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Re: Should i reconsider getting testing?

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  • emmajames1985
    Thanks Melanie, Its true it is such a hard thing to do! I have a gut feeling that I do have it, thats why I think I am trying to avoid getting it, but like you
    Message 1 of 10 , Apr 1, 2009
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      Thanks Melanie,
      Its true it is such a hard thing to do! I have a gut feeling that I do have it, thats why I think I am trying to avoid getting it, but like you said there are some things that I can do if I find out I am positive.


      --- In huntingtonsatrisk@yahoogroups.com, M <rtn4jr8@...> wrote:
      >
      > It's a tough decision as to whether to test or not and it's very individualized as well.  I struggled for years (about 10 years) as to whether I should test or not.  I thought of several different things before testing to make sure that I was prepared for the results.  I was pretty much living as if I had it, so I figured I might as well find out.  I figured if I had it then I could sign up to be part of the research groups, really focus on my diet and exercise (which should be done regardless if one is positive or negative), and would know what to tell a potential boyfriend. 
      >  
      > I was very lucky and I tested negative.  Hindsight is 50/50 and I sometimes wonder if I would have been prepared for a positive result. 
      >  
      > If you ever need someone to talk to who understands what it's like to be at risk and has gone through the process of trying to decide to test, please do not hesitate to contact me.  It's nice to know that you're not allow in the world when it comes to dealing with HD. 
      >  
      > Melanie
      >  
      >  
      >
      > --- On Fri, 3/20/09, emmajames1985 <no_reply@yahoogroups.com> wrote:
      >
      >
      > From: emmajames1985 <no_reply@yahoogroups.com>
      > Subject: [huntington's at risk] Should i reconsider getting testing?
      > To: huntingtonsatrisk@yahoogroups.com
      > Date: Friday, March 20, 2009, 1:33 AM
      >
      >
      >
      >
      >
      >
      > Hi my dad has HD and its really upsetting to watch him struggle. I am 24 and my sister is 15 so we are both at risk. I have choosen not to get the test for the reason that if I do test +, then all i can see from that is me worrying about when it will come, and as there is no cure or really anything else you can do to stop the onset i dont see what good can come of that. In saying that since looking on this site, I have noticed alot of people have got or are getting tested...
      >
      > So i was wondering what good can come from actually getting it, such as things to slow down process etc?
      >
      > Also I was wondering what you think about if it would be selfish to still have children knowing you have the disease?
      >
      > Thanks for reading and your help :-)
      >
    • emmajames1985
      Thanks Scott for your advice, its good to see your side as you choose not to get tested, and Im glad you said you had children regardless, because honestly
      Message 2 of 10 , Apr 1, 2009
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        Thanks Scott for your advice, its good to see your side as you choose not to get tested, and Im glad you said you had children regardless, because honestly even if I do have HD I still cant see myself giving that up, and at the end of the day we wouldnt all be here if that was the case:-)


        --- In huntingtonsatrisk@yahoogroups.com, Scott <scott_v1963@...> wrote:
        >
        > Emma:
        >
        > A reply from the "other side".  I'm 46 now and was right about your age when I lost my own father about 3 or 4 years after his diagnosis.
        >
        > I, too wondered whether testing (it was a bit more complicated back then), was for me or not.  I decided at that time it was not for me.  If there was nothing they could do to help me or prevent it from coming active, what good would it do to know?  Sure, as Melanie mentioned the upside is pretty cool if your negative. 
        >
        > However, I've strived to live my life as if I don't have it, while planning for my future as if I do.  (Insurance, insurance and more insurance).
        >
        > I've never regretted that decision.  Knowing either way would have changed who I am today, and the decisions I've made. 
        >
        > That said, when my sister showed her signs 5 years ago, for the first time, I really started to review my decision, and so far haven't changed my mind.  At my age I'm closer to being tested, but still doubt what good it would really do me.
        >
        > As for children I have 3.  I struggle with their @risk status and pray they are spared.  I don't regret being born, even with HD in the family.  I pray they never regret it as well.  Some say (even on this board) that having children either @risk or tested positive is a bit selfish.  Perhaps, but should we selectively mate to create a more perfect human?  If I had not had children, the future would not have my children's aspirations:  A doctor, storm chaser and a veterinarian. 
        >
        > Melanie's choice was personal and regardless of the result it was the right choice for her to test. 
        >
        > My decision not too was the right choice, too.
        >
        > Good luck
        >
        >
        >
        >
        > ________________________________
        > From: M <rtn4jr8@...>
        > To: huntingtonsatrisk@yahoogroups.com
        > Sent: Sunday, March 22, 2009 9:38:18 PM
        > Subject: Re: [huntington's at risk] Should i reconsider getting testing?
        >
        >
        > It's a tough decision as to whether to test or not and it's very individualized as well.  I struggled for years (about 10 years) as to whether I should test or not.  I thought of several different things before testing to make sure that I was prepared for the results.  I was pretty much living as if I had it, so I figured I might as well find out.  I figured if I had it then I could sign up to be part of the research groups, really focus on my diet and exercise (which should be done regardless if one is positive or negative), and would know what to tell a potential boyfriend. 
        >
        > I was very lucky and I tested negative.  Hindsight is 50/50 and I sometimes wonder if I would have been prepared for a positive result. 
        >
        > If you ever need someone to talk to who understands what it's like to be at risk and has gone through the process of trying to decide to test, please do not hesitate to contact me.  It's nice to know that you're not allow in the world when it comes to dealing with HD. 
        >
        > Melanie
        >
        >  
        >
        > --- On Fri, 3/20/09, emmajames1985 <no_reply@yahoogroup s.com> wrote:
        >
        >
        > From: emmajames1985 <no_reply@yahoogroup s.com>
        > Subject: [huntington' s at risk] Should i reconsider getting testing?
        > To: huntingtonsatrisk@ yahoogroups. com
        > Date: Friday, March 20, 2009, 1:33 AM
        >
        >
        > Hi my dad has HD and its really upsetting to watch him struggle. I am 24 and my sister is 15 so we are both at risk. I have choosen not to get the test for the reason that if I do test +, then all i can see from that is me worrying about when it will come, and as there is no cure or really anything else you can do to stop the onset i dont see what good can come of that. In saying that since looking on this site, I have noticed alot of people have got or are getting tested...
        >
        > So i was wondering what good can come from actually getting it, such as things to slow down process etc?
        >
        > Also I was wondering what you think about if it would be selfish to still have children knowing you have the disease?
        >
        > Thanks for reading and your help :-)
        >
      • emmajames1985
        Thanks Heather, Im sorry about your husband. I didnt know there was that test for the embryos, so that is definatley good to know! When I first found out about
        Message 3 of 10 , Apr 1, 2009
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          Thanks Heather,
          Im sorry about your husband. I didnt know there was that test for the embryos, so that is definatley good to know! When I first found out about my dads condition and that there was 50-50 chance for me all I wanted to do was go straight to the doctors and get tested!! But since then I have been thinking at least if I had some chance of not having it then I would still have that hope? does that sound crazy?



          --- In huntingtonsatrisk@yahoogroups.com, CreativeColors19@... wrote:
          >
          > My husband is 29 and has tested positive.? He chose to get tested a few years ago when his dad tested positive. He tested almost immediately because he couldn't live his life normally 'not knowing'. In his mind from the time he found out it was possible, he started imagining all the symptoms. He would constantly question whether simple trips or forgetfulness was Huntingtons or just a bad day.
          > He doesn't regret testing at all. His sister tested this past year and was positive. She does not regret it either. It is definitly a decision only you can make, how you would like to live day to day. He no longer has to question, and he takes supplements and takes extra care of his body while he waits for a cure.
          > About children.... there is a 50/50 chance of passing the gene on. And since there is no cure yet, I believe those to be bad odds.? There is a procedure called PGD where they take your eggs, your hubbys sperm and make embryos. They test the embryos for the gene and only implant the negative embryos insde of you.? It costs about $10,000... but in my honest opinion no amount of money is too much to stop this horrible disease.
          >
          > Heather
          >
          >
          > -----Original Message-----
          > From: emmajames1985 <no_reply@yahoogroups.com>
          > To: huntingtonsatrisk@yahoogroups.com
          > Sent: Fri, 20 Mar 2009 2:33 am
          > Subject: [huntington's at risk] Should i reconsider getting testing?
          >
          >
          >
          >
          >
          >
          > Hi my dad has HD and its really upsetting to watch him struggle. I am 24 and my sister is 15 so we are both at risk. I have choosen not to get the test for the reason that if I do test +, then all i can see from that is me worrying about when it will come, and as there is no cure or really anything else you can do to stop the onset i dont see what good can come of that. In saying that since looking on this site, I have noticed alot of people have got or are getting tested...
          >
          > So i was wondering what good can come from actually getting it, such as things to slow down process etc?
          >
          > Also I was wondering what you think about if it would be selfish to still have children knowing you have the disease?
          >
          > Thanks for reading and your help :-)
          >
        • Heather Dugdale
          Hey..I have HD. I got tested. I did not think otherwise. There is lots of hope in the world. There is tons of research going on for cures. There is more
          Message 4 of 10 , Apr 1, 2009
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            Hey..I have HD. I got tested. I did not think otherwise. There is lots of hope in the world. There is tons of research going on for cures. There is more research for HD, then Alzheimer's. I know what it is like. I watched my Mom struggle too with HD. There is more hope now then in the past ten years. I made a positive HD website and blog that could help. I put ways to cope on there. Hopefully you find peace. My husband and I are getting kids through PGD.

            http://heatherdugdale.angelfire.com/

            HEATHER DUGDALE

            > > From: emmajames1985 <no_reply@yahoogroups.com>
            > > Subject: [huntington's at risk] Should i reconsider getting testing?
            > > To: huntingtonsatrisk@yahoogroups.com
            > > Date: Friday, March 20, 2009, 1:33 AM
            > >
            > >
            > >
            > >
            > >
            > >
            > > Hi my dad has HD and its really upsetting to watch him struggle. I am 24 and my sister is 15 so we are both at risk. I have choosen not to get the test for the reason that if I do test +, then all i can see from that is me worrying about when it will come, and as there is no cure or really anything else you can do to stop the onset i dont see what good can come of that. In saying that since looking on this site, I have noticed alot of people have got or are getting tested...
            > >
            > > So i was wondering what good can come from actually getting it, such as things to slow down process etc?
            > >
            > > Also I was wondering what you think about if it would be selfish to still have children knowing you have the disease?
            > >
            > > Thanks for reading and your help :-)
            > >
            >
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