Well said, lc!

Our genes know, from the time we are conceived. Our genes are programmed from the time we are conceived.

Not knowing really serves no purpose. That's why I chose to test.

I won't try to tell anyone that getting a positive test is a walk in the park!

But I still consider it better than not knowing. You are able to get on with life from an informed basis. I always prefer that.

Eric also made a very important point that testing is not only about you.

There are most often family members who have a "right to know".

Eric,

I very much value your opinion and I appreciate that you've givin a new point to ponder. My husband is a wonderful man and I think that your point is very valid. It is important to me to help him in any way possible. I will keep your point in mind and discuss it with him as we ponder which road to take.

I have learnt a lot from this post!

I have a question though. I am imagining, if the result is positive, how should we tell our parents without letting them feel that they passed us the gene (especially if they have little knowledge of the hereditary nature of HD)? Or should we just keep it to ourselves?

I know it depends on different situations but it would be interesting to hear your view. Thank you.

kensantoso,

I think that your question is very personal to you.

I know for most of us here, our parent that had hd was told that hd was a heridtary disease when they were told they had it.

If your hd positive parent isn't aware of this, and you feel that this parent my be too ill to understand, then you could decide not to tell them.

You will have to share this information with your family at some point so they can help you. It will be important to have support.

It is not any parent's fault to have passed down a gene they were not aware of. Only God decides such things.

My concern is: it seems to me that my mother does not really understand (or accept) the fact that it is a hereditary disease passing from one generation to another. She knows she got the gene from her mother, but she would not believe or dares not imagine it would be passing onto her children. If in future I tell her I am tested positive, it will definitely upset her to the extreme.

Thanks for your advice Tracie. This is something I need to carefully think about.

So she acknowledges that she has HD, Ken?

And that she inherited it from her mother?

I try not to get irritated when people who are not at risk answer these sort of posts. It is so different to be living at risk than it is to be a spouse of someone with HD. I think both are horrible cards to be dealt. Many times, I think it is much harder to be the caregiver and I am living it both shoes at this point. I want't to say that there are many reasons people chose to test or not to test and I really rarely think denial has anything to do with it. It is a personal choice! No wrong or right choice!

Of course there are no "wrong or right" choices for everyone. There are only "wrong or right" choices for the individual.

I made the right choice for me.

Even though I tested positive.


Many people in my family have benefitted from my decision to test.



Edited 1 time(s). Last edit at 09/10/2007 06:59PM by JL.

I became symptomatic 5 years ago, and tested positive 3 years ago. I had no fears of testing. I have to say, i have never in my life gone through any at risk emotions. When i started having memory and cognitive problems, i just went to my family doc and said i think i better be tested for hd. A month later i went to the hd clinic, and because i was showing symptoms, i did not go through pre counselling, because we needed to know what was wrong, and if it wasnt hd, what was it, and was it something treatable, and this was how i felt about it. I had no fear like most people, and i dont know why, i just had a fear of not knowing what was wrong with me.

So at my first hd appt, i had a neuro exam, and the neuro decided i definitely had something wrong, let's do the blood work. I also met the hd psychiatrist, and the hd social worker. I was told to come back in 4 weeks for my results. I had no apprehension during those weeks, all i was hoping for, was for someone to tell me i wasnt being dumb, stupid, clumsy, and forgetful, but that there really was a reason for this stuff. When i got my results, i just smiled and smiled and smiled, and said, i knew im not just stupid and clumsy! They sent me home with a book about hd, and said come back in a year. My husband did not even come with me for the results, because HE could not cope with it, and he still doesnt cope well with hd, but he's getting better.

So i went home with a stupid pamphlet about hd, and that was it. I had told them i could no longer read from paper, only computer screen. The neuro said thats cus i have slow eye sacchades, but still, i was sent home with a book. I kept trying to read the book and couldnt, and my husband wouldnt read it for me.

In hindsight, i think i definitely could have used some follow-up. I could have used some phone calls. I could have been told about local support groups, and online support groups. I could have used some education as to what hd was. I would recommend for anyone testing, to take all the pre test counselling that is offered.

For 6 months i walked around with a grin, saying, see im not stupid, i have hd. But after 6 months i lost the grin, and suddenly shock set in. I didnt even know what hd was. All i knew was people got it in middle age or older, and they lose mind and body function, and go in a nursing home. And the only other thing i knew was what my CAG number was, and what that meant. I am serious, that is all i knew! The reason i didnt know what hd was, is because my dad just got symptoms 2 years ago, 3 years after me.

So after 6 months of smiling, i suddenly went into shock and was crying around the clock, i was terrified and didnt know what was happening to me. I didnt know how to google, had never done it, so i asked my daughter, and she told me to use Ask Jeeves. She said just type in your question. So i spent the next 6 months of sleepless nights talking to Jeeves lol.

Well i found the information i got on the internet was incredible. I would just type in, what is huntingtons disease, and i would get very good info, mayo clinic, national institute for neuro disorders, medline plus, and always, the lighthouse came up to. This was before the hdac was online i think, 3 years ago. I learned about CAG's, that there was such a thing as jhd, that there are lifestyle issues that can come into play. And always the lighthouse came up too, and i started just reading every page on there i could find. I was sooooo lost that the doctors just left me a pamphlet, and the name of a disease, and i had to find it all out myself. I also discovered the canadian hd website, and I discovered that people with hd were able to get support from the society, and i thought, well how come nobody is phoning me or supporting me. I am sent home with the diagnosis from hell, with a huge smile on my face. Shouldnt that have hit them wierd, that just maybe i was going to go into shock?

And when i discovered the lighthouse, i discovered that they had a forum. I had never in my life even seen any kind of a forum, never the less posted on one lol. But i took every ounce of bravery in me to do it, because i had to. I had nobody that understood. I also liked all the pro active information on the lighthouse. The lighthouse and the hdac mean everything to me. I dont regret testing at all. I am so glad i did, that i finally knew what was wrong with me. That i finally found people i could ask questions, vent and get support. And that, knowing what is wrong, and coming to terms with it, and trying to be proactive helps me to live with hd. I must be in a mood, i think i just wrote a book...oh well, sorry guys



Edited 4 time(s). Last edit at 09/11/2007 02:34AM by Barb.

Ya know Batesmn .... in the end I have always left the decision to test or not to the individual. I did with my wife. She never asked for my opinion to on the subject and I never told her what I wished she would do. I also might point out that a spouse of someone at risk is differently but equally at risk of HD and all it implies. The only difference is the spouse is at the mercy of the the at risk spouses decisions. They have no decision what-so-ever.

Some people make the decision based on what is right for themselves... some on what is best for those around them. Most I would bet is a mix of the two. I do have an opinion on the subject... I have two more little at-riskers who may actually value what I think about testing. But what I stated had nothing to do with being a spouse or a parent. If you are considering testing for reasons beyond the "want to know", "don't want to know" reasons then there are some. If you are testing so you can plan your best future.. I pointed one out in my opinion. I didn't say testing was right or wrong. I agree that denial is not a reason people choose to test. I think it should be because denial is a big issue. It hinders treatment... it hurts families. If testing early helps a person to accept HD and adjust... then why not consider that? And what difference if the point is made from someone not at-risk?

I went though the roller coaster ride before... right through the counseling sessions. I am fully aware of the emotions of it. Now I have two kids who both know they are at risk. Wouldn't you suppose I put myself in their place so that I can discuss everything as sensitively but honestly as I can? Sorry for the irritation however.

JL Wrote:
-------------------------------------------------------
> So she acknowledges that she has HD, Ken?
>
> And that she inherited it from her mother?

==========

Hi JL,

My mother has limited medical knowledge, even of her own situation. She knows her mother had the disease, and now sees herself and some of her siblings developing similar symptoms. But, if I read her mind right, she tends to think of it as a misfortune rather than anything else. She lacks the idea that it is a genetic problem and the gene might be passing onto the next generation.

I once tried to hint to her my concern about myself, and she looked doubtful and said it was impossible. I ended the topic immediately.

I know it may sound weird to many of you but it is something I think I need to handle carefully. I wonder how honest I should be to her. I do not want to upset her and add to her emotional burden by telling her that her children are at risk.

Ken

I know that one day I will test because I need to let my children know their status. If it were not for them, I am not sure I would test unless I had symptoms like Barb did when she tested. I am planning for my future knowing that HD could be a big part of it. Eric, you mentioned testing for treatment purposes but as we all know there is not any treatments availalbe, only symptom managment. If there was a treatment, I would test. I just really do not want to know. I guess I look at it as looking in a crystal ball and seeing how I will die one day. I wonder if the average person would want to know that if they had the chance. We all are going to die one day and should all plan for future care needs. I am an RN and see people die everyday that are not prepared for chronic illness care needs.

I think it is next to impossible to know how someone who at risk feels unless you are at risk. The same applies to someone who is pregnant, someone who is given a cancer diagnosis, the pain of losing a child, etc. It is impossible to really know how they feel unless you have been there. I am not saying that you can not have valuable input, though. My husband used to say he wanted me to test so I would find out that I did not have HD. Never did her consider that my result could come back positive. I do not think that is a good reason to test!

Well, Ken - I do understand the need to handle the issue with kid gloves. No parent ever wants to even consider the possibility that they might have passed the gene on to their children!

Batesm - You're quite right that there is not "treatment" beyond symptom management. But I'm not sure that's a definitive reason for not testing.

My positive test has enabled me to be proactive, in terms of qualifying for disability benefits. That has been a life-saver.

Having known many people at risk in the ten years I've been active with the HD community, I think both positions on presymptomatic testing are entirely reasonable. I've heard many people say that they don't want to test until they are symptomatic or there's a treatment. Others feel the need to know because that's congruent with their personality or because they have life decisions to make that are dependent on the results, such as having children. I've also noticed that sometimes people who had not planned to test, do so as they hit middle age and find themselves thinking about HD too much and constantly symptom hunting.

The problem I have with the whole testing issue is the gap between when HD affects the individual and when neurologists are willing to say that an individual is symptomatic. Clinical onset is defined based on certain neurological signs that a neurologist can see during an office exam. They are looking for certain movement impairments.

But if someone has significant cognitive and psychiatric problems which are happening first and the neurologist won't diagnose HD because movement isn't sufficiently impaired and the person is in denial, the consequences can be very serious. We have all known people who lost their jobs and benefits, alienated friends and family members who should have been their support system, and did things which were dangerous and financially disastrous because of impaired judgment and yet were not considered symptomatic!

I think that if this issue were resolved, we family members who are not at risk might not feel so strongly that we too have an interest in testing. But as it is, I think we do.

My former husband was lucky to have a neurologist who did diagnose HD even though his movement problems were still minor. It allowed him to retire on disability because he couldn't perform his job any longer instead of being fired. It allowed him to keep the support of others who might otherwise have thought he was just a difficult person. It allowed him to work with the doctor on getting the right meds to treat his symptoms. I think the fact that he had already tested positive may have been a huge factor in the neurologist be willing to make the diagnosis.

When was your ex diagnosed, Marsha?

And was it a clinical diagnosis or DNA test - or both?

He had the DNA test in 1998 and was clinically diagnosed in 2000 after he reported to the neurologist that he could not keep up at work and was having serious memory problems. He was still above average in IQ overall but didn't do well on some of the cognitive tests.

That, by the way, is the problem with Social Security disability. The way the manual is written, they are looking for one big disabling symptom like severe chorea or a drop in IQ below normal. HD is not like that; there is a constellation of (sometime subtle) symptoms which together make it impossible for people who are symptomatic to work.

True there are no proven therapies for hd. Nor proven preventatives (apart from pgd). The age of onset does correspond to the CAG count but, for a given count, there can be decades of variation. At the extreme some might show symptoms in their twenties where others only show symptoms in their eighties. Something must account for this variation.

The factors that cause hd to appear early rather than late may be unknowable and uncontrollable. They might depend, for example, on something as random as the order in which one was exposed to otherwise inconsequential endemic cold viruses in infancy. Or even more obscurely on say the genes that shape the nose or ear. Or any other of million random events in a person's life.

On the other hand perhaps there are things one can do to significantly delay onset. From my readings on hd and other degenerative neurological diseases, I have been persuaded that hd might involve a cascade of protein mis-folding similar to that found in the prion diseases, BSE and CJD. Preventing the misfolding in the many years before the disease manifests could then delay the onset.

Fortunately there is a common food item that likely does exactly that. It is dirt cheap and totally safe and has been consumed by millions for centuries. It is the spice turmeric containing the substance curcumin (not related to the spice cumin by the way). Curcumin in usual dietary dosages has been shown to induce the production of heat-shock proteins that serve to prevent protein mis-folding.

Because it is so cheap and safe and may be of benefit especially in the decades before symptoms appear, I provide curcumin to to the untested at-risk adult children of my phd. They take a capsule every other day containing 500mg curcumin and 3mg piperine, a black pepper extract that improves absorption. This matches what many Indian subcultures consume normally in their so-called curry cuisines. I myself use the spices turmeric and black pepper regularly in my diet at about the same level as in the capsules.

It is, of course, only a hope that the curcumin will be positively effective and I would not advocate its use to the exclusion of other approaches. It depends on a long line of ifs, but it is nevertheless a hope even for those untested yet at-risk.

Barb, what an amazing story. You went through so much alone, and on so little information!What a difficult time you had. I hope you are at a better place in yourself now.
I appreciate your sharing it here -- thank you. I can relate to that lost feeling.
Thanks too for reposting my mini-blog as a thread last week. Im not sure how everything on the forum works yet.
x Fleur

Ladycashel,
Im so sorry about your test result. Wow. It's very good of you to share it as its still so recent. Yet you seem to have a fantastic attitude and I'm inspired by your outlook.
I also hope to get some relief from the anxiety of not knowing...though Im sure there will be new worries with either result. I have two kids too.
There's a Grateful Dead song I've always loved, "Uncle John's Band" and the first line is, "Well the first days are the hardest days, dont you worry anymore."
So hang on in there.
Thank you for your good wishes. But like you said, if I have it, Ive always had it.

xx Fleur