Where do I begin...and please if I'm all over the place it's only because that's how my thinking process is right now..Huntington's is not new to me at all...I remember back when I was 7 years old I was told my grandmother had "Huntington's" and that's why she was in the nursing home...at the age of 12 I was told I had a 50/50 chance I could get Huntington's if my mom got it...when I was 16 my mom started showing signs of HD...I'm the youngest of 3 girls...in 1995 my oldest sister Vicky (she was was 28 years old) tested positive for HD...in 1997 (I was 28 years old) I tested negative...and Debbie the middle daughter in 1999 (she was 31 years old) tested positive...and my mom in 2000 (age 50) tested positive... to make a very long story short...life was very hard like all of you must know for all of us with and without HD. I took my mom into my home for 12 years while she was bedridden (that is what a good daughter does who didn't come down with HD) My mom passed away in 2008 (she was 58 years old)....My sister Vicky went into a group home 1/2 year before she passed away 2012 (she didn't want a feeding tube she was 45 years old)...and Debbie....Debbie just passed away a week ago...she did have a feeding tube and pulled it out three separate times and her wishes were to keep it out and not let the doctor replace it (she was 46 years old)...

I'm not a stranger to HD...it's been my whole life

I'm 45 years old...I have watched my grandmother, mother, and now two sisters all be taken away because of HD...HD has consumed most of my childhood and all of my adulthood...if it wasn't me taking care of my mom then it was me going from group home to group home (visit one a month) to visit my sisters...one sister was 4 hours away while the other was 1 hour away...when I was first tested and my results came back negative and both my sisters and mom was positive I felt really guilty cause I knew there wasnt a cure for them and I knew there outcome...My sisters never said anything to me but I knew deep down they asked themselves why Valerie and not me....people would tell me..maybe that's why you didnt come down with it (HD) is to take care of your mother and sister's cause they wont be able to care for themselves...so I have lived with that thinking now for the past 19 years now...thinking that's my kind of mission in life is to care for them...like its my reason for not getting HD...so I was able to care for my mom and sisters...and I didn't care for my sisters at all...I just visited them and loved them...but for 19 years I have planted that in my head..and now people are coming up to me cause they know my sister passed...and they make comments like "I wonder why you didnt get Huntingtons"? and I know they are not meaning it rude... they mean it in how does one get it and one not get it...the only thing running threw my mind now is "why didnt I get it"...why did I have to go threw all this just to end up alone...not having HD is more of a curse then a blessing sometimes...I know I need to talk to someone...my friends try they really do...but if you don't have HD in your lives...then you don't really understand what "I'm going threw"....

Thank you for letting me vent

Valerie
Chelan Washington

I am only a caregiver so I really cannot fully understand. I am sorry but I cannot think of any words to reply.

Joe

I'm so sorry, what you have gone through, and how you now need to process your future. It's like your sense of identity is gone, and you need to find a new identity. I can relate to that, but on a different level. When my husband passed away four years ago, I lost my identity as a wife and partner, and had to find a new identity for myself, like who am I as a person, not as a wife. I'm so sorry for what you are going through, the grief, and I'm sure the sense of confusion. I'm actually in the very early stages of hd, and so I am on the other side of the coin that you are on. When my sister told me she was waiting for her test results, I waited and waited and waited to hear from her about her results, and months and months went by. Finally I phoned her and asked her about her results. She said she tested negative. I actually didn't ask why me and not her. I was SOOO happy for her. So I asked her if the reason she hadn't told me was if she is having survivors guilt, and she said yes. She cares and watches out for me so much, and I feel really bad for her, the burden she must carry. But, we have not had the tremendous history of hd in our family like you have had, and so I just want to say how very very sorry I am. I know there will be others here who will be able to understand more what you have gone through, and what you are going through now. But I just wanted to say hi, and hang in there hon
PS When people try and put hd into a nice little package, by saying, oh you didn't get hd because you had a greater purpose, that must generate a lot of feelings in you, including anger. I think you have to treat hd like cancer. Both hd and cancer do not discriminate, they pick and choose whoever they want, or whoever they don't want, with no rhyme or reason. It's like when some people get diagnosed with hd, they may ask themselves why me, and I guess when I got it I asked myself why not me.
I think you have a lot to deal with, especially finding yourself now. Please don't think twice about going to a doctor too, if you need help for depression. But for now, ((((hugs))) And I'm especially sorry about your sister's recent passing, thank you for posting



Edited 2 time(s). Last edit at 10/14/2014 04:50AM by Barb.

Valerie welcome to the forum. I am saddened that anyone has to go through what you and your family have gone through. You have lost a big part of your life and HD is not kind.

Barb said it well. It is not discriminatory. There have been others here that have dealt with similar issues so you are not alone.

I must say I have not wondered why I got HD and not my siblings (as far as we know: they have not tested and are quite a bit older). I was the first in our family and worry about my children having the gene. Reconciliation with these thoughts is something a person needs. Therapy helps me a lot. It's not always about how do you feel but what is bothering you and how are you dealing with it. It is very useful. I hope I don't pass the gene but it is out of my hands as it is yours. Take comfort that you took care of them and saw their needs met as best you could.

Most people have no idea what HD is. They may have heard the term but don't really know the meaning and it's meaning is different for all of us.

When you are going through or have gone through what you have, good intentions remain good intentions even though it may hurt in some ways. Those wishing us well don't always understand how we feel inside and it's impact on our lives.

Personally I don't feel like my family and friends (very supportive group) understand the difficulty I have each day with the disease although I can take care of myself and be mostly independent.

I wish you well and I am sorry for the losses you have suffered.

Please come back around. You can be a great resource for others who come along on this ride.

Mike

Valerie,
I too am so sorry about your loss and what you have had to go thru. I am also a caregiver so I don't feel like I have any words of wisdom but my husband is a 3rd generation of Hd from his dad's side. His dad has 3 other brothers. 1 was killed in a car wreck years ago and as far as I know neither of the other brothers have ever showed signs. My husband has 1 brother that will not be tested. He is 38 and I am not around him a whole lot but he seems to show very mild signs. He has no children and probably won't ever have any because he is gay. Me and Donnie have 1 son and he will be 22 tomorrow. He got tested this year and told us he tested negative but I'm not sure cause he gave the dr. strict orders not to tell me anything. So I kind-of feel like he was positive and doesn't want us to know. He has serious anger issues.
Please don't feel guilty, be thankful.
Liz

Hi there, I'm sorry to hear you've been through so much, it's literally devastating. My husband has recently tested negative which is a huge relief, however there is an underlying feeling of guilt for want of a better word, for him to deal with. I'm not sure it's actually guilt, I don't even know if there's even a word for it., it's a wide range of emotions and it's not nice. Of course we are delighted with our result for him and our children but it's tinged with sadness. It's a large family, there's been decades of this illness behind us and there's years ahead, I won't say decades as one day there will be a cure/ preventative.

I don't get the feeling my husbands family wonder why he didn't get it, I'm sure they wonder why they themselves did but they never appear to question why the others didn't.

Re people asking why you didn't get it, I'd think they are curious and eager to understand how it's inherited. It's very difficult to understand. I spent years hoping my husband would get his non HD parents genes, I didn't realise until recent years he was going to get a gene from both parents, stupid I know!! Even my husband after getting a negative result feared he could still pass it to the kids, he was told he couldn't pass something he didn't have on but still couldn't really accept this. It wasn't until I explained to him that he had inherited one normal gene from his non HD parent which had been passed on from one of his grandparents, ( no telling which) he then inherited from his HD parent their normal gene which they had inherited from their father, basically he could know he inherited the non HD gene from his grandfather who's family had never had HD in essence HD hasn't touched him genetically.

I'm sorry for your recent loss, I hope you have support to help you through.