Hello, I'm new to this site but I'm really glad I found it.
For the past 3 months I've been feeling pretty isolated with my problems, but reading some of the stories here I can tell I'm not alone.

When my husband and I got married and started a family I found out there was a history of HD in his mother’s side of the family. But we didn’t know my husband was at risk, since my MIL told us long ago that she had been tested and didn’t have the mutated gene.
Needless to say it was a big shock when we found out she had been lying to us (she was never tested) …. 3 months ago my husband was diagnosed with HD (CAG 43) and his older sister found out she had HD 6 months ago.

Determined not to make the same mistake as my MIL we shared this information with our three children. Our two daughters are 23 and 20, and our son is 16. So they are all old enough to know the truth about their dad.

Both of our daughters are in committed relationships and have been talking wedding and children with their boyfriends, so they both decided they would get tested as soon as possible. We’ve had some pretty stressful months first with counselling and later waiting for their test results.

Last week was when we finally found out what a grip this disease has on my family – both of them tested HD positive. I no longer feel like I’m on a rollercoaster ride … right now I’m free falling!

My daughters are handling this very different, the oldest is crying all the time while the youngest is in shock and walks around like a zombie. My heart is breaking every time I look at them, but I’m trying to keep a straight face when they are around. It’s up to me to keep the family together at the moment, and I’m determined to do just that…. the only problem is, I’m not really sure what I can do to help them.

How can I support and help my daughters while they come to terms with their test results?

I make myself available to talk and listen whenever they need it, and I never miss a chance to give them a hug. I wish there was some way I could ease the pain they both feel, but most of the time I just feel so sad and useless.

Not much to really do...everyone is different. I would just keep reminding them this is not the worst news you can get...while it is not good news at all-but it is not the worst.

The aboslute best way to deal and cope is to just become a mentally strong and super positive person-not easy to do at all.

It helps me to not only think of the negative but to focus more on the other blessings in my life. The disease is what it is BUT it is also what you make of it.

Try to show and remind your daughters of the blessings.....for me (my husband just tested positive) and we are both young 25 and trust me I hurt very badly, but I am so much better and happier now. I have had every single bad thought you and your daughters have had...still do sometimes.

My focus is on that I have my husband now today and God willing a good few years still to come...my friend lost her husband in the war--as do so many other women. Some lose their loved ones sooner or there are worse illnesses that are out there or a terrible car accident who knows!

I focus on how grateful I am to have a loving supporting family and husband--not too many have that.

I focus on my own health, and thankfully I do have a great job.

I would get jealous of all my friends getting married and having kids---oh it would pain me. I got over that when I realized their life is not mine... and as long as I get jealous I am trying to live their life and not my own.

I recommend them reading some motivational books-maybe you too- read together and discuss--it really does help to get your mindset right. I also got to understand my faith much better than I ever have and that has helped me ten times more than I ever thought it would ever help me.

Trust me this will pass...and it takes time and patience... I was in such a dark place about six months ago. With time, patience, and praying I am such a better and honestly happier person than ever.

You or your daughters can PM if you need at all... they are sooo young and they have so much to look forward to in life.

The best thing to do is just get a good mindset in place--that takes a lot of patience and time.

First, welcome to the forum.

Minnie, right now you are free falling and as the mother of two HD+ sons and 3 at risk grandchildren, I get where you are. It is a sickening feeling. I would suggest that you stay as positive as possible and try not to project too far out.
Right now your mind is reeling with the impact of this devastating news. Try to take a step back, some deep breathes and just go one day at a time.
There are reasons to be hopeful about some of the treatments in the pipeline.
You and your husband did the right thing by not hiding HD for yet another generation.
I remember those first few months, even years and the depth of sadness that came over me, but...you can and will get up and face the day for your daughters and husband. You may not feel like it but you will.
I sought out knowledge, and put my energy into raising awareness, building a support network that has held me together on more than one occasion. Is there a COE near you? Our COE social worker, Stacey Bartons, was then and is now, a wonderful sounding board and resource for information. Your family might benefit from counseling with someone who knows about HD.
I wish you peace and I hope you keep coming back here to talk, this place is filled with amazing people and stories about living HD.

Take care,

Carla

Oh, Minnie, I'm so sorry for what you're going through! I really have no words, because I really just don't know what to say. You will all get through this, though, I'm sure of that! Somehow, some way, our resilience as human beings is amazing and can mentally find ways to deal with such devestating news and come out more positive, hopeful, loving and determined . . . it definitely takes time, though. Please know that there is more hope than there has ever been in the past, so there could be new treatments and/or a CURE right around the corner, before your girls even develop symptoms! We're all here for you if you need to vent, cry, anything . . . thoughts and prayers to you and your family!

Welcome to HDLF, Minnie. I am so sorry that your husband was diagnosed with HD and that your daughters have tested positive. No wonder you are in free fall! I'm afraid you are right, it IS up to you to keep the family together and I can tell you, based on years of experience, that you WILL find the inner resources to do that and to cope with the ways that this disease will impact your family.

It takes about a year to come to terms with positive test results. Different people have different coping styles so it's important to take your cues from your daughters as to what they need from you. Hopefully, after the initial period of grief, they will want to fight back. There are support groups held locally, there is a national youth group (the NYA), and websites where people can post and chat. Counseling is available from some of the local chapters of HDSA. There are some things that people can do to stay healthy longer until treatments emerge from the pipeline. Exercising to fitness, a Mediterranean diet, eating foods rich in antioxidants and Omega-3 fatty acids, blueberries, and supplements like creatine are all strategies pursed by some of the forum members. Many people participate in clinical trials to test potential new treatments or observational trials to develop new methods of assessing the disease and find and validate new biomarkers (desperately needed to shorten and improve clinical trials. Even not-at-risk moms can help out by participating in observational trials as part of the control group! Some people enjoy raising funds and awareness.

I have (obviously) taken great comfort in following the research closely so I have a sense of where it's going, and when we are likely to get treatments. It keeps me off the roller coaster of hope and despair to know where things are in the pipeline and I feel that I am a better caregiver for keeping up with new knowledge about HD and current medications and standards of care. Some people at risk or with HD like to know about the research. In my family, everyone leaves it up to me and they just like to hit the highlights for them from time to time.

I did a webinar on coping strategies that can be heard here by clicking on the link at the bottom of the page: [www.hdsa.org]

We can help with support here (and you can as well). There is nothing that can happen that we haven't heard and some will have experienced. This is not a disease anyone would choose, but there IS life after a positive test and after a clinical diagnosis.

Hugs,
Marsha

Welcome. There is definitely life after a gene positive diagnosis. It may not feel like it right now. But there is. The Youth Group, which Marsha mentioned, the National Youth Alliance (NYA), has and age range into the twenties, so both of your daughters may be eligible to participate. I am sure you can find information for it online. When I was at the National Convention one year, the members of NYA were amazing! As Marsha says, you need to take time to grieve. There are others on here, of many ages, who have teasted positve and they will sign in with their reactions. One young man started a website for young people. He will definitely sign in about his website. There are a lot of resources. By reading old threads and new threads, you will find that many people are living happy fulfilling lives with a gene positive status. Others are also living happy fulfilling lives in the early stages of Huntington's Disease. Others are also living well at older ages with lots of spunk and vitality, even as the disease has progressed.

Thank you so much for the kind words and encouragement.
I guess the keyword is patience … not one of my strengths, but I’m going to work on that.

I live in Denmark so I’m not sure what support options I have here. I have however joined our local HD Association, and I’m planning to get some contacts from them.
We’ve contacted the genetic testing centre today and asked for an appointment with one of their counsellors, since the youngest of my girls need some professional help adjusting to her new reality.

I do try to stay positive not just for the kids but also for my own sanity. In my dark moments I see myself in the role of a caregiver for the rest of my life (I’m 46) … first for my husband and later for my children.

Right now these are the thoughts I try to focus on:

Considering my daughters age there is still time, so I’m hopeful there will be some form of treatment or cure available in time to help them.

Even though the HD comes from their dad both daughters have a slightly lower CAG count than him, this gives me hope for a late onset. Their dad didn’t start to present any symptoms until he was 45.

Yes Minnie patience was 100% not one of my strenghts in fact still isn't ..but I feel patience is kinda like quick sand the more you try to find and move and search for it... you get more stuck...but as soon as you can manage to be at peace you can get right out...

For me as soon as I was patient and found that peace..things feel into place. I was in a very very dark place too...and you know it still is uncomfortable this "new life" but you get comfortable with the uncomfortable.

And good job on focusing on the positive...and it is OK if the negative creeps in - LET IT but try and TURN IT for the good. Just an example----Yes you will be a caregiver..but maybe there is some time before things get worse-not sure what stage ur husband is at (that you can enjoy). And think of all the time you DID have and how some people don't even have that. Hopefully some treatment for your daughters ( I hope there will be something for my husband)...and most people do have to be caregivers some longer than others-- and possibly get some help as a caregiver- relative, LTC insurance, part time home health. I bought LTC so I can enjoy the time w. my husband instead of being drained (I live in US- so we need LTC).

Just as you are able to cope.....you can possibly lead your daughters the same ways that helped you and maybe then need a little more nudgging....so counseling is great..personally church helped me.

Wishing you the best!!!!

My Heart goes out to you...My Husband was diagnosed 4 years ago (Cag 45) he has had syptoms for 11 years...we have 3 sons at risk the two older ones have come close to testing and then back away they are 26, 24, 18....My greatest fear is a positive result for them so when i read your post i feel for you so much...i cannot and will not say as others have that there are worse things because i do not agree with that....and others have said that to me and it does not bring me comfort at all...I also like you see myself as a care giver for ever!! I see this as a storm that never ends!! I feel like you cannot compare HD with anything else as it is very unique and has so many ways it effects every family ...so many layers....it takes the person long befor they are dead...my husband is in the 3 stages and he is not the same person at all...i cannot stand the thought of watching my children changing the same way and forgetting what they use to be...We have had the most amazing support system in our friends and those who are so compasionate that is softens my heart so much and I just hope you have the greatest support system... Tons of Hugs to your Family... Nila

my husbands grandmother was diagnosed w parkinsons desease and one b4 her died in a mental hospital so when his father died of HD we didnt know much about it my sons are 18 and 15 they hae chosen to wait til they are serious about kids my Husband was just diagnosed but i knew well b4 just from obsering unfoutunately his autnts and uncles all died later 8 of them he has 1 bro and 1 sis w it too so i feel so guilty too for not knowing enuogh about it b4 having children but we didnt know how rampent it spreads but i still havent been able to cope so i just take one day at a time

Minnie,
I'm glad you are getting your daughter in to see the counselo at the genetic center.
paula