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I need some help and support

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I need some help and support

Postby 44_brittany_44 » Sun Jun 17, 2007 1:11 pm

hello,

My name is brittany and i am 16. My mother has been living with HD since I was 10. Life has been really hard. I have one younger brother. My mom is in the late stages of her disease. She rules the house, wich is bad to say but she keeps everyone busy geting her stuff and dooing things for her. she also has demintia and scitsophrenia and everthing else that can posibly come with the stupid desease. she can still walk and talk kinda but thats about all she can do. From the time i was about 12 to 14 she was in and out of nursing homes becase she was so perinod about everything she thought my father, who gives her everthing she could possibly want, was hurting her.
I hate everthing I am the mother of the house i take care of her and my little brother and i hate it. i just want to be a normal teen and be able to hang out with my friends when i want. I want a normal mom. i never got to do the normal mother daughter things familys take for granted. I feel like such a bad person because i just cant accept things as they are and i blame my mom sometimes.

my mom and dad meet each other. then got pregnant with me and a couple of months later got married. I was the only reason they got married. My moms dad had the deasise and she knew she could have it...but no she went and got knocked up, not even thinking of what she could do to her children not even caring of what could happen to them, how much she could screw up there lifes. I cant stand it I know i blame her and i have tried to stop but i cant.
I am an overachiving person. I do a lot of things and I do them the best that i can. I want to be a surgeon im intrested in a lot of things but what i am intrested in the most is cardiothorac's and nurosurgery.
surgery is a profession that takes a lot of time and a lot of schooling wich costs a lot of money. Its a lot and if i contract the disease it will be a big waste. I cant get tested till im 21 I dont know why but thats what my dad told me, as soon as i turn 21 im geting tested because i want to know if what im working twards will all be wasted. If i have it i wont get married and i wont have kids I dont want to have kids and screw up thier lifes like mine, I mean im a 16 year old living like a 30 year old...I have no life. we are a poor family so in home care is out of the question. but things are geting to be to much sometimes Id rather have my mother live in a nursing home.

I feel like a big jerk. if any of you out there are teens with parents like this please write me i need to know how you deal
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Postby puma » Tue Jun 19, 2007 3:49 am

Dear 44_brittany_44,
Anyone who reads this post should be humbled that their problems are not as great as yours'. This deal with Huntington's disease is not a thing I have personal experience with, so all's I can offer is my sincere hope that you don't have this yourself, and can live a fulfilling life. 5 years seems a long time to have to wait; from what I've read online, one can get the test at age 18.
This is such a hard row to hoe. You do not have to feel like a big jerk about this. Most people would have no idea of the depth of your distress, anger and worry over having to deal with your ill mother, take care of your family in her stead, and have this sword hanging over your own head.
Here are some links to sites that may help you.
http://www.lkwdpl.org/hdsa/hdtest.htm
http://health.groups.yahoo.com/group/hu ... pportclub/
http://www.hdac.org/chat/index.php
"So It Goes..." Kurt Vonnegut
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http://schizoids.net/forum/index.php
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Postby butterflykisses8 » Tue Jun 19, 2007 5:16 pm

Hello Brittany,

My mom started showing the disease the year she was pregant with me. She had lived 21 years with the HD. I was taken from her when I was 10 years old. I felt the same way you did. I had to grow up to fast.

Right now I am taking care of my sister and I get so upset with the disease I don't know what to do.

My mom was one of six kids. 4 out the six got the disease. My grandfather had it but back then they were told that only men could get it. All six girls went out and got married. The four girls that got it is gone and their kids are dieing with it now.

Talking with someone is good and doing something like running or what ever you like also help.

My brother has it and he runs and you can't even tell that he has it. He rans to take control of the stress.

Both siblings have it and I have not gotten tested yet. I will be willing to chat with you.

My name is Pamela and I am 38 years old.
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Postby LoveQuiet » Sat Jun 23, 2007 11:15 am

Wow, Brittany,
That's a really hard row to how.
FWIW: I read up on HD at http://en.wikipedia.org/wiki/Huntington%27s_disease and noted that they say a couple interesting things about diagnosis: 1) testing begins ~age 18. 2) It's recommended to have several counseling sessions before the testing: to be prepared for implications of possible test results.

I sure didn't have YOUR type of teen years, but I did experience the "early adultification" or loss of childhood.

Please seek out the support you need - in forums or other responsible (& inexpensive) places. Truly, it sucks. But there are "Helen Keller" stories. Human will (especially aided by divine will) can triumph over unbelievable odds.

Here's to your triumphs!
—LQ
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