r/Huntingtons

I know this is cruel topic but before judging me, keep in mind that each of us have only one life to live. Feel free to challenge me.

I've been together with my wife (we are not married) 21 year. In 2019 we learned that her family has HD in their bloodline. First her dad refused to take a test, but in 2022 he started to feel symptoms and diagnosed himself with cag 41. In 2024 my wife was diagnosed with cag 43. She had some psychological issues during this which is totally understandable and now in 2026 when her dad became much worse, she turned into depression and anxiety. Last 6 month she was not able to work anymore because of personal problems. I can't tell for sure, is the HD onset started or not but she is now struggling with heavy depression. I take care of everything, our school age kid, food and all daily routines. I feel like I am taking care of two children by my own or worse. Luckily I don't need to feed her or take to the shower yet. She is turning 40 this year, I am 44.

Facts: I do love my kid and I will not be a care taker for my wife. I am thinking about HD daily since 2019. Only one thing keeps me mentally well is my work I love and enjoy. I have a great career going on and we are financially stabled. Together with my daily HD thoughts, tracking down her symptoms, I have always thought about my own future and what possible ways would be to break up. I feel I still have so much to give and receive in this life, I don't want to commit myself to this. In current situation, while helping her out with the depression I do get angry with her and increase my voice to her. I can't help it.

The biggest problem is, that she is very helpless especially now with her depression and I can't tell it to her face that I am leaving because of HD. I even thought about to cheat and get caught or get myself a lover or something. Which is worse, to understand that you are being left because of HD or because of secret affair. I can't help myself thing about all the possibilities. I will support my child and I am willing to take care of that kid even by myself, there is no doubt in that.

She started medication and she is being taking care and follow up by neurologistic centre. I also visit psychologic few times, but the HD cag is a fact and there is nothing can be done with that.

I (F20) was looking at old videos of my dad (M55) being silly and listening to music and enjoying all the stuff he used to enjoy and it made me very sad to realize that that version of him just doesn't exist anymore due to his disease.

My dad's CAG is 38 so he's in the grey area and is mostly coping with the mental part. (sadness, trouble sleeping, loss of energy etc). I'm not sure what i'm looking for in this subreddit but I just wanted to share what I currently feel like. I feel like I'm mourning someone who is still physically there and will very likely still be there for some time.

The thought of me possibly having it too goes around in my head quite often aswell but I don't feel ready at all to know if i'm positive or negative. I just wish there was some cure :(

Has anyone here tested negative after being at risk for a long time? I was at risk for 10 years and tested negative this spring. I know this is an extraordinarily privileged position to be in and I deserve any negative comments that come my way asking this, but I sometimes judge myself for not get tested earlier. I lost so much time to thinking I had HD and planning accordingly. Whether you tested positive or negative, how did you come to accept your timeline?

Hi, I've already thought about getting tested and I've read pretty much every blog, reddit post, and website about the pros and cons of knowing my gene status. I'm 19 years old and my mom, 47, is getting her genetic results in 5 days. She's been open to me about her testing process, her thoughts and anxieties about it. If she's positive, I think I'll want to get tested, but I'm scared that I might get seriously depressed or anxious no matter the results (if its positive, duh, if it's negative, survivors guilt). I'm going into my second year of university studying chemistry, and I've been heavily debating continuing down the HD research path. My family is very open about HD, my aunt is a pretty established researcher within the field, so I've been thinking about it for a while.

Anyways, knowing if I have HD will definitely influence my career and life choices, and would affect the way I form relationships and keep the ones I already have. The entire testing process for my mom has been super anxiety-inducing for me, since it took multiple months of waiting and uncertainty. I think personally, I'd rather know while I'm young so I can enjoy life while I can still live it.

If anyone's in the same boat, what did you do? Do you think it's better to wait until I'm a bit older? Or just get it done and over with?

One of my parents is beginning to show symptoms of HD. Both are in their early 60s and fully own their house.

I proposed an irrevocable trust to them (with my sibling and I as beneficiary) to ensure that if my HD parent ever has to enter a facility, the home can never be in jeopardy and other parent can continue to live there until they pass.

Does anybody have experience with this? Is this better than just putting the home into my name? Any tips are appreciated.

I (30f) recently received my test results and I have a 45 CAG. I'm full of anxiety and scared for the future. Are there any treatments in my lifetime that could help with HD? Also where do ya'll get your HD news from? ​

New to all of this, no grandparents had symptoms and lived to old age along with their own parents and siblings. My mum (63) has several brothers and sisters all older who are fine, cousins all fine. It’s a compete shock!!
I’m so upset and scared for the future, not only for my mum but also for me and my children and my brother and his children. I’ve already had panic attacks at my body twitching, worrying my score will be higher and I’ll start showing symptoms younger, I’m 39.
I’m devastated and can’t stop crying!! How do we even deal with this??

I have HD and mild to moderate symptoms. I'm looking for an online support group that understands this phase. I'm not "symptom hunting". I absolutely have a positive attitude, and I don't catastrophize or guess about the future. I'm generally pretty happy.

I have memory issues, chorea, proprioception and balance issues, and I have a lot of great workarounds that continually need adjusting. I'm still living my life. I made a lot of diet and lifestyle changes that have worked for me and my mother, who outlived her younger sister (who didn't make diet and exercise changes) by 20 years. All 3 of us had the same CAG.

I'm not looking for a place to compare myself to others, whether later-stage HD folks or those who aren't HD positive. I'm not up for gaslighting me out of legitimate symptoms or hearing "you're doing fine" just because I'm not in a later stage. I'm also not up for "that sounds like normal aging". I've read a lot of the comments here and feel like I should go ahead and say that my neuro says otherwise about both, just to clear up any potential misunderstanding ;-) I've been in HD support groups IRL and have had both positive and negative experiences.

So that's my story. Anyone know of an appropriate group? Anyone else in my situation?

I married into a family that has HD. Currently my brother in law is in the thick of it and the family is struggling.

I want to learn more outside of asking the family members themselves. Does anyone have any book recommendations?

Hey all,

I’m currently looking to get my genetic test next year (around April) I’ve switched my meds a lot recently due to my depression (I know that’s a symptom, but I’ve had it since I was 16 and I’m 28 now)

My anxiety is on quite high. And I appear to be having some twitches and shakiness recently, so I thought it be best to have my test done.

I just occurred to me how fucking damaging this disease - not only has it been taking my father over the last 11 years. Even if he is in a good place, but I can still see it’s not really the man I knew growing up.

And now I’ve been symptom hunting, and it’s absolutely terrifying me. I wake up every morning with dread in my stomach thinking I’ll spot something new.

And I know already the build up to getting this test done is going to destroy me. Because let’s be honest, no amount of counselling can prepare you for that.

Being 28, it feels weird staring down the end of my life.

My only saving grace is looking at things like Votoplam, Falcon HD and Precise HD. Amt 130 looks great, but I don’t imagining many people are keen on a 12 hour brain surgery.

Thanks for reading my rant. I’ve been holding it in for a few days.

Has anyone in the group been in or currently in the Votoplam trial?

Hello all, my partner of 6 years (24F) recently found out she has a 25% chance of getting HD.

She recently decided to get tested and we’re waiting for her first appointment. I know nothing is confirmed yet, but some things are really eating at my soul and I’m seeing mixed information so I would really appreciate some thoughts.

Whats the test process like in Canada? Will she have to go through therapy to get her results? Any estimates of how much longer before we know the result?

Is treatment genuinely looking promising for the future when she would begin getting symptoms (maybe 1-2 decades from now)? I’ve picture and planned my life with this woman as we’ve been together for many years and we’d probably be getting engaged soon if not for this news. But I’m really scared. I want to always be there for her and to be strong, but watching her deteriorate young until she’s ultimately no longer by my side sounds like hell on earth. I don’t know if I have it in me to sign up for that…

Thank you for your time and I’m so so sorry to anyone else who is going through similar or more bleak situations. I will keep you all in my prayers.

Does anyone work for a healthcare system and get IVF-PGD (pre-implantation genetic testing) covered by their health insurance? I'd like to advocate for my employer to cover it and it will give me more of a leg to stand on if I can find peer institutions that are already doing this

hello,

I (27F) am currently going through ivf with my husband (33M). We are optimistic and hopeful about achieving a successful healthy pregnancy. I am at risk, as my mother has HD. I am considering getting tested.

I know that no one can say for sure bc HD varies so much for person to person. However, I am wondering if I do have the HD gene, when i will develop symptoms. my grandfather had HD, he never got tested, but its clear he had it bc my mom does. My grandfather lived to 79 and honestly didn’t even actually start to get sick until his early 70s. We just thought he was getting old with dementia, until my mom started getting sick in her 40s. My mom started falling and forgetting things and moving a lot. She was diagnosed at 48 with a CAG of 44. My mom is now 59 and in a full time care facility , in the later stages. It jumped so much farther ahead for my mom, I’m scared the same will happen to me. Does anyone have information on the CAG inheritance or what that could look like for someone in my situation?

Thank you!!

Good afternoon!

My mother has HD, she's 60 years old.

We live in Belarus, a very rare disease in our country. There are no doctors who fully specialize in this disease. There are no HD societies. So it's very difficult.

My mother is currently taking medications that should alleviate her condition. She doesn't have chorea, but she's mentally unstable. She's in a psychotic state all day long, sleeping only at night... I don't know what to do. Is there any help for this? Or do all HD patients behave like this? I can't take it anymore; it's like living in hell... and not wanting the morning to come.

Put it nicely.

Hello, I’m 21 years old and recently lost my father to Huntington’s on May 17th. He hadn’t been very present in my life the past couple of years, but that is more my fault than his. We were no stranger to knowing that he had it, him and my aunt both got tested and tested positive years back. This loss has been nothing but hard and scary on me.

I know I’m at a 50% risk of having it, but I’m having a really hard time finding the courage to go and get tested, so I’d love to hear your stories on how to go about it? I know we are progressing in finding treatments to at least slow the progress of huntingtons but it still doesn’t make this process any easier.

And if you are positive, how do you cope with having the disorder? Thank you in advance

Hello all,

My partner (24F) of 6 years recently found out Huntingtons is in her estranged father’s bloodline and decided not to get the test.

I’m really struggling with not knowing. It keeps me up at night and is really affecting me at work and at home.

Can I please get some input on what the odds might realistically be that she has the gene?

What I know:
- Her grandma (on her dads side) started showing symptoms at 42 and was in a home before 50
- Her aunt (on her dads side) started showing symptoms at 43 and I was unable to find anything else about her
- both died from the disease in their 50’s
- her father is 55 and has never been tested. But he swore he has no symptoms and he works in the oil fields in a physically and mentally demanding job.

I believe this is quite promising and that it’s perhaps lower than a 5% chance. But I’m unsure if I’m being optimistic and this risk significantly impacts my life and well being. Any estimates for her realistic risk and any prayers are greatly appreciated. Thabk you.

Hi all! Extremely wild and multifaceted situation here and I am in shock. I am in my late 20s, and I recently reconnected with my biological father, just before his death from Huntington’s disease. Having never met him or known his identity prior to this, I had no idea that he had Huntington’s.

Children of a parent with Huntington’s have a 50% chance of having the gene, and having the full gene means you have an 100% chance of getting Huntington’s. After getting tested, I found out I do have the gene. With a typical onset in the 30s or 40s, Huntington’s first severely disables you for 10-30 years before ultimately killing you. Needless to say, it is an indescribably awful feeling to go from presumably healthy to knowing how I will die and that it will likely be relatively early and painful.

Not knowing exactly how many years I have left, I want to make sure that I make myself as comfortable as possible for the years when I have this disease and am disabled by it. Once the disease sets in and it’s progressed, I will not be able to work.

I have family and friends who love me, but none are rich enough to completely fund my life and quit their jobs to care for me 24/7. So I will need money. Here’s where the twist comes in. I do have savings and an emergency fund, but I don’t have enough, already in my late 20s and having no idea til now that I am going to get Huntington’s, to sustain me for potentially 30 years of being fully unable to work.

I worked for 6 years after college and so I think I have SSDI credits from that, but I am now in a funded PhD program and while I earn a stipend and also work as a TA, I just read that earnings as a PhD student don’t count toward SSDI for some legal reason, and I am panicking. I don’t want to drop out of my program that I love, especially when I might have limited time to live. But is there any way to earn credits? Taking on a second job? Is there anything I can do? This situation sucks and is pretty unique and I’d love to hear from anyone who relates to any aspect of it even if not all.

#huntingtonsdisease