Loading ...
Sorry, an error occurred while loading the content.

7257Re: [huntington's at risk] Positive HD gene test two years ago

Expand Messages
  • Ruthie Johnson
    Jul 26, 2012
    • 0 Attachment
      Cindy,
      You are the first person I have heard from .  For an instant I felt like a child at christmas time.  Someone does care! 
      It is a wonderful thing you are doing. I would be thrilled to tell you the rest of my story, even if it hurts to bring up things that I tried to bury for years.
       
      My typing, grammer and spelling is horrible so you will have to endure. It took me hours to write the little bit of information on the site.  My husband is a great help when he has time and will proof things for me.
       
      I live in a little town called Perry Georgia, right in the middle of the state. I have only one brother which I have a relationship with out of 5 sibling. I have another brother which was diagnosed about three years ago. I will occassionally talk with him or his wife.  My at risk cousins are scattered all over the southeast, It has been years since I saw any of them.  I do know I have a  first cousin in FL and an aunt in AL which has been dignosised with HD.  
       
      My life is not all negative and drama. My husbands family loves me like their own.  He is from a family of 9 and they are all very close.  I have been married to the same wonderful man for 37 years.  We have a son 36 and a daughter 31. I am Nana to 3 of the most precious grandchildren in the world. I have a great church family also.  Although I have all these people around me I often feel like I live on a deserted island all alone.
       
      Please send me more information on your work and about your family status.  I will help you any way that I can.

       
       
      From: Cindy Diogo <cindy_diogo@...>
      To: "huntingtonsatrisk@yahoogroups.com" <huntingtonsatrisk@yahoogroups.com>
      Sent: Wednesday, July 25, 2012 8:51 PM
      Subject: Re: [huntington's at risk] Positive HD gene test two years ago

       
      Hi,
      First and foremost, since you do not have a local support group, please do not ever feel you are alone!  We are all in this together.
      I am 54 years old and live in New Jersey near Philadelphia.  My test was negative in 2009 but still does not take the HD out of me.  I live with the survivor guilt that many gene negative people experience. 
      Currently I am in graduate school and my final thesis project is a collection of short stories about different people in relationsship to HD and their gene status.  I know this is very forward of me, but would you be interested in telling me your story even in more detail to include in my collection?  All names/locations etc will be changed to protect idenitity unless individuals are okay with their real names and locations.
      If you are interested, I would like to send you more information, if you are not, please feel free to call or email anytime when you need someone to listen, someone just to talk to for no real reason.  You will alwyas have someone from this group willing and able to help you cope.
      856-655-6175 (cell) in the evenings (phone does not work at the building I work in)
      215-662-8056 (office #)
       
      Cindy Diogo

      From: nrjrhd <nrjrhd@...>
      To: huntingtonsatrisk@yahoogroups.com
      Sent: Tuesday, July 24, 2012 6:45 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
      me.

      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.





    • Show all 7 messages in this topic