I've been a lurker for some time and thought that I'd introduce myself. My name is Kristine and my husband is Rob. We've been married for 17 years and have two very beautiful children, 8 year old boy/girl twins. Although we have known for quite some time due to symptoms, we just got the confirmation of Huntington's Disease today. My husband tested positive at age 38 and has a CAG score of 47. As much as you'd think this would hit us like a big ton of bricks, I think we both kind of feel a little sense of relief because we can finally move forward with our lives and stop the hiding. It won't be the big pink elephant in the room anymore, you know?

Rob has been experiencing some symptoms for several years and we have noticed things progressing. His speech slurs when he gets tired, he loses his temper easier and more often than before, he has lots of muscle twitches and he fidgets a lot, and he isn't as sure footed when he walks like he used to be.

Does anybody know anything about the CAG score? Does it have any correlation to the rate of progression of the disease?

I'm sure that I'll be posting a lot more on here now that we are going "public". Right now we are thinking about what to do regarding filing for disability. Rob has been laid off from two jobs since June 2009. We know without a doubt that he cannot work in the same capacity that he was working in before.

Thanks for letting me introduce myself and for all the very informative posts from everybody. It is so great to not feel so alone.

Sorry to hear about the test results. Yes, the CAG count does have a relationship with how soon the symptons appear, but honestly, there are better people on here than myself to answer those questions.

[hdlighthouse.org]

This link might help answer some of your questions in the meantime.

Welcome Kristine - sorry to hear about the test results. My husband tested positive @ 1 year ago and I really understand what you mean by being able to now move forward. It was absolutely that way for us. Instead of being stifled with fear (as we were) we were able to be proactive and get comfortable with our new reality. We have 2 kids also - 8 & 6 - girl and boy. Glad you have found this site - it has been a great source of info and support for me and so many others.

Kristine I think you'll find a lot of knowledge and comfort here...I know I have.

Welcome, Kristine. Sorry for your reason to be here, but glad that you found this place.

Kristine, I'm glad you are here! This is a link for a really good website that shows the median age of HD onset in relation to CAG repeats. Scroll down the page, it's about halfway down.

[hopes.stanford.edu]



Edited 1 time(s). Last edit at 10/08/2010 07:37AM by swgirl.

Rate of progression as it relates to CAG won't tell ya much for you personally. It would be an average from some certain point to the end. Some will do better and some not from that average.

HD can progress differently between people. Some people progress from plateau to plateau. Especially through midstage HD. The person will be as they are for six months or a year then something big will change.. a mood goes south suddenly or balance goes. Others progress more on a smooth curve and if you live with the person you don't really notice things, but if someone who saw them a year ago, and then now, they see the difference. But if you are trying to wrap your mind around a time frame, whether it's a little quicker than average or a little slower... it's very long either way. And that is what you need to understand and expect. Either way we are speaking of multiple years... 10 or 12 or 15... a pretty long time. So it leaves you time to have a lot of good times... and learn to neither panic but also to keep looking forward from where you are so you won't be too surprised from various situations. If you have seen HD in a person in the family, it's not really an indication of what the next person should expect.

Dear Kristine
I am sorry for that as it is really a hard hit. But the heart is beating so life goes on. We here are a small group of people applying Chinese Herbal Medicine for few HD patients over the last 2 years. The experience shows that the progression can be halted and in 1 case we see a continous improvement.
Now it is also about the herbal mixture which is an individuel mix and individuel dosing but it is at the same time about working on the mind, way of live, food and sleep.
All the changes have to go hand in hand. The foundation is our daily medication which is food. When we talk food we say:
- only cooked and warm food to achieve best digestion, fresh vegetables, rice, corn
- not too much dairy products
- spycies shall be used to a good degree
- no cold drinks
- no ice at all
you realize it is all about keeping the inside of the body warm and digestion at its best.
In terms of sleep its important to keep the bedroom warm, windows are closed, ventilation of (rather open the bedroom door).
When coming of the bed immediatelly put some cloth on to keep the heat from the night. Rather take a bath than a shower, dry fast and dress immediately.
Sleep should start round 10pm till round 6am (go with daylight).
Very helpful is also to drink warm tea with ginger, cinnamon, gloves (the warming winter teas).
So that was quite some food for thought. Please feel free to ask any question and will try to answer.
All the best
Ernst

I wouldn't pay attention to this last post.

That's what I was thinking!

Welcome Kristine...my husband is 42,CAG 43, two kids 8 and 7.
You'll find great support here. I'm sorry it is needed, but we try to make the best that we can of our situations

Live healthy.
Will can give some recommendations for supplements which have worked for him. Any doctor will tell you that supplement use is not supported by research, or that the support is merely subjective, but many people swear it makes a difference.

Take care,
Patty

Welcome. Glad you came. I wish you the best. Lots of people here will have good ideas.

Paula