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Lilacs53

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Rob, found out today that his girlfriend has Huntington's disease, which to me after studying about it, sounds worse than ALS. :( They have only been dating for a short time and today was his day off work, so his girlfriend took the day off so that they could spend the whole day together. She has two teenage children from a previous marriage that has been tested and is carrying the gene too. :( She told Rob some stuff about the disease and then asked him to study it some more and to decide if he wants their relationship to continue. That she will understand if he chooses not to. He likes this girl a lot and was so excited to get out the door to see her today.

Isn't me having this horrible disease of ALS enough? Why does my son have to go thru this? Why does she have to have Huntington's disease and her children also...why? It breaks my heart and I don't know how to help my son with this. I wish there was a crying smiley, because that's what I feel like right now.

I'm sorry to burden you all with this, but I didn't know where else to turn. From my understanding there is no cure for this disease just like ALS. I hate all of these stinken diseases they still everything from us. :( :( :(
 

Lilacs53

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I meant to say that "they steal everything from us."
 

Music67

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This must be so hard on all of you! I can't imagine a family going thru all this! My heart goes out to everyone involved.

I got engaged a year ago - about 2 yrs into my disease - and I told her at least twice in the past yr that I would understand if she decided to break it off but so far I've been blessed. . .
 

tripete

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I was married in September and found out the first of December I had ALS. My wife, had waited for Mr right for 45 years, when she finds him he is broken. I have told her that I would understand if she wants to "move on". Instead she has naught us a house near her family (we move this weekend) and her parents are pitching in to get the house ready and handicap enabled. She is still in denial as to the nature and prognosis of the disease, but still calls me her Mr right. I do not know what I would do without her.
 

Nuts

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What a difficult position for your son--I can understand your heartbreak over this. It's almost like the universe is saying here...look at this before I offer you even more. How do you make a call like that so early in a relationship? Unfortuantely, it will be kinder to end it sooner than later if he choses to go, but on the other hand, as we know from some of our family here, sometimes the love of your life is only with you for a short time. My heart aches for all of you.
 

Nikki J

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I am so sorry. What heartbreak for your son, however he chooses! A while back I had a silly debate with a physician friend about which was worse ALS or HD. He said HD was worse because of the personality changes. As he said " at least with ALS everyone still likes you". I have known 2 people with HD in both cases their spouse divorced them because they could not take the extreme personality change
 

Barbie

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what a sad post! I have heard that it is a really terrible disease. I will say that he should not stay with her out of pity --it takes a strong love to stay together thru a terminal illness, and it would be easier to leave her now than later after she depends on him. I had a girlfriend whose dad had Alzheimer's, and when it was diagnosed his lady friend of 5 years ended the relationship...she had already nursed and buried one husband and did not want to go thru it again. I totally understand the feeling. he just has to decide how strong his feelings are for her.
 

Lilacs53

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Thank you all so much for understanding and for telling me some of what you have been thru. Rob text me earlier and said that he would like to find another job to where he can have weekends off, so that he can have more time to spend with his girlfriend. I think he may be in denial and is still thinking of this as a long term relationship. His life long dream has been to get married and to have children & this is the closest he has allowed himself to come. He's 31 yrs old and she is 38...I just don't see a long term relationship between them, but I could be wrong.
 

cheerleader

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One of my best friend's had huntingtons- and like Nikki's experiences, her husband divorced her. Only the strongest can handle the personality changes. Unlike ALS, the person's mind is not left untouched! The last few years of her life, we would visit her in a nursing home in twos or threes, never knowing if she knew who we were so we would chat as if she understood but.....don't think she did. This disease can go on for years. I am so sorry for all of you - it would be kinder to end it now if it is a new relationship, but if he is deeply in love, maybe he can handle the the agony of watching the person's mind slip away. As parents, we know our kids have to make their own decisions but it is hard to watch when we know what lies ahead for them. Just hope he does some research and knows the reality of what he will face for many years.
 

skipper66

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I am torn on this one. I don't want to sound cold hearted. But, if it were my son I'd want him to end the relationship. I wouldn't want him to go through all that. I don't believe in abadoning your partner in marriage or in a crisis but if he hasn't taken a vow before God yet he can still bail out. My boyfriend before my husband ended up marrying a lady who's husband had Huntington's disease as well as her two children. They all died of it and the boy's at a very young age. I heard that her husband was beyond abusive to her. Your son would eventually be emotionallly and financially drained through this all. It is a horrible sad situation for all of them involved. He needs to sort out if he truly loves her or if he is just really wanting a lifetime partner and she is who is currently available? Then he must trust his heart.
 

Lilacs53

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Thank you both for your heartfelt messages. I spoke to Rob a little more about her today and asked him if he's had a chance to research the disease any further. He said some, but not much...yet. I told him some of what you all said along with what I read about it. He didn't know that they could lose their memory, or about personality changes or about the total loss of bodily functions. He said that he likes Amee a lot and enjoys her company and doesn't know about their possible future yet, but for now they will remain good friends. Then a little after that he told me that if he gets this Sunday off that he will see if she would like to come over and watch the Super Bowl with us. So we will get to meet her, but am concerned that as long as they keep the friendship going, the closer they will become. :/
 

affected

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It sounds to me like he is in shock and therefore some denial still. I say this because if he said he has researched it some, but didn't know about the personality/dementia type issues that typify the disease, then he hasn't really researched it himself. This is understandable, remember our feelings of wanting to know and yet not wanting to know what ALS would bring?

Maybe just play it gentle for a couple of weeks to let him get past the initial shock and start finding out about the disease and then be open to just keep talking to him.

I think that since she has now told him, their time together from now will be overshadowed by the diagnosis and the relationship has to change.

It's so hard as a parent to stand back and let your children make decisions when they are not sure of something that we feel is very clear!
 

Lilacs53

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So true Tillie, thank you.
 

Lilacs53

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Rob worked today and went over to his girlfriends house afterwards. When he got home he told us that it's official...they are now boyfriend and girlfriend...ugh. Gerard and I told him that we are happy for him. I later told him that part of me is happy, but a bigger part isn't. He asked why and I told him, because of her health...it's a dark cloud hanging over us. He understood, but said, "Mom when we are together we feel at home with each other...we are very happy when together, like we are meant to be." Amee told her kids about Rob, and her son wants to meet him and her daughter wants to wait awhile. I'm not sure how I'm going to react when once I do meet her. People tell me that I don't hide my feelings very well...my face tells it all. I understand what it's like having a death sentence hanging over your head, but once that day does come, I want to go knowing that my kids are happy, safe and secured in their lives. I was mad at God for a little over this, blaming Him for Amee's illness and mine. I'm not now and have asked for forgiveness. I just don't understand why life has to be like this.
 

affected

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I've found that things seem to 'come out in wash' with a bit of time. I know that it's far harder for you seeing your own son in this, I've had my own share of things with my kids and know how my connection to them makes it harder to sit back than others may see it.

They are only 'boyfriend and girlfriend', it's not like they just got married.

I have no idea what her symptoms are just now, but I would encourage them that he attends doctor appointments with her so that he hears the medical stuff first hand. I would put it across that it is so helpful for you when your husband can be there as between two you can usually remember far more. Her doctor is not likely to be playing down what is going to happen and if your son is in this reality he may find it hard to buy into denial of what is coming. If her doctor has any credibility he/she is also likely to directly ask your son how he intends to cope with her high care needs in the future. That may just bring it home to him.

Maybe when you meet her you can take the tactic of commiserating with her on having a progressive disease and get it out in the open between you both straight off? I'm also terrible at masking my face...

Maybe in some weird way your son is using this as a way of not thinking so much about what is happening to his mum? Again, I believe it all comes out in the wash. I hope that doesn't sound trite, I know he is in for some hurt here, but it may not be the long lasting situation it appears at this point as the behavioural issues from what I've read are early symptoms and progressive.
 
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