Heiio, this is my first time posting a comment. We've known about HD in my husband's family for 17years. His brother is 61 and is in the last stages. It's been beyond sad to watch this wonderful man die slowly. His wife is his caretaker and she has yet to seek any help. He should be in a nursing home but she refuses to do this. 2 years ago my husband tested positive with a cag of 40. Now our 3 children are at risk. My husband has 2 other siblings who were born with mental disabilities. I feel this family has been cursed with health problems. It was hard growing up in a family with handicapped siblings and then HD was added to the picture. I have a faith but I feel like God has turned his back on this family. How do I handle all of this.?Some days I just want to run away.

this is a very supportive place. People don't always agree here but you can get good info and a lot of hugs and prayers. People here have been through just about everything this disease can do. Just hold on and know that you are not alone.

Welcome Terilynn,
I go back and forth with God...so I get where you're coming from.
Stick around, there are lots of good folks on the same journey you are on, lots of love and support here.

Take care,

Carla

Maybe it will help to remind yourself that bad things happen to good people all the time for no reason. There are so many people in the world that odds are some of us are going to end up in a family full of medical problems. Sometimes that thought helps me...There's no one to blame for things like disease...that helps me cope when I get scared or depressed. It keeps me from feeling angry or resentful.

It also definitely helps knowing there are other people out there dealing with the same problems you are. There are some really great people on this forum who have been or are going through some terrible things. I hope you find comfort here.

Thanks for all your words of encouragement. It does help to know that I'm not alone in this. Noni, you say there is no one to blame in all of this. I blame God. I believe he could have intervened on this family's behalf but he didn't. Having mental retardation and HD in the same family is beyond my comprehension. I have a lot of questions to ask God when I get to heaven but by then I suppose it won't matter.

I understand what you are going thru and yes I was mad with everyone I had a horrible childhood and when I found the man of my dreams and plan to grow old with and finally have a happy life he got sick got tested and found out he had HD, it just like breaking your heart in two all your dreams for your future are gone and just go day by day, but little by little I stop getting mad and for some reason start praying let me tell you I was not very religious but I can tell you now that God had give me strenght to go on, life is not fare and we have to live and make the best of it, I have three kids at risk and believe me I am praying everyday for them, I keep thinking there has to be a reason for all this dont know yet what it is, but keep looking the bright sign of this. wish you the best and hope that some how they found the cure of this horrible HD that mark my family and the rest of my life.

I hear what you're saying. My son was diagnosed with autism at a young age and has ADHD with behavioral issues. We didn't know HD was in the family until he was about 4 or 5 months old. So now I have to worry about his at risk status too. I also have many mixed feelings about God...I HATE the expression, "God doesn't give you what you can't handle." I certainly don't agree with that. Although I feel as if I am doing ok (my hubby is asymptomatic as far as I can tell), but I know there are people who are going thru hell and you ask, "Why? Why does this have to happen to good people. No one deserves this." You hear about families torn apart. It breaks my heart. I know I should count my blessings, but sometimes the unfairness of life (not necessarily mine but sometimes yes I think this, but mainly I think about what others are going thru) makes me feel almost bitter. I really don't admit this to anyone, but I confess that I am almost envious of people who have such a strong faith. It seems to give them such strength and comfort. They say things such as, "It's in God's hands." I guess I really don't think that way, so I don't have the peace that goes with totally trusting and feeling God's plan will work everything out. It's complicated for me. So I guess I don't have any answers. But I believe I think many of the same thoughts that you do. This is another reason I'm thankful for this site!

I'm sorry...I don't believe in God. So I guess I have trouble relating...but I was trying to come at it from the perspective of someone who does have faith. >_> Even if you do believe...bad things still happen to people who can't possibly deserve them.

Sometimes I wonder if I'm the only one on the other side of the spectrum, who finds strength and comfort in not believing...

Thanks for all your good perspectives. I find them all very interesting. Noni, I totally agree with you that bad things happen to everyone whether you believe in God or not. I'm not exempt just because I have a faith. I'm interested in knowing how you find your strength. What do you mean when you you say you find comfort in not believing?
Eve, I hate that expression too..God doesn't give you more than you can handle. That's just not true. I too feel bitter because of the unfairness of life. I'm fighting with God right now like Job did in the old testament.

Well...because I don't believe there's anyone watching over us, there's nobody to blame. I can't hold onto resentment or bitterness because I've got nothing to direct it towards. It makes it easier for me to accept bad things and be ready to cope with them in my life. Don't get me wrong, I'm not totally relaxed all the time. I have awful days where I think I just can't catch a break and I just want to hide in my room and cry. But the good days outweigh the bad, and the support I get from important people in my life means a lot.

I am comforted in knowing that when bad things happen it's not because I've done something wrong or that I'm a bad person. I don't need to agonize over asking Why, because there isn't an answer out there for me. It makes me want to be a stronger person, and to help others when they need it because the universe is so big and full of things that are out of our control. We've got to look out for each other.

Even if I test negative, my boyfriend has Chron's disease and there will be hardships in our future. There's always going to be something, all we can do is our very best.

I hope that all makes sense...

Terrilynn,
I've also struggled with this over the years, throughout Ray's progression with HD and the suffering he endured. I still go back and forth a little, but do believe that through all these trials and tribulations with HD, it made Ray and I so much closer and made me love him even more and I have become a much better person with a lot more understanding . . . I almost feel like God gives you things that you need to learn on this Earth (if that makes sense). So I can see on my side, why this has happened, but I still struggle with what Ray had to 'learn' and 'why' this happened to him and ultimately how much he suffered in the end. I try to reason that it made him a better father, and he learned the love of family, support and a true bond of love between people . . . but I don't know if I just talk myself into these things. I'm so thankful now, though, that God gave me Ray to care for and love, because I couldn't imagine what life would have been without him. Well, just my thoughts . . . hang in there.

Noni, yes what you're saying makes sense. You sound like a very strong person. I wish the best for you and your boyfriend.
MJdelcon, thanks for your thoughts. It sounds like you you and your husband had a very loving relationship. I like the thought that HD has made you a better person.
My husband grew up with two retarded siblings and then his other brother with HD. All of this has definitely made him a better person. He is so kind and tender towards his siblings and in turn with others who have handicaps. It's just hard at times for him to see them suffer. My husband is a wonderful man. I'm just so sad that he too has to suffer from this disease. Life is not fair.

I too once blamed God. I did for years. My son is 18 years old. He has Juvenile Huntington's disease. I asked why God would do this to such a great kid. A child who was once happy, and now prefers to stay in his room.
My feelings with God now is that only he knows the plan in this nightmare. I tell my son, and I always have since he was small that he is a child of God, and God has blessed me to be his mother and care for and love him while he is here on earth.
When Craig started having signs of jhd at the age of 14 I cried, and was angry how God could allow this to happen? Then I wondered why he would do this to me. But I don't see things that way anymore. Now I see God has prepared me with knowledge, God has blessed me to be the mother of a true angel here on earth.
Every day, second that I have my son is a blessing. Do I know Gods plan? No. But I will trust that God has a plan, and once in heaven I will then understand a lot of things and all the whys. Until the day comes, I will love my son, and thank God for entrusting me to love and care for one of his children.

I understand it like this...God is there to hold you when things go bad, to be that wonderful shoulder when life on this earth is hard to deal with. God didn't give us HD or any other problems but he will give us strength to endure. I have a husband with HD and he is a very mean person and has been for many years, if I didn't have the strength I have from God I don't know how I could get through this. We all have to cope in what ever way we choose, what ever works for one may not be the same for another but I pray that one day there is a cure for HD because we have 10 grandchildren who someday could have HD. Sounds like there is a lot of stress in your family, I am sooo sorry, keep your head up.

I'm sorry you and your family have so many problems to deal with. Unfortunatly, some families get more than their fair share. I look at HD as an answer to several years of not having a diagnosis and needing one. I don't blame God or anyone. Before being diagnosed with HD I was diagnosed with Meniere's and Vestibular damage. That didn't hold water long. I remember during that time I would tell folks "at least it won't kill me". What if I was diagnosed with cancer and given a few months to live or even longer, would that be easier? Not in my book. I lost a sister to a brain tumor just before I was diagnosed with HD. She lived only 3 months. Fourteen years earlier she had breast cancer. She didn't blame God nor do I. She was as devoted to God as one can be and in her short battle she never questioned his plan for her. In fact the short time she was able to communicate she was more worried about her little brother. We are here by his grace whether we believe or not my thinking. I'm not the person God wants me to be but I find a lot of comfort with him and always have. I'm not in Church each Sunday but I find comfort and try to lead a decent life. Ironically, Susan died on Christmas Eve night 2010 five days after we were told it was a matter of hours before her passing. I like to think she held on as it was only minutes before midnight and Christmas Day. I am not trying to push anything on anyone here but I wanted to offer my perspective for what it's worth.

Best of luck to you,
Mike



Edited 1 time(s). Last edit at 12/08/2012 10:00AM by mikee.