what if someone has CAG count 42
hes 33 years
can he get married and live a normal married life?
what are the implications
what to expect?

You never know what to expect, moon. My husband is 33, CAG 42 and we have no idea when HD will hit. His mom started after 50 but her numbers are too different to take her as a reference. So, the only thing to do for us right now is to enjoy the good years, make serious plans for the future and living a healthy lifestyle.

Thanks to the observational studies, we're on our way to understanding the full course of the disease, so in some years we might be able to predict how many years a patient has before his symptoms become manifest. But we're not there yet.

I didn't marry the guy yet
I'm thinking what's the right decision
I feel guilty to say no and move on
I want to support him
I feel so bad for hurting him
What should I do

We can't tell you exactly what to do, moon... we can only point you to where the information is for you to take an informed decition. I know you've read about HD, but you need to read about the real stories of real people dealing with it and for that you need time. Take your time to go through this threads, learn about and from other people's stories. Many of the issues that worry you now have been discussed through the years. So, take the time to examine what others have said and done.

You shouldn't feel guilty about considering not marrying him. It's normal you do and I know I would have had I known my husband was HD+.

I feel your pain and understand it. It's not an easy choice.

Right now you're very anxious (the fact you post on multiple threads shows it) and you would like some instant answers to all of your questions, but things are a lot more complex than that and you need time to figure them out.

Just take your time and take care,

Luz.

Moon, The answers that you are so desperate to get do not exist - meaning that no one knows the course that your bf's illness will take, no one knows what you are comfortable taking on - you don't know what you are up for so how can others. I don't mean this in a mean way - I just mean that there is no magic answer. You have to educate yourself about HD, about what it means to have a spouse with HD, share kids with someone with HD... you have to look inward and see what you are up for - what you can live with. If you find it is not something you can handle you can't stay with him because you feel guilty or sorry for him. You can be a true friend to him for the long haul... right now just learn - I think your answer will come clear to you as time passes. good luck - this is a problem that no young person (or old for that matter) should ever have to face.... but life just ain't fair!

Well Hope.. that alludes to what I was saying in another thread... HD can look different by our choices and our management of it as much as the disease itself. Untreated, undiagnosed, and not cared for.. it probably looks very much the same from one case to the next. Factor in pre-diagnostic testing vs. a diagnosis out of the blue at midstage... children in the house or not, age of onset and prior life experience and you start getting subsets of similarities. It wouldn't be any different with untreatable cancer... one person treats agressively, the next more passively, one goes for holistic and so forth... maybe even goes for assisted suicide. You could say every case is different. but they are like "snowflakes different"... it's still all snow.

You also can have one person who spends too much with a credit card, one who takes to chronically gambling on line and one who smokes with no breaks.... different outcomes for the root cause.. impulse control. So one can say each case is different.. or say each is really the same. To me they are the same. They all create a money problem, all by way of the same issue with HD. What's different is one may burn down the house, one has to worry about gangsters collecting, and one has bill collectors calling. Then it's different. But I am not sure we want to be too different from the next person and feel like no one really gets it... which is how we often do feel. Also it sort of adds to the "worst disease in the world" thing. Not that it isn't in certain ways... or at least uniquely bad. But for various reasons it almost feels like people want that badge on.

The reason I latched on to this was when I first got online we all were a bunch of sad sacks. And we kept reinforcing that almost every day. It wasn't until coping strategies kept emerging from people who really weren't all that different, and they worked, that we started to see that HD is bad in batches of time, and not so bad sometimes.. at least not for it to be the worst disease ever. For the near term, it's bad enough... but some of it we can cope with. And my problems, someone else had as well... and I am not that different... and I am glad I am not that different. Yes we have unique qualities and personalities involved... and yes some people do end up in very unique circumstances. But that's not because HD is different.. people are different. Doctors are different, family chemistry is different, laws are different. But that's just part of each case of living is different. I suppose at this point, pointing all this out might be close to moot. So much of the common place rhetoric has slowed or stopped. But I kind of watch for it anyway. Like I expect some sort of death spiral back to HD "monsters" or "dragons" stuff. Probably over sensitive. But there were a lot of hard fought battles over some of it too... and I think the better attitude prevailed. So just sort of vigilant over it. To me anything that kind of hints toward isolationism feels a little threatening to me.

But I am of course a different case.

I hear that loud and clear! the sighs are almost audible through the computer when someone FINALLY finds folks here who can really relate... for me it was and is the greatest comfort. I wish my husband would get on here - I think he would benefit tremendously. yes cases are different like addictions - there are countless addictions but they all are addictions and share many commonalities - which is why there aren't different rehabs for different addictions - everyone needs the same treatment because it is the same sickness. I think I am just in awe of the brain and how many different things can alter the path of someone's HD.

I hear that loud and clear! the sighs are almost audible through the computer when someone FINALLY finds folks here who can really relate... for me it was and is the greatest comfort. I wish my husband would get on here - I think he would benefit tremendously. yes cases are different like addictions - there are countless addictions but they all are addictions and share many commonalities - which is why there aren't different rehabs for different addictions - everyone needs the same treatment because it is the same sickness. I think I am just in awe of the brain and how many different things can alter the path of someone's HD.

you're right Luz I'm very anxious I'm reading the various posts and trying to understand and make a decision
I wish all of you the very best
Thanks for helping

Eric Wrote:
> You could
> say every case is different. but they are like
> "snowflakes different"... it's still all snow.

Well said!

HD is disease that can last decades. It moves at different rates of progression even within the same family. It affects the brain. This means it can do many different things to those who suffer from it. To know a couple people with HD does not mean you know all people with HD and how they are affected by it. We are not the same. We are not all violent. We are all just very misunderstood.

-Brett T

Brett, you are right, if someone just knows one or two people with hd, those two people would be very different, but, when you join a large community like this, after awhile, there are certain things that we can see that we all have in common. There are some things that are different. For instance, most people with hd have trouble seeing their own symptoms, i happen to be different in that respect. If you only knew two people with hd, and both had no trouble seeing their symptoms, you would say all people with hd are like that. But, when on this forum, even me, with hd can now say, most people with hd have trouble seeing their symptoms, most are in denial. I could get insulted when someone says that, but i don't, it just means, in general, this is true for most. Dif brain cells are effected in different people at dif times, that's true, but eventually, their is an average of how things can go. We can all have trouble with impulse control. For one person that can be gambling, for another being promiscuous, for another food, for another just saying whats on their mind without buffering what they say, we all have loss and feel sad, we all begin to have loss of balance, there is so much more that we have in common as a large group, and yet we have our indivual differences in how the disease manifests in us. So, i don't think this makes you wrong, or others wrong, both are right.



Edited 1 time(s). Last edit at 08/29/2010 11:48PM by Barb.

Barb,

This is not what I wrote:

"...if someone just knows one or two people with hd, those two people would be very different."

Right now we have no treatment for the disease, just the symptoms, and we need to be treated individually for the symptoms that affect us, not ones in general.

We have HD in common and a need for a cure, we don't need to take it any further than that.

If one wants to suggest a lifestyle and certain supplements ( that have shown not to be harmful) then I have no problem and appreciate it, but when people start writing even a ten year old can spot someone with HD, and it is likely everyone with HD becomes violent, I don't think they are right, too. HD needs to stop being defined by its late stage. This has been done long enough.

Brett T



Edited 1 time(s). Last edit at 08/30/2010 04:18PM by Brett T.

It wasn't just someone, Brett, who said a ten year old.. It was me and and my son who has seen a ton more HD than most people.. and he CAN do it. Not some random ten year old. He's 15 now and can do it even better. We see twenty of them all the time aside from family. We don't even go to a walk and try and figure out who has it. We know who has it and don't even consider it. And who said someone with HD is LIKELY to become violent? No one.. that's who.

Also who defines it by late stage only? Late stage is not what most people have much to say about.. it's early and mid stage that are the problem times. People who are having trouble with moods, depression, anxiety, memory and doing their jobs and managing their relationships. Those are not late stage problems. Late stage problems are incontinence , swallowing, mobility and bathing issues. Communication issues. Do you see people defining HD this way?... No. It takes up far less of our time than all the rest. Even nursing homes or home health care take up very little of our time, even though that will actually be needed up to 50% of disease process. It's actually the most shoved under the carpet part of HD since we won't be curing these people. And it's all so much about cures for you Brett. So I am not really so sure what it is you actually dislike?

Do we not spend a lot of time talking about being at risk?, or testing? Have we not tried to get a bill passed for those that may even benefit in early stage? Do we not spend a ton of time with pHD's here with HD who are not late stage? And are not more posters than not, not at all involved in late stage HD? Who are the trials for? Not late stage HD.

Find for me Brett anything that really addresses anything that I am going through and my wife, Brett, in last two months of postings. And do you personally think we should advocate even less than that/ for you? Do you advocate for my wife and me? Or would that be too much negative attention of HD for your liking? You think HD is poorly defined?.. If you need residential placement... they definition for that is you are not manageable. That is what is misunderstood. The rest we cover all the time.

You certainly are not very appreciative of the many millions of hours collectively spent for your benefit Brett which included defining how to think about HD, for whom and when. Not just the people here you see.. but many who have come and gone before you.

This whole thing is to understand HD and ultimately it's all for you Brett and your family. It's sure as hell not for me.. not for Marsha and not for a lot of other people here. We get crap out of the deal. Me and Marsha should be over on the Alzheimers board making sure we are taken care of now. We are gonna be buried before most all of the at-risk people here. But we make sure that people do try and understand HD, and the people who have it. First so they survive, then cope, then actually manage HD so everyone is as ok as possible. Not perfect Brett. It's not going to be perfect for anyone.

Brett, it pisses me off, that you addressed your comment to me, while taking a shot at Eric's son. You DON'T take a shot, at a boy who's been through more hell that you've ever been through in your life, and was not deserving of that. What a low blow. I can see why Eric just ripped you a new ass...



Edited 2 time(s). Last edit at 08/31/2010 02:51AM by Barb.

Looks like we all need to sit back, have a cold drink and a rice crispy treat and calm down a bit.

Eric - "And who said someone with HD is LIKELY to become violent?"

You, when talking about rage: "I would not say that everyone with HD is abusive... on the other hand.. that it is a real possibility."

Eric - "Also who defines it by late stage only?"

Historically and still today it is difficult to be diagnosed for having HD, or being considered symptomatic until physical signs of the disease are too hard to ignore. When talking about how phds have a lot in common you said this: "My son at 10yrs old could pick out a new HD resident at the NH in two seconds." I simply do not find this to be a valid example of whether this is true or not when seeing the bigger picture of what HD is.

As for the rest of what you wrote I would say you have no idea of what I am all about. You do not know me, Eric. If you perceive you get crap out of the deal maybe you should take a break from it, or stop being so vigilant in protecting your agenda of what should be written here. This may help you read the posts more clearly.

Barb, try to remember, before you write to me, you don't know me either. I addressed you because you wrote saying you agreed with a statement of mine I did not make. You have posted to me a few times ( almost all of them ) in a less than cort?ge manner. Let's see if we can bring about an end to this.

-Brett T

Thank you Brett for sticking to your guns.

Eric-

"This whole thing is to understand HD and ultimately it's all for you Brett and your family. It's sure as hell not for me.. not for Marsha and not for a lot of other people here. We get crap out of the deal. Me and Marsha should be over on the Alzheimers board making sure we are taken care of now. We are gonna be buried before most all of the at-risk people here. But we make sure that people do try and understand HD, and the people who have it. First so they survive, then cope, then actually manage HD so everyone is as ok as possible. Not perfect Brett. It's not going to be perfect for anyone."

Your obviously a very bitter person. Maybe you do need to move on.

Brett dont pull a jl on me, and say that i said you said such and such...im not about to prove myself, other than to say i did not say you said that, or was saying your idea could mean such and such for frigin sake. Im not about to prove myself to you, i dont have the energy to waste on anyone being so petty, and picking a fight with me. And uhmmm, get off your frigin pot, if you dont like it here, and you dont like erics input here, then YOU go find another frigin place!

Barb does this mean you will not be accepting my facebook friend request? No, but all joking aside please do not bring up jl's name in this way. She is not here and this is not cool. If you have a problem with me leave it between us.

-Brett T