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7254Re: [huntington's at risk] Positive HD gene test two years ago

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  • Dave Hodgson
    Jul 24, 2012
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      Hi "nrjhd" :)
      I'm Dave and have been asociated with HDSA since 1986 when my wife was diagnosed.  There was no blood test at the time.  Her mother was one of seven siblings and the only one to have HD.  My wife was one of 5 siblings, she was the oldest.  One of her younger brothers died with it as did her younger sister.  One of her younger brothers has never tested but is not showing any symptoms.  Her youngest brother took the test and tested negative.  I have 4 kids by my late wife, the oldest is a son (38) and just tested positive in February of this year.  My 3 daughters have elected NOT to test and live one day at a time.  Two of them love taking calculated risks: they both skydive.  The youngest daughter has 2 sons with her boyfriend of 10 years (He wants to marry her, she doesn't want to be married).  After my late wife died, I remarried a gal I met on an on-line support group for HD.  Her late husband died in 1999.  She has 3 sons: the oldest is 38 and lives with us as he tested positive for HD in 2002.  Her middle son tested negative and her youngest son was adopted and will never have to worry about HD. 
      My late wife and I got involved locally with the Illinois state chapter of HDSA as soon as she was diagnosed.  I've served as the President of the chapter for 6 years.  My current wife was associated with the Oklahoma state chapter and joined the Illinois chapter when we got married (at the 2005 National Covention in Atlanta, Georgia).  My wife along with Jean Miller from Florida guided the National Youth Association for several years until the NYA higher ups "retired" them. 
      As you already have a life time of experience taking care of your father, I can only imagine what you're now going through.  Surround yourself with those who will be there to support you, to help you, as you walk down the path of this devastating disease.  If there's any hope, it's the fact that we are light years ahead of when I was first introduced to HD by meeting my prospective in-laws.  The research is now incredibly advanced and offers us real hope that we WILL find a treatment that will allow our HD loved ones a full "normal" life. (ASO's and stem-cell therapy look very promising). 
      We are always sad that you had to look for us, but happy that you found us.  Living as far as you do from a support group is NOT unusual.  While I live relatively close to several support groups in the Chicagoland area, I still relied heavily on the on-line support groups that I belonged to as I do today.  There is nothing you can't discuss here with us.  I suspect some of us old timers have almost seen it all when it comes to HD.  If we can't answer your question, I'm sure we can find someone who can.  Also, this is THE place to vent your frustrations with HD.  We DO know what your feeling because chances are good that we've been in the same situation.  Welcome to the group!
      Best regards
      Dave Hodgson
      Illinois Chapter TEAM HOPE-Walk For A Cure
      Ill. Chapter-HDSA Web Page
      Sponsor Dave & Susie's Walk
      ----- Original Message -----
      From: nrjrhd
      Sent: Tuesday, July 24, 2012 5:45 PM
      Subject: [huntington's at risk] Positive HD gene test two years ago


      I am 120 miles from the nearest support meetings. I have never
      considered a support person on line until today. I just resently found
      this site. I do not have anyone which I can discuss this horrible
      situation with that understands first hand how I feel.

      My father died with HD nine years ago. I am one of six children. One
      brother was diagnosed two years ago, one sister with all the symptoms
      but refuses to go to a doctor,and one brother with a negitive gene test.
      The other siblings are very much in denial. I have cousins also at risk,
      but none that will talk about IT.

      I am 56 years old. My family tends to develope the symptoms in our late
      fifties. I was my fathers caregiver for 12 years so I know first hand
      what a dreadful time my family will have caring for me. I have a
      wonderful and supportive husband and two children that love me dearly
      but I would rather go to a early grave than for them to have to care for

      I lost my job 16 monthes ago after working for 27 years as a LPN. I had
      difficulty caring for my patients and eventually become a risk for the
      company. After a hospitalization and multiple med changes, my
      depression, anxiety and panic attacks are finally under control.

      I would like to hear from you and learn your story.

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