I have been dating my BF for almost 4 years, he is amazing. He helps me raise my 2 children and loves them as his own, when I look into my future I see him there. He told me about Huntingtons about 6 months into our relationship, he informed me his Mother has the dieses and that he is at risk. I met his mother who lives in another province about a year into our relationship and while I could see she had Huntingtons it wasn’t a bad as I had expected. Last week we got a call from his Mom that her brother was hospitalizes in our city and her and her sisters were coming to see him. When she arrived I was shocked at her condition, I could barley understand what she was saying and found it hard to sit beside her on the couch with her consent movements. We went to visit his Uncle in the hospital a few days ago and again I was completely shocked a 51 year old man in his condition sitting in hospital refusing any treatment just hoping and waiting to die.

Reality hit me right in the face, my BF is 31 and this could be him in 20 years. I am only 27 years old I have my whole life ahead of me, we have plans to move into a bigger house, go on family vacations, get married. I am so scared that this man that I love and want to spend my life with won’t have much of a life to live. I'm scared of the financial burden of taking care of him and my kids. He does not want to be tested and honestly I don’t want him to be tested either. It would be a death sentence for him and in some ways for me as well.

There has been a lot going on in my family lately where I am supposed to be the support person, but all the sudden I need the support and I feel like no one is there. Its like they say “I’m standing in the middle of a crowded room screaming and no one even looks up”. That’s exactly how I feel!!

Normally my BF doesn’t talk and tries not to think of HD but seeing his mother in her condition and seeing his Uncle has really got him thinking. I am trying to be there for him 100%. He said to me yesterday that if I wanted to run, he would understand and he wanted to make sure I knew it was ok and he would understand. I asked him if I got cancer tomorrow if he would leave to which he responded NO, I just said exactly. But the truth is I don’t know if I'm made for this. I just so badly want him to be healthy and for us to get married, raise my kids and us just be us.

I have NO IDEA what I’m doing!!

Everyone has a different opinion on this.
My wife has H.D....life is not easy due to that fact.But I love her and will probably die a little earlier myself for all my sufferings in relation to that fact.
But for a guy like me life is not easy wotever....what we should do is live here now ,be happy togther now...yes financially there may be problems ,always a worry.
Wot I do think is that at his age he should find out if he has HD or not.
Then you can both make an informed decision.
But of course he may be affraid of getting checked.
So wot can a person do in that case?
My wife is one of 4 sisters,2 wanted to know the score two chose not to.
I guess its the individuals choice.
Take care.
Janta.

Hi Yanta.

I feel what you are going through, and most likely there are many, many loved ones here who have been or are going through the exact same doubts. It's a very tough and personal decision requiring a lot of soul searching. The caregiver role is not for everyone, and considering bringing your children into the mix is probably part of your dilemma. If you are not sure if you can bear the caregiver role, it might be better to decide that now rather than 10 years from now, when you feel like you are deerting a loved one when he becomes symptomatic.

What makes this so hard is that he has just as much of a chance of living a long healthy life as he does being HD +. Would you regret walking away if he ends up being negative?

Having lived through my husband becoming symptomatic, going through a large personality change, becoming aggressive, losing his employment, being committed for a while to a mental hospital for aggression, and then stabilizing, I can say with some surprise we've emerged from the dark years relatively well. I'm lucky to be in a health related field, so I can understand some of what his system is going through. I am far far from perfect. I delinitely have my low days, but just as many good days. I have come to expect different things from life. As his needs change, I am learning to change my help for him. I put family before things. Yes, we have financial difficulties, but we make it through.
At the end of the day, I can sit on the sofa with my husband, shakes and all, and hold his hand an appreciate just how much or love has grown since this all started. It takes a lot of love and patience. You mention that you could hardly sit by his mum because of her shakes...but you don't have a relationship with her. She is a stranger, so to speak. As caregivers, we come to accept what HD throws at us. You'll need to dig deep to see if you have it in you, but remember you love him, that will take you halfway.

Patty

Together with some of the families at our support group, we participate in educaltion panels to the Pitt Medical School and genetics counselor students. One of our members put together this documentary with our stories. Rusty and I are featured. I hope you like these stories of people who are living with and caring for someone with HD.
[www.youtube.com]

Patty-

I agree with your article. There is alot to be said being with someone for years and just holding hands on the sofa and watching TV.
I also feel he would be here for me if I had needed it.
I watched the Youtube video. It is very good. Thank you.
Sharon

Yanta, I think you answered your own question. If you are truly in love with the guy and after proposing the cancer question that should tell you a lot. No, it won't be easy. So many people if diagnosed present so differently. There is always as good a chance he is not gene positve. I've read many post as a pHD and really worry about losing my wife in the process. I know she is with me and she is my support. It sounds like your boyfriend has a lot yet to give.
Best of luck,
Mike

Ha ha ha, Sharon.... Yes, I was long winded....but is it really an article?!? Well, I've been looking for something I can do from home. Perhaps I'll become a writer.

Thanks for the compliment on the video. Rusty very much enjoys telling his story to anyone who will listen...Did you love the line about the insane asylum? I nearly fell over. He never was very PC in his word choices, even before HD. LOL.

Mike--Your fear made me think of our situation. When Rusty attacked and I had to call 911, they took him away. I thought, that is it, he'll never be part of my life again. I still felt responsible for his well being and advocated to send him to a hospital rather than press criminal charges. I moved back to Pennsylvania with our children to have the support of my family. Even through it all, I loved him, and the kids loved him. I worried that our marriage was over, after all, I had him committed! Looking back, it was the best thing for him at the time. He was very depressed, and angry, had he been in the community, I fear for what he might have done to himself or another person. He didn't want to be there, but he was safe, so I could focus on keeping the kids happy and healthy.

When he was ready for discharge, he went to a group home for several months. This was a good testing ground to see if he would remain aggression free in a less structured environment. The kids would Skype him every day, and we would visit when we could. It was 600 miles away at this point. We soon came to realize that he was doing well, and could come to live with us. I think he knows that he has gotten a final chance. He's very compliant with his meds. He doesn't do much around the house, but I don't mind. He also doesn't ask for much.

I guess I've gone into article mode again. The point I am trying to make Mike is you and your wife will have some rough times. There will be times she will feel she cannot handle your HD, you may or may not be aware of what is troubling her so at the time. Try to stay open and honest to each other. Believe what she is telling you about your symptoms. If times happen where you need to be apart for a while, know that it doesnt necessarily have to be the end, just some space she needs. Make sure she has support as well. She is welcome on the message board, or a local HDSA group may be good. Good luck and live well.

Patty