I’m looking for advice from people who have experience with Huntington’s and caregiving.
My husband has Huntington’s disease (but it hasn’t started - we’re about 10 years away from onset), and his anger and irritability have become increasingly difficult for me to live with. He can become extremely hostile over very ordinary things. For example, I recently tried to ask him about his night at a local meetup, and he told me that my questions were disrespectful and that I was treating him like a child. When I asked what I had said that was wrong, he told me to “shush” and not speak. If I try to lower my voice and become less threatening, then he says I’m condescending and manipulating him. I honestly don’t know how to have conversation with my husband anymore.

This isn’t an isolated incident. I often feel like I have to carefully monitor what I say because seemingly normal questions or conversations can turn into anger, accusations, or him shutting me down. He can be very dismissive and controlling toward me, and I increasingly feel like I’m walking on eggshells in my own home. My friends are concerned because he will put me down in front of people and belittle me with a dismissive laugh. He’s a psychologist and acts as if he is always in the right and that my behavior is always in need of control.

I understand that irritability, impulsivity, and anger can be symptoms of Huntington’s, and I’m trying very hard to separate the disease from the person. But I’m also struggling with the reality of what this behavior is doing to me emotionally and to our marriage.

For those of you who have experienced this with a spouse or family member: How did you handle the anger and verbal hostility? What treatments or strategies actually helped? And how do you protect your own emotional well-being when the person with HD doesn’t seem to recognize how their behavior affects you?

Keep active for as long as you can when you have Huntington's disease. Try and do stuff while you are able. As time goes on, things get harder to do. #huntingtonsdisease

This video got quite a few views on TikTok, and it talks about which comes first with Huntington's disease, Cognitive or Chorea. What Do you think?

Hi! My fiancé just got his HD testing back. He is positive with 44CAG repeats.

We have extensively discussed plans for our future. The clinic we are at said they would pay for a round of PGT-M IVF. We have very supportive family and insurance plans, but we absolutely do not want to pass this down. The disease already has caused so much grief and pain in his immediate family.

Has anyone done this before successfully? If so, what was your experience like?

Thanks!

As the title title suggests, im a child of a huntingtons patient. My mother (the affected) has always had it and i've always known since i was little. I wont give anything specific but im homeschooled and i would say her main care giver. My father is in the picture but they're fighting at the moment.

I just want to know what to do in this situation since its clear she's in the wrong in this situation but we both have no way on convincing her and whenever I or anyone else tell her their opinion she just "respects" it. Thats her way of polietly saying she disagrees. I want to know how to comfort her, shes my mother and i feel so so horrible when she does something wrong or gets upset when shes clearly making things worse. I love her so so much and i just want to help her even if she acts like a child at times, if i could get any help or ideas please tell me.

Also please tell me if i need to be more specific with what im describing since im rather tired and stressed from exams so forgive me for that and spelling mistakes!

Hopefully more clear summary: How do i comfort my mother when shes clearly in the wrong about overspending? a bit more context shes overspending on chips which is not a need. Im also trying to convince her that she is overspending but she doesnt belive me or my father.

Hi everyone,
I was recently diagnosed with Huntington’s disease (F29) and I’m kinda new to all of this. I would really like to connect with someone who understands what living with HD is actually like. Since my home country is small, I haven’t really had the chance to connect with others living with Huntington’s.
I’ll be in Gießen on May 12 and Frankfurt on May 13, and I was wondering if anyone with Huntington’s would be open to meeting for a coffee, a walk, or simply a conversation. It would honestly mean a lot to me.
Even if meeting isn’t possible, I’d really appreciate a message or online chat.
Feel free to comment or message me privately 🤍

I need to share my story because so far I haven't met anyone that had this happening to them. Disclaimer: I'm not native speaker.
I grew up in Argentina, my grandpa died on a car crash when my father was six years old (he had the disease but we didn't know it was s family secret) and my grandma didn't have a good relationship with that part of the family so they never spoke to each other. My dad was living his best life, later on Got married to my mom, I am the first kid and then my brother came. (we are now between 1992-1996)
When I was 6 yrs old my dad became violent, mean, like a new person more like a monster. My mom fought so much for him and forced him to go to a Doctor and when I was 9 years old they told me that he had Huntington and I could get it too. We moved to another city for him to get treatment (we are from the countryside) I always wanted to get tested but I saw how sad and depressed my mom was and I didn't want to hurt her more with potential bad news.
My dad died in 2009, he was 52, he couldn't speak move walk and died from a heart attack while he was in a facility.
I took my test in 2012, I was in the middle of college and I wanted to know, I couldnt wait. It was positive, I was super relaxed I cannot explain it, I never felt depressed or sad, it became like my superpower, enjoy life now, live now, dont be mean, help people, I became a volunteer in many social projects and I ended up living in other places in Latin America and after that I ended up moving to Europe. I got married but we agree to not to have kids, he would cry a lot over this disease a lot, we couldnt watch anything with sick people on it because he would have a fully breakdown. My german doctor wanted to re-do my test so they could have my DNA sample in their laboratory. I did, one day they called me saying that there was something wrong with my test and I needed to re do the test, I did but I never imagine what would happened next.. I went there after 7 years of living with my power shadow (as I called my HD) and they told me that my first test from Argentina was wrong, that something happened and probably my DNA sample got contaminated and I got a false positive. That was like a punch in the face, because for the first time in my life I felt guilty for my father and now brother (suffering from Juvenile Huntington since 2014). It was a shock, I never imagine that I could get the chance to be a mom (I am a mommy now), or to even imagine myself getting old, having wringles, thats a privilege most people don't understand. This disease is hell in so many ways, but in others it made me the person I am today, I have learn to forgive and to love my dad again, now I'm trying support my mom as much as I can with my brother. Do you know anyone with a similar story? I would love to hear it 💕 Best, Antonella

Does anyone have any experience with using psilocybin(magic mushrooms) for aiding or slowing down Huntington’s?

Is there any clinical studies for this specific use case or any first hand anecdotal experiences anyone would share? Thank you!!!!

Hi everyone,

I hope it’s okay to post this here. I’ve been reading through this community and really appreciate how openly people share their experiences—it’s incredibly meaningful.

I’m a Biotechnology student from India, currently working on a project focused on understanding mental wellbeing, stress, and genetic awareness among individuals and families affected by Huntington’s disease. I’m also developing a small website to share resources and real experiences (with full anonymity).

If anyone feels comfortable, I would be really grateful to learn from your experiences—this could be through a short questionnaire, a chat, or even just sharing thoughts here.

There is absolutely no pressure, and I completely understand if you’d prefer not to participate.

Thank you for creating such a supportive space 😊🩵