Comments: 1489 • Responses: 67  • Date: 

neurobeans1386 karma

I am a graduate student researching HD. In particular, trying to develop therapies to suppress huntingtin aggregation and stem cell-based therapies. I don't have anything to ask, but my heart goes out to you and your family. I also want to add that there are lot of talented researchers in the HD field. We're doing out best to find something to help you in your lifetime! And, good on you for raising awareness on reddit! I wish you the best!

Edit: Holy Moly! Top comment! Thanks for the kind words everyone, it is nice to know that strangers on the internet appreciate the work we do. If you want to help fund HD research, you can do so through the HDSA website that OP linked.

CURE_HD487 karma

Thank you! Are you involved with UCSD at all? Amazing work coming out of there and wouldn't my luck have it my at risk uncle is from SD. And wouldn't it be my luck that he has been involved with studies there as an at risk patient in the past. And wouldn't it be my luck his wife is an architect or designer(not sure which) for the science labs even! I am really hoping next year to be involved in a study with the new DNA drugs.

neurobeans255 karma

I'm actually not at UCSD, but we have some collaborators there and I do go to San Diego a lot (both for research and non-research purposes). That is quite the coincidence. Good luck with getting involved with clinical trials there!

CURE_HD298 karma

If you have any pull, remember this AMA!

CURE_HD1310 karma

YourPostsAreBad283 karma

test post: just to see if OP will deliver with the upvotes.

CURE_HD159 karma

FInally got around to getting an upvote.

cwoo33627 karma

My heart goes out to you. I have researched HD for many hours and I can't even imagine going through any of it. I was curious about a couple of things, though, and I hope they aren't too blunt.

1) Would you consider having your own children?

2) Do you think assisted suicide should be available in HD cases?

3) Is your mom the only affected family member at the time being (besides you?)?

4) What are your life goals, knowing what the future has in store with HD?

I hope those aren't insensitive. I am just curious. I sincerely wish you all the best and I hope that the medical breakthroughs that they have been making in HD are made available in your time and you won't have to worry about it. It is incredibly brave of you to do this AMA and I applaude you!

CURE_HD916 karma

  1. This was the only thing that made me cry about the whole ordeal because I did always see myself as a great dad. I originally stated out right no, because I did not want to put a kid through what my sisters and I went through. My current girlfriend has inspired me to consider other alternatives like adoption. Or what my older sister has expressed interest in which is basically you pay a bunch of money to have invetro done on yourself to ensure the eggs do not carry the marker. They do all of this with out telling you if you do or do not carry the gene. I am sure they can do the same thing for sperm.

  2. It was easier to consider when it was my uncle, but thinking about my mom is completely different. I can't ever see myself being okay with doing that with my mom, but at the same time if it truly was what she wanted who am I to stop her.

  3. Yes. My mom is Irish Catholic so she has 8 brothers and sisters. 6 of them remain at risk, all around their mid 40s, my mom was the youngest. All of my cousins remain at risk as well. Thats includes the younger ones, the grandchildren of my late uncle Steve. Since my cousin never tested before he had kids and he was at a 50% chance, that makes his kids odds 25% at the moment. If you do not carry the disease, you don't pass it on. It doesn't skip generations.

  4. I use to want a big house, a yard, good job, nice car, got to my 9-5, save for retirement. I don't really want that anymore. I just want to be happy. I want to move around. Do things, see people, do people, see things. Be responsible, but be carefree.

edit. Thanks for the kindwords and your questions.

vdejaco66 karma

It probably got buried but im the girl at 50% chance of having a similar but very rare disorder. And I don't know if this affected you as much as it did me seeing as I'm female and you're male, but given my disease is more common in women I didn't really get to ask.

  1. Does being diagnosed change you ideas toward marriage? (As in are you more inclined to get married knowing that you might not be able to take care of yourself)
  2. Do you worry about your sisters possibly not having someone to take care of them if they fall ill to the disease?

CURE_HD47 karma

  1. Absolutely not. More likely to effect decisions about children rather than marriage
  2. I am confident in our support network that they as well as I will be cared for if they want to let the disease take them slowly.

EvilTech5150608 karma

They've done some work with deactivating genes. Ideally, they'll be able to do this for people with Huntington's pretty soon.


CURE_HD485 karma

Maybe stem cells hold the key to delivering the genes. Exciting stuff thanks for sharing!

neurobeans308 karma

I agree! Maybe I am biased since I work with stem cells, but they have the potential to be a great delivery mechanism and are neuroprotective in lots of animal models!

CURE_HD821 karma

woohoo science and shit

CURE_HD451 karma

If you can don't forget to upvote! I hate asking but the whole reason i'm trying to do this is to spread awareness about this disease. People describe it as Parkinson, Bipolar, and MS all rolled into one and its genetic. Most people have heard of those, but not nearly as many have heard of Huntingtons Disease.

ruinevil430 karma

Can I call you 13?

CURE_HD240 karma

Took me re-reading your comment multiple times to finally click. Damn that went over my head. I guess because I stopped watching house before she really came onto the show.

iamagainstit147 karma

related question, are you as attractive as olivia wilde?

CURE_HD591 karma

I have a nicer beard.

Sfinctors369 karma

I am a nurse in a long term care center. Currently take care of two HD residents. One of which is bed bound with no verbal capacity anymore, she expresses a lot with her eyes. Another who is wheelchair bound who is still high functioning and can do pretty much all activities of daily living independently.

The bed bound patient made it known that she did not want to live the way she does now but never got around to making any advanced directives, and her only relative, her POA, died in a car accident prior to getting all her wishes on paper. She did not want a feeding tube but had to have one put in due to her wishes not being written down.

My first question is have you, or your mother, given thought to about advanced directives?

And second, Have you heard of a drug called Xenazine? It helps to control the chorea, making it easier to perform daily tasks. I have seen it used in the wheelchair bound patient with positive results.

CURE_HD111 karma

I have not heard of said drug. I'm unsure as to what affairs are already in order I will have to talk to my family. Hopefully if xenazine does infact work the staff at the nursing h ome is aware of it.

keksdiebeste337 karma

Hey. My dad has Huntington's. I got tested when I was 18 too, because the uncertainty was so much worse. I had to put my parents into an assisted living facility when I was 22, since my mom was diagnosed with dementia too. It fucking sucks, man.

I found that the people who work at the facility really do sympathize and care, and that they'll do what they can to help you. I hope they work out a system for you.

Mostly just wanted to say hi, because this disease makes me feel so isolated, but- how was your testing experience? They gave me such a hard time because I was so young. Did you have any issues?

CURE_HD138 karma

Both your parents? I just hope ill be able to talk to her often. I have court in a few months so ill be flying home to see them. I thought I would, but overall it was a pretty painless process. + or - ?

h4mi90 karma

this disease makes me feel so isolated

So did yours come back positive too? :(

CURE_HD88 karma

You're not alone. I'm sure your aware but if your not their are great networks out there. Heres a great one. http://en.hdyo.org/

caddo07174 karma

This will probably get buried since the post has been out for a while, but...

I can't believe I'm seeing this today... My wife's Dad has HD - was diagnosed in June of 2011. My wife's sister decided to get tested and is gene positive. My wife decided to get tested too.

She gets her results Monday.

Like, the day after tomorrow. It's been the most stressful time of our lives...

However, I'm extremely hopeful about the advances that have been made in HD research the past few years. I truly believe a cure will be found. My wife is being tested so we can be a part of this research.

Damn man... Surely didn't think I would see this on reddit today. Been here for 6 years and haven't seen much about HD at all.

Here is my wife's and her sister's blog: http://www.hdtrainwreck.com/

CURE_HD45 karma

My heart goes out to you and your family. Just know if it does come back positive its not the end of the world.

ksulli10124 karma


CURE_HD24 karma

That would be more then amazing... I'm originally from Milwaukee. If you are actually serious feel free to message me. I am getting so many comments i'm afraid i'm going to miss some.

ksulli109 karma


CURE_HD6 karma

2 months from now would probably be ideal. I am currently scrapping by doing side jobs and have a project that would keep me here for a bit longer. After that I was hoping to try and save up my pennies to get us home. Not very realistic, didn't make it for Christmas.

LudicrousGibs105 karma

Why the hell can't you call your mom?

CURE_HD99 karma

I guess no phones in the nursing home. When I asked him this morning if he'd bring in a cellphone and I could talk to her and he said "well see"

LudicrousGibs63 karma

That's crap, man.

I am truly sorry you have been dealt such a hand.

CURE_HD106 karma

Some would say I was born with a plastic spoon in my mouth. Maybe not , but The Who might.

rawrbearian102 karma

So when I was born, my mom found out she had huntington's. Maybe it was a little after, I don't know. But I grew up with this weird woman who couldn't talk well, had some balance problems, but was otherwise ok. Until I became more and more self aware, and realized that she was deteriorating slowly in front of me. It was little things; forgetfulness, her inability to walk properly (swaying a lot, stumbling), stuff like that. As I got older, it got worse.

She was my mom, but she was also (and moreso) the "lady on the couch". She cried. A lot. And that, coupled with her losing her speech over time, and my father (who remained mostly drunk during the whole thing) led me to believe that she was already gone. I didn't talk to her much. I wasn't completely cold, despite what I probably am, and will make myself sound like. I just didn't treat her as my mom. More like a family friend who was staying for an extended period of time.

Both of my sisters were there for some of it, but when she started getting worse, they moved out and started families of their own. So, I was left with drunk dad and myself. I grew distant to my family. I would play outside all the time, at friend's houses. I read a lot, played a lot of video games. Anything to take my mind off of what was happening. I wouldn't invite friends over, cause I was embarrassed. I didn't resent her, and I still don't, I just didn't understand what was going on, and why I was powerless to help.

The beginning of summer vacation transitioning into 9th grade, freshman year of high school, she went into the hospital. We could never afford care, never afford full time nurses. We did have nurses visit, and some of her friends, who would help. But she finally went into the hospital and I knew that was it. She was there for about six months. Week before thanksgiving. I came home and didn't know where my dad or my sisters were. Started to get worried. Then dad got home and all he did was hug me really hard. I didn't even cry really. It didn't hit me for three days that she was gone. Then I cried, a little. A little more. A lot of it was anger, though. Not quite sadness, because I guess she was better off. Anger though, I remember that a lot. Why my mother? Why us? And self loathing, because I didn't take the time to get to know her.

I regret that, deeply and truly, and will continue to do so for the rest of my life.

I wish I had gotten to know her better. I wish I had said "I Love you mom" more. I wish I had said ANYTHING to her more than I did. I feel like such a jerk for not taking more time with her.

I tested negative for it, as did my oldest sister. My second oldest sister refuses to get tested, but has convinced herself that she has it. She's turning 40 this year, but because of other circumstances in our lives, I haven't talked to her in years. We were never close growing up.

So yeah, try your damnedest to go see her. Tell her you love her a hundred thousand times. Remember everything you can about her. Talk to her friends, other family members, anyone! You may not see this, I may get down voted to oblivion for being a jerk with the way I treated the situation in my family, but please do what you can to see her again (and I'm not saying/implying that you don't want to see her, I'm just really stressing that your idea to go see her if you can is a good idea!) I'd give anything to see my mom again, one last time...

CURE_HD38 karma

I just got off the phone with her, my dad took her out to dinner =)

Herdit98 karma

  1. Does your condition inspire you to do more with your life? Since you don't have as much time for a 'traditional' career path

  2. Do you actively seek out studies and trials? Why (not)?

CURE_HD144 karma

  1. I do find myself trying to waste as little time as possible, live in the now sort of thing. This has its downsides when considering life choices, like college and saving for retirement.

  2. I did not originally because all I saw in them was symptom reduction trying to fight off an ever mutating shitty protein that would eventually win. When I learned about DNA in freshman year I came to the conclusion that to beat this disease you will need to rewrite the line of code in the DNA responsible for creating the protein. Promising DNA drugs are starting to emerge from San Diego. I will be actively trying to pursue this trial.

neurobeans651 karma

For anyone who is interested, here is the full paper from that article. This seems to be the most promising thing out right now.


CURE_HD125 karma

upvote this man.

rottenbanana12797 karma

I think this is the disease that Woody Guthrie had. I don't have any questions, but I wish you the best for your remaining years. Make the best of them! <3

CURE_HD116 karma

Yup! They use to call it Woody Guthrie disease. Thanks for your kind words. I got plenty of time, science is on my side, its my mom I worry for.

sailorbrendan69 karma

I don't have a remotely useful question.

Just wanted to express condolences for your mother, and an perhaps overly optimistic hope that medical science can come up with something to help you.

Best of luck, man.

CURE_HD38 karma

Thanks =)

Peil66 karma

I'm the same. 15 years is a long time if you think about it, but don't let it sneak up on you. Also by the time you get to 30, they'll probably have the science to extend that by 35. And by the time you're 35, they could extend that by 10. Then 15, 20, maybe you might go on as long as a normal person.

CURE_HD73 karma

My heads in the clouds. I think they will silence the gene permanently in the next 15 years.

Elodrian54 karma

I hate to be morbid, but barring a medical breakthrough in the next 15 years, do you have an... exit strategy? Do you see yourself enduring the degenerative symptoms or ending your life or what?

CURE_HD63 karma

It wasn't until I met the girl i'm with now that I ever considered enduring the symptoms. So i'm not sure time will tell.

swimcool0852 karma

When you the times comes when you begin to degenerate(i hope that doesnt happen and i hope those studies produce results, i mean that truly), but are your plans for your life at that point?

CURE_HD118 karma

The first to be diagnosed in my family was my uncle when I was about 7. Since the gene was passed on from a father to a son it mutated more(higher GAC repeat, earlier it strikes) and he started showing signs before my grandfather. He committed suicide once he started to get worse. The way my father explained it was he had built up a decent nest egg and didn't want to put his family through taking care of him when the end was inevitable. I had no idea what huntingtons was, but at 7 I respected him for that. I also think Dr.Kevorkian was a wonderful, caring man who had all the right ideas. So i'm not sure whats going to happen when it gets to that point, but I also don't know whats going to happen next month. I guess ill cross that bridge when I get there.

citizenofgalaxy39 karma

How do you feel about fetal testing and abortions for HD positive fetuses as a way of removing HD?

CURE_HD41 karma

My sister is very interested. I'd maybe go the adoption route.

gonejahman36 karma

Does telling girls this story help your chances of getting laid? Or opposite?

CURE_HD87 karma

It has not worked to get laid, that's not to say it wouldn't. However it does bring up a lot of sensitive questions such as when should I tell someone? Obviously its not contagious but if I am getting serious with a girl she has a right to know.

hyperbolehelen28 karma


CURE_HD12 karma

Bookmarking this now thanks!

gonejahman28 karma

Do you feel a sense of urgency to "live" life? If so what are some of the things you have done?

CURE_HD53 karma

Grabbed two suitcases, a backpack, and jumped on a plane. I lived on someones couch in Arizona until I could get a job and a place. I also would say I lived more recklessly when I was in the unknown. I was depressed, stressed, etc now I feel time is precious.

persnicketypoop27 karma

What would you call "pre-symptoms"?

CURE_HD31 karma

noticing subtle changes in balance and coordination. Sometimes finding myself getting angry instead of inquisitive when I am confused. I can't take my eyes of the road very well to look at passing buildings, etc because I veer. Its something I later hear my uncle discussing when describing my grandfather.

notsurebutprettysure20 karma

I'm 24 and starting to notice the same sorts of things...

CURE_HD11 karma

Are you gene+? or at risk?

sledge0727 karma

Is your mom the farthest back this goes? I know a family who had it pass down through six generations. Make them count!

CURE_HD40 karma

Her brother was first. He started showing signs before their dad. My grandpa actually passed away around 70, he lived to be quite old for someone with HD. My great grandma was also old when she started showing signs, it went unaccounted for. The only reason doctors didn't mistake it for dementia or Parkinson with my grandfather was they knew his son had it, there for. The gene tends to stay the same when passed on from a mother but get more aggressive if passed on from a father.

unbeardedman23 karma

Sorry if it's been asked but if you found out it was progressing would you take your own life before it fully took you? I've always thought I would if I was diagnosed with the like but obviously thinking about the circumstances and actually having them are two different things.

CURE_HD36 karma

i'm not sure whats going to happen when it gets to that point, but I also don't know whats going to happen next month. Ill cross that bridge when I get there.

throwaway7894561234523 karma

Huntington's chorea has been going through my family for a few generations but was mostly hitting people when they were a little older (~40-50), which is later than most. When I was growing up, I heard stories about how "all the men in our family have the shakes and you do too," but everyone stopped talking about them because they all tended to kill themselves. My dad started having really bad muscle fasciculations in his arms/eyelid about 12 years ago and decided to go to the cleveland clinic to get it checked out. They pretty quickly figured it out that he had huntington's and had me tested. I was only 12 at the time and wasn't told the exact repeat count, but my dad said that his was slightly above normal but that mine was well above normal. The genetic counselers also made us aware that huntington's caused intense depression in a large amount of patients, which could explain why so many men in my family had killed themselves. When I turned 18 and was going to move to college, my dad told me that he wasn't going to die from his Huntington's, but that I eventually would. He sobbed for a long time before he left and we haven't brought it up since.

I'm 24 now and I don't know/don't want to know how much time I have left.

More than anything, I just wanted to say that I was sorry that you've had to watch people go through it. My dad has "the shakes" but none of the other symptoms have shown up for him yet, and my "shakes" are starting to come on stronger, but I've never had to watch anyone go through it. My uncle killed himself before it go very bad and he was the only other I've ever met. I can't imagine what it would be like to have to watch your mother suffer.

I'm really sorry. Good luck and I hope that they find a cure in time for you.

This is probably the worst proof ever, but it's me complaining about it before your AMA started: proof

Text#2 because she's a great gf

CURE_HD12 karma

Feel free to send me a message on a non throw away account. I am almost in tears reading this. Huntingtons tends to mutate more when passed on from a father to a son, and when it strikes earlier it tends to be more agressive. I hope you are aware of the support networks out there. My favorite is http://en.hdyo.org/

throw123412away123421 karma

I don't have any questions for you, I just want to wish you the best. My boyfriend was tested I'm not sure how many years ago for it, but has it and is 32 this year. Lets hope something good comes of those studies!

CURE_HD15 karma

I wish you and your boyfriend all the best. I'm sure some of this is hard to read. High hopes.

SirMothy19 karma

Dude I am in the same fucking boat as you man. My mother passed away in February and alot of my family members have Huntington's. I haven't been tested yet but I want to soon. All I can tell you man is be positive, do what you want in life because its about quality not quantity. Good luck!

CURE_HD3 karma

id tell you to do the same but that just sounds wrong. However you can start making the pun. "Are you sure?" "Am I sure? I'm not just sure im HD Posative"

jacquelynjoy18 karma

There is a homeless man in my area who appears to have this disease. Please, please, please do take good care of yourself and remain hopeful.

CURE_HD26 karma

That breaks my heart

AintNoFortunateSon16 karma

I recall reading a few years ago on a blog that cannabis may help Huntington's Disease. Are you family with this research. Do you use medical cannabis at all? Would you consider it?

CURE_HD57 karma

I don't use medical cannabis, just cannabis. I use to do alot of drugs, I still do but I use to too. All kidding aside, when I was at risk and severly depressed I was doing my fair share of drugs. I feel they if anything would have sped up the symptoms. I am no longer self medicating, however to this day I still will use cannabis. Not enough information exists about the neurological effects of cannabis on HD so it couldn't be prescribed to me in Arizona(more strict then say Cali) for that, however because of the tremors and muscle spasms associated with HD I was able to get a medicinal card here. Its expired though, down on my luck since I moved here and no funds to reapply.

Supertramp9229 karma

I like the Mitch Hedberg reference - 'I use to do drugs, I still do but I use to too"..hahahaha nice!

CURE_HD27 karma

I missed an oppertunity to see him back home, will regret that tell the day I die.

AintNoFortunateSon19 karma

I'm sorry to hear that. I'm a caregiver in Southern California and am always looking for new and interesting clients. I run a needs based collective so if ever move to Cali send me a PM and I'll do what I can to help you out. CBD rich strains are where I focus most of my energies. They are more neuroprotective and might be effective in treating HD. Unfortunately much more research is needed before we can know for sure. Best of luck to you.

CURE_HD12 karma

Well SoCal was my next stop. I just got to Arizona. I'm staying atleast a year though. I'll look you up =)

Merc_Soldier15 karma

Did your mother know that she had Huntington's disease before having kids? If yes, are you angry at her for knowing the chances of passing on the disease, yet still having kids? Are you planning on having kids? Why or why not?

CURE_HD18 karma

I was about 7 when my uncle passed away. First one on the family. It wasn't until I was about 14 when my mom started to get sick. I'm still undecided, I really want a family I just don't want to take the risk that they will have the same family life style I had growing up.

sabisands15 karma


CURE_HD16 karma

I was unsure such agreements existed. I honestly have a hard time seeing myself get to the point that I would need an agreement. I guess if I was going that route i'd take care of it on my own. I don't see my mother being physically or mentally able enough to do it on her own, where as my uncle committed suicide a few years after the disease started to progress.

IamGrimReefer15 karma

how did the doctor tell you? or was it just the letter?

CURE_HD37 karma

Normally they make you go through counseling ahead of time to be sure you can handle the news. I was already in therapy for issues with my mom and what not and had his consent. The clinic had set me down for about an hour and a half session. Which in the end they drew blood. I don't remember how long it took to come back honestly, but I remember I was allowed to bring people back with me to open the envelope. It was the doctors first time seeing it as well. I was with my sister and my father. They cried, I didn't.

tonman10113 karma

Huntington's runs in my GFs family, her mother had it, and was dead at 42. My GF is 34 and has never been tested. I've seen alot of change in her over the last 5 years, but I don't know if I'm seeing things that are normal, but I don't notice in other people, if she acts the way she does because she is scared, or if she really has it.

CURE_HD5 karma

THats too close to call for me. Since it is being passed on from a mother it tends to strike a round the same age. I would consider getting tested if I was in your girlfriends shoes. Assuming your girlfriend doesn't use reddit. Could you stay with her knowing she has it? My sister broke up with her fiance over it.

Tastygroove13 karma

I'm sorry to hear this. My middle boy was born tongue tied and had some other issues. We had him tested for this. Thankfully it came back negative.

CURE_HD15 karma

I hope he is well

iamaredditer12 karma

Do you have a bucket list? If so what are some things you want to do while you are still able to?

CURE_HD18 karma

Learn Italian

iamaredditer6 karma

You gotta have more than just that on your list. Like skydiving, scuba diving, spear fishing or something?

CURE_HD11 karma

Traveling I think would be the ultimate goal.

DontRunReds11 karma

How has this shaped your thoughts on having or raising children (bio, adopted, or fostered)? Do you feel it's something you'd want to do, if only for a short time? Do you feel excluded from the possibility of family life?

CURE_HD32 karma

I still haven't been able to make up my mind about this. The adopted/fostered/invetro child only solves half the problems with having a child in an HD family. I want family life, I do but not the same type I had growing up. Don't get me wrong I love my family, we are very close. That's not to say it wasn't extremely hard, my parents separated because my mom could be a bitch. I'm sure my dad wasn't a walk in the park either but the HD was starting to change my mom. They separated, my dad wasn't really aware as to why she had changed. If she was starting to change towards him it meant we were getting the brunt of it too. Over the next few years she got worse and worse and it was up to me and my two sisters to take care of her. My dad did eventually come back into the picture, and she eventually got on medication to help with the depression and anger. Even with all that it was still very, very, difficult. I remember being accused of making up a friends fathers funeral so I could avoid taking her to Walmart. So do I risk putting a child through a parent with HD, the anger, the violence, the mean hurtful things I could see happening. I would also potentially leave the child at such a young age. Or do I gamble on the fact that it will be cured. I have a few more years to make the decision.

Khaz199 karma

If heaven exists, what would you like to hear God say when you arrive at the Pearly Gates?

CURE_HD23 karma

"Sorry about the whole huntingtons thing...and making you crash your 3 week old $10k acura RSX and sticking you with all those felony charges because you had a pipe in the center console when it happend..but don't worry I had a plan"

SlowFoodCannibal7 karma

Is there any research involving using nutrition or natural remedies to postpone or minimize the symptoms? Also best of luck to you and also to your mom.

CURE_HD44 karma

Not sure not my cup of tea(no pun intented). I'm a computer guy. When the disease was explained to me, along with my understanding of DNA I concluded that to stop this disease you need to delete the little line of code in my DNA that says


Find that line of code and delete it. He's close.

ilikepancakesyo6 karma

I hope this doesn't come off as too intrusive, but do you have a list of things you want to do with your 15 years? Mind sharing some? Oh, and my heart goes out to you as well. Sending good thoughts and vibes your way.

CURE_HD5 karma

  1. Burning Man
  2. Italy
  3. Amsterdam
  4. Drive a real nice car
  5. Start my own company
  6. Ill try to come back for more
  7. Did you notice I skipped 4?

sambchops6 karma

What do you plan to do with 15 years left? Are you going to spend it dedicated to furthering the fight towards this disease? Have you thought that you didn't want to have children because it would pass this disease along? I can't imagine what you've had to go through, but I respect that you wanted to find out, I couldn't stand not knowing either.

CURE_HD12 karma

Thanks for your question. I'd like to ultimately like to make money fixing computers. If that means ultimately owning my own company that would be a dream come true. Currently I work from home fixing computers remotely, I just wish they had more hours, its not enough to survive off of. It would be nice to work from home and travel as well. As for the fight for the disease, at the moment I can't do much so I figured this AMA might help spread some awareness. Like my two HD tattoos for my mom and one commemoration the date I tested. http://imgur.com/Y0BAkq3 The one on the left I got for her, its the symbol for HDSA. The one on the right for when I got tested 11+23+10 to symbolize testing posative.

table55 karma

So my understanding is that if neither of one's parents has the disease, then there's no chance that their offspring will have the disease, right?

How do you know you have only 15 good years left?

How much was the genetic testing? Did your insurance cover the genetic testing?

Have you told your friends? How have your friends reacted?

CURE_HD8 karma

  1. Correct. However i'm unsure where the initial mutation comes from. Also it could be so obscure like my great grandmother she passed away before anyone ever noticed the symptoms. It was until recently that DNA testing became an option and the disease is hard to catch sometimes.

  2. My GAC repeat of 44 is how the gauge roughly how severe the mutation is. Higher number early onset and more agressive. 44 would match my mom and start showing symptoms around age 35. No way to know forsure. Many factors at play.

  3. Genetic testing could be covered on insurance. It is 500$ out of pocket.

  4. I was very open with all of my friends, they were very supportive. One friend went as far as to get a ribbon tattooed on her foot for CURE HD but we never got it finished. One of my regrets from leaving home.

FeatherFlyer4 karma

Knowing you only have so many years to live, are you going to travel the world and do things out of your comfort zone to experience the world, or are you going to try to keep a normal lively hood and not let it change your state of mind? Just curious, good luck to you with whatever you do in life, be strong!

CURE_HD10 karma

Travel the world!

HorribleStickfigures3 karma

No question, I just want to tell you how brave you are knowing that you're going into this am to thank you of helping to spread awareness. I have 3 cousins all in their mid 40s who are going through this. While I don't know your pain first hand, I think I know it quite well. Live your life to the fullest while you can and I sincerely wish you all the best.

CURE_HD3 karma

The impact on a family can almost be as great as the impact on the individual. Help your family care for them as much as you can. I can tell you as much help as my extended family was they weren't aware of half of the stuff that went on. They saw her getting sick, they saw her good days and called them her bad days. They never really got to see the bad times.

brussels4breakfast3 karma

I am so sorry to hear the bad news. I don't understand why you aren't able to get in touch with your mother. Can you go by and see her?

CURE_HD4 karma

Apparently no phones in the nursing home. I recently moved across the country. Hopefully my dad or sister will bring a cellphone and have her call me soon.

egus3 karma

I dont' have Huntington's, but when I was 21 I thought I had about 15 good years left, too.

CURE_HD8 karma

care to expand?

hector922 karma

1) Have you talked with your sisters about them getting tested? what are their reasons and do they think they ever will?

2) Do you have a rough plan for the 15 years? It's an awkward length of time where it's probably too long to just go straight backpacker hedonism style, but it's also probably too short for settling down and building toward a future. writing this has made me realize life is a lot of fucking building for a vague future date.

CURE_HD1 karma

My oldest has decided not to. I think the news would break her. My little sister hasn't expressed interest either way.

Yea your right about the awkward length of time. Do I spend 3-4 years in college perusing a bachelors or a masters degree and racking up debt or live happily in my income bracket. If you know give me a hint.