrous. Kids were mad and things went out of control. Now it has also went the other way that it was no big deal. Others go into denial too.  Life is precious or family is as well we have to tend it just as hard as we do a garden. This lil lady of yours needs to know what is going on.  This is as much her life as it is yours. I really feel you need to reconsider telling her for her sake. You know and what would you have done different had you known at 18? How would you have felt to find out you could of been told at 14 too? Put yourself into her shoes and think what you might feel like. Not just what is best for her. She has to plan a life too. She has to get use to a disease too, if heaven forbid you test pos. And what happens should you be in the gray area? You don't get the disease but you can still pass it on? I bet your daughter can handle it now if you said remember when I found my Dad and he was sick? Then tell her about HD. You do not have to go into gory details just the basic and let her ask questions. Keep the door to communications open and play it by ear. I think at 14 she needs to know more so than a small child but it is her life now you are withholding information on. OK off my soap box now just want you to think about it all. Kids have enough to worry about during the teen years. Don't give her a big secret that she might hear from someone else and look it up on the Internet. 

                       

                      Either way you know you have a extended HD Family here who will be there for you no matter what you decide. Just keep us informed please.  

                      Susie  "I'M BONA FIDE"
                      Email: angelrose@...
                      Yahoo Messenger ID: susie_que_56
                      Yahoo Group: http://groups.yahoo.com/group/huntingtonsatrisk/
                       
                      A Friend is one who comes in when the whole world has gone out.
                      Help Find A Cure For  HD...



                    • Sue Adams
                      You are most welcome Kenneth. I have dealt with depression for about 7 years now. I have had compulsive behaviour for as long as I can remember. I have
                      Message 10 of 10 , Aug 4, 2004
                      • 0 Attachment
                        You are most welcome Kenneth.
                         
                        "I have dealt with depression for about 7 years now. I have had compulsive behaviour for as long as I can remember. I have problems concentrating on projects at work."
                        To be honest this also sounds like ADHD and I know the two are symptoms running side by side, but just a thought. Now the twitches might be something and could be just you and your body relaxing after a long hard day. We never know 100% why we jump and twitch at night. And I also know just how scary and thought provoking it can be when there is a disease like this in the family.  And some people have to know their status!
                         
                        Now let me dig into your brain some more about telling your 14 year old daughter...... This is a subject I feel strongly about but I will also let you make up your own mind. Just throwing in some suggestions and reasons why OK?I would not wait until she is 18 to tell her. How did you feel when you just found out at your age? Were you not worried for your daughters sake as well? After you test and to be honest you really need to let her know you are testing for it. You never know where your best support can come from. Kids are not blind any more they KNOW when something is up. If you keep this a secret they will feel it and feed on this huge secret you have been keeping. Then in 4 years you pop this reality at her and say I waited until you were old enough to handle it. Meanwhile her life has went on and now she has to reconsider life all over again. How do you know she hasn't planned her life to get married have kids, or heaven forbid an accident happens and she is pregnant. To late to say BTW honey I have HD and you really need to start worrying about you and this unborn child. OK you can get this unborn child tested BUT if the test comes back pos they will abort. We have a lady who is going through this now with her family.
                         
                        I have seen parents tell their kids at 18 and it turned out disastrous. Kids were mad and things went out of control. Now it has also went the other way that it was no big deal. Others go into denial too.  Life is precious or family is as well we have to tend it just as hard as we do a garden. This lil lady of yours needs to know what is going on.  This is as much her life as it is yours. I really feel you need to reconsider telling her for her sake. You know and what would you have done different had you known at 18? How would you have felt to find out you could of been told at 14 too? Put yourself into her shoes and think what you might feel like. Not just what is best for her. She has to plan a life too. She has to get use to a disease too, if heaven forbid you test pos. And what happens should you be in the gray area? You don't get the disease but you can still pass it on? I bet your daughter can handle it now if you said remember when I found my Dad and he was sick? Then tell her about HD. You do not have to go into gory details just the basic and let her ask questions. Keep the door to communications open and play it by ear. I think at 14 she needs to know more so than a small child but it is her life now you are withholding information on. OK off my soap box now just want you to think about it all. Kids have enough to worry about during the teen years. Don't give her a big secret that she might hear from someone else and look it up on the Internet. 
                         
                        Either way you know you have a extended HD Family here who will be there for you no matter what you decide. Just keep us informed please.  
                        Susie  "I'M BONA FIDE"
                        Email: angelrose@...
                        Yahoo Messenger ID: susie_que_56
                        Yahoo Group: http://groups.yahoo.com/group/huntingtonsatrisk/
                         
                        A Friend is one who comes in when the whole world has gone out.
                        Help Find A Cure For  HD...
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