
Sep 04, 2010, 01:04 PM
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Member Since: Jun 2008
Location: In My Head
Posts: 1,396
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Quote:
Originally Posted by KDlady
My sister, Shanna, is terminally ill with Huntinton's disease (HD) an inherited neurological disease which my mother had, an aunt and uncle had and they inherited it from their mother. We both had a 50 - 50 chance of getting the gene for this disease all who have had it have since passed away (before the age of 45). My sister got the gene for HD- I did not. I have two cousins who were born to the aunt with HD - both have HD- One has already passed away, at age 30. So in this generation - I am the only one who was at risk who has not developed this disease - who does not have the gene. On top of this -the family has huge issues with physical, sexual and emotional abuse and no stability what so ever with my mom in and out of various mental hospitals thoughout her life. While I should be very grateful and feel blessed because I did not develop this disease, I do not. I feel guilty. I feel burdened. I have major survivor guilt and when my sister went into a nursing home (at age 39) I went into full blown PTSD. At times I love her with all my heart - I wish I could trade places with her and at other times I hate the idea of even seeing her. I wish I had someone who could really understand this - the condition is rather rare and the support group I belong to seems to believe that to rage at this disease and my situation is unhealthy. That just adds more guilt. She has 3 children who are at risk - they can be tested after age 18 but many people choose to not be tested. She also is married and her husband and children visit her faithfully at least weekly if not more often. I am married and have 2 children and am grateful everyday for the fact that my children will never have to watch me slowly wither away mentally and physically and will never have that worry themselves - but that gratefulness is for them not myself. Does this make sence or does anyone understand this?
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Hello, Kdlady. i first want to say i am sorry that you are going through this and that your sister and her family is going through this. I don't know much about HD or have known anyone with it, but I can realate to the fear. My mom had MS. My sister and i have a 50/50 chance of developing it. My mom's symptoms showed up in her mid-late 20's. A few years ago, I started having weird things happen to me. Here lately I have been having muscel weakness in my arm and face. And tingeling. I understand you are grateful your kids don't have to watch you wither away. It is hard too see that with your parent. I hope and pray my son does'nt have to take care of me throughout his childhood. So everything you have said makes sense to me Stay strong
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Dx: PTSD, Panic Disorder, Obsessive Personality Disorder.
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