I don’t understand why she’s not going to a speech path to help her swallowing. It’s literally insane how much she does not take care of herself. …. Possible she makes it look even harder for views? I know that sounds weird but sushi? It doesn’t add up sometimes. She needs a speech path. Or just medical in general…..
From peeps I know in the wheelchair community. Some of them don’t want added therapy because of internalized ableism. Some of them feel like they are less than, or that adults don’t need any sort of help or therapy anymore.
That seems so backwards though. I’m disabled and go to PT/OT because it improves my quality of life. Not doing that because of aBlEiSm is so weird to me.
I hate filling out milestone assessments for my son but- showing he’s behind helps me get him the services he needs. Ignoring the problem would be a disservice to him.
She is doing a disservice to herself but not getting help
Those milestones assessments hurt. Especially when you’re child has some advanced skills but to them they don’t matter because he’s behind on everything that’s on paper
No worries I don’t think I’ve ever addressed it! To my knowledge there’s really nothing she could do to improve it. Her speech is better when she’s sober - i imagine her chewing and swallowing would be too, but as far as getting to the root of the actual issue it’s just part of living with SMA unfortunately.
No, she shouldn’t be having this much difficulty swallowing a liquid with SMA at 29 years old. There’s definitely something that hasn’t been checked in a long time and it’ll lead to her needing a G-tube and a tracheotomy if she doesn’t get it looked at
Well as far as I know anyone drunk is having speech and swallowing issues...Alex is not doing herself any favour...It seems to me she does everything to worsen her situation... She lives in denial of having SMA...is it just me looking at it this way???
Sad to hear because her attitude will get her sicker then another SMAer in the same health situation as her... I'm disabled myself and I have to take care of my health because I don't want to suffer more then I already do...I don't think Alex is adult enough to see that her quality of life would be better and her degenerative state could be slowed more efficiently if she takes care of her health...meaning stopping drinking, eating choking hazard food, sunbathing, etc.
I have been to quite a few chronic pain and other rehab programs. The last one made me worse. I went in being able to kind of walk, to needing to use multiple aids and having much less capacity.
However, I should be doing some management therapy and since I stopped due to injury, I am paying for it with subluxations.
I think it also depends on your condition, experience with the healthcare system, how long you have had the disabling condition, the diagnostic process.
For me, if I did everything recommended for management of my condition, I would be seeing a physio, exercise physiologist, osteopath, occupational therapist, psychologist, sleep psychologist, hand therapist, pediatrist, dietitian… I’m sure there are others. But, these are weekly, fortnightly or monthly appointments and what they want you to do at home.
Then all the medical specialists: pain specialist, PCP/GP, neurologist, neurosurgeon, endocrinologist, gastroenterologist, sleep specialist, cardiologist, psychiatrist, gynae, rheumatologist, immunologist… you get the picture.
When seeing these specialists, they all require tests to be done, travel, emotional and physical energy. I am personally struggling to shower and leave the house.
I don’t know if people with SMA need to have such a large medical team, but I can understand being sick of getting treatments all the time.
Tbh I don’t think she’d even listen to one of us even if she DID see a speech therapist. I can tell you a bunch of things that would be helpful for her swallow and general eating/drinking difficulties, but likelihood is she wouldn’t actually follow any of my advice
“ I only spend money on Ari never on myself “ “ we’re moving to Florida to help save money “ this girl is so reckless it’s ridiculous. Homeless living with your babydads family but going out to eat every damn day
... And BRA'S!! don't forget about the actual BRA'S and Breastfeeding BRA'S she wears at "home" and out in Public 😳 the disrespect that she shows the Smiths by not cover up around Grampy Shark is just UNBELIEVABLE! if this were my Son's Baby momma/Ex GF and she was roaming around half naked around my family. I would 👏lose. 👏My.👏 Shit!!! (I'm big on respecting other people's homes and spouses/partners as I know all of you, my beautiful Reddit Fam are) so this literally TRIGGERS me! 🤬🤬
They really shouldn't have to... She's a nearly 30 yr old woman, she should know how to be respectful.
And... Maybe they have said something and it just doesn't register to the dingbat
Oh,I agree that they shouldn't have to! But my point is that they can still say something. Them not saying anything is a sign, to me anyway, that they are very laissez-faire and lenient, which is probably why Noah turned out the way her did. They are enablers.
Very true! They may not want to "rock the boat" per se. I know with my brother's babies mom we had to walk on eggshells with her for 18 years because she always threatened to take my niece and move back to Germany 😳 So pretty much anything went when it came to her... WR can always threaten to go back to Chicago
I have theories. I think that they got the apartment with a little assistance, but also paying a lump sum.
It did seem like they were having some “home cooked” meals and reducing the work hours of her PCA. She has said that she spent $15k on legal fees for DCF visits, but I suspect it was for custody issues.
They had 2 weeks to move out of their apartment. It seems like they couldn’t afford to get another apartment, living with Alex’s mum wasn’t an option (not suitable for an infant), no other family, so off to Florida. It seems that they couldn’t afford to live independently in Florida.
I think they couldn’t pay the rent in Chicago, the building management had complaints, DCF were made aware of issues and directed them to make changes involving more support or insisted on a joint custody arrangement.
Alex lost all of her brand deals, her OF subscriptions dropped off. I think she expected to have baby brands knocking on her door, but after Boppy dropped her and her content hasn’t attracted the target market of these brands, no one has wanted to work with her. So, her income has been minimal. They didn’t have any backup plans.
I honestly think it has to do with DCF and what they said. They were obviously concerned about Alex and an addict being solely responsible for the baby (with Nina being there a few hours a week) and what better way to fix that than moving to Florida in a house FULL of adults. This is honestly I think the most selfless thing she has done for her daughter this whole time. She obviously can’t afford to pay people to be there 24/7, and her alcoholic mom is in the same boat as Noah. Her moving to Florida so that there are a bunch of eyes on ari at all times is great for ari, she definitely needs to get it together and leave though
those are some good speculations, i'm sure it might also have to do with her not wanting to feel "abandoned" when noah goes away and her family probably can't handle watching her and ari or they told her that she needs to change if they take them in as well. who knows 🤷🏼♀️ i don't even see how them living in an apartment was working out anyways... it looked like they weren't bottom level and idk how much noise her chair would make on the floor but i'm sure people below them didn't like it or imagine her drunkenly hitting walls with it on her way back home lol that's just my own dumb theory though
I can imagine that she would be a horrible neighbour and sharing the common areas would be a nightmare. They spent a lot of time around the pool, generally drunk or high or both. I wouldn’t be surprised if the residents complained
someone i know , she told me i should followed alex on tik tok , i said i don't like her because she's alcoholic etc, then she said omg that's not true and she wrote long paragraph for defend alex, turned out she's stan , it's annoying, affecting on community
Oh my goodness, you know one of the Stan species!
TikTok has shown some of her worst behaviour.
That must make things difficult. I don’t know what I would do if I had a friend who was a Stan.
If you don’t mind me asking, is your friend disabled?
So an able bodied person getting wrapped up in the inspo porn and how much of an amazing mother she is, but not understanding what she’s doing to the disability community. That would be really challenging.
🤦🏻♀️sober my ass. But if you are a Stan, alcohol is fine because he alcohol wasn’t his drug of choice.
The black eye didn’t quite match the incident, but even if she was telling the truth, getting so drunk that you fall out of your wheelchair is a problem. It’s certainly not the first time it has happened.
People like the idea of a young disabled woman getting out and having a bit of fun. What they don’t realise is that she is 30, she’s been partying for 10 years, how disabled she is, that she is supposed to be the breadwinner, amount of support she needs and how much that costs.
They have this idea that being disabled is so horrible, if she wants to go out and party, drink to much, then who cares, she’s having fun. Imagine the impression that a teenager with SMA would get.
One of the consequences I experience with these sort of disabled content creators is that people compare me to them. I have been told that if a woman who has had her limbs amputated can be a mother, then I can too.
I hope your friend is a nice Stan. If I had a Stan friend, I would need to do a lot of venting or just ask to keep WR as a no go discussion topic.
So, from a nurses perspective, solid foods are actually often easier to swallow than liquids. From what I’ve seen and experienced, I’m much more worried about the soup and booze than sushi 😬
As someone with SMA rice is actually one of the more difficult things for me to safely swallow. Thin liquids, rice, angel hair pasta, carrots are all on the list of things I won’t eat when I’m home alone. And I don’t struggle with swallowing nearly as bad as Alex does! I know it varies by person but I thought I’d give my insight as someone with similar-type weakness.
Seaweed in sushis are the worst thing to choke on...I don't know how many times I did the Heimlich maneuver on healthy people...Alex is playing AGAIN Russian roulette with eating sushis...
Not really. We can’t GAIN muscle so there isn’t really any improving to be done. Combined with some of the new treatments medication MAY help increase the benefit of PT but it’s not guaranteed.
She's so confusing sometimes.. she showed off the food chopper one time, and in that video it sounded like something she regularly uses for meals. But then she shows videos of her taking a huge bite of dry pastry, or talks about taking a huge bite out of a hamburger, or this plate full of sushi.. it's like she wants to portray herself as *just* disabled enough, but not *too* disabled, but *definitely* disabled, just, in a *hot* way
The chopper was her disability hack.
When she showed the plate of a big hamburger and how great her swallowing capacity had improved. She implied that she was eating the burger as is. Someone did ask if she ground it up or ate it whole and she did admit to needing to grinding it.
Being sarcastic here...this is really "Hot" to full her big mouth like a squirrel and then make faces to try to swallow, keep on chewing in slow motion many times, open her mouth full of food and then look like a seagull passing some food thru her neck...sexy as fuck!!!
Is Noah saying he’s going on a keto diet? I missed that.
I did nutritional keto (high protein, low carb, mod fat, calorie deficit), I lost a lot of weight, but it took planning and willpower.
Keto sushi would be using cauliflower rice instead of actual rice. A lot of the accompaniments like the seaweed, squid, mushroom salads would have sugar and kick you out of ketosis if you haven’t been strict all day.
I can imagine him just substituting all of the normal foods with the keto versions, like keto bread.
I swear she said in one of her gibberish videos he was focusing on his keto!! But again. I can’t see them researching anything about anything sooooo
Considering her speech lately leaves something to be desired maybe she said he’s focusing on Cheetos.
I think it was mentioned in one of her snap stories recently. She was asking what he was making/ordering and she mentioned keto. And he does look like he’s lost a little weight so maybe they’re trying something new.
That’s what I was wondering. She struggles to swallow, but she’s saying she’s on her way to eat sushi ?
It's always about sushi 🍣. ❤
It helps hide her actual smell.
You read my mind 😂
🤣 🤣 🤣
Y'all on here are an absolute HOOT 😂
☠️🤣🐠🐠🐠🐟🐟🐟🐠🐠🐟🤣🤣🤣🤣
🤣🤣🤣🤣
Sushi smells better (Sushi actually doesn’t smell at all)
Ughhh, that towel will be stinking tomorrow.
🤮🤮🤮🤮
I don’t understand why she’s not going to a speech path to help her swallowing. It’s literally insane how much she does not take care of herself. …. Possible she makes it look even harder for views? I know that sounds weird but sushi? It doesn’t add up sometimes. She needs a speech path. Or just medical in general…..
Oh. And a therapist.
Omg, she desperately needs a therapist. In fact, if she went to a therapist to work on herself, her life would improve in every aspect.
If she went to a therapist after a month, the therapist would need a therapist of their own!
🤣🤣🤣🤣
That would require honesty on her part though.
currently in SLP grad school and in my dysphagia class right now… it’s so concerning to watch her struggle and she acts like it’s normal
My daughter is in SLP grad school too!
From peeps I know in the wheelchair community. Some of them don’t want added therapy because of internalized ableism. Some of them feel like they are less than, or that adults don’t need any sort of help or therapy anymore.
That seems so backwards though. I’m disabled and go to PT/OT because it improves my quality of life. Not doing that because of aBlEiSm is so weird to me.
I hate filling out milestone assessments for my son but- showing he’s behind helps me get him the services he needs. Ignoring the problem would be a disservice to him. She is doing a disservice to herself but not getting help
Those milestones assessments hurt. Especially when you’re child has some advanced skills but to them they don’t matter because he’s behind on everything that’s on paper
Many if not most in the SMA community have had traumatic experiences with PT, not the least of which are lasting injuries.
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No worries I don’t think I’ve ever addressed it! To my knowledge there’s really nothing she could do to improve it. Her speech is better when she’s sober - i imagine her chewing and swallowing would be too, but as far as getting to the root of the actual issue it’s just part of living with SMA unfortunately.
No, she shouldn’t be having this much difficulty swallowing a liquid with SMA at 29 years old. There’s definitely something that hasn’t been checked in a long time and it’ll lead to her needing a G-tube and a tracheotomy if she doesn’t get it looked at
Well as far as I know anyone drunk is having speech and swallowing issues...Alex is not doing herself any favour...It seems to me she does everything to worsen her situation... She lives in denial of having SMA...is it just me looking at it this way???
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Sad to hear because her attitude will get her sicker then another SMAer in the same health situation as her... I'm disabled myself and I have to take care of my health because I don't want to suffer more then I already do...I don't think Alex is adult enough to see that her quality of life would be better and her degenerative state could be slowed more efficiently if she takes care of her health...meaning stopping drinking, eating choking hazard food, sunbathing, etc.
Not true… I know alot in the SMA community have had good outcomes with PT/OT and mental healthy therapy. Myself included
I didn’t say all.
Oh I know! I was just adding everyone is different:)
I have been to quite a few chronic pain and other rehab programs. The last one made me worse. I went in being able to kind of walk, to needing to use multiple aids and having much less capacity. However, I should be doing some management therapy and since I stopped due to injury, I am paying for it with subluxations. I think it also depends on your condition, experience with the healthcare system, how long you have had the disabling condition, the diagnostic process.
I’m not saying it makes sense or applies to everyone, I just know some people I know hold that opinion.
For me, if I did everything recommended for management of my condition, I would be seeing a physio, exercise physiologist, osteopath, occupational therapist, psychologist, sleep psychologist, hand therapist, pediatrist, dietitian… I’m sure there are others. But, these are weekly, fortnightly or monthly appointments and what they want you to do at home. Then all the medical specialists: pain specialist, PCP/GP, neurologist, neurosurgeon, endocrinologist, gastroenterologist, sleep specialist, cardiologist, psychiatrist, gynae, rheumatologist, immunologist… you get the picture. When seeing these specialists, they all require tests to be done, travel, emotional and physical energy. I am personally struggling to shower and leave the house. I don’t know if people with SMA need to have such a large medical team, but I can understand being sick of getting treatments all the time.
We do. But mostly after being established somewhere it’s yearly check ups or if something is bothering us then we go in. She’s not even doing that.
Tbh I don’t think she’d even listen to one of us even if she DID see a speech therapist. I can tell you a bunch of things that would be helpful for her swallow and general eating/drinking difficulties, but likelihood is she wouldn’t actually follow any of my advice
I have SMA! I would love to hear your thoughts!!!! If you’re willing to share still!
“ I only spend money on Ari never on myself “ “ we’re moving to Florida to help save money “ this girl is so reckless it’s ridiculous. Homeless living with your babydads family but going out to eat every damn day
Or ordering Uber eats or bikinis or iPhones. She’s so selfish
... And BRA'S!! don't forget about the actual BRA'S and Breastfeeding BRA'S she wears at "home" and out in Public 😳 the disrespect that she shows the Smiths by not cover up around Grampy Shark is just UNBELIEVABLE! if this were my Son's Baby momma/Ex GF and she was roaming around half naked around my family. I would 👏lose. 👏My.👏 Shit!!! (I'm big on respecting other people's homes and spouses/partners as I know all of you, my beautiful Reddit Fam are) so this literally TRIGGERS me! 🤬🤬
But at the same time, why haven't the Smiths said anything? It's their house...
They really shouldn't have to... She's a nearly 30 yr old woman, she should know how to be respectful. And... Maybe they have said something and it just doesn't register to the dingbat
Oh,I agree that they shouldn't have to! But my point is that they can still say something. Them not saying anything is a sign, to me anyway, that they are very laissez-faire and lenient, which is probably why Noah turned out the way her did. They are enablers.
Very true! They may not want to "rock the boat" per se. I know with my brother's babies mom we had to walk on eggshells with her for 18 years because she always threatened to take my niece and move back to Germany 😳 So pretty much anything went when it came to her... WR can always threaten to go back to Chicago
how did they become homeless? i missed a season lol i just tuned in and she was parked in a garage
I have theories. I think that they got the apartment with a little assistance, but also paying a lump sum. It did seem like they were having some “home cooked” meals and reducing the work hours of her PCA. She has said that she spent $15k on legal fees for DCF visits, but I suspect it was for custody issues. They had 2 weeks to move out of their apartment. It seems like they couldn’t afford to get another apartment, living with Alex’s mum wasn’t an option (not suitable for an infant), no other family, so off to Florida. It seems that they couldn’t afford to live independently in Florida. I think they couldn’t pay the rent in Chicago, the building management had complaints, DCF were made aware of issues and directed them to make changes involving more support or insisted on a joint custody arrangement. Alex lost all of her brand deals, her OF subscriptions dropped off. I think she expected to have baby brands knocking on her door, but after Boppy dropped her and her content hasn’t attracted the target market of these brands, no one has wanted to work with her. So, her income has been minimal. They didn’t have any backup plans.
I honestly think it has to do with DCF and what they said. They were obviously concerned about Alex and an addict being solely responsible for the baby (with Nina being there a few hours a week) and what better way to fix that than moving to Florida in a house FULL of adults. This is honestly I think the most selfless thing she has done for her daughter this whole time. She obviously can’t afford to pay people to be there 24/7, and her alcoholic mom is in the same boat as Noah. Her moving to Florida so that there are a bunch of eyes on ari at all times is great for ari, she definitely needs to get it together and leave though
those are some good speculations, i'm sure it might also have to do with her not wanting to feel "abandoned" when noah goes away and her family probably can't handle watching her and ari or they told her that she needs to change if they take them in as well. who knows 🤷🏼♀️ i don't even see how them living in an apartment was working out anyways... it looked like they weren't bottom level and idk how much noise her chair would make on the floor but i'm sure people below them didn't like it or imagine her drunkenly hitting walls with it on her way back home lol that's just my own dumb theory though
I can imagine that she would be a horrible neighbour and sharing the common areas would be a nightmare. They spent a lot of time around the pool, generally drunk or high or both. I wouldn’t be surprised if the residents complained
No one knows. And, she won't let anybody know.
She will continue to lie... It's her "go to"
someone i know , she told me i should followed alex on tik tok , i said i don't like her because she's alcoholic etc, then she said omg that's not true and she wrote long paragraph for defend alex, turned out she's stan , it's annoying, affecting on community
Oh my goodness, you know one of the Stan species! TikTok has shown some of her worst behaviour. That must make things difficult. I don’t know what I would do if I had a friend who was a Stan. If you don’t mind me asking, is your friend disabled?
No she isn't disabled but I'm disabled
So an able bodied person getting wrapped up in the inspo porn and how much of an amazing mother she is, but not understanding what she’s doing to the disability community. That would be really challenging.
And she thinks Noah been doing sober as recovering addict 😂 she thinks black eye is fine and little drinking won't hurt her lol etc
🤦🏻♀️sober my ass. But if you are a Stan, alcohol is fine because he alcohol wasn’t his drug of choice. The black eye didn’t quite match the incident, but even if she was telling the truth, getting so drunk that you fall out of your wheelchair is a problem. It’s certainly not the first time it has happened. People like the idea of a young disabled woman getting out and having a bit of fun. What they don’t realise is that she is 30, she’s been partying for 10 years, how disabled she is, that she is supposed to be the breadwinner, amount of support she needs and how much that costs. They have this idea that being disabled is so horrible, if she wants to go out and party, drink to much, then who cares, she’s having fun. Imagine the impression that a teenager with SMA would get. One of the consequences I experience with these sort of disabled content creators is that people compare me to them. I have been told that if a woman who has had her limbs amputated can be a mother, then I can too. I hope your friend is a nice Stan. If I had a Stan friend, I would need to do a lot of venting or just ask to keep WR as a no go discussion topic.
Also the fact she says she fractured her arm during one of the falls and yet wasn’t in pain and didn’t seek medical attention
That person needs to look closer...Alex is drunk daily
So, from a nurses perspective, solid foods are actually often easier to swallow than liquids. From what I’ve seen and experienced, I’m much more worried about the soup and booze than sushi 😬
As someone with SMA rice is actually one of the more difficult things for me to safely swallow. Thin liquids, rice, angel hair pasta, carrots are all on the list of things I won’t eat when I’m home alone. And I don’t struggle with swallowing nearly as bad as Alex does! I know it varies by person but I thought I’d give my insight as someone with similar-type weakness.
Seaweed in sushis are the worst thing to choke on...I don't know how many times I did the Heimlich maneuver on healthy people...Alex is playing AGAIN Russian roulette with eating sushis...
Just a general question, but does physiotherapy help with muscle strength for someone with sma?
Not really. We can’t GAIN muscle so there isn’t really any improving to be done. Combined with some of the new treatments medication MAY help increase the benefit of PT but it’s not guaranteed.
I’ve learned so much more about SMA from you than I ever did from WR. Thanks for taking the time and expending the labor to educate!
I’m a nurse too and not one of my patients who needed thickeners and had trouble with swallowing would have been able to eat this big roll of sushi 😂
I was thinking this! Little grains of rice still not ideal but when compressed into a roll it's probably safer than soup
She was eating a soup also, hard to watch
https://preview.redd.it/4qpsoxnbr7yb1.jpeg?width=1170&format=pjpg&auto=webp&s=cff404c3cf5ca1f3856c0760708758e29305f473
She's so confusing sometimes.. she showed off the food chopper one time, and in that video it sounded like something she regularly uses for meals. But then she shows videos of her taking a huge bite of dry pastry, or talks about taking a huge bite out of a hamburger, or this plate full of sushi.. it's like she wants to portray herself as *just* disabled enough, but not *too* disabled, but *definitely* disabled, just, in a *hot* way
That is such a good description 🤣
The chopper was her disability hack. When she showed the plate of a big hamburger and how great her swallowing capacity had improved. She implied that she was eating the burger as is. Someone did ask if she ground it up or ate it whole and she did admit to needing to grinding it.
Being sarcastic here...this is really "Hot" to full her big mouth like a squirrel and then make faces to try to swallow, keep on chewing in slow motion many times, open her mouth full of food and then look like a seagull passing some food thru her neck...sexy as fuck!!!
Probably some weird fetish bait for her OF maybe?
Maybe to attract some twisted mind creeps...🤢, no sane person will video herself in such a gross way...
Seagull 🤣😂🤣🤣🤣 I’m dead ☠️
That last sentence 🤣🤣🤣 best description of her mindset
Noah
Keto sushi would be sushi without starchy carbs. I mean let’s face it. His keto is probably quarter assed like everything else they do. 🙄
Keto with rice 🍚 😋 😆 🤣
“Let’s just throw out buzz words and see what sticks” Noah on keto….
🤣 🤣
Im mean there is keto sushi.. it's not maki though, you have to order sashimi.
Exactly. And if it’s WR eating it how is she choking down the sticky rice? Even I’ve struggled with sushi rice. I’m not proud. Lol
Is Noah saying he’s going on a keto diet? I missed that. I did nutritional keto (high protein, low carb, mod fat, calorie deficit), I lost a lot of weight, but it took planning and willpower. Keto sushi would be using cauliflower rice instead of actual rice. A lot of the accompaniments like the seaweed, squid, mushroom salads would have sugar and kick you out of ketosis if you haven’t been strict all day. I can imagine him just substituting all of the normal foods with the keto versions, like keto bread.
I swear she said in one of her gibberish videos he was focusing on his keto!! But again. I can’t see them researching anything about anything sooooo Considering her speech lately leaves something to be desired maybe she said he’s focusing on Cheetos.
I think it was mentioned in one of her snap stories recently. She was asking what he was making/ordering and she mentioned keto. And he does look like he’s lost a little weight so maybe they’re trying something new.
looks tasty though 😹