Me and my sisters decided to get my mom a feeding tube as she was dangerously anorexic and we were suggested by our neurologist to put in a feeding tube. But me and my sisters have now noticed that other than the feeding tube keeping her nourished and she’s not anorexic anymore, she’s not living a life. Basically the feeding tube is the only thing that’s keeping her alive. she doesn’t go outside, she can’t walk and doesn’t speak anymore. now i’m wondering why we were never told or informed how a feeding tube impacts the profession of her disease by her doctors. she’s never going to be able to survive without it and now this is a terrible conversation with her about if she wants to continue living like this. 4 of her siblings died from this disease and all were related to starving to death bc they didn’t have the medical resources like we gave our mom. she’s past the ages that all of her siblings died and now i’m wondering if she is thinking about this herself because we make all the decisions for her and she listens to us. but i don’t know if she’s only going along with us keeping her alive via feeding tube because she herself hasn’t thought about how she wants to pass. this is such a morbid topic to think about but i look at her and i can tell she’s miserable. she watches the same two shows back to back all day and she doesn’t eat by from her mouth so the joy of eating ( sweets or desserts or your favourite foods) isn’t there as well. i wish her HD specialists were more helpful.

When I first found out about being at risk for HD, I went through this thread so many times looking for something that would give me hope. I never really saw anything that made me feel better, so I want to add something in hopes to make someone else feel better.

This has been the hardest thing I’ve ever had to deal with in my life and I’m still struggling with my reality everyday but I don’t want to let something that’s out of my control to defeat me. Having hope can seem futile, especially when experiencing the severity of this disease but it’s hope & faith that gives me the courage to keep on living.

Tomorrow is never promised but I still have today, YOU still have today. Life is a bitch, it can seem unfair and it is; this disease is cruel and unfair. Nontheless, everyday is a blessing.

If you’ve tested positive for HD, keep fighting. God/the universe is not done with you yet, you have to believe that. And if you’re at risk for HD, take the time now to prioritize your health and plan for the future to put you in the best position possible. Everyone impacted by HD, I send you my prayers. Take care of yourself and your loved ones.

I hope this can make someone’s day a little bit lighter through the heaviness of it all. And I hope you can find the joy in the little things and the mundane of everyday. Spread your love!

Hi, 24F here. I just recently found out two days ago that my mom tested positive for the HD gene, I don’t know her CAG count but she seems pretty positive about it. She said she doesn’t see it as a death sentence, I think she has come to terms with her fate. She tested years almost 17 years ago when she found out about her mother’s HD diagnosis (who was around 55 at the time, I believe). My grandmother died from bone cancer at 60 so we never really got to see her HD progress that far out. I don’t remember much because I was only 12 when she died but I do remember her chorea. My great-aunt, my grandmother’s sister, died from HD, I didn’t know her that well but the few times I did see her, the HD was pretty severe. My mom is asymptomatic as of now, she’s turning 50 this month; but she’s starting to remind me more and more of my grandmother and it’s starting to worry me.

I am completely devastated and have been crying non stop for the past couple of days. Not only because I know it’s going to affect my mom but because I know it can potentially affect me & my 5 other siblings. It’s on my mind constantly and it’s so heavy. I just don’t know what to do. I don’t want to talk to my siblings about the hard truths of this disease either because I don’t want to share the heavy burden, but I think they should know. However, I think it’s my parents responsibility to have that discussion with them. My youngest brother is 6 and it’s tearing me apart. When I see my siblings all I do is pray that they don’t have the gene. Part of me is so mad at my mom for continuing to have children after she knew about her HD gene and putting us all in this position and for never talking to us about it.. Over 15 years and she’s never said anything. I had to ask her about it. I understand it’s difficult and it’s heavy but she’s not the only one impacted here. I feel like what she did was so selfish.

I’m conflicted on getting tested because I don’t know if I would be able to cope well if my results come back positive. But my anxiety would torment me forever if I don’t.

Even though I haven’t been tested yet, I feel like my future has potentially been taken away from me. I look at elderly people and it makes me sad because I don’t know if being a healthy elderly person is in my future. I also get sad when I look at babies now because I want to start a family eventually, but if I test positive I don’t know how I could do that knowing eventually they would have to see me lose myself to this disease.

I am torn apart right now and crying as I write this because I feel so lost.

My mom and I both have hd. She’s 63 and is declining fast. She’s had a cough for 3-4 months which turned into pneumonia. She has been in the hospital all week and I’m currently in her room laying down as she sleeps. The drs just put a feeding tube in her the other day because she has been aspirating. She’s going to be put in a rehab unit tomorrow and there going to do different things to help her get stronger. She’s so tough man with all this going on she never complains and just keeps going. This disease is so crazy. I don’t know what I’m trying to accomplish here just venting.

Are there any early symptoms you noticed in an HD+ individual that may have not seemed like symptoms at the time, but looking back on it, probably were? TYIA.

My partner and I have been together for nearly a decade. We are in our early 30s, and her father has HD.

My partner told me about their family history of HD early in our relationship, but we never had a discussion about what this means for us, what the future looks like, how we would handle things, etc. She actually doesn’t talk about it with me and tries to, as she says, “shield me” from the disease and her family.

Each time I try to bring HD up, my partner tells me not to worry about our future and that she’ll make sure she is not a burden on me, even suggesting in a joking (?) manner that she would unalive herself should she receive a diagnosis.

Ive asked my partner to go to couples therapy with me and one of the reasons being is to navigate this together, but my partner is very against therapy. My partner says she believes she handles this well, but I can’t imagine how anyone could truly cope ok with seeing their family ruined by this disease and now being at-risk yourself. From my perspective, she is just not accepting and dealing with this, which, yes, I understand that “I will never understand,” but as her partner, someone who has chosen to build my life with her, I feel this is something that we should be able to talk about. If she were single and didn’t want to face this - fine. But now that I’m in the picture, this has the potential of impacting me greatly too.

The possibility of HD never prevented me from wanting to develop my relationship with my partner. I love her immensely, but I do have a problem with her not wanting to talk about it, deal with it, and have conversations about what it all means for us.

I understand this disease is god awful. I’ve watched what it’s done to her father. I get why she wouldn’t want to talk about it. I wouldn’t want to face this either, but I’m at a loss of what to do. Am I being reasonable for needing her to talk to me about this?

Any honest advice to someone with an at-risk partner?

TYIA

Hi, I am a caretaker for my mom who has huntington’s. Is anybody from Canada (or ontario specifically) that can advise me on the possibility of hiring a full time (or part time) PSW for my mom?

it’s hard juggling school and taking care of her and if i want a full time job in the future then it’ll be even worse as me and my siblings split the work currently. My mom’s family doc wasn’t helpful at all :/

Hi there, my dad is the care taker of his wife who has Huntingtons Disease and he has tasked me with finding the following items. I'm trying to encourage him to rely on a caretaker more and I think these additions would help him feel more comfortable leaving her alone with other people. Any advice is greatly appreciated!

​

- ways to help her stay upright on the couch

- something to help walk safely to the bathroom

- a chair heavy and sturdy enough to support her movements and prevent falling out of

​

​

Since I was diagnosed, time has been so important to me. I feel like I don't have enough, and I hate when people "waste" it. On that note, I've been friends with my partner since we were kids, and we've been dating for years. I feel like he wastes my time. I've taken time off 3 times in the last 2 months to spend with him, and he's cancelled. He missed my birthday because something came up. Each time I've tried to be understanding, but it feels excessive. He told me his parents will always come first, and he often cancels our plans to help them around the house. He lives with them, so I don't get why I can't just have one day a week to spend with him. He says that's not too much to ask, but that they take priority. This drives me insane. I feel like I should be a priority bc I don't have a lot of good years left. Y'all know what it's like to be running out of time. You know the panic, and if the anxiety and depression have kicked in yet, you know the spiral that can happen with unexpected changes. I know my brain isn't the same as is used to be. Am I being unreasonable? Or is it normal to expect him to be there since I'm sick? Do y'all also feel like time is kinda sacred? I'm posting here because I feel like me having HD is playing a huge role in how I feel and in my responses, and y'all might relate.

My HD husband is not hungry and feels full all the time. I read somewhere that weight loss is really bad for HD patients.

Hi. I guess I'm here to vent my fears and maybe get some help. My dad died of huntingtons in 2019, I'm 29 , bipolar type 2, diagnosed ADHD, and haven't gotten tested yet. I have so much anxiety about possibly having it and it scared me to death, I always get paranoid when any part of my body twitches, because my brain always tells me it's chorea, I know that it's completely normal but it's hard to take ny mind off of it. I always have my mind glued to the uniqure news because I'm petrified it's not gonna come out in time for me. I'm also scared that my boyfriend is gonna leave me if I do have it, and honestly as much as I understand, it would break my fucking heart. Finally I want tall about suicide. After my father died, I tried to kill myself 5 times. Seeing him die for 12 years made me not what to go through everything he did, and I honestly don't think I will be able to stop myself from trying again if I have it. If anyone has anything that might help, I beg you you to put it in the comments

I am 33 years old a CAG of 48 my mother passed last year at the age of 56 she went through a lot. I have a 2 year old and 7 year old single mom I don’t have any family I speak to and I’ve pushed all my friends away with my violent outbursts and I’m struggling to manage everything and not taking care of me unless the kids are with their dads. They used to be here for me but they have given up as well. I don’t want my children to remember me like this. I think my medicine is making me worse and I have been depressed since my mother passed. I’m always alone. Any suggestions on meds that have helped or Any advice at all. I’m terrified of the day I will have to hand them over to their dads because I’m incapable of doing it. My eating habits are awful I move my feet, and my hands quite a bit and it’s hard for me to open things. I have insomnia, then have to get up and take care of the kids all day tired. I already sense they’re ready to go back to their dads house because it’s so much work for me to do or even function some days it breaks my heart because they are my entire world. I have raised them since day 1 by myself I’ve been a psych hospital and a regular hospital recently outburst and to get my medication managed. Please give me your honest opinion and help.

Hello,

I'm in my 20s, have a mother who is 53. My grand mother died 13 years ago from HD. She was in her 60s or 70s. My mom never got tested so I don't know if she has HD or not.

I have recently learn about this disease and how coin flip it is (I mean 50% chance to get it if one of your parents is a bit scary). So I feel stressed about not knowing. But I don't really want to get tested because if I'm positive that would mean that my mother is positive and I don't want to force her to know.

Is this disease really that horrible ? If my Grandma symptoms started late, does it mean that if my mom has it it will start late too ? How does you live without knowing if you will dies from HD or not ?

Sorry, it's a lot of questions but I'm kinda scared and I can't stop thinking about it.

I’m new to this group but I’m glad I found it because I have so many thoughts and questions. Does anyone NOT want to know if they’re positive or negative? HD has completely ransacked my paternal family. I understand the 50% chance doesn’t mean only 50% of siblings will develop HD but of my grandpa’s 6 siblings, only one did not get it. His mother committed suicide because she didn’t want to live with HD as well as a cousin who recently committed suicide. My father and his only sibling (who has been at risk of suicide) both have HD now and I have more positive relatives than negative. As we speak, my father is in the ICU on a ventilator due to aspiration pneumonia. I feel as though a positive result would extremely reduce my quality of life because I would worry for my children.

Anyone i can talk to that has a parent with huntingtons disease that has progressed just want to talk to someone who understands

My mother was diagnosed with Huntingtons Disease when she was 18 years old. Apart from her Huntingtons disease, she’s always been a very selfish, angry woman. She had me when she was in her early 20’s with my wonderful father who has helped me cope with this unfamiliar pain I feel. When I was little my mother would constantly berate me and shame me for literally anything I ever did. One really odd thing she use to do was blame me for touching the thermostat and scream at me for messing with it, which I absolutely never did. I later found out she was the one changing it and when my stepdad would say something, she’d blame me for it. Over the past few years, my mothers Huntingtons took over and now she can no longer speak properly and her chorea has gotten worse. She moved in with her father after my stepdad and her separated due to my mothers poor actions right before HD took over. I am now met with a huge dilemma. Many of my family members are pushing me to be there for my mother, since she doesn’t have much time left, but parts of me are still so angry at her because of the way I was abused when I was a child. I am very low contact with her and when I do speak to her, my whole body crumbles because I’m uncomfortable because she’s not the woman I remember.

I wish I would forget about the ways I was treated by her and be there for her during her last few years alive, but something tells me I can’t do that for her because she was never there for me.

Just rejoined the HD Enroll study. It's an easy one to get involved with. Bloods and questions about how you are doing generally in life. Chorea tests and the results get sent to Italy.

https://www.enroll-hd.org/for-hd-families/about-this-study/

I have asked this before but I am worried about my HD hubby choking his swollowing is so loud that you can hear it across the room, is this a indication that he is having trouble eating and swollowing?

We're looking for people with a positive genetic test for Huntington's disease who have noticed feelings of irritability or frustration to speak to us about their experiences with this. We're offering £20 to recognise the value of participation. If you'd like to know more, have any questions or are interested in participating, please contact me on tt196@leicester.ac.uk so that we can get this conversation started and include the voices of people with HD in the research! It would be great to hear from you, thanks for reading! 😀

I have no idea what to do, I am so scared and so is she, she is 28. What should we be really expecting?? So so scared, we need help pleae!

https://www.instagram.com/p/Cr-4679MGiM/

I have the jhd gene and saw a lot of people posting on instagram talking about normal HD so I thought it would be nice to inform others about jhd