My father has HD, and although we are estranged, and my mother does not support my decision, I am in the process of getting tested. Does anyone have any words of wisdom to give me? I am so scared of the outcome, and can't help but wonder in what ways my life would be changed. I'm not even 100% positive that I would be able to appropriately handle the information, but I feel as though the not knowing is what is worse. What do you think? Do you regret getting tested?

How old are ya violet? No one is 100% sure what knowing the results will be like. Even some people who test negative can feel guilty. But I assume you are wondering what a positive test outcome will be like. Just from observation... most people who test say they don't regret having tested.... but they go off on different paths after that. Some try and cram in a lot of things into life and others seem to kind of stall out. Others just kind of are normal and just cope. I always thought it was sort of a funny thing saying they don't like not knowing. Knowing just your risk.. you know more than most people do.

That being said have you gotten all your insurance? Life, for any family you have or may have , long term care, and so forth? If you don't, you will know two things, you will be sick and piss poor too.

I'm in first-year University.
Well, I'm Canadian so I'm not exactly concerned about insurance, although that's not something I had even thought of... And I'm very concerned about both of those options. I know that most likely my life will be radically changed if I do test positive. It's so hard to plan for the future when you're not exactly sure to what capacity you would be able to enjoy it.
Do you/your family have HD?

Hi, my brother and I went through the testing process last summer. It took several months to finely get the results. (we were both negative) The not knowing was the worse part of it. Everytime I forgot something, or my hand quivered, my thoughts were that I have HD. If I were to have tested positive, I felt it would better prepare me for the future. My husband was very supportive, but if it would have been his choice, he said he wouldn't have wanted me to test. I just couldn't not know. It is a personal choice. We did have to go thro ugh counceling and it helped. At first I was upset it took so many months, but it was to our benefit because by the time I had my blood drawn I was positive about my choice. Good luck and I pray you will be negative.

My wife recently passed away from HD and her sister is late stage. I have a 20 and 15 years old pair of sons at risk. For them, I want them to get on life's path before they test... and be what they want to be. How long they can be is irrelevant. My oldest is looking at teaching. He also is in University. He is not planning a family right now and is not getting married anytime soon so testing doesn't have any bearing on others yet. Having a good job that he enjoys will have a bearing before HD ever would.

I don't think Canadians get free life insurance. Living off a pension alone is a rough way to go as well... you can insure your income for disability. Not after you test with a positive gene though. I am not talking so much about health insurance. Even in this country if you are poor you get healthcare. The idea is to not be be poor as well as sick. The reason I know is because we were uninsured and we lost our house, a car and really our pretty decent, average way of life.

I can't say for sure if your life will be radically different just from testing and knowing you are pos. If you think it will, then it probably will. Do you think it will be radically different for the better? I do think people should eventually test. I do think that for one... 50% of the people will be pretty happy that they are neg. I also think there are good things you can do with a pos. result. I think family members can prepare, as well as the affected person... for what is coming and what is expected and not expected. But I don't think most of that is that important too young. I think life experience fits in better with getting tested and dealing with the results. I think having something to lose first means you won't want to lose it and you won't. Having something to live for counts for a lot. That's why I advised my oldest son to get what he wants first.. so he will have it and keep it regardless of a gene. It would be a shame to test, get depressed, or over react, and end up flipping burgers at mcdonalds if he was meant to be a teacher.

I can definitely empathize with your brother Pab... Every time that I forget a word, or I get muscle spasms I think "oh no, this is it." But at the end of the day, those symptoms could be from a whole host of things, and not be HD. It's definitely the not knowing that freaks me out. And the wait period! I had to wait 2 months to get my blood-drawing appointment, and 3 months after that for results!

Since I'm paying for all my University fees myself (with help from scholarships), I'm already pretty destitute and cannot afford privatized counselling, or even the transportation to go to a hospital that offers a couple sessions for free. So Eric, I'm already at that stage, and testing positive would only exacerbate it. We Canadians don't get free life insurance, but our free health insurance covers the entire testing process. Unfortunately as well, I don't think that I would be able to get life insurance if I tested positive, not that I could even afford the premiums. But on the positive side, I know that there are a lot of foundations that do offer grants to individuals living with HD in Canada, and I can't help but hope for that being a viable option if it came to it.

I just feel as though if I did test positive, I would probably change my life though. Right now I'm on an academic path leading towards a PhD, but if I test positive, I wouldn't want to be spending the rest of my life in school, you know what I mean? I'd do something that I enjoy more, something that is more short-term rather than long-term... Maybe that's naive of me, I'm not so sure.

Violet, here is an example for you, someone that decided to take a positive test result and kick ass with it. Jeff Caroll was a university student, and he decided to test, and received a positive result. What did he do? He decided to become an hd researcher in the famous Michael Hayden clinic, and he is rather famous himself now, very well-known, and searching for a cure. What are you studying to become? And what do you think you would study instead with a positive result?

In my annual effort to avoid doing my taxes I spent Saturday trying to clean up some of the topic pages.

One of the topic pages that I "finished" Saturday is the Testing for HD page.

http://www.hdlf.org/testing4hd/

The page provides a summary of what we know about Testing for HD. On the left hand side it lists links to related research and related stories. Hopefully you'll find this information useful to you.

Steve

Violet, I love having a Ph.D. More than twenty years later, I still stop and think, Wow, I did it!

At the end of their lives people are much more likely to regret the things that they didn't do than the things they did. Everyone makes mistakes of course, but we learn from them and grow as people. But if we really wanted to develop our talents or get the education to qualify for certain types of work that we dream about doing, and we fail to do that when we could have, we can wind up being sorry later.

Barb, I am so glad that you have posted this. Sometimes I wonder if I would be able to muster the courage to be able to continue on through life like man you've spoken of. But I hope that I would be able to. Right now I'm studying Biology, specializing in Animal and Human Physiology and with a minor in Genetics... in part because I do want to be able to make a difference in the lives of other people with or at risk for HD. However, if I found out that I might not have as much time as I have planned for... I don't know what I would switch into. Probably something that did not require so much school... and I would probably switch a University somewhere warm and by an ocean, somewhere I really loved. I don't think I could bear to live with myself I just threw everything away and spent the rest of my life waiting. But on the other hand, I would want to be sure I could finish everything I felt I needed to do in time...

I did check out that page Steve. Thank you so much for letting me know you'd updated it, the information is really useful.

And yes Marsha, I'm scared that one day I'll wake up and think "what if?" Which is a horrible thing to worry about, since it hasn't happened yet, and who knows how my life will turn out. But I'm also scared that maybe I won't be able to make the right decisions to keep my options open... I don't exactly have a support system regarding this, so how would I even know if I was limiting myself?

For us the decision to test (my husband was the one at-risk) came when thinking about whether or not he had HD became a full time thing - or wondering whether this or that was a symptom of HD or not... my husband was 46 years old. His result was positive but we are both very glad we did it because now we can put our energies into keeping him as healthy as possible and keeping up to date on the science. Of course, a negative result would have been better but he was positive and whether or not we tested he would still be positive. You are at a different stage and it is such a personal decision but, whatever you choose there are some things you can do to keep yourself healthy as possible - exercise, read up on supplements etc. things that you would do if you got a positive result but can also do right now...

Hope:
Have you found that the lifestyle changes and medications have lived up to your expectations?

Hi Violet
I just got my results in October -even though i got the test done almost 2 years prior. I was too afraid to face the music because I really thought that I had it- I was sure I had every symptom. I kept thinking that I had a 50% chance of having it and that was so high that I must have it. I tested negative.
Someone on this site said- remember you have a 50% chance of not having it- and that is the first time I ever looked at it that way- the first time in my whole life so that is my advice- During this just try to remember that you have great chances of not having it.

I am from Ontario, Canada and I had long term care insurance way before I ever visited a doctor about it because if you have anything about it on your file you will most likely be turned down. The Canada Pension disablility or Ontario Disability is really not a lot to live on. I paid about 100.00 a month for mine.

Good Luck

Hi Violet,

I am making the choice to be tested as well. I am 100% sure that i want to know if i have this or not and i cant imagine living wondering if i have it or i dont. My family doesnt support my choice either. If you are not sure you would handle the results well then i would wait until you are. Also, if you contact a testing center they will do counseling to make sure that you are prepared and to help you decide if you want to proceed with the test or not. I am going to talk to them for the first time this week and am told that it will be about 60 days before i can take the test which i am not happy about at all but i guess some people chance their minds after they consider it more.

Its a hard choice to make and i think the answer is different for every person. I have 2 brothers that cant imagine being tested. Just go with what you feel sure about, and if you have any doubt wait. You can always decide later to get tested but you cant decide not to once its done so take your time deciding.

Hi Violet -
For us testing was a very good thing. My husband has always been into exercise but he is now also taking fish oil and blueberry (as well as an anti-depressant) and he is doing very well. We make sure he gets good sleep. I do think the lifestyle changes have made a difference. He is a prosecutor and is functioning at a very high level (doing serious trials), he is snowboarding, biking etc. He is early in his symptoms. He has 3 sisters who have not tested... they worry about themselves but don't want to know...

If he didn't feel symptomatic I doubt we would have tested - we saw the world through rose-colored glasses and just assumed he was fine until he started to feel changes... but the lifestyle changes have made a difference and we are not the only ones who feel that is the case. there have been many threads here regarding supplements particularly fish oil, blueberry, treholose, creatine...and the benefits of exercise.

best of luck to you!

Wow, violet, I am so jealous of the career path you are on. I would love to do that if I wasn't already in my 30's and in a career that I also usually like (and still paying on student loans from that).

I tested positive last year for the HD gene, which proved I was right about my mother having it. To me, I thought that KNOWING was only slightly worse than worrying as constantly as I was about my 50/50 chance. Well the testing process was absolutely the most difficult & stressful thing I've EVER gone through. And the results were STILL an additional kick in the gut. I was really useless/going-thru-the-motions for about 2 weeks before AND after my results, and feel like I'm still "healing" over a year later. I do still sometimes wonder if I should have tried to stop worrying and live with the 50/50. Especially since it had no immediate bearing on big life decisions (I'm married but don't plan to have children).

I did everything "right" as far as getting my insurance. Even if you don't think you NEED Life/Disability/Long-term-care insurance NOW, if you have assets someday and/or people who depend on you, you will wish you had it. So please strongly consider waiting until you can get this in place. You can always cancel it if you test negative!

I have also started lots of supplements to help ward off HD as best I can; I'm not sure if I would have had the motivation to spend money on those with "just" a 50/50 chance. And I participated in one of the studies for pre-symptomatic gene-positive people. That study is gathering data of the most subtle of changes, that may someday be able to be measured as data, so that drugs can someday be tested in pre-symptomatic people as well. So I'm really trying to make the most of my knowledge.

I also "enjoy" keeping up with all the latest hopeful things, and trying to understand the articles (Marsha does a great job of simplifying things just enough). But sometimes wish I'd gone into a field where I could not only understand more but DO MORE.

Even with all the hope out there now for HD, I also think testing would be a little less difficult a few years from now when some of the things in the pipeline have a chance to come through.

I hope you take all of our thoughts & experiences into consideration, and make a decision that's best for you.

Stella: I haven't even really concerned the idea of longterm care insurance... Do you think it's too late? I'll be getting my test results in August/September.

Dreams2Reality: I wish that I was at the same place in my life as you. I just don't know whether I will have the strength to continue on with how my life is, either way. In some ways, not knowing is a horrible weight I carry with me every day, but in other ways, I use it to strengthen me. In some ways, it makes me challenge myself to push harder, to strive to get as much out of myself that I can, because I can't help but feel that I might have to squeeze a whole life's worth of life into half the time... And I worry that I will lose that, whether I am positive or negative. Although if I am positive I don't know by how much my zest for life would change...

Hope: That is extremely encouraging to me! I do research on all the possible treatments that are available, because I really do believe that more than lifestyle changes, it is our attitude towards things that changes things. But you don't really get a real feel for how beneficial some of the remedies and treatments can be.

Sara: Would you mind maybe telling me more about the process you went through after you found out that you were positive? Did you change your life at all?

I thought about PM-ing you, but in case others would benefit from reading, I'll put it here.

Well, I guess the day my life REALLY changed was when someone said "Do you think your Mom might have what your Grandma had?". From that day, I could not get it out of my mind because it suddenly clicked that they were right! By the time I researched a testing place, saved the money, and got on the wait list it was 5 months later, but during that time I NEVER had doubts that I needed to know. I couldn't stand the waiting, but besides giving me time to see how sure I was, it did also give me time to get all my insurance in order. I figured I had a 50% chance of being negative and feeling so much better. But that if I were positive I would take that OK too, somehow. I wanted to get my own results behind me, whatever they were, so I could focus better on Mom. Plus that if I were positive, I could participate in whatever studies were available for gene-positive non-symptomatic people, and take my supplements, and live life to the fullest.

My husband supported testing as being MY decision, but I could tell he did NOT want to know. Still, what was I to do? I was obcessing anway; may as well rip the band-aid off, and see what's underneath, then let the true healing begin if needed.

Still, since I do not have symptoms (besides obcession which runs on the opposite side of my family), we WERE a little surprised that it was positive. We got the news on a Friday, and hadn't slept well leading up to it; but sleeping that weekend was even worse. I really wished I would have gotten a prescription for stress-relief/sleeping, but I would have a glass of wine before bed instead. Added NyQuil the night before my results, which I only share as ammunition for others to ask for something SAFER than NyQuil + wine.

After the results, I worried how differently my husband would look at me, knowing I had the gene, and he'd likely eventually be my care-taker. I started to wonder how we could modify our house for wheelchair accessibility. I wondered if we'd gotten ENOUGH insurance, and read all the fine print. I started thinking about what instructions to leave as an Advanced Care Directive. I had a constant pit in my stomach for 1-2 weeks, just dreading the future. (And again, no meds). I went to work but was really not mentally there. I had only told my husband and about 3 of our closest friends, but you can only talk about it so much, anyway.

I tried to find enjoyable distractions. We started MAKING wine at home. Thankfully it was springtime, so I'd start some seeds for my garden, and spend time outside when it was nice enough. I did my research and ordered my supplements. I found a study. I forced myself to visit my Mom, but I went without my husband, not wanting him to see her and think that's going to be me someday (bad enough that I was thinking that).

We had also recently found a church to join, after really not going for years. Threw myself into volunteer projects, including some that put me around others who were certainly worse off than myself (had immediate health issues + financial issues). Now I manage some of those projects a) because I like helping people; b) because I CAN; and c) never hurts to have good deeds under your belt.

A friend of mine was getting married, across the country; invitations came right after my test. I had just gone to visit the previous year and it would have been financially smart to stay home from the wedding. But I'd told myself I was going to live life to the fullest so I went - and was so glad that I did!

I also find myself making more effort to go along with any fun suggestions that my husband or friends would have. Not being careless with money, but prioritizing a fun experience like a concert, over some new clothes. I've always been a runner, now have the additional motivation that it's good for your brain.

I do come here to keep up with research/people's experiences, and I think about HD multiple times/day, often with a pit in my stomach even though I really do think there's a lot of hope for treatments/virtual-cure that will drastically change what it means to have HD - soon! It was probably about 2 months before the post-testing stress, was back to a similar level as the pre-testing-process stress, and I guess it's somewhat lower today. I AM back to living life, and trying to live it to the fullest.

HD is not coming for me tomorrow. I may have 5 "good" years or 65, or somewhere in between. HD may be cured before it gets to me. Anything else could end my life on any given day. So I'm making sure that my life includes people and activities that I enjoy. Would have been great to somehow find that attitude without the occasional pit in my stomach. Or if treatments had come a little further before I got my results.... But that's how it went for me.

Hope this helps.



Edited 1 time(s). Last edit at 04/12/2011 09:28AM by smiling sara.

Violet, the more I look over your posts, the more I am wondering if now is the right time for you to test. It may be that you need to come to terms with being at risk before you can cope with positive results if indeed you have the gene.

A lot of people test when they get close to the age of onset that their affected parent had and they find that they are thinking about HD all the time and symptom hunting. But you are young yet and with academic goals. Getting a negative result would be great but if you got a positive one, then fully coping with it would probably take about a year and use up all the extra energy that you need for things like studying and taking courses and running around on campus doing various errands. I remember by college and graduate years as wonderful but also hectic. (This also applies to testing while starting a new job or establishing a business or other high energy endeavors; it's extra stressful).

If you wait for a few years we should have some neuroprotective treatments available. It would be easier to take the test knowing that there is something you can do, then to take the test and wait for treatments to get through the pipeline.

My bias is actually towards testing but I believe it should be at the right time for you, when you feeling emotionally stable and your life is relatively settled.

I am all for testing generally too. But at right times and for reasons combined. I think all the people who have tested here that commented came close to that criteria. They have some combination of family support, or spousal support, with life experience to draw on. Even if a spouse doesn't want to know.. they are there just for the hug and pick up some slack. They may not have wanted to know the results but came through for the person who received them afterward.

I am worried that HD is very fresh to you with what sounds like a terrible experience with your dad. Me and my kids had some really rough times too. A certain amount of time and distance helps heal wounds. I know you can rationalize your dads behavior, but to deep down forgive it might take some time. Same with mom for that matter. There is one blessing to be had with HD for some. There is a window of opportunity to put HD down for a while and enjoy nice normal living between generations. I wouldn't be so quick to jump from the frying pan to the fire. It doesn't mean you never test. It means you decide to test when things are favorable to test. Get your act together first, because trying to get it together afterward, if you test positive, is going to be really hard. If you have the tiniest hint it's going to "F" you up, then wait. If you don't have good solid multi-year support right now, then wait.