Boshintang
New member
- Joined
- Jun 30, 2023
- Messages
- 1
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
Hello everybody !
Thank you all for this unfortunate but amazing and necessary site!!
The members in this place are amazing and helpful to many people.
I wish this site was around when my mom was suffering with ALS back in the late 90’s … We were so lost and made so many mistakes … it was so hard … she suffered so much. honestly, our family has never been the same since my mom passed … even after 17 years… During the holidays or birthdays, when we all get together … my aunts, uncles, grandmother, cousins, my brother and father all know there’s one person missing … she was the glue that held us all together …
By the time we were told it’s ALS, my mom was already bed ridden and unable to do anything … Trach, stomach tube for feeding, urine catheter … in a nursing home waiting … just waiting … after 8 or 9 years in the nursing home … she passed. My father, brother, and me were involved in her care 24/7 … it’s common where I’m from for families to sleep next to sick family members until they’re cured … to be honest, the nursing staff was so rough and aggressive (over worked and underpaid)… we would find her face red struggling to breathe in an awkward position lying in her own feces for hours in a hot room without the ac on …
We decided to do it all ourselves … and they didn’t mind too much … one less patient to worry about … we all took turns. My father weekdays. My brother. Fri-sat. Me Sat-sun. We slept on the one seater coach. they gave us the medicine, we would put it in her stomach tube … we learned how to suction her mucus through the trach ourselves … the key was to not go too far deep … it was very irritating to her … we’d know cause her face would turn red when she was in pain or uncomfortable … we’d clean her feces right away so it wouldn’t burn her skin … we’d position her every 4 hours … we’d bathe her … brush her teeth with those swabs … empty out her urine … massage her and flex her joints … for 8 or 9 years, we did it all … than one day she passed and her suffering ended.
After my mom’s passing … my brother got married … and I moved out to Korea … it was just too much for me … and I haven’t been back since. Fast forward to now and My only brother has 2 nieces (whom I never met) and our relationship is non existent. We were so close growing up …
My dad got remarried and we never talk now … I blame him for prolonging my mom’s suffering … my mom suffered with ALS for over 10 years … 8 of which was bed ridden … I’d be comfortable knowing she was a vegetable but no tests were done to gauge her brain function … I think my mom was aware … and that hurts me to the core …
When something that traumatic happens, it stays with u forever … forever … my mom’s first symptom was right drop foot. I was a junior in high school, summer vacation and my mom asked me to take a walk with her outside. As we were walking she just fell … I laughed at her and helped her up … she had never been the same since that day. Crazy how aggressively ALS attacked my mom, chipping away at her body …
I’ve been in Korea for over 15 years now. Can’t believe I’m 44 … Once a week I do a basic physical test myself (stand up on my toes each leg, move my fingers) to check for unusual movements.
I’ve been drinking a lot … 5 days a week … sometimes all week for months … for the last 2 years … I don’t get hangovers nor headaches just feel dumb and numb (I don’t drink myself stupid passed out on the floor but enough to crawl into bed without washing up) …
This is no way to live, breaking promises to my gf by sleeping in on weekends … I decided to sober up … no problem. Didn’t suffer from any physical withdrawals, just boredom. So, a month ago I bought Nintendo switch and Zelda 2 … that’ll entertain me and keep my mind away from drinking …suddenly, I noticed discomfort in my fingers … I’m dying way too much. Why is this game so hard??
I started to moved and stretch my fingers around … I’m rubbing my index and middle finger together and realize my left hand is much slower. My left fingers are 10% the speed of my right!! When did this happen?? I can do everything with my left hand but it’s just slower … honestly, this was a month ago but this could’ve happened 3 months ago … I wouldn’t have noticed it. And it doesn’t seem to have progressed from when I first noticed it a month ago. But I’m starting to get twitches … arms feel so weak. My left foot feels like it’s not going as high as it should.
I went to an orthopedic hospital last week and the doctor gave me some inflammatory medicine … and told me to come back a week later … A week later, I returned and the doctor told me my left thenar muscle is much smaller than my right and if it was carpal tunnel syndrome, movement should have improved with medication … and recommends I go to a neurologist for EMG …
I mention this to my gf and she noticed my whole left arm is smaller than my right … thenar/wrist/forearm/bicep … which tells me this has been going on for awhile … both my arms feel weak … I was cooking the other day (I never cook) and everything felt weird … I think being brain fogged while drinking masked these problems, but now that I’m sober, I’m noticing all these problems. I never had twitches often but I’m feeling them all over … my left foot seems to drop a little more than usual. But I can move my left foot fine if I make an effort. I can move everything well … but my left fingers are so slow no matter how much effort I make.
You have to understand, I have always been conscious about twitches, drop foot, dropping things, tripping because of my mom … for 20 years … and something just doesn’t feel right … it just doesn’t feel right … I always wondered what it’s like not to have control over a foot or a finger.
“What do you mean it doesn’t move, mom? Did you have an accident? Just move it …”
Now, I kind of know what it’s like to lose function … My left finger moves and bends and acts perfectly normal at regular speed but when I try to do it faster it goes at 10% the max speed. I have this numb feeling going from my arms down to my wrist. As I type this I’ve prob had over 10 twitches around my body. It was never like this.
During the mid-early stage of ALS for my mom, she had an EMG done. I went with her to translate. Only 1 family member allowed so my mom asked me to go … I got to miss school (yeah!) … she was so scared. She hates needles and hospitals so she never smoked or drank and took care of her health to avoid going … sigh.
She was in so much pain during the EMG … I never saw my mom cry before. It was the first time …
The results was a clean EMG. ALS wasn’t even in the conversation. We didn’t even know what ALS was … (late 1996?)
The doctor said there’s nothing to worry about … maybe do some physical therapy…it’s stress related …
My mom was so happy … as We were leaving she asked what I wanted to eat. So I said diner food …
She never eats American food … she’s Korean and likes her Korean food but for me she was willing to go.
She had some soup she didn’t enjoy much … but I think she was happy … knowing everything was going to be ok … I never had a doubt. This doesn’t happen to us. This doesn’t happen to people like us, right ?
But it does … it doesn’t matter who you are … or where you are in life.
This quote always hits me hard from Unforgiven
Little Bill Daggett: I don’t deserve this … to die like this. I was building a house.
Will Munny: Deserve’s got nothing to do with it.
My mom was 46 when her symptoms started … and I’m 44 now. Time does fly. I still feel like a kid. I guess being away from home does that. No one to check you and remind you of your age.
Found the love of my life and we started a business together. No one telling us what to do. We’re the boss now. And business is starting to improve. There’s future in it. Potential.
Getting married soon … just us two. My family in USA. Can’t fly them all here. Too expensive… besides I Haven’t talked to them in years. Can’t fly her family out to NYC. Too expensive.
We were trying to have kids … but we put that on hold until I figure this mess out.
I know it’s too early to tell … and there’s no history in my family other than my sweet poor dear mom. Her 6 younger siblings are now in their 60’s and 70’s all healthy. My grandmother is 90 now. Healthy as a horse. While my mom was sick, my dear grandfather passed from cancer in his 70’s (no dementia) … he was always worried about his oldest daughter, my mom, even when he was sick.
As I get older, my memory fades of my mom … how sweet and lovely she was. Always working hard for her family. Life of an immigrant, trying to achieve the American dream. Working 12 hours a day, 6 days a week for me and my brother. All she wanted was to stay home and take care of the family and house. She just wanted to be a housewife.
I think my life would have been different with my mom around. We would’ve been best friends …
This thing I’m going through now suddenly consumes me with emotions that I’ve suppressed … the hardship we all went through … and still going through. The effort we made to move on … for 10 years our lives were put on hold for my mom …
… but I can’t believe I’m going to have an EMG done. The nightmare is coming back to me …. I can’t escape ALS. It’ll always be on the back of my mind.
I never went to detail with my mom about this but if I remember it progressed slowly. She didn’t have drop foot one day with no warning. She had sore calves. Always asking me to massage them. Her right foot started to drop slowly where in the beginning it felt stiff but fine. She was able to walk without drop foot if she made an effort. After some time she lost more and more control until it became drop foot.
So I guess my question is: for ALS, do fingers move slowly until it can’t move at all or does it happen suddenly … as in can’t bend pinky at all.suddenly …
Is it odd that I have atrophy in my whole left arm but can move everything fine just can’t go max speed 100%
I ask cause in the REaD BEFORE POSTING sticky it says:
- “it really does happen that something stops working all of a sudden”
- “it’s not about these things becoming more difficult, it is about these things being impossible”
Sorry for the long story … i think I need a drink (5:30 am beer run with my dog. And it’s raining. And he’s a Samoyed)
Any comment/criticism/advice is appreciated
TLDR: a boy loves his mom. The boy lost his mom to ALS. The boy becomes a man and has to do what men do. But he’s scared … not of dying but having to go through the whole testing process again.
Thank you all for this unfortunate but amazing and necessary site!!
The members in this place are amazing and helpful to many people.
I wish this site was around when my mom was suffering with ALS back in the late 90’s … We were so lost and made so many mistakes … it was so hard … she suffered so much. honestly, our family has never been the same since my mom passed … even after 17 years… During the holidays or birthdays, when we all get together … my aunts, uncles, grandmother, cousins, my brother and father all know there’s one person missing … she was the glue that held us all together …
By the time we were told it’s ALS, my mom was already bed ridden and unable to do anything … Trach, stomach tube for feeding, urine catheter … in a nursing home waiting … just waiting … after 8 or 9 years in the nursing home … she passed. My father, brother, and me were involved in her care 24/7 … it’s common where I’m from for families to sleep next to sick family members until they’re cured … to be honest, the nursing staff was so rough and aggressive (over worked and underpaid)… we would find her face red struggling to breathe in an awkward position lying in her own feces for hours in a hot room without the ac on …
We decided to do it all ourselves … and they didn’t mind too much … one less patient to worry about … we all took turns. My father weekdays. My brother. Fri-sat. Me Sat-sun. We slept on the one seater coach. they gave us the medicine, we would put it in her stomach tube … we learned how to suction her mucus through the trach ourselves … the key was to not go too far deep … it was very irritating to her … we’d know cause her face would turn red when she was in pain or uncomfortable … we’d clean her feces right away so it wouldn’t burn her skin … we’d position her every 4 hours … we’d bathe her … brush her teeth with those swabs … empty out her urine … massage her and flex her joints … for 8 or 9 years, we did it all … than one day she passed and her suffering ended.
After my mom’s passing … my brother got married … and I moved out to Korea … it was just too much for me … and I haven’t been back since. Fast forward to now and My only brother has 2 nieces (whom I never met) and our relationship is non existent. We were so close growing up …
My dad got remarried and we never talk now … I blame him for prolonging my mom’s suffering … my mom suffered with ALS for over 10 years … 8 of which was bed ridden … I’d be comfortable knowing she was a vegetable but no tests were done to gauge her brain function … I think my mom was aware … and that hurts me to the core …
When something that traumatic happens, it stays with u forever … forever … my mom’s first symptom was right drop foot. I was a junior in high school, summer vacation and my mom asked me to take a walk with her outside. As we were walking she just fell … I laughed at her and helped her up … she had never been the same since that day. Crazy how aggressively ALS attacked my mom, chipping away at her body …
I’ve been in Korea for over 15 years now. Can’t believe I’m 44 … Once a week I do a basic physical test myself (stand up on my toes each leg, move my fingers) to check for unusual movements.
I’ve been drinking a lot … 5 days a week … sometimes all week for months … for the last 2 years … I don’t get hangovers nor headaches just feel dumb and numb (I don’t drink myself stupid passed out on the floor but enough to crawl into bed without washing up) …
This is no way to live, breaking promises to my gf by sleeping in on weekends … I decided to sober up … no problem. Didn’t suffer from any physical withdrawals, just boredom. So, a month ago I bought Nintendo switch and Zelda 2 … that’ll entertain me and keep my mind away from drinking …suddenly, I noticed discomfort in my fingers … I’m dying way too much. Why is this game so hard??
I started to moved and stretch my fingers around … I’m rubbing my index and middle finger together and realize my left hand is much slower. My left fingers are 10% the speed of my right!! When did this happen?? I can do everything with my left hand but it’s just slower … honestly, this was a month ago but this could’ve happened 3 months ago … I wouldn’t have noticed it. And it doesn’t seem to have progressed from when I first noticed it a month ago. But I’m starting to get twitches … arms feel so weak. My left foot feels like it’s not going as high as it should.
I went to an orthopedic hospital last week and the doctor gave me some inflammatory medicine … and told me to come back a week later … A week later, I returned and the doctor told me my left thenar muscle is much smaller than my right and if it was carpal tunnel syndrome, movement should have improved with medication … and recommends I go to a neurologist for EMG …
I mention this to my gf and she noticed my whole left arm is smaller than my right … thenar/wrist/forearm/bicep … which tells me this has been going on for awhile … both my arms feel weak … I was cooking the other day (I never cook) and everything felt weird … I think being brain fogged while drinking masked these problems, but now that I’m sober, I’m noticing all these problems. I never had twitches often but I’m feeling them all over … my left foot seems to drop a little more than usual. But I can move my left foot fine if I make an effort. I can move everything well … but my left fingers are so slow no matter how much effort I make.
You have to understand, I have always been conscious about twitches, drop foot, dropping things, tripping because of my mom … for 20 years … and something just doesn’t feel right … it just doesn’t feel right … I always wondered what it’s like not to have control over a foot or a finger.
“What do you mean it doesn’t move, mom? Did you have an accident? Just move it …”
Now, I kind of know what it’s like to lose function … My left finger moves and bends and acts perfectly normal at regular speed but when I try to do it faster it goes at 10% the max speed. I have this numb feeling going from my arms down to my wrist. As I type this I’ve prob had over 10 twitches around my body. It was never like this.
During the mid-early stage of ALS for my mom, she had an EMG done. I went with her to translate. Only 1 family member allowed so my mom asked me to go … I got to miss school (yeah!) … she was so scared. She hates needles and hospitals so she never smoked or drank and took care of her health to avoid going … sigh.
She was in so much pain during the EMG … I never saw my mom cry before. It was the first time …
The results was a clean EMG. ALS wasn’t even in the conversation. We didn’t even know what ALS was … (late 1996?)
The doctor said there’s nothing to worry about … maybe do some physical therapy…it’s stress related …
My mom was so happy … as We were leaving she asked what I wanted to eat. So I said diner food …
She never eats American food … she’s Korean and likes her Korean food but for me she was willing to go.
She had some soup she didn’t enjoy much … but I think she was happy … knowing everything was going to be ok … I never had a doubt. This doesn’t happen to us. This doesn’t happen to people like us, right ?
But it does … it doesn’t matter who you are … or where you are in life.
This quote always hits me hard from Unforgiven
Little Bill Daggett: I don’t deserve this … to die like this. I was building a house.
Will Munny: Deserve’s got nothing to do with it.
My mom was 46 when her symptoms started … and I’m 44 now. Time does fly. I still feel like a kid. I guess being away from home does that. No one to check you and remind you of your age.
Found the love of my life and we started a business together. No one telling us what to do. We’re the boss now. And business is starting to improve. There’s future in it. Potential.
Getting married soon … just us two. My family in USA. Can’t fly them all here. Too expensive… besides I Haven’t talked to them in years. Can’t fly her family out to NYC. Too expensive.
We were trying to have kids … but we put that on hold until I figure this mess out.
I know it’s too early to tell … and there’s no history in my family other than my sweet poor dear mom. Her 6 younger siblings are now in their 60’s and 70’s all healthy. My grandmother is 90 now. Healthy as a horse. While my mom was sick, my dear grandfather passed from cancer in his 70’s (no dementia) … he was always worried about his oldest daughter, my mom, even when he was sick.
As I get older, my memory fades of my mom … how sweet and lovely she was. Always working hard for her family. Life of an immigrant, trying to achieve the American dream. Working 12 hours a day, 6 days a week for me and my brother. All she wanted was to stay home and take care of the family and house. She just wanted to be a housewife.
I think my life would have been different with my mom around. We would’ve been best friends …
This thing I’m going through now suddenly consumes me with emotions that I’ve suppressed … the hardship we all went through … and still going through. The effort we made to move on … for 10 years our lives were put on hold for my mom …
… but I can’t believe I’m going to have an EMG done. The nightmare is coming back to me …. I can’t escape ALS. It’ll always be on the back of my mind.
I never went to detail with my mom about this but if I remember it progressed slowly. She didn’t have drop foot one day with no warning. She had sore calves. Always asking me to massage them. Her right foot started to drop slowly where in the beginning it felt stiff but fine. She was able to walk without drop foot if she made an effort. After some time she lost more and more control until it became drop foot.
So I guess my question is: for ALS, do fingers move slowly until it can’t move at all or does it happen suddenly … as in can’t bend pinky at all.suddenly …
Is it odd that I have atrophy in my whole left arm but can move everything fine just can’t go max speed 100%
I ask cause in the REaD BEFORE POSTING sticky it says:
- “it really does happen that something stops working all of a sudden”
- “it’s not about these things becoming more difficult, it is about these things being impossible”
Sorry for the long story … i think I need a drink (5:30 am beer run with my dog. And it’s raining. And he’s a Samoyed)
Any comment/criticism/advice is appreciated
TLDR: a boy loves his mom. The boy lost his mom to ALS. The boy becomes a man and has to do what men do. But he’s scared … not of dying but having to go through the whole testing process again.
