kdraft
drifted
- May 25, 2025
- 13
so, a few years ago my mother got diagnosed with Huntington's Disease [i'll be referring to it as HD], and she's in her 40s right now. I know most people [at least in my experience] don't know what that is. Basically, HD is a terminal illness kind of like Alzheimer's or Parkinson's disease- it's a neurodegenerative disease. It's genetic and has a 50/50 chance of passing down to a kid. Everyone has a Huntington's gene. This gene repeats- the repeats are referred to as CAG repeats. People who don't have HD generally have less than 26 CAG's. In HD though, the Huntington gene mutates and makes far more CAG repeats than it's supposed to. You don't get affected by HD if you have less than 35 repeats majority of the time. But 27-35 range is considered a bit genetically unstable- im unsure if that's how to phrase it- which means that you may pass down the mutated gene. If you have anything above 36, you'll get HD [i'm pretty sure anyways]. If you have over 60, you get juvenile HD, so you develop symptoms at a lot younger of an age and die younger. I think my mom has 40 something, I don't specifically recall. The disease is a bit rare in america, no known cure, stuff like that.
Take what i say about HD [besides my mom's symptoms and such] with a grain of salt because im not a doctor, i'm speaking from memory as to what i've researched.
So the CAG repeats that are from the malfunctioning mutated protein start building up and becoming toxic, which affects the brain and specifically the basal something- i forgot the other word- but more so affects the movement part- initially forming chorea and such. They're recently studying as to if gene therapy can help/slow down HD progression.
Enough being a bit of a nerd on my part, well, i'm pretty depressed about my mom having HD- and i can't imagine how depressed she feels about it- she attempted suicide in january around the day she got diagnosed a few years ago. She survived due to medical help and only had to spend a day in a psych ward. I remember visiting her in the hospital- which my step-mom took me because the hospital is is over half an hour's drive away and you have to drive down the interstate for a bit to get there- while she was still in bad condition. I live with my dad and step-mom because I am still struggling to find a job- most nearby places aren't hiring or just have declined my applications unfortunately- or i'll apply and then after i give them information they request after a while of the application sitting around they suddenly say position is closed, stuff like that. I feel incredibly awful for not having a job by now- i wanted to be out of the house by 18. Although, with how expensive housing is, I think it'd still be a delayed departure anyway. I think I'm a bit traumatized from seeing my mom like that. She was restrained because initially when the paramedics got to her she was very violent, had three seizures in a row, stuff like that. She overdosed on antidepressants she doesn't take anymore but still had the bottle for. She didn't take the whole thing, but enough for all of that to happen. My step-mom came in with me to the room, but anyway, she kept saying, "Hey, it's your daughter [which, i identify as a guy but i still haven't come out to anyone but my mom, but she still refers to me as female for the most part anyway- she's not anti anything, just that we're almost always around other people when hanging out], she's here to see you" and my mother only could say "i don't know where i am" "i dont know what's happening" and stuff like that. "I don't understand what's going on." besides those words, she could only ask the nurse for more ice chips by saying "more" and then being spoon fed, although the nurse did have to inform her she had to wait a minute sometimes. Her mouth was hanging open a little, she still hadn't opened her eyes, it'd been two days since she was admitted. I almost cried but I didn't let myself while visiting my mom. I just decided to hold my mom's hand and be there with her, and at some point she opened her eyes for the first time and the only thing she said was, "i'm sorry" then instinctively i told her "it's okay" [i struggle to think of other responses when someone apologizes] and then she shook her head and fell back asleep.
I respect the choice to commit suicide by all means- I've tried to myself but sometimes it does hurt a little to watch, you know?
She did recover though, but her legs have stiff calf muscles and they're a little swollen, which she's going to physical therapy for, due to the three seizures in a row though.
But nowadays, she's so shaky due to Huntington's, she's starting to forget things, she can't take as many pills at once anymore that she used to because the doctors are having her take more than 10 different pills nowadays, morning and evening, they've really got her heavily medicated. She has constant migraines that no medicine's seem to help besides migraine cocktails that ease the pain a little. But she also has depression, anxiety, stuff like that. They previously diagnosed her with borderline personality disorder but then they changed their minds, so I dunno about that.
She also has other health issues with things like blood pressure- there's really a list. I feel so, so bad for her.
Since I found out she had Huntington's Disease, i've been heavily studying it. I know she's married to my step-dad, but he doesn't really seem to wanna take care of her when it'll come to that. I know I will take care of her as much as I can when it comes to the late stages though. I know she has a fear of forgetting everything and such too. Her dad had it- although her dad was not the best person and she never stayed in contact with him after she got taken away by CPS from their original house- she's been all over the place- foster homes, adoption centers, stuff like that. One of her foster homes, they forced her to go to a "southern baptist church" type of thing, one of the strict ones and she was still forced to go even if sick and everything, which resulted in her being an aethiest, which is fair. My stance on that is just 'may or may not be real, i dunno im agnostic'
this is a lot of rambling for the title
I just don't want her to die like what it's heading for- which is the terminal illness route. Now I only have so much time left to spend with her before she starts becoming physically unable- or even forgets who i am. She used to have perfect, crystal-clear memory basically and now she doesn't. She isn't allowed to get a job and when she does get money from either disability or something else that gives her monthly/weekly i forgot the interval money, sometimes my step-dad uses it without asking. She has family in another state and we used to visit every summer, but then my family got too poor for that, for visiting by cheap plane travel. We were gonna go this summer, then my step-dad used a huge majority of the tax money without even telling my mom, so we couldn't go and it's such a frustrating thought because she doesn't have all the time in the world or the rest of her life to see her family- which is adopted family sure, but it's still family- they took care of my mom correctly without abusing her, and I feel like everyone around her is acting like she does have time. I mean, I can't let go of this for some reason but my dad said it'd be easier if my mom was dead. I didn't appreciate it.
i just wish she didn't have to suffer like this. I feel like a moral obligation to stay alive as well- stay alive at least as long as she's around. I don't feel like my step-dad treats her very well, my little brother doesn't like seeing her, my older brother isn't biologically related to her but still cares a little bit but, you know, not really to do anything. My step-mom has her blocked. Just like... I feel like I'm one of the few people who still care about her. She's frustrated with everything nowadays because she's too shaky to write without giving up, she used to love coloring books and she used it as a coping skill and now she's scared to because she may not be able to color in the lines anymore, stuff like that. She doesn't want to leave me and my little brother so soon- let alone have us take care of her in the future. It just sucks- she's such a good person, she doesn't deserve this. She doesn't have friends- and every time she has they end up backstabbing her. I guess I'm just scared, which feels a bit childish, but I subconsciously know it isn't at the same time, you know?
Just felt like getting all of that out
sorry for any misspells or bad grammar, i did not sleep last night i am quite groggy today
Take what i say about HD [besides my mom's symptoms and such] with a grain of salt because im not a doctor, i'm speaking from memory as to what i've researched.
So the CAG repeats that are from the malfunctioning mutated protein start building up and becoming toxic, which affects the brain and specifically the basal something- i forgot the other word- but more so affects the movement part- initially forming chorea and such. They're recently studying as to if gene therapy can help/slow down HD progression.
Enough being a bit of a nerd on my part, well, i'm pretty depressed about my mom having HD- and i can't imagine how depressed she feels about it- she attempted suicide in january around the day she got diagnosed a few years ago. She survived due to medical help and only had to spend a day in a psych ward. I remember visiting her in the hospital- which my step-mom took me because the hospital is is over half an hour's drive away and you have to drive down the interstate for a bit to get there- while she was still in bad condition. I live with my dad and step-mom because I am still struggling to find a job- most nearby places aren't hiring or just have declined my applications unfortunately- or i'll apply and then after i give them information they request after a while of the application sitting around they suddenly say position is closed, stuff like that. I feel incredibly awful for not having a job by now- i wanted to be out of the house by 18. Although, with how expensive housing is, I think it'd still be a delayed departure anyway. I think I'm a bit traumatized from seeing my mom like that. She was restrained because initially when the paramedics got to her she was very violent, had three seizures in a row, stuff like that. She overdosed on antidepressants she doesn't take anymore but still had the bottle for. She didn't take the whole thing, but enough for all of that to happen. My step-mom came in with me to the room, but anyway, she kept saying, "Hey, it's your daughter [which, i identify as a guy but i still haven't come out to anyone but my mom, but she still refers to me as female for the most part anyway- she's not anti anything, just that we're almost always around other people when hanging out], she's here to see you" and my mother only could say "i don't know where i am" "i dont know what's happening" and stuff like that. "I don't understand what's going on." besides those words, she could only ask the nurse for more ice chips by saying "more" and then being spoon fed, although the nurse did have to inform her she had to wait a minute sometimes. Her mouth was hanging open a little, she still hadn't opened her eyes, it'd been two days since she was admitted. I almost cried but I didn't let myself while visiting my mom. I just decided to hold my mom's hand and be there with her, and at some point she opened her eyes for the first time and the only thing she said was, "i'm sorry" then instinctively i told her "it's okay" [i struggle to think of other responses when someone apologizes] and then she shook her head and fell back asleep.
I respect the choice to commit suicide by all means- I've tried to myself but sometimes it does hurt a little to watch, you know?
She did recover though, but her legs have stiff calf muscles and they're a little swollen, which she's going to physical therapy for, due to the three seizures in a row though.
But nowadays, she's so shaky due to Huntington's, she's starting to forget things, she can't take as many pills at once anymore that she used to because the doctors are having her take more than 10 different pills nowadays, morning and evening, they've really got her heavily medicated. She has constant migraines that no medicine's seem to help besides migraine cocktails that ease the pain a little. But she also has depression, anxiety, stuff like that. They previously diagnosed her with borderline personality disorder but then they changed their minds, so I dunno about that.
She also has other health issues with things like blood pressure- there's really a list. I feel so, so bad for her.
Since I found out she had Huntington's Disease, i've been heavily studying it. I know she's married to my step-dad, but he doesn't really seem to wanna take care of her when it'll come to that. I know I will take care of her as much as I can when it comes to the late stages though. I know she has a fear of forgetting everything and such too. Her dad had it- although her dad was not the best person and she never stayed in contact with him after she got taken away by CPS from their original house- she's been all over the place- foster homes, adoption centers, stuff like that. One of her foster homes, they forced her to go to a "southern baptist church" type of thing, one of the strict ones and she was still forced to go even if sick and everything, which resulted in her being an aethiest, which is fair. My stance on that is just 'may or may not be real, i dunno im agnostic'
this is a lot of rambling for the title
I just don't want her to die like what it's heading for- which is the terminal illness route. Now I only have so much time left to spend with her before she starts becoming physically unable- or even forgets who i am. She used to have perfect, crystal-clear memory basically and now she doesn't. She isn't allowed to get a job and when she does get money from either disability or something else that gives her monthly/weekly i forgot the interval money, sometimes my step-dad uses it without asking. She has family in another state and we used to visit every summer, but then my family got too poor for that, for visiting by cheap plane travel. We were gonna go this summer, then my step-dad used a huge majority of the tax money without even telling my mom, so we couldn't go and it's such a frustrating thought because she doesn't have all the time in the world or the rest of her life to see her family- which is adopted family sure, but it's still family- they took care of my mom correctly without abusing her, and I feel like everyone around her is acting like she does have time. I mean, I can't let go of this for some reason but my dad said it'd be easier if my mom was dead. I didn't appreciate it.
i just wish she didn't have to suffer like this. I feel like a moral obligation to stay alive as well- stay alive at least as long as she's around. I don't feel like my step-dad treats her very well, my little brother doesn't like seeing her, my older brother isn't biologically related to her but still cares a little bit but, you know, not really to do anything. My step-mom has her blocked. Just like... I feel like I'm one of the few people who still care about her. She's frustrated with everything nowadays because she's too shaky to write without giving up, she used to love coloring books and she used it as a coping skill and now she's scared to because she may not be able to color in the lines anymore, stuff like that. She doesn't want to leave me and my little brother so soon- let alone have us take care of her in the future. It just sucks- she's such a good person, she doesn't deserve this. She doesn't have friends- and every time she has they end up backstabbing her. I guess I'm just scared, which feels a bit childish, but I subconsciously know it isn't at the same time, you know?
Just felt like getting all of that out
sorry for any misspells or bad grammar, i did not sleep last night i am quite groggy today
