Hey Guys,

This is my first time posting this and I am confused as what to do next. I got diagnosed with HD today 43 CAG repeats. I was planning to do my Masters but that is now out of the question as i don't see or know what i am going to do in terms of my Career anymore. Even Marriage is now out of the question because i know what families with HD have to go through and i have no intentions of putting anyone in the same shoes as what Mom went through for over 25 years who has been dealing with my dad and my grandmother both of whom had HD at fairly young ages.

I haven't told my mom yet, do you think its a good idea? I don't feel like telling her because she will be devastated. I did tell my brother who himself is at risk of HD but hasn't been tested for it.... Where does this leave me at this point.. i don't' want to be in a vegetative state because i believe that if your going to loose your free will than your pretty much dead.

Sorry to hear about your diagnosis. Here are my first thoughts.

1: Don't make any decisions for the next year. Let the diagnosis sink in and give yourself time to recover.

2: Assume that you're going to be depressed for the next year. I was told by a doctor that after the diagnosis that 90% of his cases suffered medium to severe depression for at least a year. Make sure you are facing that possibility and be proactive about it.

3: You'll want to put yourself in a job situation that is as high paying as possible, with the maximum insurance coverage you can afford. I'm not sure that discontinuing your education is a good thing. That might be the depression talking to you.

4: Tell your mom. It'll be painful for both of you but you need her support and encouragement and someone to talk to about this.

5: Become a cheering section for the researchers. It's our hope that something will be developed that will delay the progression of HD. You should already know that a lot of posters seem to have managed to put off the disease with exercise, a great attitude, and a brain and heart healthy diet.

6: Help us find a treatment by participating in clinical trials. Let's kick HD's ass to the curb!

Welcome to HDAC. I am glad you are here but sorry for your positive test result. I think you should take some time to grieve the less complicated future you hoped to have and then come up fighting. It takes about a year to really come to terms with a positive test result (or a negative one) so don't feel bad about feeling anxious or depressed from time to time.

If you had your heart set on getting your Master's and entering a particular career, shouldn't you go ahead and do it? I could see that if you were going to incur heavy student loans you might not want to do that but otherwise, I think you should consider going ahead. The next two years or so are going to pass and at the end of it you will either have that degree or you won't.

I believe the HD community stands at a crossroads. We've learned a lot about what goes wrong in HD and there are a number of promising drugs and supplements in the research pipeline that may become major treatments. In the meantime, people are feeling better and almost certainly buying time with a good diet, physical and mental exercise, supplements, and the medication that is now available. We have opportunities to make a difference and bring about a better future through participating in clinical and observational trials, through advocacy and through mutual support. This is no time to feel hopeless!

I can not speak to your family situation; don't know your age or your mother's health, but it's way too early to think about punching out. Appears to me you have your head on straight and are set to do battle. Don't let an expanded CAG count push you over the edge. You can delay symptoms onset.
Try to get on with life; stay active - get your masters. (?serious?) Mental stimulation is probably number two in the GREAT things to do for the brain. Number one may be exercise; get the BDNF revving. Number three is supplements.
I am 73 years old/young - given my immediate family, am fortunate to have a CAG of 40, and am considering a doctorate. I am a caregiver for two daughters with huntingtons. I am still physically active.

Welcome.Glad you came. You'll hear a lot of good things here.

Hey there, welcome to the forum. I'm really sorry about your test results, and how you're feeling about your future. Yes, tell your mom right away. Don't worry about how she will handle it, she's an adult, she will handle it. You will feel confused and overwhelmed, and maybe even angry at times over the next few months, and that's normal to feel that way after news like this. But the most important thing is not to make any drastic decisions right now. Wait until your feelings have settled more. Stick around here, do lots of talking and ask lots of questions. Remember too, we have so much more hope today, and the promise of early treatments, and you yourself can make a huge difference in the hd community if you want to. Hang in there

Hi -
I am so sorry about your diagnosis. I agree with what many of the other posters have written - this needs time to sink in - it is not something you can come to terms with overnight. My husband has HD he is in the early stages and has a very demanding job which he is functioning well at - I think the mental exercise is extremely good for him as school would probably be for you. Live your life - learn what you can do to be proactive and help slow your progression... there is so much to be hopeful for.

I have only been posting here for a few months but have gotten so much information and support and have tried to do the same for others when I could... post any questions here - you will find people who can relate and wisely advise.

Just as others have said, I'm so sorry about your diagnosis, but glad that you found this place.

I've just been here about 6 months, my Mom has HD, and I did genetic testing in February (I'm also a CAG 43).

You say you've been "diagnosed". But I was wondering if you actually do have symptoms (usually "diagnosed" means symptoms in my mind), or do you "just" have the gene? Either way, you still have potentially many quality years ahead of you.

As others have said too, DO tell your Mom, and others who are close to you, who can be your support system. Do get on supplments (see "supplement advice" thread that should still be on the first page here), and Do get involved in the studies. I think the supplements that ARE available + near-future developments will really make HD different for you and me, than it was for our parents & grandparents.

Also do go see a psychiatrist and get some depression meds, if you didn't already. Give yourself time to grieve for your "less-complicated future" as I think Marsha put it. But limit that time. Spend time outside. Exercise. Do things that will improve your mood.
Then, after your mood IS improved and things have sunk in, you can go back to making your long-term decisions, like school and stuff. As others have said, school may be good to exercise your brain.

Hang in there. I can definitely understand why you're asking all the questions that you are; I've been there (recently). But I promise that the stress of a fresh positive result will fade soon (for me, the worst was past in a couple weeks). And you will adjust to a "new normal".

; Hi , Some great advice from the others . There are a few pHD on the forum who have similar cag's , as yourself and are smart like yourself and are now older older , still doing relatively well . I hope they get a chance to say Hi to you also . And give you some encouragement . All my best to you . db

I didn't mean to put a double older on my message , but it is too cute not to leave there . db

Welcome!
I'm so sorry about your test's results.
You've been given great advice already, so I'll just say I would try staying as positive and as stress free as you can. That will help delaying the symptoms, too. I know it's not easy, but persuing your dreams, reaching your full potential in life and doing a little research about potential treatment for the future (we have lots of good reasons to be hopeful) could definetly help in that area.
Take care,

Luz.

Hey guys sorry for the late reply and thanks for all the positive responses. It's nice to see that people care. My brother has been doing a lot of research on some new drugs that maybe helpful.

What are your thoughts on ACR-16, huntexil

Do you think it will allow HD patients to live a normal life and work towards his/her career? By the way i forgot to mention my age which is 25. My Dad got HD at the age of 34 which is fairly early so i fear that i might start to develop physical symptoms a little earlier than my dad. Like i said i have a positive Gene with 43 CAG repeats.

I am already having alot of mental issues and take Prozac 20mg daily for now as my mind clutters alot and just keeps on thinking random things all the time with no stopping it.

Also i did tell my mom and surprisingly she took it very maturely and although i know she felt sad inside she didn't display any emotion. She her self is a doctor and has dealt with HD patients for very long time so i guess she kind of knew it aswell deep inside.



Edited 1 time(s). Last edit at 05/24/2010 07:56AM by durran3.

Hi -
I wanted to get my husband into the huntexil trial but he was excluded because of a med he was on. It does sound very promising - as does a drug called memantine (already approved for Alzheimers). There is sooooo much to be hopeful for. My husband is 48 and diagnosed about 7 months ago. We have him on multivitamin, blueberries, fish oil, creatine and trehalose - all over the counter supplements. He is feeling better than he has felt in a long time. I think the supplements help but also the stress of not knowing has been lifted - I think that has helped very much. Get into exercise if you aren't already. Keep on top of the science and get started on some of these supplements and then just live your life!!

Exercise, supplements and relief of stress. There is so much to be hopeful for right now. When my father-in-law was diagnosed @ 20 years ago it was devestating to go online and read about the disease. Now it is actually uplifting because there is so much happening to treat and cure HD.

Good luck! And use this forum for any questions - the folks here are so knowledgeable and kind - it has been a wonderful source of info and support for me and so many others.

You have been given alot of solid advice on the prior posts. You do have alot of good years ahead of you.

My husband has a Cag count of 44. He was just tested last year. We have beautiful children/grandchildren which we enjoy very much. Yes, we worry about HD in their future but there is hope with all the trials, drugs, treatments going on.

Taking care of yourself is very important as was stated prior.

We do basically everything we have ever done. I do have a bit more to do as he is not able to do quite everything mainly due to being a bit slower. We visit relatives/friends in state and out of state, we go to the lake quite a bit, we interact with family alot, we shop, go to the movies, etc. like everyone else including going to restaurants on occasion.

My husband is 61 - you have a bit lesser Cag count - hang in there, take care of yourself, take one day at a time and heed the prior advice given. It was all good advice.

Hi, I know I'm late but welcome to the forum. I'm glad you decided to tell your Mom. I know as a mom myself, I would want to know if my son tested positive. I do want to say that we don't always follow in our parent's footsteps when it comes to HD. You can be proactive with nutrition, exercise, and supplements, which we now know play an important role.

Patty

DURRAN,

you have more years than you think, use them wisely...
live your life to the fullest, perhaps there will be a treatment
or a cure in your life time, perhaps not... BUT...

if you live your life to the fullest, you will choose happiness
over misery... how do you want to live? time enough for heartbreak
later...

its hard news, its unfair, it really sucks...
feel it, cry over it, shout your rage at a tree, digest it...
yes as others have said, you will drown in it the first year,
but you will start to come up for air, and either sink or swim.
be a swimmer... thats what your mom will want for you..
be a swimmer....

welcome...