Ok so these muscle nudges and twitches are still here and not going away. I talk about HD ALL the time. I am stressing my husband out and said that I will not talk about HD with him for 2 weeks. He is in college and needs to stay focused and I don't help that when I am ALWAYS talking about HD. I can't help it, this is something that could potentially change my life in the future and incapacitate me to take care of my son who is only 8 months old. I am 27 years old and I am getting closer to 30 which is the age for this disease to start. I am pissed and scared. I made a step forward and got information packets mailed to me about HD and genetic testing. Now I just have to call the social worker for my state and find out how much it costs to get tested, whether it is free or not and what I need to do to get tested. I am nervous, but I do want to get tested, I am just afraid of a positive result changing my attitude and the hope I have not knowing. BUT I am pretty damn sure it is going to be a positive, just like my mother and all the things I am experiencing. I just hope that in the end I don't get abandoned and left in a nursing home. I don't want my husband to have to go thru this. Sometimes I think about suicide if my test result is positive....that might be easier in the end, I don't want to be a burden. Although I would never kill myself, I love my son way too much. I just needed to talk about this. Makes me feel like I am not alone. I know that other people here are going thru the samething, and some are going thru harder things. Thanks for reading.



Edited 1 time(s). Last edit at 11/01/2011 09:40AM by papple_juice.

Girl I'm in your boat! My mom has HD and I havent been tested. Everything you said I feel. My husband and I only have one child but he has been begging me for one for the longest time but I tell him that Im saving him because if I have the disease he wont have to deal with a whole lot. Im such a nice wife!( not) I feel horrible and depressed at times with this HD crap. Its always in the back of my mind. I'm not even sure if I have this disease and its not letting me live my life. My husband is Mexican and Mexican people have 3-5 kids but either way I dont that many kids. But they dont understand where Im coming from, when I tell them about the disease. No one will understand you better than here! I get you and I understand how you felling!

To be honest with you I have been thinking about testing too but I dont have the balls to do it. Like you say if I were to be positive than I would kill myself too.( atleast I think I would) I have been my family's backbone since I was very young and I have no father. So to see my husband and child go through what I went through no thank you! I really cant advise you about thes testing because that would be wrong of me! Cause I havent done it myself. But I sure understand where your coming from and I hope to be good friends!

Liz

I read both of your posts and I know it can be scary. However, look at the good things you have now. Don't waste the years you have now
worrying about what may or may not be.
You need to give it time to determine if you want to test or not. Before you do you need insurances in places and, as important, you need your
mindsets to be in a better place. Also, there is counseling prior to testing. You just need to make sure that you are ready if that is your choice.
It is sad to think of suicide as being a way to leave this earth. Think of all the people around you that would be devastated. I know you are both
loved by many.
There are so many medications and supplements available now that weren't there even 5-10 years ago that make a huge difference in your lives.
There are new medications and trials coming out all the time - some of the present ones are very promising.
I know this is easier said than done but "look at your glasses as half full versus half empty". We have to live with what we are dealt in our lives.
Many have it worse - many have it better. Take one day at a time and try to enjoy your life. None of us are guaranteed anything in life.

Liz how old are you!? I am glad that you responded lol I was starting to feel alone! How old is your child? My mother is in the last stage of HD right now and its hard. She had an early onset for the symptoms. She is in a nursing home and I can't always get over to GA to go see her. I am in Alabama. Have you had muscle twitches/nudges? I am experiencing the starting symptoms and that scares me. I am not sure if it is all in my head or real. I know it is scary and if I get pregnant again I will have the baby tested while I am pregnant. I had that option with my son I was just too scared. That makes me feel like a selfish bitch now. I was just too scared to do the prenatal testing and I wanted to be happy. Looking back now, I should have done it. I hope to be good friends too! =)

Shar thank you so much. Your reply made me cry. You have a strong heart I can tell. I do try to be optimistic but sometimes it is so hard. Thank you.

papple juice-

We all have good days and bad, even I, however, I have more good than bad.

Sometimes we need to adjust how we look at things. Someone on here wrote once something about worry and I loved it. It goes something
like "worry is one of the most useless senses". I try to remember that.

When we struggle with HD issues it is hard but alot can be resolved. This webboard has helped me immensely and I appreciate everyones
advice and opinions. HD can be challenging but then I think what if we added say "cancer" or something to it. It could be worse.

I also look at the person as a person who happens to have HD - not totally HD - there is a very live wonderful human being there as well.

As we get older we tend to put things in perspective better and I think that helps too. I guess I know why they say "older but wiser". As I
get older I hope I get wiser too.

Good luck to you!!

Papple and Liz,
I just wanted to say how sorry I am also that you're both going through this. My son is also at-risk, and I know that this is difficult for him, as well. I just wanted to give you my perspective as a caregiver to my son's dad for a good 15+ years before he passed away in April of this year.

I obviously can't lie, it was difficult, but I wouldn't have wanted to spend the last 20 years with anyone other that my Raymond. He added so many beautiful things to my life that I would have never experienced without him. You may feel like you'll be a burden, and I know Ray felt that way early on, but I'm telling you that he changed me and made me a better person in so many different ways. If he had committed suicide early on, I think that would have devastated me much more! He gave me the opportunity to love him, to care for him, to help him, to see that life is so very precious and we need to appreciate each other . . . he also was still able to encourage me, cry with me, share tender moments that I'll cherish forever and hold so close to my heart, he also laughed with me and makes me still smile today when I think of the funny things he'd say or do . . . most of all, though, he taught me that people really do come into your life for a reason and there is a greater purpose than any of us are really aware of. So whether you guys have HD or not, you matter and you're important and loved by your family and they need you regardless of HD!! I promise you that! Would it be easy? Probably not, but nothing in life is really easy, that's one of the biggest lessons I've learned!

Thinking of you both!
Michelle

Hi
Just wondering if you have read my posts? Believe me I had twitches and every other symptom for 10 years. Convinced I had it -felt the exact same way you guys do and guess what - I tested negative. Yes Negative!!!

I was so convinced that I finally got enough nerve to get tested (only because my son started having seizures- so I was convinced it was JHD)- that i got the blood work done- and then did not go back for my results for almost 2 years later!!! I just didnt want to face the music!! I only went because I figured I could get into some studies and be proactive for my children- and I didnt have it!!!!!!!! It can really do scarey things to our minds when we live at risk. I let it rule me. I actually almost quit my job because I am a nurse and i felt the doctors could see my twitches and I was having troubles functioning!! That is what made me get my results- I was a mess. I was even looking into how to cash in on my long term care insurance.

Really this is true and when the counsellor handed me my results and said, "your fine." I almost fainted. My husband started screaming!! He said I had him convinced I had it too. I had most of my friends believing i had it.

Im just saying that before you plan your death, etc... Take it from me. There is really a 50% chance of being negative also- I know when you are at risk you dont see that - you only see the 50% positive at least that is all I could see. I still cant believe it. It is one year since I found out and sometimes I think I should get my blood tested again just in case they made a mistake. I spent 20 plus years believing that HD was my
fate and it is very unbelievable to know it is not.

I had twitches all over- in my fingers, legs, butt, face, everywhere. I had memory loss- I even had to pull of the road once while driving because I forgot which side of the road I should be on. I was so irritable and moody that i even scared myself. I was obsessive about cleaning my house, and i could smell anything (which can be a symptom of dementia)- I had it all. I couldnt focus and it consumed me. My husband even threatened to take my computer away because he could not handle me on it. I was constantly looking up symptoms etc...

Please take it from me- you dont know if you have it until you test and you have a 50% chance of being NEGATIVE. Please try your best to not let it consume you. It can take away so many good years- it did for me.

Look up Benign muscular fasiculations. I really believe now that the stress from living at risk can do wild things and I believe that is what i have. I still have twitches but they dont make me crazy like before. I still am forgetful but chalk it up to being a mother of 4- and caring for 2 siblings and working full time as a nurse. I still have anxiety and obsessive compulsive issues but so do many of my friends. When they used to say to me, "i have that too." I would get so mad because i would think- they dont get it, they dont know what it is like to live at risk, what are the odds I could just have anxiety and ocd like them- it has to be HD cause I am at risk for HD. Well what do you know- I am like them- they were right.

Because we live at risk we blame everything on HD. Even my sons seizures- I thought- what are the odds my son would have seizures and there is no epilepsy in my family- it must be HD- I gave it to him. I literally had a nervous breakdown and my doctor was going to admit me to hospital. I was a mess. All because I was at risk. GO figure- my son has benign rolandic epilepsy which turns out is very common in young boys and he will grow out of it. I never would have thought this. I always thought the worse.

I will keep you in my prayers and hope that you too will get the results I got and if you dont you know that all of us here are fighting this disease with everything we have. I hope I have helped you a little- please dont diagnose yourself because you could be very wrong.

Also, we have to somehow stop beating ourselves up about having children and the guilt we feel. I also went through that. I felt like I was so selfish too- I have 4 sons ( 13, 11, 8 and 4) so I had them through all this. I continued to have them even when I felt i may have had it. It is like we live in sort of denial and the need to have a "normal" life like everyone else. It is the life of some of us with HD. It is a very difficult life- and no one can really understand it until they live it. Yes, at the time if I could have went back - I would have go ttested before children but i didnt- and that is what I did. That really doesnt make us bad people- we have to let that go. Believe me, I truly know what you are going through. If you ever need to talk I am here.

Stella
I am so happy for you! Everyday I wake up and think about you when I look at my son, because your story gives us hope. I love my son so much and even if I did get the prenatal testing, and he was positive for HD I would never ever have aborted him. There was no way in hell I would have done that. When the doctor told me my options for the testing my husband and I said no at the same time. There was hope with me being pregnant and so much joy and excitement that I just wanted to be happy. We both did. The day he came to us I was the happiest person in the world and I held him so tight and prayed to God that if I had it please please don't let it pass to him. Ever since that day I have had major twitches and mental depression and crying episodes. I am definitely a different person now. I am a Mother and I am scared that I will not be able to take him to the bus stop or go to school plays, or anything for that matter. HD has been in my family a long time.
I remember my Grandmother having it and seeing her twitch and have mood swings towards my grandfather and Mother. She never did anything like that to me, just them. I saw her go thru it and her sisters and now my Mother. I have feared this disease my entire life. Both my Mother and Grandmother had HD bad. It was so horrible. I just have a very strong feeling that I DO have HD. I just know it.
Last night my toe twitch outward and I can't even do that motion trying. Also shortly after that my finger twitched and I feel them ALL over my body. I shake at times, like tremble. I get weak and depressed and have panic attacks and anxiety attacks, and when this happens I hold my son and talk to my husband and usually the comfort of the 2 of them helps me regain my courage.
I am hoping that I will have the same outcome as you, but unfortunately I do not think I am going to be that lucky. I definitely am going to get tested I just don't know when or how I will pay for it. I need to plan this.
Your story makes me smile every time I read it and think about it! I love hearing it and I am so glad that you don't have HD. Did your Mother or Father have HD? Thank you again! I will definitely keep in touch with you....you give me hope and make me smile!

Shar
Thank you! You have a good attitude about life, I am going to try to do the same.

Michelle
I am sorry to hear that your son is at risk and that your dear husband passed away. I know that must have been so hard for you. I am glad that you got to share those precious moments with him and that he could still laugh after all that he had to go thru. God Bless you and thank you for sharing this with me. I read your post and cried because I am touched by your kindness and your loss. Thank you. Lets keep in touch! (BIG HUG)

Papple Juice,
You're so welcome! And big hugs to you, too! I keep all of you in my thoughts and prayers every night, because I hate to think of anyone suffering so . . . we'll definitely keep in touch!!

Sounds good to me!!!!!

Papple
Just one more thing- I truly believed I had it too. I had this strong feeling deep inside- I promise I did. You really dont know. I am glad I give you hope. I pray that helps you get through this tough time. It took me 2 years to get my results because I was so convinced.
My father died of it, my brother died of it (suicide) and my other brother lives in a nursing home and is bed ridden- I am his primary caregiver. I have also grown up with it all around me- many cousins also who are like siblings to me. We have feared it for so long and with each birthday it becomes more real- with each twitch, with each everything- it takes over us. Please have some hope. You may not have it and if you do- you will be okay.
Thinking of you.

Wow your HD history sounds like mine.....it is very scary. I am so so happy for you. I needed your courage and words of wisdom in my life....thank you. I am sorry that you had to go thru this as well. I am sorry to hear about your Father and Brother who killed himself, and your Brother in a nursing home. I am so very very sorry.