My mom died of complications from Huntington's at the end of February. She was 68 years old and she had 41 repeats. She didn't become very symptomatic until she was in her 50's. I completed genetic testing on Friday and tested positive with 45 repeats. I'm 26 years old and I'm heading off for PhD program this fall but I feel like I'm already becoming symptomatic. My short term memory is getting bad and I'm experiencing this mental cloudiness that makes concentrating difficult. I'm very worried that I won't be able to complete the program. I'm terrified because the average age of onset is 35 which is so close. I told my girlfriend and she seems supportive although she is completely devastated. Obviously I'm giving her time to let this sink in. I can't tell my father, he hasn't even acknowledged that I was ever at risk for Huntington's. I don't know what to do. With time winding down so quickly, do any of you have suggestions as to what I need to do before things start getting bad?

Casey, first i'm so sorry, and sorry your repeat is even higher than your mom's. I give you a lot of credit, for getting your testing done, and not being in denial yourself. I really, would not put your life on hold, i would go for your phd. Did you get a neuro exam done too? And how did you do on that?

Here where i live, we have a young man about your age, who is hd positive, and guess what he is doing with his life? He is working here in Dr Michael Haydens HD lab, he is hd positive, and yet he is working as a researcher to find a cure. He is going on with his life, and living it the best he can while he can.

I would get a thorough neuro exam, and if you're showing any cognitive problems in the exam, i would then ask about the medication memantine, it stops brain cells from dying. I'm 51 and in the early stages, and for me, it got rid of my "foggy head" feeling. There's lots of other things to do to, exercise, eat healthy, etc. But i would get a thorough exam, and ask the doctors, what can we do, and if they don't have an answer, you go there with some answers of your own. There is a memantine trial coming up, there's a dimebon trial, and an acr16 trial, and i think all of these are showing to be good.

Your Dad, is he fragile? So what, you're the one with hd, not him. Just start by telling him, i've been thinking about this hd thing for awhile now, and i have been looking into testing. After looking into testing, i decided it would be a good thing for me to do. I've been having some struggles dad, with my thinking processes, and the test has confirmed, that i am hd positive. I don't know if i am symptomatic yet, but i am having struggles, and just wanted you to know this.



Edited 3 time(s). Last edit at 06/20/2009 07:32PM by Barb.

Welcome to HDAC! I'm so sorry that you tested positive, Casey. I know that wasn't what you'd hoped. The average age of onset is just an average. The actual variation is more than twenty years. Other factors influence onset such as heredity (which given your mother's late onset is good) and environmental factors.

I suspect that the memory problems and mental cloudiness are more a result of stress than symptoms. It seems likely that if you take this time to get physically fit, eat healthy, and consider taking some supplements, that you will feel much better. The goal is to stay in good health and buy some time while we wait for treatments. There are four possible treatments in final clinical trials, all of which looked promising in previous trials. In addition, researchers are hard at work at ways to actually silence the HD gene itself and have made remarkable progress. It won't happen over night but we do have a lot of hope for major treatments in the next few years.

I was much struck by your statement that time is winding down so quickly. I don't want to minimize in any way the impact of knowing you have a gene that produces a life-shortening illness. At the same time, I can tell you that life goes by pretty fast for everyone. We need to make our years here good ones and that's what you are doing by entering a Ph.D. program. Getting one was one of the highlights of my life.

I agree with Barb that it wouldn't hurt to talk to the doctor about possible symptoms. I could be wrong and maybe you are experiencing cognitive difficulties. If so, it looks likely that we are about to get treatments for them in the form of memantine (available now, needs to be taken in low doses), and Dimbeon, in final clinical trials.

Hello Casey and welcome. I'm so sorry you've tested positive for the HD gene. Barb and Marsha are very wise people and they have already given you some good advice, so I just wanted to tell you you've come to the right place for advice.
As they suggested, getting a neuro exam would be a great idea. You're going through some very tough times right now, so it's normal you are not able to concentrate.
Regarding your dad, it's a very personal decition to tell him or not, but think about this: parents usually want to know what goes on with their children (no matter how old they are) and they want to be there for them to do whatever they can do to help them. And then, if you feel it would help you if he knew, just look for a good time to tell him.
Take care and come to us whenever you need us.
Mar?a Luz



Edited 2 time(s). Last edit at 06/20/2009 09:39PM by Luz.

Marsha and barb are right. You ever hear of older people who go back to school in their sixties? They have a short life expectancy but it doesn't stop them. Actually I am 50... you may outlive me now. I suspect they will cure HD before they cure old.. Don't be a victim of HD before you have to be. Even then you don't have to be victimized.. but now.. not at 26 for goodness sake. JL who is here on the board with HD has a middle cag count and she worked 30 years in I.T. until her middle 50's Heck, in 25 years they probably will have a cure. Don't count your chickens yet.

Casey, I went into a graduate program at the same age as you are now, 26. I'm very glad to have accomplished my education. It has helped me in my vocation which is writing. I have HD and was unable to tutor at the college anymore when I reached the age of 44. Now I am 55 and still writing, driving, volunteering, and being a whole person, not just a pHD, as "Person with HD" is abbreviated to here on the forum. (smile)

Welcome. You have received some great advo=ice. It is very hard to hear and accept the diagnosis of a psoitive CAG count for HD. I wish you the best in your doctopral studies. What field are you going in to?

You are 50 Eric? Wow, you are old.

Actually 49, for those keeping track.. I figure I can say 50 for three years for everyone else .. That's Mr. Old Fart to you.. and get of my lawn.. Casey is 26.. yep I am old.. and he's a kid to me..



Edited 1 time(s). Last edit at 06/21/2009 02:52PM by Eric.

Welcome Casey, sorry that you have tested positive and for the fairly recent loss of your mum.

You have had great advice esp. from Barb and Marsha. Just wanted to say hi and welcome

Louise

Yes, Barb and Marsha are extremely wise.

I'd heed their advice.....

jl

Casey, I would finish school.

I am 23, HD+ (tested 5/08) and my mom died last august from HD.

I am finishing up my last semester of ugrad this summer. Its makes me feel normal and i dont want to give up on life, with about 10-15 yrs i think i have.

ill be honest, the positive result and my mom's death has taken the wind out of my sails.

I also feel the mental cloudiness and loss of focus for the past few years. It is possible to do well in school. I've been getting B/Cs in a top 15 econ program.


My advice (from personal experience):

Stay away from alcohol and addictive behaviors.

Self pity is such an easy trap to fall into.

I've found a lot of ways to trick myself into denial.
Watching too much TV, working too much, eating too much...
avoid them, dealing with reality is the better option.



Im really sorry about the positive test, but one of the ways i cope with it, is that HD has been apart of me since i was born. Its in every cell of my body and literally a part of who i am. So all of the great things I did before the word HD came into my life, I can still do now after knowing that i have it.

i think its still possible to feel as happy as I was before all of this. That hope keeps me still going as i build my own life now.

I still struggle with all of the what ifs and the grand plans i had for myself. And while i haven't completely given up on having a "normal" life, I find myself searching for what really matters to me and going after it.

thanks for sharing
its nice to hear that im not alone

keep your head up,

Christian

christian Wrote:
HD has been apart of me since i was born. Its in every cell of
my body and literally a part of who i am. So all
of the great things I did before the word HD came
into my life, I can still do now after knowing
that i have it.

OMIGosh!! this is surley one of the most postive statements I have ever heard about testing postitive!! I tested Post several years back and consider myself pretty proactive and have postive outlook ... and Christian I love this thought!!

Casey, Testing positive is not a death sentence, it is on the other hand an eye and life opening event. You have had a look into your future that many others don't have and what will you do with that information. Personally I chose {and had the means to do so} to work less and spend more time w/my kids,family and friends while I am healthy.

Give it time to sink in, but you are still young...I am not as old as Eric {thank God!! LOL} but I have been told by researches they are working and close to treatments for those my age.....I am 40 but tell everyone I am 26!!

DCB
*Living for today*

Good post Christian. Being 25 myself and in a similar situation def. makes you wonder what is going on. We got a while yet Casey and to quash a phd program would sure make you look back at things later, im sure. I might go back to school, but not quite at that point in my life where that is going to work right now, eventually though. It has been quite a few years now where i've been able to work through a lot of my issues from this disease- on all levels, and it does get easier. I know with myself that stress plays a huge role in what you are talking about, and I too feel the same way a lot of the time. Take Marsha's advice.. it's all good stuff. I don't take any supplements, but have tried a few. Personally I have benefited from excersise, eating balanced and (fairly healthy) meals, and a low dose of an anxiety medication, and lots of walks alone when I'm stressed or in a down mood. I get to go fishing a lot now too since fish are such a great food to eat with HD.. ecspecially since I love to fish as much as my fiance wants me home ; ) Keep talking too, that helps a great deal. Good Luck!

Heya Casey, Christian & Zach:

I too, am a dude with a mid-40's repeat. I also watched my mom die from this.

I've got about 20 years on you guys so here's my two cents;

- Stay physically strong.

- Absolutely, positively get as much education as possible, especially if it will make you more marketable to an organization that provides excellent benefits.

- make financially sound decisions; live your life, but be smart with your money & investments. You don't have to save every dime, but you should try to put a large percentage away (or buy property!!)

- be careful who you share your HD status with. You know how information needs to be free? Once it's out there there's no way to bring it back. When I was asymptomatic like you guys, I told only a handful of people and even that was out of absolute necessity.

I didn't even tell my family of my status until only very recently - I never told my Dad - so as to protect them all from something for which nothing can be done at this point.

- Women/Dating; while at first I felt like "damaged goods" the truth is (and luckily for us) most guys are jerks when it comes to women. Just continue to be a kind, considerate human being and you'll look great by comparison. Any girl worth having will regard you as a catch - especially if you are fun, have a positive attitude, are proactive and have a definite plan as regards your future.

- Kids; definitely have them if you want them. As each of us knows all too well, no one should have to see a parent suffer through HD while knowing that the same fate is in store for us. The best gift you could give your family is a generation of HD-free kids - there are options - not all of them palatable, but my beautiful wife & I went through IVF/PGD and are now the proud parents of the most amazing HD-Free daughters. These sweet toddlers alone make it all worthwhile and I look forward to spending many healthy years with them.

'best.



Edited 3 time(s). Last edit at 06/23/2009 08:51PM by Dathi.

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Edited 2 time(s). Last edit at 06/23/2009 08:49PM by Dathi.

welcome and I hope you find comfort on this website my prayers are with you and I hope you can find peace within yourself and know you arent alone good luck with your program

Hello, Casey--sorry about your result. I got mine a few months ago, CAG 44. I'm not sure what my mother's was (she never had the test) but she died at age 44.I am 33. I started having a finger twitching at around 26.

I went through a lot of schooling--professional school, training afterwards, many tests, etc. and did fine. So far, I have not had trouble performing my job.

When I think about my life, I'm glad I went through with it because it was something I always wanted to do and I'm proud of my achievement. My family and my son will have as an example that a person with HD or at risk can achieve a lot. No one can take that away from you.

hi casey: first of all, let me pass on my condolences re your mother.
Im so sorry that in such a relatively short space of time you have had so much to process; believe me, i know how hard it is to take on board that positive test result, but combined with the loss of your mother and the perceived implications of an increased cag, you must have been scared right out of your mind.

You have been through a huge amount this year, some major shocks and im not surprised you have been experiencing concentration alterations.

Give yourself some time to greive and know that this is to be expected.

Then, i think you will reach a time of moving forward.

keep your goals in sight and enjoy your life. there is no inevitability with cag repeats. My hubs has the low cag of 40, yet is sypmtomatic late 30s (early signs). or so im told. there are indeed other variables.

i am currently considering the variables that my husband has always been an idiot and a selfish pig; the fact he chooses to make life choices that involve him getting drunk, enjoying himself and ignoring his responsibilities around hd, to his three young kids, are invariably his choice.

He perhaps has 20 years left. he has a choice in how he lives them. Hd isnt an excuse to roar ahead and quit life or live as if there is no tommorow.

i cry every time i see a young person take such a responsible attitude, as you have and i admire your attitude. I married my husband believing he had this attitude, knowing he was 50% risk and i loved him entirely. when i look back i realise i just kidded myself he was responsible: he just didnt look at things at all and made me feel guilty for mentioning the negatives - he put the positive spin on hd and i believed him and his families crap.

You havnt dont this: you know the negative, you have seen it, worried about it and considered your responsibilities: But, having considered the bad: you will ultimately see their is a choice now.... and you choose, as we all do: how do you choose to live the rest of your life?

Actively, with vigour, keeping your goals in sight and to the full. Its hard, but your hd positive status doesnt change wether your girlfriend truely loves you, although yes, its devastating news.

The gene count didnt destroy my love for my husband. im here for him and i love him.

At least, i did: thats being eroded by his selfishness and refusal to discuss hd.

im left dealing with it, not cause he has hd, but cause he is a selfish git.

i truely believe, there are worse things you can be than hd positve in life. i dont believe his arrogance is hd related; looking back he has always been like this, so either i have the longest surviving hd person or he is indeed a selfish git.

my husband will loose his wife and family life as he knows it, "before his time". not to hd, but to selfishness and beer.

we all have choices

my best wishes. x x x



Edited 1 time(s). Last edit at 06/25/2009 02:41PM by trying 2 cope.

Thank you all for such supportive responses. I've been focusing on the CAG count a bit to much. I emailed my counselor about a neuro exam but I haven't heard back yet.

I want to do anything that will buy me as much time as possible to delay onset. I had my last beer on Thursday. I've always been very active physically and I'm in pretty good shape right now. I hope to maintain my fitness as long as possible. I've also ordered supplements and so fourth.

Once again, I truly thank you for your replies.