Hi Everyone,
Sorry for this depressing post, but I literally have no one to talk to. I have no close friends or family who I can get this off my chest to, and hopefully get some constructive feedback from. Because I don't know you, it might be easier. Anyone who doesn't want to read a depressing, maybe whining post, pls don't read or comment. To those who really want to be helpful, I thank you.
Here comes the load.
Ok, first things first. Huntingtons Disease, also known as HD. The best way to discribe it is - a genetic, disabilitating disease that eventually kills you. That's it in a nut shell. This disease slowly or quickly, no 2 people are the same, breaks down your motor skills, as well as eats up your brain, making a person unable to care for themselves or even eat, and makes them very difficult to live with, because they become so neurotic (almost crazy). The early signs are practically the same as those caused by stress - forgetful, clumsy, angered easily, bouts of depression. Let me tell you, just knowing that you have a 50% chance of having this awful, scarey disease makes you depressed. The worst of it is that there is no treatment and there is no cure.
My mom has HD. That means that my brother and sister and I each have a 50% chance of having it.
Today my mom passed by, as she sometimes does cuz we live nearby, and she was having one of her bad days. Constantly repeating herself, nervous, unable to keep a sentence clear and unable to stay still for just a moment. All part and parcel with the disease, which is always worsened by my unsupportive father. My father has no patience for the disease. My problem is, niether does my husband. He outright told me today, after my mom left, that if he was in my dad's shoes he would have left me and found someone else. Right out jerk right. This is where my confussion begins.
I want to know if I have the disease but I'm afraid to find that I'm positive. You might be saying, of coarse you are who would want to have such a horrible thing happen to them. That's not the reason. I want to know so I can plan out the rest of my life before it hits a standstill because of the disease. If negative, I might plan to have another child. I have 2 at the moment. I would also like to know for thier sake, you see, HD is passed from parent to child. Each child has a 50% chance of getting it. That means, if I have it my kids have 50% of having it. This is a very scarey and gutcrushing thought. Now the reason I'm afraid to find out. Thanks to hubby's comment I don't know if it's the right thing to do anymore. I'm afraid that if I find out I'm positive and he finds out I'm positive, that he may use it against me to leave and take the kids with him. But then if I find out I'm negitive I can forget all this depressing, heartcrushing, mindbending, thoughts that are killing me right now. As I'm writing this last bit I'm crying my eyes out cuz I have no other way of letting all these feelings out. Both my angels are sleeping peacefully and my husband is at work, I'm completely alone in more ways than one.
If you've read all of this thank you and pls support your local Huntingtons Disease research groups. There a loads all over the world. http://www.kumc.edu/hospital/huntingtons/groups.html
If you wish to give some supportive comments I'd appreciate it. I really don't know what I'm going to decide. I don't want to lose my kids, but like I said, it could also end my worry if I'm negative.
Thanks loads, An
