My husband may be at risk, we will know later this week.... I have not really considered this question in too much detail but I am curious how far on the research into HD is, how good the medication is and how close a cure is. Is there medication to help with the psychological problems that works? Is there medication to control movement?

Thanks everyone

Hi -
As I am sure you have read there is "no treatment and no cure"... many on these boards would agree that there are treatments that help. There are also a few things in the pipeline that we are hoping to be a "cure" and may be ready for clinical trials in the next few years. There are a number of meds that help with the psychiatric problems. Many people (my husband included) use fish oil, creatine, blueberry and feel the benefits. Memantine is a drug approved for Alzheimers that (in low doses) is helping many folks with HD - I believe it is in clinical trials for HD now. Huntexil is another drug that is helping many people - it is in phase 3 trials now. There is a lot of info to be found online regarding what is happening in the medication pipeline for HD and there is a lot of hope. I hope you get a negative result and have nothing to worry about but if your husband is at risk he still may be negative and, if positive, he likely has many years before he needs help - time is on your side which is so important now. Our COE still told us just to take a multi-vitamin, eat lots of fruits and vegetables and exercise - and were not helpful in terms of clinical trials (and that was in NYC!) so we had to do our own homework.

best of luck - I hope it is not in your future but if it is there is hope!!!

I'd just like to share our experience with Abilify. About 15 mos. ago Terry was stuttering, grimacing, making noises and had become irritable to the point he balled up his fists a couple of times and yelled at me in very public places. I came to the board looking for something that might help-we were already using more natural things that Hope2 listed above plus Sam-e-and someone mentioned Abilify. It worked beautifully for Terry. He had just started to have some mild tremors in his hands and it took care of that too. It did not help with his unsteady gait or his fatigue. He's on a low dose of 10mg. and we're considering raising that now. The disease is still progressing. He has become sort of uncommunicative, there are times of confusion, but I'd hate to see where he would be now without starting the Abilify over a year ago.

Audrey

What about Xenazine? My husband was just presribed this medicine and we just got it approved through insurance, but he is afraid to take it for fear of the side effects. Anybody familiar with it on here?

Kristine-
My daughter has been taking xenazine for two years with no ill effects. I know it's not for everyone, but it has helped her tremendously.

Howard, may I ask how are your daughter's movements when not on the medicine? My husband's chorea movements are still somewhat mild right now and only seem to get worse when stressed, tired, frustrated, etc. He is 39 yrs old and has a CAG of 47 and has been symptomatic for several years. Since is chorea movements are so mild (for the most part), he is worried about potential side effects of the meds. It's nice to hear that your daughter is doing well on it.

My father in law is on Abilify. That worries me and makes me think he has it...I am wishing the days away for Wednesday

Kristine,
Before Allison started xenazine her movements were pretty advanced (mostly with her arms). Her biggest problem was swallowing and choking when eating. This has improved tremendously. Other issues such as walking and balance have continued to progress but at least she can eat better which is her favorite activity. It also stopped other issues such as burping and making noises which the doctor attributed to abdominal chorea. She also started in the creatine clinical trial at MGH at the same time she started xenazine, so that may have also led to her improvement. Allison has a CAG of 60 (the threshold for JHD) and has been symptomatic for about 8 years.

Rusty just finished his wean on dose of Xenazine. His chorea had moved into his daphragm and was causing a lot of belching and burping and gasping when breathing. I can't be sure, but he has also started having some episodes of sleep apnea, but I am not sure if that is related. With the Xenazine(12.5 bid) he does get some periods of relief, but he still has breakthrough movements first thing in the morning, but it is many hours after his last dose. I think we need to move his dosing timing, but he is very particular of this schedule, so I can't convince him otherwise,

Anyhow, yes, I think it is giving him some relief. He is not at all depressed or suicidal, or even more aggressive on the Xenazine. so I think this was a good switch for now.

Patty

Ray tried the Xenazine, but it was toward the later stages of his disease, and it seemed to worsen his swallowing, so he didn't take it for long. He was on Abilify for a long time with Amantidine (bad effects with the amantidine, though), then he was on Zyprexa for a long time.

M husbnd has been on Xenazine for about 6 weeks. We are returning to the doc today to explore dosing and time for best benefit. He is showing some more anxiety than before. Suddenly needs my help with showering and seems more upset with his accidents,dropping things and messes from feeding himself. He has asked that I start to feed him for dinner, he gets too tired self feeding. He also is a bit more tearful, and intolerant of the kids (ages 8 and 9) noise in the house. Therfore he is starting to isolate himself in our room and sleeping a lot.

Not the miracle we were hoping for, but we'll try for a few moifications before we completely abandon ship.

Rusty 43, mid stages with a CAG of 43.

Patty

Good luck at the doc Patty. Maybe a tweaking of the dosage will help. it is like playing darts blindfolded trying to figure the puzzle out!

Yes Hope, great comparison.

I think it's very important, and Dave will agree, to help the doctors with some real data. You can do that by creating a log of what is going on with the medication. Get a notebook and start logging all of he meds, and noting any symptoms and the times.

You might find some patterns in the notes after a week or so. I found that the meds would wear off in the afternoon, and we modified the TIMEs of the dosages, and it was better for a while.

It's better to have this written log so you can prove what you are thinking and verify what you believe happened. It is an invaluable tool that doctors use all the time, and it will go far in helping adjust medication without hospitalization.

We ended up bumping his Xenazine to 3 times daily and moving his Xanax to stagger between the Xenazine doses. No help yet, but we are trying.

Patty

How old is your daughter? Where did you first take her with symptoms of JHD? Was she still in school? How did she do in school? I took my son to columbia SC, only place near me, (100 miles away) I was not satisfied at all. Don't think they really cared about either of us. I got no answers as to whats next? What do I do ? etc... I go from anger to sadness about the JHD. My son just turned 17. He doesnt drive yet, thank goodness! He does'nt show interest in anything. He likes to ride his bike, thats all. How normal is it for a 17 year old not to talk or hang out with friends, or not have an interest to drive? My son has a flat, I don't care attitude. He refused to be tested, they based his diagnosis on symptoms. He said he doesnt want the actual test, because there is no cure for it anyway. Not sure what I should be doing. I regret even taking him to the doctor and letting the cat out to the bag as to what I see and have suspected for some time. I feel like I robbed him from enjoying life. At the time, I and others felt like he had to be aware of his symptoms, and I felt like I just didn't want him feeling alone with it. So I took him to the doctor and said what I thought, I now wish I would have kept what I was seeing to myself. Did he know.. I don't know... surely he had to , but maybe me actually taking him to the doctor made it real. Surely he knew, but was in denial, and i really feel like I should have never mentioned it, I should have let him keep holding onto his denial. There is no cure for this!! That makes me sad, but my sons behavior at times makes me angry. He just does't care about anything anymore. Not sure what all I am asking. Guess I wanted to know how old your daughter was when diagnosed. What were things ya'll noticed early on.? Did your daughter know? or did you tell her? How do you handle it all ? Was she angry at you? did she become antisocial? Guess just looking for another point of view from a parent of a child with JHD.

MY FATHER DIED JUST DIED 1 YEAR AGO IM 33 YRS.IM FEELING SYPTOMS OF HD.OUT OF 12 CHILDREN ONLY 2 DIDNT GET HD. I DO HAVE AN APPOINMENT WITH MY REG DOC.NEXT WEEK TO TALK ABOUT WHAT I CAN DO. I HERE THAT YOU HAVE TO GO TO DUKE FOR THE TESTING? HOW MUCH IS THIS? WHAT KIND OF TESTING DO THEY DO?I DONT KNOW WHAT DO CAN ANYONE ON HERE HELP ME. GRETCHEN

Hi Gretchen, it's nice to meet you. You must be Rob's wife I think the best you can do, is when you see your family doctor ask lots of questions. Also, if it is Duke that you would go to, phone them ahead of time, and i'm sure you can get all your questions answered, what it costs for testing, everything. I'm glad you're being brave to take the step of testing, for myself, i found it a very positive experience to be able to have a name for what was wrong with me, and to know what i was fighting.

DOES ANYONE KNOW WHERE YOU CAN GET AN AFFORDABLE HD TEST. IM HEARING THAT DUKE IS 2,000-3,000.