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Re: [huntington's at risk] New member

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  • Melissa Jones
    Son testing positive. I am from Mississippi and live in Las Vegas now. My sister and brother are a lot older than me and have both
    Message 1 of 14 , Jun 1, 2013
      Son testing positive. I am from Mississippi and live in Las Vegas now. My sister and brother are a lot older than me and have both


      From: Dave Hodgson <SpikeTDog@...>;
      To: <huntingtonsatrisk@yahoogroups.com>;
      Subject: Re: [huntington's at risk] New member
      Sent: Sat, Jun 1, 2013 12:02:24 PM

       

      Melissa, this is a great place to start.  We're sorry for the reason you found us, but glad that you did.  Feel free to ask anything you want about HD and we will try to answer your questions.  Where do you live?  How old is your child?  Testing for the HD gene is a huge undertaking.  While some want to know their gene status, others do not want to know.  I have 4 kids (all adults).  My oldest, a son, wanted to know as his wife was beginning to spot some changes in his personality.  He has since tested positive for the gene.  His 3 younger sisters do NOT want to know and have chosen to live their life one day at a time.
      Dave

      For more information about Huntingtons Disease:
      http://www.HDSA.org/il
       

       
      ----- Original Message -----
      From: melly_aj
      Sent: Saturday, June 01, 2013 1:53 AM
      Subject: [huntington's at risk] New member

       

      My name is Melissa, I am 26 years old and a single mom. My Mother passed away from complications of HD in 2000. I still have a hard time dealing with it all emotionally. I am still at risk of inheriting the gene but have not been tested yet. I am too afraid because I don't think I could handle it if I found out I have the gene. But right now, I think there is still an equal chance of not having HD. I just try ot live my life the best I can because if I do have it, I don't want to be sick and wish I had lived more happily. I go to counseling sometimes but was told maybe I should try to find support groups and others who have been in my situation. It seems alot of people (when I tell them about HD) don'treally understand how bad it is because they haven't been through it....I also am worrying more recently because sometimes my nerves are bad and I am shakey.

      No virus found in this message.
      Checked by AVG - www.avg.com
      Version: 2013.0.3343 / Virus Database: 3184/6372 - Release Date: 05/31/13

    • Melissa Jones
      Tested negative thank goodness. Where are u from? In my family usually the effects of HD start showing around the age of 32
      Message 2 of 14 , Jun 1, 2013
        Tested negative thank goodness. Where are u from? In my family usually the effects of HD start showing around the age of 32


        From: Dave Hodgson <SpikeTDog@...>;
        To: <huntingtonsatrisk@yahoogroups.com>;
        Subject: Re: [huntington's at risk] New member
        Sent: Sat, Jun 1, 2013 12:02:24 PM

         

        Melissa, this is a great place to start.  We're sorry for the reason you found us, but glad that you did.  Feel free to ask anything you want about HD and we will try to answer your questions.  Where do you live?  How old is your child?  Testing for the HD gene is a huge undertaking.  While some want to know their gene status, others do not want to know.  I have 4 kids (all adults).  My oldest, a son, wanted to know as his wife was beginning to spot some changes in his personality.  He has since tested positive for the gene.  His 3 younger sisters do NOT want to know and have chosen to live their life one day at a time.
        Dave

        For more information about Huntingtons Disease:
        http://www.HDSA.org/il
         

         
        ----- Original Message -----
        From: melly_aj
        Sent: Saturday, June 01, 2013 1:53 AM
        Subject: [huntington's at risk] New member

         

        My name is Melissa, I am 26 years old and a single mom. My Mother passed away from complications of HD in 2000. I still have a hard time dealing with it all emotionally. I am still at risk of inheriting the gene but have not been tested yet. I am too afraid because I don't think I could handle it if I found out I have the gene. But right now, I think there is still an equal chance of not having HD. I just try ot live my life the best I can because if I do have it, I don't want to be sick and wish I had lived more happily. I go to counseling sometimes but was told maybe I should try to find support groups and others who have been in my situation. It seems alot of people (when I tell them about HD) don'treally understand how bad it is because they haven't been through it....I also am worrying more recently because sometimes my nerves are bad and I am shakey.

        No virus found in this message.
        Checked by AVG - www.avg.com
        Version: 2013.0.3343 / Virus Database: 3184/6372 - Release Date: 05/31/13

      • sbrooks11
        Hi, I was wondering if this Susie is the one I used to write to who had a husband who died of HD? I lost contact with her but would so like to reconnect as she
        Message 3 of 14 , Jul 13, 2013
          Hi, I was wondering if this Susie is the one I used to write to who had a husband who died of HD? I lost contact with her but would so like to reconnect as she was so much help to me coping with my son's HD. Thank you.

          --- In huntingtonsatrisk@yahoogroups.com, susie_que_56 <no_reply@...> wrote:
          >
          > Hi Neb Julie,Lovelyrosepetals and Evalvic these are our newest
          > members in At Risk Group WELCOME to you all.
          >
          > Evalvic anytime you want to talk about yourself you are most welcome
          > to do so. How else will we get to know you? I am glad we could be
          > here to help you out in this rough part of your life. I won't pretend
          > that OI know what it is to be at risk but I know what it is like as a
          > mother with two at risk sons, one 23 and the other will soon be 12.
          > Kevin my oldest started this club but I watch over it day to day. He
          > does check it quite often though.
          >
          > We also have several from the UK here but due to the time differance
          > some don't come into the chat room as there is a 6 hour difference or
          > more. PLease remember that weather you test is your decision no one
          > elses but us non riskers have a way of putting in our 2 cents worth.
          > Everyone has to deal with HD in their own fashion as you are the one
          > who has to live with the final out come of testing. Good or bad it is
          > never easy as if you test neg you can have suvivors guilt as well
          > which is just as bad. I do hope that someone from yur area will know
          > of a dr who will be more supportave to you and your plight. I do wish
          > you the best in finding your way through all this, and please know we
          > are here for you when ever you need us.
          >
          > Susie
          >
        • kimgoodfellow2267
          Hi Melissa My name is Kim. My Mom got HD when I was 12yrs. after she died I learned to meditate to help me deal with the emotional pain. I was also abused my
          Message 4 of 14 , Feb 7, 2015
            Hi Melissa
            My name is Kim.
            My Mom got HD when I was 12yrs.
            after she died I learned to meditate to help me deal with the emotional
            pain.  I was also abused my entire childhood by my father.
            I was in sooooo much pain......I started to meditate to try and deal with 
            some of the pain.
            After I started opening up too communicating with the universe........Spirits, my Mom (who is dead and now a spirit), spirit guides, Jesus, God etc.
            I found that meditating was helping my pain!!
            I am 50 yrs.  now and have no signs of HD!!!

            WOW  I AM NOT GOING TO DIE FROM HD AT ALL!!!!
            what a miracle!!

            I have written a book on how I cured myself of HD!!!  what I have done can work for any disease.........also if you know of anyone suffering from a disease...........please pass my email onto them and I will email my book to cancer people too.
            tkgoodfellow@...
            I hope you email me!!

            light & love
            Kim
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