Hi Everyone, i'm new to this forum and so is my family. My father recently found out that he is positive for Huntigton's Disease with a score of 44. We found out in the last year that HD has been passed down, we aren't sure how far back but we think my deceased grandfather suffered from it, although never diagnosed--he had Polio so I feel as everything got put into that. I'm 24 years old, newly engaged and now scared to death of what my future might entail. It's hard to talk to friends and other family about it because I don't feel they truly know the effects, the risks, the chances you take both by getting tested or not. It's as if they don't think i've thought about kids, health insurance, my job etc....i've thought about it all over and over since finding out the news less than a week ago, and it doesn't get easier. The more I research, the more scared I get--I made the awful mistake of youtubing HD and I wish I hadn't, but I guess it's reality of HD.

The question I keep getting is "so are you going to get tested" and I hate that question so early in the game, this is not a black and white situation...there is more grey area than anything. But I know myself, and I know I am a planner. I like to plan my days, my years, my everything...I like to have a plan and goals for alot I do in life. My thought is that this situation is no different. If I don't get tested, I will forever have so much unknown in my life, and would be potentially passing it to my someday kids. If I get tested I feel that I can be part of several trials going on here in the Colorado area, get onto the vitamin regimen and do my best to prolong symptoms. If I don't have it, I'd like to say i'd be free and clear but I have a father and 3 siblings that could potentially have it---so there is no free and clear but there is a peace of mind in knowing whether I have it or not. I do know one thing; no matter what happens, what the results may be I cannot stop living my life the way I am now, I need to live in the present and enjoy life for all that it is and enjoy all the people I have in it. HD or not, I still have my life today and for hopefully many years to come.

I'm trying to stay positive, and I just wanted to get my thoughts out. I know there is alot that needs to be in place prior to getting tested, and I would love to hear what other people have done prior to testing. I know of a few things to do: ensure your health insurance, max out life insurance, get Long Term Care insurance. What are people's thoughts on getting privately tested vs. going through insurance.

Thanks for reading my ramble....

Hello Katierae13,
My husband just tested positive for HD...and the main driver for us testing is we are at the point in our life when we wanted to start a family and it just felt like this is something we needed to consider and even consider PGD. Now while I am still scared of IVF and PGD and all the obstacles (financial and emotional) that go with it---it is just something we need to consider and decide for us.

The decisions have not been easy at all--maybe read older posts about testing. We did get LTC and Life insurance before testing and we have health care coverage already in place from our work. Most people do not go through insurance and do anonymous-- I believe that is the best bet.

We all do the youtube search and get scared..but remember HD affects people differently and there is so much hope for treatment. What helped me to cope a to get the results of my husbands test was to know that that moment won't change my life....the disease will be in my life no matter what..it will just change me knowing and how I would plan--nonetheless--no matter how much I tried to prepare for bad news---the positive result hit me like a ton of bricks--but you do learn to pick yourself up.

Welcome to the forum and staying positive is THE BEST way to cope with all this.
Wishing you the best and feel free to PM if you would like.

Hi

Sorry to hear about your dad's recent diagnosis. My father in law was diagnosed about 2 years ago so I definitely know what you are going through... except it was my husband who was at risk. I know its a tough time.

Testing is a personal decision and its the right thing for some and for others its not. You know yourself best and what the best approach is for you. My only advice is that you don't need to know right this minute, so take the time to do some soul searching and thinking to make sure that the time is right for you. While I agree that the unknown is worse than the known, its a big decision and you can't undo it once you make that decision.

I wanted to comment on the testing process and share our story. My husband was adamant about getting testing as soon as his father was diagnosed. He knew that he had to know. It was scary for me and while I wanted to know... I also didn't. In the end it was his decision. Prior to testing, we talked to a genetic counselor over the phone a few times and we attended our local HDSA chapters yearly forum. It provided a ton of information on the disease, showed up progress on research and medications and helped us reach our final decision on testing. There were 4 different genetic counselors present at that forum. We talked to all of them and we were fortunate that one of them told us that their hospital tested totally anonymously. We made an appointment, were given an alias and paid for everything out of pocket. The only real information they had for us was a cell phone. We decided on this approach because of the realization that if positive but no symptoms, we didn't want this in his medical records. We know that discrimintation can happen (medical, insurance, jobs, etc) and didn't want to take that chance.

We were very fortunate that his test results came back negative. We could have gone back to our insurance company and submitted the claim for the test to get some reimbursement, but we decided against it.

I wish you all the best with what is to come. I know this is a tough spot in life, but stick around this forum when you need help. There are a lot of great people on here and a lot of good information. People can relate to what you are going through and you don't feel so alone.

Welcome

Smiley, thank you for the positive post. Did you and your husband do private testing if so, how much did the out of pocket testing cost you? Jodie3134, did your husband do any counseling with the test? If so, was that also anonymous and paid out of pocket? The current question I have is that when you do get tested you generally do counseling with it as well, should all of that be anonymous as well? Should any visit to a genetic counselor be done as anonymous?

There are so many questions going through my head! I'm starting to feel like I need to do a day off from work for a "mental day".

The hospital where we tested was a one stop shop. We met with a psychiatrist first. He talked to both of us and then my husband and then me. My husband also had to complete a questionnaire/exam of over hundreds of questions. I think the purpose of this was to test our state of mind and to see if we could handle the results (either way). After that meeting, we then met with a genetic counselor. She talked about the genetic side of the disease and also we talked family history. After that was the blood draw and then we had results in less than 2 weeks. So all of it was under the anonymous name. All together it cost us around $1,000.

When we talked to a genetic counselor over the phone (it was not the one who tested him), they did have his name. He also sent us some pamphlets in the mail so I guess he had our address too. That was a less formal conversation and I doubt they had a file created or anything. But... now that I think about it, I guess they could have.

I don't know where you are located, but from what I understand, anonymous testing is not common. There are places that do it, but not as many as don't do it. Maybe others can chime in. Maybe you can also see if there is an HDSA Chapter near you. I would think that someone there could give you ideas on the options around you.

I know what you mean about a mental health day. It's a lot to process

Hello Katie,

I'm very sorry about your father's diagnosis. You were in no way "rambling." Everyone here is in a very similar situation to yourself and are great for support. I recently found this forum myself. I'm 24 years old and have one brother (at risk). I knew about my mom's test results for a few years before I decided to get tested. I was also falsely told by my family that I didn't need to worry about Huntington's because "I couldn't get it until my grandfather got it." Once I looked everywhere online and pretty much was scared out of my mind, I then realized it wasn't as bad as I thought. Don't get me wrong, it's a horrible disease, but there is so much research going on! I found out about different things I could do to stay as healthy as possible. I decided I was going to stay positive through the whole thing and fight the disease as much as I could and hope for a cure.

I'm thankful for this forum because I learned there were options for having kids without passing on the gene. My boyfriend and I decided we needed to know. I have a great job and health insurance. I also have life insurance through work. I looked at long term health insurance, but due to the cost ($85 a month), I realized I would rather save on my own since my job matches my 401K. I thought even if I got sick ten years before my grandfather, I would have plenty in my retirement that would cover my care. We prepared ourselves for a positive result and scheduled the testing. I decided to test anonymously at a place where I only needed one appointment to draw blood. I talked to two genetic counselors (one was in training), a neurologist, and a neuropsychiatrist. I schedule an appointment for 5 weeks later. Thankfully, I somehow was negative. I'm still accepting the results. Everything was less than 600 dollars. My name on the test result is a bunch of random numbers and letters that my nerologist matched to my chart.

Testing is a very personal decision. You don't have to get tested if you're not ready. You have the option to go through non-disclosure PGD-IVF to have HD-free kids. There's also always adopting! Good luck in whatever your decision may be.

Feel free to PM me if you have any questions or want to talk.

-Mae

Kat, keep planning your life, look to the future and expect it to be there. Someday it may be different and you change and adapt. It would be tough at your age. I have two sons, one is your age and it prays on his mind more than he lets on.

I believe someone at your age and not having symptoms should protect your privacy. Unfortunately it can and will be used against you. Big Insurance companies sell policies with lots of promises. Payout requires them to minimize stockholder profits which is against the general premise of big business.

I'm sorry for your grandfather. When you feel the need to be tested, when and if you show symptoms, go from there if that's what makes you comfortable. Make a move on that. Don't beat yourself up everyday with this worry. It won't help.

You could always use the supplements now just as a backup and maybe it will help in the long haul. The best advice I have seen is from supplements and excercise to fitness. If you are serious, go for it.

You will see lots of sound advice here. Only you can make the decision about testing and it sounds as if you will make an informed decision.

Best of luck to you and your family.

Mike

Thank you to everyone for all of the kind words, it means so much.

Deciding to get tested or not takes a toll, but at the end of the day it's about what will be best for my fiance' and I, and that is what we are sorting out. It's been a roller coaster of emotions lately, but that's expected HD is alot to take in.

I look forward to looking to this forum for support and advice.

Welcome, Katie.

So sorry to hear about your father's diagnosis and the recent discovery that HD is in your family. The first weeks and months can be so fraught with confusion, fear, desperation, etc. You're in my thoughts, and I sure do wish the best for you. It seems like you've been able to maintain a really good attitude throughout this ordeal, though (all things considered). Trying to stay positive, take things one day at a time, look into what you need to get in place prior to testing (if you decide to test) . . .

My husband underwent testing about six months after we learned of his mother's diagnosis. He did not test anonymously, but, rather, went though his insurance. Beforehand, we did increase our insurance coverage. We purchased long-term care insurance and upped life insurance. He already had LTD and health insurance through his job.

We did run into some snags, though, during the process of obtaining the LTC insurance. We were told that we could get a better rate if we purchased an LTC policy on the both of us (him and me). So, we thought, why not? I had begun seeing a counselor, however, after finding out about the HD risk so soon after our infant son was born, to help me cope with the result and the associated stress, fear, etc (I was having a really rough time, and was the new mom of a premature, at-risk 3-week-old).

Of course, those (the mental health visits) were the records that the insurance company requested, obtained, and were (I'm sure) about to scrutinize, if we hadn't called to find out what, exactly, they had, and why things were taking so long. I immediately rescinded the release for them to look at my records, and we told them we didn't want insurance on me. They were surprisingly reluctant to drop me from the application; I had to be really, really adamant. During those visits (with the counselor), I had talked about my husband's being at-risk, so I really didn't want those records looked at! It was really disappointing to think that, in a huge way, we risked being penalized, enormously, for my attempting to receive the help I needed in coping with a great family stress.

Luckily, we did get insurance on my husband, after I was dropped from the application and my records were "destroyed" (so they said they were going to do, at least).

Even more luckily, my husband tested negative late in February of this year. I had never had a happier day in all my life.

I sure do wish the same for you, Katie. Again, you're in my thoughts. Please feel free to PM me if you have any questions, want to chat, etc.

Sincerely,

Bluegrass

Our experience was similar to mae88 as far as the one appointment and then follow up for results--althought it was not too long ago can't remember the cost (didn't use insurance) I think ball park $900. Probably mentioned this but we did get LTC and life insurance--but that was something we planned on getting if we tested or not--gotta lock in the good rates while we are young!

Oh yeah--- and if it were me personally--- I would concentrate on the wedding alone (worry about testing later-you're young there is time)----wedding planning is enough to make you nuts-kidding Take pleasure in the wedding and the wedding planning

Then yall can tackle testing together! BUT of course it is your life and your decision--wish you the best!

Hi Katie. Sorry about your father's diagnosis. There are no easy answers as to decide to get tested or not. My wife, who's father and two sisters had it, talked about it a little when we started dating. I never heard about this disease so I didn't really say much. The only thing I had that could possibly help her was prayer, so that's what I did. When my wife did decide to get tested, she did so without anyone's knowledge. Weeks later the results were that she dodged the bullet. I realize that this is one of the few good news stories in this forum out of many not so lucky ones but remember, there's a 50% chance of you not having this gene. Whatever you decide, know that there are many people here keeping you in their thoughts and prayers.

Thank you for all the support for my daughter. These past two weeks have been hell. Once I foundoutI was tested postive the flood gate of questions came to mind. I thought I had everything under control. But you nevr do. I have four children Katie is one of the ones I told. Theother one I told also live in CO. The two youngest I haven't told. they are 17 and 19. Now I fight with when do I tell them.
The oldest is going to get tested to but will do it anonymous.

I Mclean

Wish yall the best it is so much to take in and I knew when I found about HD in my husbands family---right away I just wanted to get everything over with and have my husband test and try IVF and have kids--- just wanted to tear it off quickly like a bandaid.... a good year and half later here we are getting ready for IVF (my husband tested positive).... I needed that good year and half and it has taught me so much.

Take baby steps and tackle one decision at a time and try to not worry too much about the next decision-break down this challenge into smaller obstcales---- prayer and understanding my faith has helped me tremendously. The news is fairly new take some time to accept it.

Welcome! Glad to see you found this forum in these early weeks of discovering HD in your family. So sorry that you are experiencing this.

My experience with testing:

In the first years of discovering HD in my family (which explained a few things), I knew I had to be tested, I just had to know. I just wanted the insurance first. Friends and family told me I was ridiculous for wanting to get tested and that I shouldn' worry about it.

Well, years after I had the insurance: I was scared to death to get tested. I decided to "plan" as if I had it and live to the fullest. It worked for awhile.

This is when I started "losing" my mind. Researching, symptom hunting, debating "Am I paranoid about this disease because I have it and paranoia is a symptom or am I just really crazy?" Back and forth, back and forth.

Then I attended the clinical research synposium in Inainapolis in 2011; a speaker there said (as I was silently crying) "If it has gotten to the point where 'not knowing' is affecting your quality of life, then it is time to get tested."

During this same time period: I saw my sister go from fully healthy and at-risk to mid-stage HD in a year (even lost her children, right after I attended that conference). Maybe her early signs were depression. I never saw the gradual decline with her. Fast and full force. I was so angry with HD and fearful that it would be me next: getting my children taken from me and not even understanding why. I was NOT going to let HD take my kids from me. I would get tested and make the decision to have their father take full custody. I wanted to be able to make the decision to do what was best for my kids: not HD, courts, lawyers, DHS, ect...


I already knew I had it. I came to terms that I would have to give up my kids. I was to scared to have hope; because I didn't think I could handle having that hope taken away from me. Irony: I don't have it. I went through insurance and did not complete any counsling. I declined and scolded my neuro for allowing me to do it without counsling I didn't tell anyone I was being tested: my family was struggling with the recent suicide attempt of my sister. My getting tested through the insurance was a big F-You to HD ignorance and our corrupt health insurance companies. You should not have to hide and forgo the best treatment of care because you have a disease and need it!!!!!!

If I had to do it over again; I would have done it anomynously: I shouldn't have gambled my future. I just got to a breaking point and had to know.

My friends told me "See, now don't you feel silly for worrying so much?" "Awesome, now it's over" "Told you so" (All those responses, though well-meaning, hurt. As if this disease isn't real. It is real to me: before and after testing. This disease will never leave me. It has destroyed my family even before we knew "what" to call it. It caused harm before I was even born. It never leaves. Now I just fight on the other side. sHD. s is for support. Support research, families, awareness, caregivers, cure, treatment, and ending ignorance.

Blue Daisy, thank you so much for sharing your story! Being tested negative when all the family around you seems to have can almost be just as difficult i'm sure. I've thought about that myself, how will I feel if I get tested negative by my oldest most close sibling does have it? Or vice versa? It's such a gamble this 50/50 nonsense. Thank you so much to everyone for their support. It's tough, it's really tough....at 24 i'm having life insurance conversations and long term care conversation with my Fiance not because I want to, but because I have to....just doesn't seem fair. And yes, you Smiley you are very right....I should just enjoy this year of wedding planning, but if only it was that easy!!!! This week i'm staying away from googling research and just sticking to this forum, it seems to help....the things you read online are just plain scary and negative.

I wanted to share with you guys a post I recently wrote for my personal blog:

We all know that life deals you cards, and it's up to you to make what you can out of them....but what if your hand changes at the age of 24 giving potential to change your entire life? Something came up in my life this week that could potentially be like pulling that one card that would give me a royal flush. I can't talk much about it, because i'm not brave enough and because i'm not the only one effected by it. Whether it's cards, poker, a basketball game...i've never been a gambler. I'm not good a counting cards or thinking about odds, math really isn't my thing, but this week "50/50 chance" came flashing into my life like a bolt of lighting in the summer, only it's not going to go way when the storm passes. I always tell myself and my friends that everything happens for a reason, well this week....I wish I didn't believe in that motto so much, because it hurts to think that this would be happening for a reason.


So let's just say...in the game of cards, I feel like i'm playing 52 pickup this week, and I may feel like this for awhile. One thing I do know as of right now is that no matter how bad this game gets, this is my life and I WILL continue to live my life for today, I will not change my goals and dreams because of a "50/50 Chance".

Katie, keep writing! It's theraputic and you do it well; your snippet from your blog brought tears to my eyes. Your insight on the importance of staying positive is amazing. It took me a long time to get there. Some days I'm not. Best of luck, and give updates on the big event! Be thankful you get get to make informed decisions.

Hello Katie, thank you for sharing your story! Your situation is pretty simular to my case. Except that I am 48 years old and I have allready kids, for which I am grateful. My mother started to show symptoms in her early seventies. advise you to get information about HD from the experts, not the scary stories from the internet. I went through a depressive state from them. Now I try to be as hopeful for a cure as possible. Testing is not an option for me right now. I have barely accepted the reality of HD in my family and I fear I can not cope with a positive gene situation right now.I wish you all the best.

Hi Katie and hi to your father, who I see posted as well.

It's all very new to you and I know the immediate reaction is to want to know everything straight away and know all the possibilities, understand exactly what the CAG counts mean for age of onset etc, but the thing about HD is that there are no guarantees about when and how it will progress.

Katinka said to avoid scary internet stories, but those stories you find here on this site are very real and very true, no matter how scary they are. And there are also many stories here which are reassuring and hopeful. They're also very real and very true. Read as many as you can if you feel up to it, as the terrifying and the hopeful are all relevant and they'll give you a greater picture of HD.

Give yourself time to live with your father's positive result before deciding where to go next with your own choices. The advice on here about living a healthy life, eating well, exercising etc, is a great direction to go in even if you aren't sure whether you want to have the test yourself. And you have an engagement to enjoy and a wedding to plan. That will be very exciting and you have to find a way to live with your family's HD news but still carry on with good things in your life.

We've lived with HD in our family for over 100 years. For 80 of those years nobody took any medication as none was available. Life does not stop with HD news whether it's in 1912 or 2012. It carries on, family members with and without HD get married, have children, work, travel, love etc. The positive thing now is that research has given so many more treatment options and the ability for people to choose to have children and not pass on the HD gene, which was never an option for people in the past. There is currently no cure and unfortunately you can't choose whether or not you have HD. It is what it is. But there are lifestyle options and a lot of advice about the best ways to prepare for the future, no matter what happens.

Best of luck to you and your father and I hope you both stick around.

Hello again, I would like to say that the stories on this forum are inspiting and hopeful for me too.

I cannot thank you all you wonderful people enough! My head has become a little

more clear, I just keep writing; both online and in my journals I find that it helps me. I also keep a inspirational quote journal and one quote that has helped me this week is:

"Let your dreams guide you, not your fears"

I know one day I will get tested, prior to planning a family I will want to know. Like several of you have pointed out I have the next year of my life to enjoy being engaged, plan our Jamaican wedding and just enjoy life. I don't need to know right NOW, although my first instinct was to just get it over with. In the year of not know there are still going to be bad days and for right now i'm still going to have to wake up and remind myself not to cry...hopefully over time it'll get easier. I was finally able to focus at work yesterday to get some work done, that's huge progress! My brother and father have both been able to get some anxiety medicine from the family doctor to help them focus, I don't currently have insurance (i'm in the 90 day period with my employer) so i've been doing my best to get through it without medicine and overall i'm doing pretty okay.

I am so glad to have found this forum, it is now my source of information. Doing a Google search for HD is no longer the avenue I take, and i'm very happy about that.

I want to leave another phrase that I try my best to read everyday, it helps guide me in my days.

May Today there be peace within.
May you trust you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith in yourself and others.
May you use the gifts you have received, and may you pass on the love that has been given to you.
May you be content with yourself just the way you are.
Let this knowledge settle in your bones, and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of us.

I hope this note finds everyone well! I'm out to enjoy this beautiful Colorado day with some incredible people!