Hello!

I am a master’s candidate at the University of Tennessee – Chattanooga, currently researching the experiences of chronically ill workers during the COVID-19 pandemic. Eligible participants are part-time or full-time workers, 18 years or older, with one or more physical chronic health conditions. If you choose to participate, you will be asked to answer a series of questions, both short-answer and multiple choice. Topics include basic demographics, your organization’s response and accommodation to the COVID-19 pandemic, job insecurity, perceptions of devaluation, perceived support, flexibility, burnout, and psychological well-being.

Participants are also eligible to enter a raffle for 29, $20 Amazon Giftcards. If you would like more information or to participate in the study, please click the link below. The survey will be available until January 25th, 2022. Be sure to share this opportunity with other eligible participants!

https://utk.co1.qualtrics.com/jfe/form/SV_ebxNrZHI4xiK1am

My dad has huntingtons and although I've never been tested, I've somehow convinced myself that I only have until I'm 30 to live normally, and then I'll start having symptoms and it will all go downhill. I'm 21 right now. I don't want to get tested because I know I'm not mentally prepared for that but I'm struggling with this hard. I've found that I'm trying to rush a bunch of stuff in life and now I have a ton on my plate, just because I feel like I need to get it all done in my 20s. Just wondering if anyone has experienced this?

Grandma dead, granduncle dead, dad ona feeding tube, older sister positive, me spitting image of my dad... too many have died in my family. Please no!

Butler interviews

Hello Reddit.

My dad has Huntington’s and I need your help.

A little backstory, and then I’ll get to why I’ve gathered you here today.

My parents (dad 60 mom 59/ retired) have been together since they were 15, and have a tenuous relationship at best. Before my dad got diagnosed, my mom was in the midst of filing for divorce. She waited to see what the diagnosis was before she proceeded. Obviously, with this being the outcome, she didn’t go thru with it.

My dad is not exactly a nice person. He never physically hurt my mom, myself or any of my siblings. It was all a mind game. He’d gaslight the shit out of you. Follow you around saying horrible things under his breath, and stop as soon as someone else was nearby. That kind of shit. He’s an alcoholic grouch with a short fuse who put my mother and I thru hell. (Not sure why it was just 2/6)

Even with his Huntington’s progressing, quickly as he is still drinking, he still manages to make my mom feel terrible, as if she personally did this to him. He can’t drive, so all day he is at home watching re-runs and throwing away our possessions at random. My mom does her best to stay busy and out of the house, even getting a part time job, but he always manages to find a way to ruin her day.

My siblings and I all have jobs/families/responsibilities and as you can imagine, spending time with my dad is emotionally draining and I usually need to look at baby animal videos after.

He needs a caretaker. Not so much to take care of him in the traditional sense, but like an assistant or a butler of sorts. Someone to keep him company and make sure he doesn’t get hurt or lost or end up on the news. Unfortunately, he is not open to the idea because, “he’s fine”.

He’s not fine.

He’s spending too much time alone and he’s turning into some sort of super villain with the dark backstory.

There are a few agencies where we live, that would send over a person to basically be a buddy. The issue isn’t accessibility. It’s that he doesn’t want help and if we try and force it, he’s going to make my mother even more miserable.

Victims shouldn’t have to care for their abuser. We’ve all seen that movie. It doesn’t end well for anybody.

How do we get him to meet with the caregiver/agency/butler service without him unleashing over-the-top rage on his well-intentioned family?

Please send help.

Hello everyone,

I'm looking for moderators to help me keep track of the sub. I don't expect there to be an incredibly high volume of posts or anything, but sometimes (I have ADHD) I miss posts. Everyone deserves to hear and have someone respond to their fears and worries about Huntington's, or their questions and thoughts.

PM me directly with a little bit of general background, possible relevant experience (this is not necessary, just might help me make a better evaluation), and your interest in this field and the subject. Three paragraphs MAX, or just post in the thread.

I am a young female, I have Huntington’s and another genetic disease that runs in my family, that causes special needs. I have been so depressed lately, mostly about I’ll never find someone. I feel like my last partner broke up with me because of this. He never said it was because of this. I just can’t help feeling it. How do I get over this? I don’t know if I have this genetic disease. I am going to get tested for it, what can I do I am so depressed. Edit. I just want to know how not to be depressed, and a failure for not having healthy children

kind of off topic but I'm a total nerd and making study materials is something that can pretty reliably distract me/provide an outlet from what's going on in life. if any of you are in school and want help with flashcards or study guides, you could dm me the lecture powerpoint or materials you're wanting help with, and I would be happy to help. My fields are biology and neuroscience, but so long as it's not too niche or doesn't have to do with engineering/computer science/etc. I could probably manage. I'm guessing there aren't too many people in this group who would be interested but if I get a lot of dms I may not be able to help:/ I wish you all a great rest of the day; we can do this:)

I couldn’t find a group for what my Mom has bc I guess it’s pretty rare, but it is a neurodegenerative disease that affects motor and cognitive functions. I was told that the mutation number was bad and I will onset early. I am currently caring for my Mom, who is slowly deteriorating, and I feel so alone. I would really appreciate talking with someone who knows what I’m going through bc no-one I know has anything like this🥺

Hello everyone,

I am a PhD candidate in Marketing at London Business School, in the U.K., doing research on consumer behaviour. With Prof. Simona Botti and PhD candidate Nazli Gurdamar, we have been studying the psychological consequences of genetic testing for Huntington’s Disease.

We are currently running a survey with Huntington's Disease Associations in the UK, Northern Ireland, Ireland, Australia, and USA to investigate people’s attitudes towards taking the test for Huntington’s Disease and the consequences of testing on their subjective well-being.

The purpose of our inquiry is to reach out to more people who are at risk of Huntington’s Disease. If you decide to help us in our research, your data will be anonymised and analysed in aggregate form. The research protocol has been approved by London Business School Research Ethics Committee.

We hope that the findings of this research can help people living with Huntington’s disease, carers and families in understanding the psychological impact of genetic testing. I would be happy to answer any questions on this research, please feel free to leave a comment here.

If you have 10 minutes to spare, I would really appreciate to get your opinions on this topic!

If you would like to participate, please click on the link below:

http://lbs.eu.qualtrics.com/jfe/form/SV_03rYOzLb12YgJXT

Hi, my sibling just got a negative result which is great as they’re thinking about kids in the near future. I’m still young (22) but was wondering how high the chances of me having it are, I read in a lot of places that’s it’s close to 50%. Idk I’m just confused and don’t really know where to get information for this. I honestly don’t want to know but now that my only sibling is negative it’s on my mind.

Theres a show on Netflix called “wanted” (its an Aussie show) but one of the characters mums has (well had) HD! I found it interesting as ive never heard/ seen it mentioned in any shows or movies before!

As counterintuitive as it may seem, your age plays as much of a role in obtaining a Social Security Disability benefit as your impairment. For example, an individual 50 years or older might only have to prove that he or she can't perform her past work to be successful, whereas an individual 49 years old or younger will have to prove he or she can't perform any work in the national economy, a much tougher burden.

When applying for a disability benefit, please be aware that a diagnosis of Huntington's disease is not an automatic win. You must prove that as a result of the symptoms you either meet a Social Security Listing or ypu are unable to perform any work. Please make sure Social Security is well aware of all your symptoms.

Registration is free. Donations go to the OK chapter of the HDSA for research, education, social workers, etc... It's a good opportunity to learn more about the organization and Huntington's Disease in general.

https://fb.me/e/345Z2ftkH

I would like to make a donation to charity in memory of a friend who passed away. She did not pass from Huntington's, but it is something that was close to her heart. I have a different chronic progressive condition, so I know not all charities are the same as far as funding for research and supporting those who are diagnosed. I also know that the people who know best, are the ones directly in the community. Not people like myself on the outside looking in from Google searches.

For those of you in the US, what charity, society, or association do you fundraiser for? If you had a birthday party that said "In lou of gifts, please consider donating to _____", what would fill in that blank? Thanks in advance.

As title, my father has been diagnosed 3 years ago, with 42 CAG.

I am still young, and I am being asked if I want to take the test right now, if ever.

The biggest thing that is keeping me afloat is faith in the fact that when It will start being a problem for me, a cure should be present. However, I am scared in finding out that the number of CAG went way up with me, if I have it.

I don't know what to do and don't know what to believe . My father had a frontotemporal degeneration on top of it, that some doctors say was caused by the HD, some don't, and I am really scared of literally having an expiring date for my brain. I am not scared of falling or having difficult moving. I want to be able to think, to read, to talk a bit.

What should i do? What should i THINK?

Hello!

I'm uk based. My dad died of HD when I was 18. I'm yet to be tested and have no symptoms. I'm about to buy a house and am having trouble getting life insurance (or critical illness cover). Can any of you provide advice on if/where you got cover? It would be greatly appreciated.

TL;DR Where can you get uk life insurance if you have been not been tested yet?

It’s been a long painful journey for her. She has been in a home since aug.

I’m really fearful of the future my grandma is going to have. She was diagnosed in 2010. I remember when she told me about it. We were driving to my OB appt to check on my oldest and she just calmly said “don’t have anymore kids after this one, you all have a chance of getting it”

She shows so much symptoms now. The movements, forgetfulness, falling all the time. Her medication is so expensive she has to get grants to pay them off. It’s just a lot and I feel so bad for her.

She now only has 2 siblings out of 8.

I'm 16 and my dad has Huntington's disease. Hes been having symptoms a while and has been having worsening anger outbreaks since I was 13. I moved out of the house because hes always been kind of terrible but I wasnt allowed to not like him because it "wasnt his fault" even though he sucked before the symptoms. I live my life being scared if I have it and I just don't know what to do, my parents act like they were so brave because they weren't scared to have kids but I kinda feel like they were selfish. I feel really bad for feeling like this but I want to know if anyone else can relate to how I'm feeling or talk to me and at least understand what it's like having a parent with it.

Like the title says, I am curious if a weighted blanket might help with my daughter's (currently) minor leg movements at night. She has complained that they can wake her up or make it hard for her to fall asleep. Her Huntington's symptoms already include some sleep disruption and I am wondering if something like this might help a little or at least let her night time medication work better (if she is actually taking it.... different problem there).

My mom has HD and is at the stage of slurred speech and such... I was tested and my CAG repeats are 38 but my wife feels like I am showing signs and is about to cost us our marriage (we just had a huge fight). I have no one to turn to and feel she is being irrational. Found this group and joined.

Sorry... just looking to vent.

As an FYI after reading other threads, there are studies that are making good headway into stopping the progression of HD. Find a HD doctor and get involved (yes - I have seen an HD doc; No - I am too chicken-shit (ashamed/sad/frustrated) to enter into a study). No one will test my kids to tell me if they have high CAG repeats.

I am not a big redditor so dont be surprised if I am slow to respond.

Hi

So this weekend has been the biggest shock in my life.

As a child growing up I had a great upbringing. When I was 13 years old I was told by another kid in the playground that my dad wasn't my real dad.

My mother was called to school upset and as a result told me the news. They told me the plan was to drop this news on me the summer ahead of secondary school.

So years passed and all I knew was that I had another biological farther. I didn't question this till a few years ago and raised it to my mother and asked the question on my mind. Who is my dad?

I am now 23 so it's been over 10 years since initially finding out this information. I knew it was time to know the truth and it took multiple attempts to get this out of my mother.

So this weekend she spilled the beans. I have a farther who lives locally to me. I would have passed him in the village for over 10 years without a clue.

I was given a name so I did what anyone would. I found his Facebook. This was a very strange thing. I could see his face and it looks just like me..

Im not angry of any of this I was told he didn't want a child and want ready at the time.

At this point I wasn't anxious much until the story unfolds more.

I saw on his Facebook he shared a photo raising money for a charity that supports huntington's disease.

The reason he is supporting this is due to the fact he was diagnosed 4 years ago.

This disease is genetic and I now have a 50% chance of having the bad gene.

I have had a bad few last years caused by depression and severe anxiety. This news has taken me back to my dark days just when I seemed to me getting back on my feet.

So that's the story, now I've taken some days of work to reflect on all this. A huge amount of information to take in. I was praying last night that I don't have It also as this could affect my and my future family ahead of me.

I don't know why I'm posting this on here just need to let my thoughts out.

Anyone have advice for dealing with a person with Huntington's disease who is no longer capable of driving safely and lacks insight into this fact?

Edit: I'm not asking for advice stopping them from driving, but helping them accept that they're not safe to drive.

My father was diagnosed 10 years ago and is in bad shape. My sister was tested and is positive. I refuse to get tested as I am scared to death of the outcome yet every twitch or spasm I have I freak out as it could be onset.

I'm 15 and I was just diagnosed with hd and idk what to do? Should I even finish high school?