*For purposes of staying anonymous I'm not revealing my name*
I am 21 years old going and going to college currently. I live with my father right now while going to school. My father was diagnosed with HD roughly 5 years ago. Around the same time he was diagnosed my parents divorced. Sometimes I feel like the only reason my mother divorced my father just because she didn't really want to deal with the HD and wanted to move on with her life. After my parents divorced and I was aware I had a 50/50 chance of getting this terrible disease I couldn't help but think about my future. Do I have the disease? The more I thought about it the more paranoid I became. Everytime I would have a little tick or lost my train of thought I would instantly think of the HD. I feel like this is driving me crazy. To make it worse every morning when I wake up I have to see my father and the disease. Don't get me wrong, I love my father, however like most of the people who know of this disease it can be hard at times. I've talked to my brother about the disease all the time, although it seems he just tends to tell me what I want to hear. I'd tell him that I sometimes I twitch and he would simply respond "well everyone twitches, or maybe its stress." I feel like I am experiencing more than one symptom of the disease, however I don't think I could ever bring myself to getting tested. I used to be so goal oriented and I felt like my life had a specific plan. After my father was diagnosed I feel that I have slowly drifted downhill. I just tend to think about the worst situations possible.
Recently I took a psychology class. The class made me wonder about life and the afterlife. My teacher asked us one time, even though it had nothing to do with psychology, "where do you think the soul is located? in your mind? in your heart?" It made me wonder. If your soul encompasses your personality, memory, and even physical aspects of yourself onto the afterlife what happens to people who have mental diseases? So what happens to my father? He's losing everything and there is nothing anyone can do about it. I asked myself the big questions like, "Is there a god? how would he allow such horrible things to happen?" My mind does nothing but piece together unfortunate events which lead to me thinking there is nothing after wards; I have lost all faith.
To make things worse most of my family has seemed to abandon my father. It isn't that they won't talk to him, it's just that things have changed. I remember Christmas, it used to be so fun for everyone, we all laughed and had a wonderful time. After my father was diagnosed it all changed. Every Christmas is so depressing it's almost unbearable. My grandparents sometimes show up to visit my father but then promptly leave. My grandfather can't even look at him anymore. This makes me think of a terrible future. Why is it that 90% of people when shit hits the fan all anyone can do is think of themselves? All I can do is watch. Watch as my dad loses his family, his friends. Almost no one can stand his company for more than 30 minutes. I ponder if the day comes where I am diagnosed, where will my family be? where will my friends be? I can't help but know that deep down that they will abandon me. Maybe not right away but eventually it will happen, just as the earth rotates. No one deserves this torment.
I do have friends and I do hang out with them regularly, however I feel like I have lost faith in people. I feel darkness surround me, every time I try to think positively, some event will happen, even if it's not directed towards me it will change my thought process back to being negative. Recently one of my good friends was betrayed by his friend that he had known for years. When something like this happens it just reassures me that I can't trust anyone. I don't expect anything from any one anymore. There is too much hate in this world, too much injustice, pain and suffering is all I now know.
I haven't cried in years. I went to a funeral last year, it was my first. I knew the person who had died but I hadn't really been in contact with them in several years. I witnessed as people around me cried. The stories I listened to at the funeral were depressing, yet I didn't cry. I felt numb and hopeless. The other day I tried my hardest to cry, I went to my room when I was particularly down. I tried thinking of all the things that hurt me in the past. I wanted it so bad, I just wanted to feel life again. My eyes began to water but I couldn't form a tear, then I felt nothing but numbness. I sometimes feel emotionless, in situations where people say things like "oh that is just so terrible"; I just think about saying "you don't know the half of it." Yes, everyone has their issues, their pain and sorrow and yes, I am empathetic, however I it's hard to feel sad about their situation just as I expect everyone to not really care about mine.
A couple years back, right after my father was diagnosed I was drinking with one of my coworkers and his friend. We all got really drunk and were having a great time, until I started thinking about my father. I told my coworker the story of my father and he said "wow that's terrible, I'm really sorry that happened." The next day when I talked to him at work we got into a conversation about the night before. He said, "last night was so fun, it was just annoying that Dave started talking about his dad or whatever, I pretended like I cared but I really didn't" *he laughs*. I didn't say anything, he was so drunk he didn't even realize that I was the one telling the story not Dave. Just another life lesson I guess.
I continue to think about what the future hold for me. All my friends are in college, most are about to graduate. When ever I ask my friends about the future, and their goals they tend to say things like,"I can't wait till I graduate college, I'm going to get a good job and I'm going to buy a BMW." I can't even think about material objects anymore. They mean nothing to me anymore. Yes it would be nice to live comfortably but it seems like they are all living a young man's fantasy. I think about my purpose in life. However, whenever I do, negative thoughts tend to creep in. I tend to think that I have HD and that it would almost be pointless for me to continue in college.
A few months ago I started seeing this girl. We weren't technically dating because she had recently broken up with her boyfriend of 4 years. After about a month of us hanging out all the time, it seemed like everything was going well. One night I was over at her place and when she was in the bathroom I heard her room mate crying. I asked her room mate what the problem was and she told me a story of her grandmother getting brain cancer. I tried to comfort her and told her about my father's HD hoping that she would feel comfort that I felt her pain. I even told her that I had a 50/50 chance of getting the disease. Big mistake. About a week later the girl I had been trying to date started acting funny. She would take forever to return my calls, and cancel dates we had planned. One night I was invited over to her place, not by her, but by her room mate. I showed up hoping that she would be there. Her room mate told me that the girl didn't want to see me anymore because she was trying to work things out with her boy friend. I thought that although her approach was unorthodox I would give her what she wanted. When I asked her if I'd done anything wrong, she said "well you seem like you have issues and nobody wants to be with someone who has issues, people want to be with fun people." Figures I thought to myself, I began to laugh out loud. She asked me why I was laughing and I simply stood up and said "you're not even worth the energy for me to remember your names." I ended up leaving and never talking to them ever again.
I do get depressed. I have experienced a lot of pain in these recent years, however I trek on. I wonder if there is something I did in the past to deserve any of this. I try hoping for the best, sometimes it's just really hard. Whenever anything bad happens to me my friends always wonder how I stay so calm, I guess they just don't understand and I don't expect them to and I hope they never become as numb as I do. Is it wrong of me to not get mad about anything anymore?
I know that it is my struggle and I shouldn't really burden anyone else with my problems. I just hope that maybe if someone reads this who is also feeling pain they will know that they are not alone.

Welcome.

You are NOT alone! And don't worry about "burdening" others on this forum. I am fairly new here, but have witnessed how kind everyone is, even though everyone is dealing with stuff.

I'm sorry you feel like your world is crashing down. And I can understand you not wanting to get tested. But I would urge you to at least see a doctor about your depression. There are medicines that can help with that, which also have some benefit for HD. I would encourage you to find a doctor that you can trust, and talk about your risk, and the pros and cons of being tested. It seems to me that having an explanation would be beneficial in some ways, especially if you could get a leg up on the depression beforehand. And wouldn't it be excellent if the test ruled OUT hd? Remember there is always that chance.

Whether you go in or not (and I REALLY hope you do!), I hope you can find other ways to improve your mood. I was in a really sad place 1-3 months ago when it was really sinking in that my mom had HD, and about my 50/50 status. But exercise, finding other positive distractions (like planning my garden), finding pro-active things that I can do (like eating blueberries & green tea for my own brain health + trying to improve my relationship with my mom), finding just a few trusted friends to talk to + time has helped me. Oh yeah and a glass of wine before bed. But alcohol can have negative affects too, so you want to be careful. I'd try the doc first. Please take care of yourself!

You are not alone.... many of us here have felt the same things, thought the same things. I don't have answers for you, but i will tell you that your post may help others, as you say in your last sentence, and at the very least, take some comfort in that. With that knowledge, that will also help YOU.

My niece is also in similiar circumstances - every twitch is a symptom, every ache, every sleepless night, and all i can do is tell her and show her how much i love her, and try to make her understand that i am there for her, and always will be as long as i am alive. She knows this is true - i have never backed away from my four brothers and sisters that were HD positive. Three of them have passed away now, one being her mother, and she knows that i mean what i say. I don't know if it helps her, honestly, to know that... She thinks of herself as a burden.

There is tons of support here, and you will hopefully find it helpful as we all do. You can know that we are all in the same boat - HD knowledgable, experienced, and caring to all who come.

Take care, and hugs to you,

Suzanne

First of all, welcome. I'm really glad that you've found us.
Then, you touch a lot of issues on your post that we discuss here on the daily basis. I thought you would like to know that so that you know you're not alone at all. We all understand what you're going through because we all go through very similar stuff here: the fear of being alone if you get sick, the lack of support from other family membres, the feeling of loneliness and that nobody really gets you, the difficulty of trying to be empathic towards other people's problems, the fear of testing, the career decitions, the fear of being already symptomatic (and believe me, in most of the cases IT IS STRESS), etc.
It is clear that you're dealing with a lot of things for somebody of your age. What I think would be good for you is to come here and read about how others have dealt with the same issues you're dealing with right know.
And then whatever you want us to help you with, somebody is always going to be here for you.



Edited 1 time(s). Last edit at 01/22/2010 07:43AM by Luz.

I can tell you have been bottled up for a while, and feeling like you are on an island.

You are not, and your experience is shared by a LOT of people in your same predictament.

I can say with confidence that what you are going through can be sorted out if you give it enough time. The people here know full well all of the issues you mentioned.

Please keep watching and posting.

Hey kid

First, I have only recently been writing on this post. But I have been lurking around for awhile.

second,change your topic to on the path to friends!!

Third, does your dad have a wish to be the last generation with the worries of being HD +. If he does there are a ton of trial therapies out there. I can never remember the name of this drug!! But the trial name is ACR16. I don't know what your circumastances are or where you live, but I had great results from that drug. It gives me hope for the future. Maybe you guys can check around and see if you can do something possitive for all man kind!! Well maybe just us.


Welcome
Bridget

Welcome, I am also at risk, like you, except I'm WAY older, 34! About 1 year ago, I was having twitching (ALOT). like small, muscle twitches. I was stressed, thinking it must be HD, but people told me here that twitches aren't usually a symptom, it's more like movements. That calmed me some and the twitches pretty much went away. I do still have them however at times, and my lower eye lid started twitching some, and it does scare me, and like you I wonder is this the begining or not? I think stress and anxiety can overtake you sometimes....Not that it couldn't be possible, but you are just 21, so doubt it would be symptoms, how old is your dad? and when did his symptoms start? Just want you to know you are not alone, if that helps you any....I was where you were, and I do have my days where I get down, but I feel so much better now. exercise, taking fish oil (don't know if it works for sure for HD, but makes me feel like I'm doning all I can), relaxing, enjoying each day as it comes, being spiritual have helped me. I choose not to test right at this moment, just because I'm the type, that if I was positive, I would automatically start thinking I had symptoms, I have to change this way of thinking first. Good to meet you here, keep coming.

Hey gloom and doom

Go read the post maggie just put up! That's the drug I was talking about!! It really help me too. Thats the one that give me hope about childrens future in a HD world!

Bridget

ps your co-worker and ex-girlfriend have no hearts. I am sorry you had such awful experiences so young.



Edited 1 time(s). Last edit at 01/22/2010 08:58AM by Bridget.

You have now seen from the responses to your post, that you are NOT alone and have found the best place to come for advice,guidance and most importantly support. There are many here with so much more experience than I, and a genuine gift for writing with compassion and forethought. These thoughtful posts will help.

While not a particularily religous person, you raised the point of questioning your faith and beliefs, "how could God do this". There is a book titled "When good things happen to bad people", given what you said, try giving it a read, it may help you find perspective on that particular issue.

Above all else, I echo the other comments in that a number one priority would be to consult a doctor in regards to depression, it can be effectively treated when necessary and may be what is required to get you started down a proactive path.

Wish you all the very best and so glad for you that you found this community.

Oops......check the title of the book, sorry a bit of a brain blip, the book is titled "When BAD things happen to GOOD people", who the heck would want to read the other one....

I have walked this path called HD for many years and I have never noticed the crossroad called "FAILURE" I have however found "HOPE" I took that path and found "HOPE FOR OTHERS" I may someday find "HOPE FOR MY FAMILY AND MY SELF". My advice to you "LOOK UP"

Peace On Your Journey
Ron C.

I'm glad you are here and I have some thoughts I want to share with you. First, I would like you to get treatment for your very understandable depression and find some support. You are right in that it is very difficult to find people who understand. That's why it is important to find friends in the HD community. We are here for you, of course, and you should also look into finding a local support group. If you are in the U.S., there may be an HDSA chapter with a nearby support group you could join. You should also consider joining the NYA, the HDSA group for those under 30. They are a great bunch of young people and you are sure to find a welcome and friends.

Second, you are doing some work that most people don't do until later in life, thinking about the meaning of life and that it will end some day. It is only recently in human history that people could live in denial about disease, loss, and death as your friends and coworkers are doing. Historically, people typically lost siblings to disease epidemics and grandparents when they were just children and people died at home. It wasn't possible to live several decades without losing anyone you love as it is now and when someone does die, it's away - in a hospital or nursing home. Our culture is youth oriented and is not good at respecting the elderly or knowing how to face chronic illness or death. We don't know what to say to people facing these issues and so we turn away because we are uncomfortable.

One of the things we talk a lot about here is how family members and friends who ought to be there for us are not. But if you can be a brave person who can be compassionate and caring and helpful without letting it ruin your own zest for life, you will be a much healthier, much happier person than those who want to party now, avoid all sadness, and pretend they will never get old or sick themselves. I have met some of the forum members here and I can tell you that those who were there for family members throughout their illness, like Suzanne with her three siblings or Paula with her brother, are some of the happiest, most well rounded, wisest people I know.

Of course you are scared by your at risk status. It is scary. But think about how you will be kicking yourself if you sleepwalk through your life for years and then discover that 1) you are gene negative or 2) you are gene positive but treatments have become available.

I suspect that despite your current depression, you are a fighter. If that is the case, there are a lot of things you can do now. A good Mediterranean diet rich in antioxidants and Omega 3 fats and exercising to fitness are both good bets for postponing onset. There are observational trials you and your father could participate in such as COHORT. You could get your father in some trials of some very promising compounds. You are not powerless against this disease. Together we are already making a difference and we can do even more.

Please keep posting! We're here!

Stop hanging around with morons for starters, don't pour your heart out to drunk co workers, pour your heart out in here with people who understand. Stop seeing girls who haven't grown up emotionally yet, find girls who have enough about them to not get caught up in pathetic drama.

Unfortunately the family issue is a tough one, people tend to stay clear of the man who's dying slowly. They shouldn't of course, they should spend as much time with that person as they can. But people get stuck in their ways and it's easier for them to cope by avoiding the issue.

I'm 21 too, tested positive aged 19, my dad died with HD in September 09. There's plenty of us around your age who have been through this, experienced what you've experienced. You need some support that's for sure!

If you're on Facebook let me know and I'll add you. I've got hundreds of people your age on there who are in HD families I can suggest for you. Might be worth checking out the NYA too.

Tc, Matt

[www.hdyo.org]

Marsha you put it so much better than me

[www.hdyo.org]

I want to reiterate what others have said already-you are not alone. We all understand what you are going though because we've gone through it ourselves. (and continue to...) You will find friends here. Stay plugged in.

NYA is National Youth Alliance for HD.

I agree with just1moreperson. Confiding in uninformed immature morons will just get uninformed immature moronic responses, that have nothing to do with you, your personality or HD.

Get in touch with the NYA, with other young people who deal with HD themselves or in their family. Find as many groups as you can, online and in your locality who deal with HD and don't be afraid to voice your concerns or ask questions. You're not alone in dealing with this.

Work towards a positive outlook. Whether or not you have HD and whether or not you decide to get tested, you need to deal with your depression.

Good luck. You sound like a lovely, sensitive young man and you have a lot going for you.

HI there! Nice to meet you! Im also 21 and my mom had HD. I know how it feels to live in fear everyday. I know how it feels to think everytime to make a mistake or do something, to feel like its hd symptoms. I do that constantly. However paranoia is so strong! and everybody at risk does that. However, I made the decision to get tested last month. I was hoping I wasnt positive, and in my heart I felt i wasnt going to be. But I am! I am still trying to deal with it on a daily basis. I wish I wouldve gone into thinking i would come out positive. maybe it wouldnt have been such a shock. If you ever want to talk email me freshwaterclub@yahoo.com

Welcome.
Carla