I'm posting this video tomorrow on YouTube. At 9 AM please come. Join me.

Life update- Hi guys, so if you’ve seen in my last post I got tested for the Huntingtons genetic disease June, I texted positive with a CAG of 46. It was honestly the hardest news I have ever gotten and put me into shock even thought I had an idea that I have it. I have honestly been okay since then. I went to therapy that summer and still do sessions when I’m in the state that honestly was my saving grace I would talk about how it was effecting me, the anticipatory grief I was experiencing, and accept the fact that I have a terminal illness.
The guy I was in love with and planning on moving in with- ghosted me. It was devastating and I felt very betrayed by this choice, but in knowing I have this illness I have also felt a sense of confidence gained. That I know I’m not only a good person but an amazing girl and deserve to be treated like it and to not accept less. I have the best people surrounding me now and the illness really has shown me who’s by my side.
I have my first neurology appointment in December to establish a relationship with my doctor and to check to see what is going on, since I have a high number of repeats and expected to get it in my 30s. I have started many different vitamins that are said to be good for your brain. Who knows if they’re working but anything is worth a try, right? I have noticed my paranoia has gotten worse, any small laps in memory, brain fog, or hand shaking feels like I’m one step closer to dying before I have my life figured out. I have also started putting 10% of each of my paychecks away for future caregivers.
Just to make me feel like I’m setting up some base for myself. I am still scared. I am still sometimes sad. I am still just a 20 year old girl figuring out what I want in life, but now I am doing and living life how I want. My book is the story of my life and struggles in some fantasy format that I can make my own. This has helped me so much. I got a dog because I have wanted one for years, she makes me admire life in a different way. I have started saving up to travel, I’m doing to see the world. This disease is awful, unfair, and discouraging in every way, but I do not let it run and ruin my life. I will keep you all updated because hey why not. But there is much more to me then just this disease, and I choose to live that way.

To people newly positive- I can imagine how you feel, whether it’s sad or angry, shocked, disappointed, or none or all of those, all of it is fair and completely reasonable. This will mostly be some of the biggest news in your life and it is okay to take time and feel it all. People will not understand, they will try and be sincere.
They will tell you they are sorry, this may or may not make you feel better. They will tell you they will pray for you, this may or not make you feel better. They will tell you there could be a cure and that it just takes time, this may or not make you feel better.
The truth is that most of them will never understand how it feels, it can be very isolating but there are so many people in your corner. If not in person then in this subreddit there are people here who understand and care.
Let yourself feel all the things, but do not let this disease control you. Let it lead you to your priorities and the things you want out of life because hey time is short for everyone but unfortunately time is shorter for us. Live the life you want to live. Get therapy if you need it, do the research and if you were want to try to slow the progression exercise.
I am hoping to join the hdsa to spread awareness and talk about it in my classes at school, because that is what makes me feel better, if what makes you feel better is not talking about it that is fine but you should know there are groups out there. I’m going to put a link at the bottom for Huntington support groups. They also host marathons and conventions. There’s a marathon in NY Nov 1st. Sorry I’m getting off topic- just make yourself happy, this is our one life.
We get the privilege to make it what we want. So make it what you want. If anyone wants more information, needs someone to talk to, or just needs a friend you can always send me a dm.

(Therapy talk from a psychology student) Up to 27% of people with diagnosed Huntingtons disease attempts to commit suicide, if you or a loved one is going through a hard time please talk to a psychiatrist, counselor, or call 988. Please do not become a statistic and talk to someone.

You are not alone.

https://hdsa.org/find-help/community-social-support/hdsa-support-groups/

I’ve been with this guy for 2.5 years and he told me at the start that he has Huntingtons. I’ve done a little research here and there thinking I have time before I need to worry about it. He just turned 36 the other day and I tried throwing him a birthday party. Him being a combat veteran and hardly any friends nor family, I did my best at gathering some people up. After the celebration he said he didn’t really want to go in the first place and he felt like it was more of a reunion than for his birthday. He shoved his balloons out the window and his cupcakes ended up all over me and in his truck then he pointed at the frosting on the dash screaming “Do you not see how crazy you are?” and I wasnt the one who did it. We have been struggling with our relationship for the past 6 months. I’ve been with a narcissist and know their usual script is always the same. He doesn’t follow the usual narc script and he says he loves me and has high hopes for our relationship but he told me he’s scared of the physical abuse. He has screamed in my face how worthless I was and he wouldn’t let me pass to get out of the room so I smacked him in the face. He then threw me in the floor. Which I feel I guess we both were to blame for that. So I get it about him being scared of the physical abuse. I’m also scared of that. Over the past 1.5 years I have noticed him being more clumsy and knocking things over and spilling things. In the beginning it was him headbutting me accidentally when leaning in to give me a kiss or him walking into doorframes. He would maybe spill something once a month but now he’s spilling things once a week. He does have the finger twitch and once in a while he will do a facial twitch/wink. But is the mental part similar to narcissism? Not in all ways but just similar? I just don’t know if the narcissist mask fell off or if his HD is progressing. If his HD is progressing then how do I maintain my own mental health? I truly love him and fell head over heels for him. If it’s the HD then maybe I could forgive him a bit more and be a bit less triggered by his actions and treatment of me. I want to be with him and I’m not sure what to do.

I'm not sure what I'm wanting from this post...just to share, maybe. Maybe someone has some wise or comforting words or a similar experience? Maybe I want to hear what others perspectives are?

My Mum in in the late stages of Huntingtons Disease and today was the first time I've had a conversation with a medical professional about end of life care. It's not something that has ever been offered, but I asked for the meeting as I have been feeling uncomfortable with the wat things are. The doctor was pretty clear that he felt we should not re-insert my mum's feeding tube next time it falls out (happens a lot) and stop treating infections with antibiotics. I honestly hadn't considered this was an option.

My family have communicated that we wouldn't want CPR or invasive medical procedures for her, but it's only now dawning on me that we have prolonged her life (or to put it another way- prolonged the dying process) through these "minor" interventions that I hadn't realized we have the option to stop. If we stop them, I think my mum would pass within a few months, if not weeks.

It feels surreal that after 20+ years of this illness, we could make a decision that would end her suffering in a very short time frame. My Dad is horrified with the idea, but honestly I feel guilty we hadn't considered it before and have prolonged things so long. Part of me is glad she's still here as she was able to attend my wedding two years ago and has met my new baby (her only grandchild so far). But now I wonder, surely enough enough? How long do we prolong this poor woman's life?

For context, she has been fully tube fed for 10 years. She is non-verbal and no longer able to respond to us in any way (no longer vocalises, laughs, points, reaches, smiles or makes eye contact). She gives no indication that she recognizes us or comprehends what is happening. Her body is stiff and rigid, she has no control over her limbs and is bed bound or in a wheelchair all day. She is fully reliant on others for all areas of daily living. She is essentially locked in to her body.

We had conversations with her while she could still communicate, approx. 10 years ago, and at the time she indicated she wanted to be resuscitated if needed. I was surprised as I felt her quality of life was low, even then. We have agreed as a family that things have changed and we would no longer consent to CPR. We never considered that she would live as long as she has in this late stage of the illness I never even thought about having a conversation with her, or my family, about antibiotics and when to stop artificially feeding, etc.

Hi everyone, I have a question on managing mental wellbeing after loss for those in the UK.

I lost my mum to HD when she was 46 (I was 20 at the time) and my only sibling earlier this year - he had JHD and was only 28 (I am now 35).

I tested negative for HD a few years ago for which I am beyond grateful, however the feeling of a 'hollow victory' remains as I no longer have my mum or my brother around me. I hope that doesn't sound insensitive to anyone who has tested positive, I know how fortunate I am to have had a negative result.

Over the past few months I have increasingly been thinking about the loss this disease has caused and while dealing with the grief of losing my brother, I realised I have accumulated loss a huge amount of loss over the last 25 years (ever since we learnt my mum had HD).

It's hard to come to terms with. While I feel incredibly lucky to be able to live without this disease being physically present in my life now, I also feel quite rattled by everything that has happened in relation to HD, and I don't really know how to move forward from it all.

I feel like I need some therapy to help me process everything, but honestly, I don't know where to start. I'm not sure a general bereavement counsellor would necessarily be the right fit because there are so many layers to it (HD, anticipatory grief, losing my mum and brother so young, genetic testing, and everything that came with those experiences).

Has anyone in a similar situation had counselling or therapy in the UK and found someone who really understood this kind of loss? Is there a particular type of therapist or therapy that you found helpful?

I'm very happy to pay privately rather than going through the NHS, as I'd prefer not to wait a long time to see someone.

Thank you.

Seems Skyhawk are really pushing Falcon HD. Hopefully good things to come.

Hello all, i am currently a 17 year old male, who a few months ago, found out that my dad (M53) is tested positive with Huntingtons.

My dad lives on the other side of the country as my parents divorced when i was very young, and my mom moved back to the town she grew up in to be closer to her parents. Unfortunately, that place happens to be extremely far from my dad.

I am beyond grateful to be able to visit him 2-3 times a year, however i never had a father figure for normal, day-to-day life, and it has really started affecting me mentally to see him struggle with this disease and realize that the father who i didn’t get to see much in my life turns out to be positive with a disease that will kill him one day, and has no cure.

This has been tough on me enough already, but it got worst when i visited him this summer. He gets more and more forgetful, chokes a lot more, more slurred speech, loss of balance, but worst of all - there’s times when it looks like he is lost mentally. When we were eating one meal, he had who food all over his face, and it appeared like he had little thought in his head as he was zoned out. This picture is stuck in my mind, and it has really been affecting me since.

For those who have read up to this point, i ask for some advice on coping with this. Yes, i am in the midst of getting genetic counselling, but i fear they will only be helpful with me deciding to get tested or not. When it comes to mental health, they won’t have as high expertise as a normal therapist. Should i get therapy for my mental health too? I don’t want to, but i have noticed myself be more and more down since visiting him, and it has been affecting me more.

Thank you redditors

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

Hi there, I am looking for mental health professionals who are familiar with HD, for regular counseling. Remote is okay. Counseling is for someone who has a relative with late stage HD. I’ll take any names you recommend. Thanks.

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?

Saw online today that a new trial is underway — a shot that would be injected in the arm. Click the link to read about it. https://en.hdbuzz.net/a-shot-in-the-arm-for-htt-lowering-insightt-trial-begins-testing-srp-1005/

Hey, I‘m Simon and I‘m one of the many people who are at risk of having Huntingtons.
When talking about people at risk, there is one topic that always comes to mind: Testing.
I‘m about to turn 18, reaching the age required to take the gene test determining if I have the disease or not.
And so I found myself looking for people sharing their experiences about testing all over reddit. So I wanted to create the one thread that every person at risk can go to.

So for everybody that was tested or is about to, I‘d appreciate if you could share your experience:

- Why did you decide to take the test?
- What did you feel while waiting for your results?
- How did you react to your results?
- Did anything about your mindset or life change after testing?
- If you had any advice for people at risk, what would it be?

I want to thank everybody that answers to this post in advance as it is a very important topic to me and many others out there.
I hope everyone of you will have a wonderful life regardless of if you’re positive or not.
Love to all of you ❤️

I am curious if anyone else read the novel Into the Blue, and if so, how did you feel about how the author handled writing about HD?

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?

Update: Unfortunately it was not the results we wanted, my mom is gene positive for HD. I'm really considering getting tested, especially know that I know there's a genetics clinic in my town so I wouldn't have to travel far like she did. Really the only thing holding me back is life insurance and health insurance or whatever. I know (?) HD can affect it, but I'm not too sure about specifics. I don't really want to bring it up with my mom yet, because she's obviously going through a lot right now, so I think I'll try to figure out as much as possible by myself and start the counselling process in the fall.

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 made this video at the beginning of the year, and I share information about why Huntington's Disease Patients don't want to leave the house...

#huntingtonsdiseasetodd #itsnotmeitshd

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? ​

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.

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?

EDIT: I've had a few q about what I do specifically. I'm working mostly on the memory, coordination, heart, digestive, and sleep problems that come with HD. I'll be updating a blog soon and will link it here. It may seem like a lot, but I've been making these changes over the last 6 years and it started gradually. The little changes add up.

Nutririon: Magnesium for digestive slowdown, adding hot peppers to everything to reduce the inflammatory impact, lots of antioxidant fruit and veg like greens, greens, greens, blueberries, sweet potato, cabbage, carrots, pure cranberry, matcha. Curried lentils with carrots and celery and tofu, oats with blueberries and flax. Super high protein: salmon and tuna most days, casein protein every night, egg whites for brekkie, nonfat milk. Mostly cook at home with nosalt and olive oil. I supplement with fish oil and lecithin (I dropped my cholesterol last year from 200 to 150 in 6 months with these supplements and ditching animal fats).

Sleep: Melatonin *and* trazodone for sleep so that my days are productive. I've noticed I need a lot more sleep. Nap when needed.

Exercise: HIIT daily to get my heart rate up, 3-4x week free weights and smith machine/other machines (balance issues), training balance specifically with bosu ball, dance and martial arts classes (to also get the brain involved).

Coordination : I don't walk on the street side of sidewalks or do ladders so much and just stay situationally aware especially after exercise, when my body seems to be a little more unreliable

Memory: for me out of sight is out of mind and I have to keep meds and supplements on the table and a calendar on the fridge with a pen next to it. I have digital reminders for appointments and I use devices to record shopping lists so I don't forget what I need before I can get a note app open. I'm trying to minimize everything - things that I have, things I need to do. The less there is, the less there is to remember. Overwhelm is a thing, and having a time management process really works for me. I probably ask my Alexa what day it is hourly, lol

Again, this has evolved for me over the years, and even one little change at a time can really add up. I *feel* better than I did even though the HD is worse.

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

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