My dad gets his test results tomorrow. Although I believe he is positive I will be saying a small prayer tonight that I am wrong.

Good luck - sending healthy vibes your way.

Sending positive thoughts and prayers you way!!!

Thinking of you today.

Well, he has HD - 42 CAG.

It worries me because research appears to agree that receiving HD from the male line means that symptoms start ealier.

I believe that his HD started arround his mid 30s when he became violent and paranoid. He is now 53- no chorea. That makes me think that I will soon be symptomatic - I'm 31.

Very sorry about the news. The stats don't mean much on a case by case basis - just trends - I will try to find the percentages because it does shed some light. Also, the more you read these forums the more you see that it manifests itself differently in each case. IF you do have it you have a big advantage over your dad in that you would know what is happening and why - you can get meds and do other things to help yourself. If you do have it it is very likely that your road would be very different from your dads. there is also soooo much to be hopeful for coming down the pipeline in terms of research and meds.

I am sorry you are going through this - continue to use this board for information and support - it is a wonderful place for that...

so sorry to hear the news. My husband has the same CAG and he is 40. He is very early stage right now. As Hope said you have an advantage to live positively, research and enjoy life each day. God Bless.

Hi thanks for the messages. I am meeting with my genetic counsellor at the end of July to learn more about being tested. A part of me wants to be tested to get it over with - a negative result would be great and a positive result I can start getting involved in the research studies. The other part of me say it is better to have some bad days thinking about it than knowing you have it every day. Catch-22. Sometimes I just feel that I have it especially when I feel off balance or forget something.

It appears that there are many drugs in the pipeline - what type of time frame are we looking at for these treatments or possible cures?

Knowing on the one hand is fabulous if it is negative but if it is positive you live each day knowing that at some unknown point in the future HD will start particularly if you are not yet symptomatic. Then again you can participate in the much needed research.

Not knowing you live each day wondering will I or will I not get it but you don't live each day knowing you will certainly get it at some point.

It's tough there is no right or wrong answer.

Pius Vir is my husband. We are obviously distressed to know my father in law has it - we knew it was likely given his symptoms but it is still a shock.

My husband is 31 and I am 27. We have been married nearly 4 years. I am not just saying this because he is on this forum (!!) but he is a special man not a bad bone in his body. We have dreamed of buying a house (which we are in the process of) and starting a family. I know there are differing views on this and some (like my husband's parents) never had the benefit of medical advances or knew they were available but we do not want at risk children. We do not know whether it is right to start a family (through PGD or CVS) knowing he is at risk that is something we are going to have to do some deep thinking about.

Right now the focus is my husband and whether getting tested is the right thing for him.

It is tough...........

I am scared for his dad too.

LJH and Pius Vir, I'm so sorry to hear about your Dad/FIL, but as you said, you suspected SOMETHING was going on, so maybe having an explanation can be a good thing in a way.

Treatments?.... Marsha has a pipeline chart on the Lighthouse page; I'll see if I can find a link. [www.hdlf.org] [Go to the far right, 2nd article down in that narrow column is a summary & there are more articles underneath]. There are over a dozen things; and only ONE of them needs to work, to drasically change what it means to have HD. Supplements like Fish Oil & Creatine have not been proven but many of us take them based on enough good evidence on low risk/high potential reward. Memantine is available now for Alzheimers, Huntexil is in a 2nd round of clinical trials so I'd give that 1-3 years, other things are further out; there are several methods of gene-silencing which seem like they could happen in the 5-10year range (some further along than others).

Basically, those are what keep ME going, after my positive result over a year ago now. (CAG 43, age 34, Mom is undeniably symptomatic in her late 50's but unaware; I'm about as logical, emotionally-level and hard-to-anger as they come; though I've always found it hard to multi-task which could be a "pre-symptom".)

I was in the situation where I could not not think about my 50/50 risk, so I felt I HAD to test and get it over with; of course it was worse for a while but now it's "better" as I'm used to the "new normal". But I think results would only be easier to take once one of those things in the pipeline comes to fruition, if you are someone who can get it out of your head enough, and don't find it necessary to make upcoming decisions.

How is your Dad/FIL doing?



Edited 1 time(s). Last edit at 07/06/2011 12:30PM by smiling sara.

Thanks Sara, my husband is out entertaining tonight with work which must be so tough for him but he had no option. Not sure how my FIL is doing, we will phone him when my husband gets home. He seemed ok earlier but I doubt it I imagine he is struggling right now. He has many of the symptoms. From what we are told he started in his 30s with the psychological problems, so he has had this progressively for years. He doesn't have the chorea element yet. His mother didnt get that till around 60 so I imagine may be the same for my FIL. Passed from the father evidence seems to suggest the onset can be sooner.

I think the best thing is for us to give it a little time see if my husband can handle being in limbo about it all or feels he needs to know. Our next big question and one of the initial drivers behind all this is children and starting a family. Not sure we will do that while he is at risk. That's to think about later.

I feel so bad for my FIL right now. My husband is from the US but we live in the UK where I am from. Here we have the NHS, we don't have to worry about medical and let's hope that never changes. I know in the US it is different and I just hope his dad gets the support he needs. We will be focussing on that. Life can be so unfair.

Sorry I just realised that went from my husbands account not mine

Im so sorry. But remember that does not mean you have it. I know you are now going to spend every day wondering and judging your movements and actions which can totally put you over the edge. I dont know what to say.

I lived in that uncertainty from the age of 15- until 39 so believe me i know what it does. I lived sort of in a denial and decided to live a normal life like everyone else. I had 4 children and even though I was worried in my mind - i just tried not to think about it. However, when reality set in as i got older and I felt myself or my children could have it- i started really feeling guilty that I brought them into this world to possibly go through HD. I really regretted not giving more thought to my decision about having kids. I love my kids and I wouldnt trade them for anything but as I looked at them and thought I possibly could have passed it on to them - It was painful. Especially when my son developed seizures and I was convinced it was due to HD- every time he had a seizure- it was just a pain I can not describe. I felt awful. I in no way judge anyone who decides to have children and does not test- i totally get it as I did it and I always say, "nobody knows until they live it." I just want to tell you how I ended up feeling.

I was wishing I would have been more knowledgeable about options but I didnt know things as I just lived in a world of denial. Anyhow, if you do decide to test and you are positive - it would give you a lot of comfort I think to have children that are HD free for sure and you wouldnt have to have those feelings. And if you test negative then you wont have to worry!!!!

You have a lot to think about and if you ever need to talk I am here.

Thanks Stella - we have already decided we will not have at risk children. We will either get tested and if it is positive go through PGD or CVS or we will not get tested and go through PGD or CVS without knowing Allen's result as I hear you can do that I just can't remember what they call it. Not sure about having children at the moment though, I always wanted them but starting to think it is not everything. Going to see how we get on over the next few months trying to forget about HD and if we can live not knowing either way. Thanks for all your support - this forum is doing so much good.

Is it common to only get the chorea or movement element of HD?

Nope, there can be exceptions to everything, but from what I've seen in my family + shared here, chorea is what often finally makes the clinical diagnosis, but usually psychological & cognitive symptoms come earlier.

LJH - You are doing the right thing by taking things one step at a time. This takes a while to sink in...

As the mom of 2 at risk kids who very much shares Stella's story (lived in denial and now living with so much guilt) I am so happy that IF you decide to have children you will make sure they are HD free. I never want another parent to have to wonder what their childs future holds...

My husband's diagnosis came just under 2 years ago - we had some ups and downs and now life is our "normal" - he is frustrated with his memory and slight decline but he has a very demanding job that he takes very seriously, he kayaks, snowboards, works out, reads novels, the paper, magazines (loves his kindle), he plays catch with our son at every opportunity, I could go on and on.... we do everything... and plan to for years to come... you guys will too

Thanks so much, it has crossed my mind that would it be fair for us to have children when potentially their father could if positive become ill during their childhood? Having gone through having children with a parent having HD how do you feel about that? Do you think it has impacted on them? We always said we would have children but I am scared about it now.

I could have easily had children 4 years ago when we first married that were at risk because 4 years ago I had no real idea even what HD was, don't beat yourself up about that. My husband knows he is at risk but he would never feel any frustration towards his parents, this is no ones fault.

I think you could start a string here regarding growing up with an HD parent and get lots of valuable info... my husband's dad wasn't diagnosed until he was an adult in his 30's... my kids are not aware yet although we are now learning everything we can about telling them because we are going to do that very very soon...

I got my positive test results about a year ago, and my husband and i have taken that year to get use to the idea, and things have started to be back to 'Normal', we are starting PGD next month, just letting you know that it's a good idea for you and husband to have your head in the right space before taking the next step.

My Mother is in mid stages of HD and has never had chorea, she very stiff.