Hi, My name is Audrey and my husband, Terry learned he has HD about 1 and 1/2 yrs ago. He just quit work last month. Reading the posts here have been invaluable to us. His neurologist doesn't seem to be too interested in his condition and leaves his treatment pretty much up to me. Recently there were posts about Abilify and what a godsend! It's the first medication that resulted in any improvement. Thank you all so much. Sorry it took me so long to post.

Audrey

Welcome Audrey - so sorry about your husband's diagnosis. My husband was diagnosed in October and I have found this site to be an incredible source of information and support so I am so glad that you wound up here. My husband is not on abilify but since his diagnosis he has been on Creatine, blueberry, fish oil, multi-vitamin and vitamin e. Somehow between the relief of having a diagnosis (even a positive one), these supplements and a reduced stress level at work he is doing very well - better than he had in years. Good luck to you both and post any questions here - someone with something worthwhile to say will respond.

Hi Audrey and Terry, welcome



Edited 1 time(s). Last edit at 08/16/2010 09:47PM by Barb.

Welcome!

Welcome. Sorry to hear your doctor seems indifferent. Nothing says ya have to stick with that one. But if you, yourself keep up with stuff and have preferences, a compliant doctor is nice to have. Some doctors don't have a lot to say about HD because they don't know it that well. The medications for it can be tricky too with medicine they don't work with much. It may not be indifference, as much as just not knowing quite what they have there in the office. Or what you have at home. The psychology part of the office visit is sort of tough too.. with two adults, and one is a caregiver but also the spouse. The patient seems not overly concerned, and the caregiver, almost overly concerned. Pediatricians know how to behave, like with a child with a fever with a mother. They know how to look very concerned, even if what they are gonna do is very routine. It's not the role other doctors have to play so much. I think it's really tough to earn the title of being a "good" HD doctor. It's often not a results based title, but simply a comfort based title.

Thank you all. When we got the diagnosis all the dr. said was to go and live our lives. It took over a year before he ever recommended any medication or treatment of any kind. In the meantime though it's true that it was nice that he was "compliant". Any medication I wanted to try he prescribed. We went "natural"-blueberries, creatine, Sam-e at first. Terry has become irritable-a remarkable change for a man who never raised his voice. He is still on the natural stuff but for my own safety I was looking for something for the irritability and the Abilify has helped with that, his walking and he no longer grimaces.

Welcome. I've been here less than a year, myself, but have also found it invaluable. Seems like you're already getting some great additional advice. So glad to hear about your husband's recent improvement with the Abilify.

Yeah Audrey, he probably just has the booksmart understanding of HD. We all start out that way. "Go live your life" was probably well intended in the moment. As time goes by he may come around to what living with HD is and what that life means. And going and living your life means "I will be here often as a part of living our lives." And in a way, we do still have to live our lives as well. He may not have meant ignore HD and go be "normal". He may have meant, don't go home and become alcoholics because life is over from this day forward.

To be honest, I do appreciate a sympathetic doctor. But really I don't think in an office visit with one, they actually do much more than make me feel better than a day or two. How much can they say or do really with something so complex and individualistic? HD will probably become more personal to him too over time. He just doesn't have that professionally personal relationship with HD yet. You know him somewhat, does he seem like the kind of guy who might come around?

Welcome, Audrey!
I'm really sorry about your husband's HD diagnose, but I'm happy his new medication is working fine for him.

welcome to the forum audrey!

Hi Audrey,

A doctor is supposed to "do no harm". There isn't much in the way of "treatment" for HD other than to manage the emotional symptoms. The doctor could offer you some hope, but I think the best thing he/she can do is not step on your hope. And maybe that's what the doctor is doing right now.

This forum will go a long way in helping you and your husband cope with the process, because it is a process, of HD. You have a great resource here that will give you some ideas and some advice to help you along the way.

Welcome to the forum.

I'm new as well, so I just wanted to say hello. My father was recently diagnosed and has decided to not try treatments yet. However, reading about everyone's experiences with medications and various supplements has been very helpful. I want to be able to provide my dad with some ideas when he decides he's ready. I'm so glad Abilify is helping your husband. From what I've read in the forum so far, it sounds like a lot of trial and error to find what each individual needs.

It does take trial and error for medications. Often times it feels hard depending if we want a good balance found quickly. Sometimes it's just getting a nice comfortable balance of dosages is all. Also having a good environment helps too. Welcome to the forum. Sorry about your father, is the family history new to you?