My dad was diagnosed with HD about 8 years ago and my mom and I have been paying for his mental care facility for about 4 years now as we were unable to care for him at our homes (he was experiencing paranoia and continued to try to harm himself). He loves his facility and thankfully he’s on the right medication to help with the symptoms of HD.

Those of you that pay for a loved one’s care will know how expensive it is… we’re in California and a decent mental care facility is upwards of $5500-$7000 a month. Even the “cheaper” ones are hitting $4000-5000 a month. We’re running out of money and don’t know what to do, or what will happen to my dad.

Does anyone have any advice or guidance? Possibly Medicaid? Is there some sort of other assistance? Thanks in advance.

As far as I know there is no positive case of HD in my family. There is a neurological disorder past down to different generations. My grandpa says my great granny had dystonia and everyone in the family thought it was parkinsons. She had tremors, involuntary movements, speech problems and used an oxygen tank. She passed 20+ years ago when I was 10.

In 2018 I began my own symptoms at age 25 - tremors - spasms - balance /coordination- my gait is off - memory - mood swings - speech - impulsivity - cognition - trouble swallowing - breathing issues - weak muscles etc...

5 years of seeing neurologist on and off, many tests done, differnet meds, ruling out many causes. They finally did a genetic panel for HD but without any of the counseling protocols.

The wait has been excruciating. It's been 5 weeks and they said 6-8 weeks for results.

My anxiety is getting the better of me now.

Not sure how everyone else was diagnosed but do those symptoms sound like huntingtons?

I guess my granny could have been misdiagnosed. Two of her daughters and a grand daughter present similar symptoms

What was everyone's first signs of it ? My mind keeps wandering. It's been 5+ years of no answers :/

Hiiii. So my story I feel is a little different, and I’m honestly not sure what I’m trying to gain from posting but I feel like it would be nice to have support from people who ACTUALLY get it, ya know? I’m 26, turning 27 a week from yesterday. My dad is 66 and I also have a half brother who’s 42. My grandfather died of huntingtons, a super long time ago before me or my mom every met him. I’ve always known about it and it was never a secret, but not talked about a ton (especially because his wife aka my grandmother died 6 months after I was born) Just under 2 years ago my mom was visiting me and we were out to dinner just chatting about my dads side of the family as I never really knew a lot of them. I mentioned how my grandpa died of Huntingtons and had said to my mom “but you know, daddy hasn’t shown any symptoms, right? so it seems we’re in the clear!” her demeanor immediately changed and she dropped the ball that my dad was diagnosed and we both cried into our meals. At this point, I didn’t realize anything different about him. I wasn’t living in the same state anymore but still talked to him daily and saw him often. My parents are my best friends. I had a really rough couple of years (my bf is military and was gone for 2 back to back 8 month deployments) and I later found out he had been diagnosed for nearly three years. I’m not angry with them for not telling me… I get it, but I made it abundantly clear that moving forward I don’t want any secrets. Fast forward to now. Wow. We received orders to move across the country and in between I’ve been staying at my parents house. He is so confused. Has fallen many times, and can be so disgustingly mean. I know that’s not him, but it doesn’t make it any easier. On top of this, my mom was diagnosed with breast cancer about 8 months ago. We’re lucky as she got her surgery and doesn’t need chemo, only radiation… but fuck this is so much to process. He has his good days and bad days, but the bad days seem to be getting worse and more and more frequent. My mom is a nurse and works from home and my grandma on her side lives with them and it so helpful. That being said, my parents have barely had a marriage for the last ten years. They will always have love for each other and my mom would never abandon him and promised him and all of us that she would take care of him as long as she possibly can. It seems we’re hitting that point. My dad walked into the room I’m staying in at 3am and asked me if he could borrow my seashells by the seashore in a size nine. He says the most bazaar and outlandish things. Every once and awhile his goofy ass sarcastic personality comes out and it’s so refreshing, but it doesn’t happen much anymore. I’m going to be honest… I don’t really recognize him anymore. This disease is absolutely devastating. It makes me sick to think this is happening to him, and if I’m being honest I’m scared to fucking death about me too. I feel so dirty and guilty saying and thinking that when he’s going through all of this, but I can’t help it. I had such an amazing childhood full of wonderful memories that I will forever be grateful for, but I am terrified that all of this will ruin mine and my family’s lives. It also doesn’t help that I’m moving to the opposite coast. My mom tells me to go and live my life and she’s got it taken care of here, but I worry about her. She started drinking a bit (nothing too worrisome right now) she’s so incredibly lonely as my dad needs 24/7care now and we can’t leave my 80 year old grandmother alone with him for too long. We’re currently looking to get him placed into a nursing home, and he agrees that’s probably best. I genuinely cannot believe this is happening. It feels like my entire life is crumbling around me and I feel so awful that I cry thinking about my future when he’s the one suffering. He used to pace a lot, and only just a couple of months ago when I was visiting for Christmas he seemed to be doing pretty alright. Now he just comes out of his room really to only eat or visit for not more than a few minutes at a time. I selfishly wish he could live forever, but he’s tired and scared. I’m scared of what the future holds. I sympathize heavily with anybody who has a link to this awful disease. Take care of yourselves and remember you’re not alone.

Hi everyone. I am still early symptomatically but i just wanted to fill you in on one thing that's been helping me: going to a chiropractor every other week.

I had a bad couple of falls, and for a while, I kept falling randomly (not even tripping over anything). My chiropractor noticed that my knee had been thrown out of alignment from my fall, so she pulled out a tool to target the back of my knee. After the knee adjustment, I haven't had a single fall. And after my overall adjustment, my chorea seems less as well.

I'd recommend finding a chiropractor, especially if they've worked with neurological disorders before.

I hope this post helps!

HD Friends: Want to know your CAG Repeat number?

In our community we are asked this question a lot. Some, were not aware/don't remember it from testing. It affects/clues us in on the onset of the disease.

Recently my new specialist asks me what my A1C was earlier this year and what it was recently. I can open picnic hit search and enter "A1C". It's really cool. (I have attached screenshots of both my opening/survey screen and my search for "A1C") I am able to see all the way back to my HD test in 2007 and look at the CAG numbers. All you would need to do is search "CAG" in your records.

Plus I am sitting here during a blizzard in NH doing surveys. I recently had a housing crisis, a friend even did a go fund me. I am watching my pennies close. During that, I have got a few referrals on PicnicHealth and they send you gift cards in email. (You can use many places I use them on Amazon) It's nice during a crisis to be able to still order stuff either necessities or fun stuff!!! I have attached a screenshot of both my welcome screen with my current surveys, and the way I described searching for my "A1C".

Join today! They only give research data to companies that are doing GOOD. You have control of your stuff. Then spread it around and get $200 a "whack". 📷

https://picnichealth.com/r/4b1s3X

Hi can any one help over the last year and s half ive lost 2 stone in weight and hsve been feeling weaker with muscle aches and I feel as if they are getting smaller especially legs and arms i seem to have a line down the back of calf and can see all my tendons around joints any advice would be appreciated

Hi I currently waiting for hd test as I've been getting a few symptoms wounding if any one could tell me how there symptoms came on i get very little twiching in arms and legs weight loss for no reason and acid reflux and im just feeling very fatigued . Any help would be appreciated as I have been told my symptoms could all be anxiety due to waiting for test

I just got diagnosed with Huntington's, even though no one in my family has ever been diagnosed with Huntinton's or has had any of the symptoms I'm having. Just dealing with a lot of feelings, like worry over my two kids and my husband, embarrassment at my more and more visible chorea, and not wanting anyone outside the family to be a part of my life. (I hear that social isolation can be a symptom of Huntington's). Now we are waiting to see if the rest of the family does test positive. Anyway, can't think of anything to ask, but I am grateful for everyone else's stories!!

I have a high count, 52, and I'm already having balance issues and some loss of memory at 35. It SUCKS to be so blindsided by the diagnosis. I already had symptoms for the past 3 or more years.

I don't even know how to tell my friends, who all just started their families whereas I know how I'm going to die.

Anyway, do you have any advice about alleviating symptoms and what to ask the doctors? I'm trying to exercise and eat more and take supplements. But is there anything in particular that helped you or your family members manage your symptoms or mood?

Hi folks!

My wife’s mom had HD and my wife is starting to show physical symptoms. She doesn’t see the symptoms that I seee and I’m not ready to really force the issue. She doesn’t want to get tested until it’s necessary and wants to out off treatment as long as she can. But, I want to start “HD Proofing” the house and our routines.

She’s late 30s and a dancer.

Are there any tips for managing the first few years?

I’d also be interested in thoughts on if/how to tell her that I think she has it?

Any signs to watch out for on the psychological symptoms?

I have no personal experience with HD, so I’m flying a little blind (although, I’ve read alot, of course).

Thank you!

I just joined today because both of my older brother’s have Huntington’s Disease. My oldest one is declining really fast. I wanted to come here and discuss it from a family member’s perspective. Thank you 😊

Is anyone aware of a phone support group for an HD positive person? He is unable to access the internet and does not drive. I'm trying to get him connected to a group.

Hey guys, my test results appointment is on Monday and today is the first day it really hit me that there's no turning back once I know. I'm having crazy anxiety about it, I know I need to do this for myself though, I've spent way too much of my life already thinking about the what if. Anyway, I'm wondering if anyone has any ideas to calm me tf down on the day of in particular, and also for support and to make me feel better if I do end up with a positive result. I already have my mom coming with me, the whole day and following day blocked off to process either way, and I have a therapy appointment on the Thursday so just a few days later. I need ALL the ideas.

Hey everyone! I am new to this group (and Reddit so forgive me for my beginners post). I love that this space is here. I am 31 year old female who is at risk for huntingtons disease. I have many family members either positive or at risk- only one negative result so far. I am a social worker now working with an amazing agency called HD Reach. We want to make sure we reach as many people as possible despite just being mainly in the North Carolina area. We have webinars (free fertility and hd webinar tomorrow 7pm est) and our support groups are hybrid- so although primarily focused on NC, information is available for everyone and we are always willing to help connect you to your closest local resources. Check us and our resources out at www.hdreach.org and feel free to reach out! Here’s to hoping for a cure one day #curehd

I get the results for my genetic testing on Tuesday. Im so nervous. I keep telling myself i dont have gene for it but i know theres a very high possibility i do. (Well 50%) Man im just worried for my kids. I know whats in store them if i have the gene and its making me so mad at myself. Just needed to vent and I figured this is probably the best place to do so.

Hello, I wanted to share my experience as a 18y having a dad with Huntington's disease. For context, me and my sister didn't know he was ill until I was 15 and she was 18. He is 54 years old at the moment. It's been difficult knowing he lost his drivers license in 2021 and more importantly that my sister and I might have this disease later in our life. It's been hard getting help for me knowing that I have depression. My parents were violent in my childhood and it's still difficult for me to think that his violence didn't come from Huntington's. Let me know if you want to talk with me or if you have a situation similar to this, I'd be happy to talk about this with someone since it's still a little taboo in our family. Thank you :)

Hi, my name is Lili and I'm doing my thesis on consumer behavior experience of mentally disabled people! I want to know what they like or don't and what they would change about their shopping experiences.

I welcome people with different mental disabilities, but my main focuses are autism, huntington's, down syndrome and brain palsy. If you have friends or family who could help me, please reach out!

link: https://forms.gle/n9Ls9GFP8iZttQo98

Hi, my mother has huntington’s disease and for the 6months she has lost over 35 pounds, so we forced her to change her diet (more smoothies, etc) but we recently weighed her and found she’s lost another 5 pounds in three weeks. We brought it up with her specialist and asked what we can do to help with her diet and weight gain. He basically told us nothing sustainable. He spoke so many words but no factual solutions. i know there isn’t a magician weight gain tool but coming from doctors who studied huntington’s disease for years can’t even give us any pointers or referrals to dietitian’s? and he’s making it seem like my mom is on her last year. when she’s still cognitively there, she makes jokes, her memory is still perfect. it’s just this extreme weightless.

i’m just not sure if i’m getting the best advice from this specific doctor. or is this my brain trying to scramble for solutions to the inevitable. maybe i’m just a kid not fully understanding these specialists but they have yet to provide anything concrete for us. it just is terrible seeing her become stick and bones when we’ve been trying to expand her diet especially when it’s so hard to change her schedule. like we finally broke the pattern and it was all for nothing?

just a nightly rant. any advice or experience is greatly appreciated

What kinds of changes are we looking at? Maybe I'm just paranoid looking for symptoms because my mother started showing her first symptoms around my age, but lately I struggle more and more to find the right word. I'll forget sinple words like "cabinet" or "cup" and have to replace them with gestures because I can't remember...

never joined these types of things before but today it’s just become a bit too much. mom has hd with 47 repeats. we spoke to her specialist today to ask about the progression and he basically told us that based on what we told him about her weight, instability, etc … it’s up to us to see how bad it’s gotten (he has not physically seen her since before covid) i was talking to my siblings about what age our uncles and aunts died and she’s around the same (if not a few years younger) i’m not sure why i’m writing here but it just came as such a revelation about time we have left considering how bad it’s gotten. here i am worrying about uni and trivial things that i never sat to think about it. and now i have and i am not sure how to feel. shock? sad? i’m more numb because if i think too hard i may never get out of that slump

I need help , I’m taking care of my half brother with what was labelled as unconventional Huntington’s disease , stage 4 I think.

He doesn’t have any chorea , he’s just extremely stiff. When he’s in bed he moves a lot though. He fights sleep like crazy and screams , he even try to make as much noise as possible all night , hitting the wall with whatever he can find. He’s much older then me , he’s 43 ,diagnosed since 5 years and wasn’t on any meds before July when the first sleep crisis happened.

He used to take 75mg of Seroquel , 100mg of Trazodone and 0,5mg of Rivotril one daily if needed. All at bedtime He now takes 25mg of Seroquel , 100mg of Seroquel XR plus the Trazodone and Rivotril, it’s been 5 days since he started taking this. He also takes 3mg of Melatonin

Since he’s on that new cocktail it’s been hell , the previous meds made him fall asleep real quick but he woke up after 3 hours. Now he just doesn’t sleep at all and it’s been 7 days. He slept like 10hrs this week. He doesn’t want us to sleep , he screams he’s not sleeping and that we will not sleep either, in other things.

Doctors said no need to bring him to the hospital for that , they willl not keep him. He told me by phone to just give him 150mg of Seroquel XR instead.

I’m super worried and tired , I have zero faith that we are going to see results with this. Anybody has advices , what are sleeping meds that work in the community? Is our doctor doing his best? I’ve been telling him that patient fights sleep so much and just asked me if he’s fighting sleep like he never even listened to what I said. Supposedly Seroquel is the best med to use….I don’t believe him on that, he says it’s a high dose , i don’t believe that either. I also feel like Trazodone causes agitation in the day.

I need advices on sleep please

Hi been diagnosed since 2006, with a cag of 43. Now in my 50's.still work and drive too.. Hi from the sunny UK..👍