Angelina Fanous
@NotSoVanilla
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Tweeting under the influence of butter & #ALS .
Joined June 2009
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When I’m in horrendous pain from spasms in my esophagus, I can’t help but hold out hope that the next bizarre ALS spasm will be in my clit.
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Fonda Margarita was one of my favorite meals in Mexico City, a
@Bourdain
recommendation. RIP, you’ll always be my guiding North Star of great food in my travels.
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happy anniversary to the day a random guy walked by me in front of a 7-eleven in greenpoint and said, "nice toes baby," completely ignoring my red, puffy, sopping eyes. i'd been told earlier that i have ALS.
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When I’m in horrendous pain from spasms in my esophagus, I can’t help but hold out hope that the next bizarre ALS spasm will be in my clit.
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You fucking tell them,
@AdyBarkan
. ALS patients are out here doing revolutionary work for the good of EVERYONE.
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trump's presidency is proof how little Americans care about people with disabilities.
400k american lives lost in ten months because we tolerated this 👇
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my legs are now so stiff that i gasp in pain when anything even comes in contact with my skin, but please go on and tell me how als is a painless disease
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I was always picked last in gym class and now I'm dying of a disease made famous by athletes, because the universe is that fucking funny.
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my issue is not that I'm dying but that I am condemned to die in such a cruel way. we should all be outraged by the cruelty of ALS.
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i took a small dose of lsd a couple of days ago and i could talk and move with more ease, and even stand up straight against a wall--something i haven't been able to do in 18 months. too bad i don't know a researcher with the balls to give a bunch of ALS patients acid.
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If there was ever a test to determine who is worthy of citizenship, I’d say walking a few thousand miles on foot to get to the United States is a pretty good one.
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Only opinion that matters on
@PPact
should be from the most cited, most respected medical journal in the world,
@NEJM
http://t.co/Pe6YcMNUlV
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letting my freak flag fly on the national mall for ALS awareness month
photo by
@MaryKayTurner1
flag by
@iamalsorg
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been in the ALS game for eight years and i still don't know how i ended up here
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meet my mini sheepadoodle: her name is besboosa (egyptian dessert) & she's the biggest mush, all she ever wants to do is snuggle and be with her person. she's going to make an excellent service dog🐕🦺
a big thank you to my friend
@florida_mitch
who brought me the perfect dog 💚
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I became a quadriplegic to inspire all of you
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guess who immediately stopped playing and sat down under my wheelchair when she heard my voice and saw me on the grass for the first time!
my dopamine levels are spiked, my brain is flooded with serotonin, and i have a much deeper understanding of the term puppy love
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eight years ago today, i walked into an ALS clinic for the first time
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I haven’t been online bc I’ve been hiking, zip lining, and crossing a hanging bridge in the Sierra Norte mountains in Oaxaca, Mexico. I never thought I’d be doing these things after five years of ALS but
@wheeltheworld
helped make that possible. Photos & videos by
@enmathes090
💕
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i shouldn't have to pay taxes because ALS already taxes my body, mind, and soul on the daily
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This a video of a fast-progressing ALS patient after three injections of
@BrainstormCell
’s NurOwn.
How can clinicians see this kind of improvement and not immediately terminate this trial and offer the treatment to all participants. It’s unethical for this trial to continue.
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scroll, scroll, scroll your thumb, gently down the screen,
merrily, merrily, merrily, likes are what I need.
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in the 10 years since i first walked into an als clinic, i haven't witnessed anything like the momentum
@bsw5020
&
@sabrevaya
brought to the fight against this cruel disease. have some tissues ready & watch their story here:
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sometimes I think, this is it, this is the last year I'll be alive, I've outlived ALS for seven years, I can't possibly last any longer, and other times I am convinced I've got another seven years of this and I need to buckle the fuck up.
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Once ALS is cured and I regain my motor skills, it’s over for you hoes.
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None of this would have happened without
@TeamGleason
. They planned everything for me and even stayed in touch afterward to ensure that I got the exact adventure I envisioned. Until a cure is found I really do believe that travel is the best medicine.
#nowhiteflags
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ICYMI the most important speech from the DNC
Took me 36 years to get a spot at the DNC. Took Willow only 9 months.
My
#DemConvention
speech.
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if i regained motor function, i don't know which i would do first to release my suppressed energy from all these years: dance party or beat the shit out of someone mma style
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the thing about ALS is that i could be an amoral heathen who spends my days running gift card scams, but people see a quadriplegic in a wheelchair, unable to speak or eat, and feel compelled to tell me how god loves me and im destined for a heavenly afterlife filled with riches
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when I was ziplining & tripping on acid in the costa rican rainforest with macey in jan, i never thought she'd pass 5 mons later. ALS stole my resilient & beloved friend, but at least she's finally free from her tormentor of the past 6 yrs. see you on the other side, mace
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why do they say ALS is a painless disease when my lower back is constantly on fire, my limbs jolt from what feel like shocks of electricity, my head tingles with the sensation of crawling lice, and when my stomach muscles suddenly tighten, it actually hurts to breathe.
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a belated shout out to momma fanous who spent her mother's day taking care of me on my fifth consecutive day with vertigo and then went out to buy herself a dairy queen ice cream cake. what a fucking legend!
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i feel lucky to have known ady even with ALS as the caveat to our friendship, because he was truly an exceptional human. what an immense loss for the world.
I'll see you on the other side, friend.
It’s with deep sadness that we announce the death of our co-founder and co-executive director,
@AdyBarkan
, at age 39 due to ALS-related complications.
Ady will continue to be at the heart of Be A Hero and what we do here for years to come.
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i cannot put into words the degree to which i miss wiping my own ass
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Iceland was majestic in ways I didn’t expect: the drinking water tastes like it was poured from a waterfall, the shower water drips with healing minerals from the ground that soothed my body aches, and the ground is vibrant with colors that rival Alice’s wonderland.
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i've been living with ALS for almost a decade and i feel like the past year has been the most exciting. act for als got funding so access to experimental treatment should become easier soon. we got two new drugs in the past 8 months,
@iamalsorg
and social media changed the game
@NotSoVanilla
Thank you. There have been many disappointments in research allotment, treatments, insurance and caregiver issues, +. What do you feel is the most hopeful or promising recent development(s) to benefit those impacted?
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goosebumps reading this. i applaud the efforts of
@iamalsorg
for aiding in this. ALS patients finally have an organization that properly advocates for treatments in bodies. you should be very proud
@bsw5020
and
@sabrevaya
We are thrilled to announce our intention to submit an NDA for AMX0035 for the treatment of
#ALS
to the U.S. FDA in the coming months. We will share any additional updates with the community as soon as we can.
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Being disabled is the most expensive habit. If we
#EndALS
I can pick up a cheaper one, like SoulCycle or heroin.
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I am 88 lbs and an xs t-shirt drapes over my body like a minidress. How do we make sure I don't get any skinnier?
So, here I am, once again, asking you to donate to an ALS fundraiser. buy this t-shirt from
@als_out
and 100% of the proceeds go to fund ALS research.
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nothing raises my blood pressure like newly diagnosed patients who fundraise for the utterly unworthy, money hog, status-quo-loving
@alsassociation
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@MikeLoychik
you're a tool. dr. acton is a hero who kept ohio safe. you should be ashamed of yourself.
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only
@danifinkelstein
knows how to capture my inner baddie
in santiago, chile nov 19, after trekking through torres del paine in chilean patagonia thanks to
@TeamGleason
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if ALS isn't the perfect villain origin story i don't know what is
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I'm glad my spirit doesn't have ALS, and during a pandemic I am still delusional enough to actively plan a trip halfway across the world to see Japanese snow monkeys and eat takoyaki.
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happy 10-yr anniv to when a man averted his eyes & mumbled, "u have upper motor neuron symptoms"
i knew that meant ALS & started sobbing.
trying to distract me, he asked, "so what's going on in the middle east?"
Stunned, i stopped crying, "it's falling apart—much like my body"
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my dad has taken a bigger role in my care as my mom's knee weakened and constantly throbs with pain, and he finishes every task with a smile and a self-rating on his own made-up scale, "seven stars!"
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I’ve been back from Chile for a month now and I still haven’t updated you all on my trip because I’ve been getting high, listening to my new cumbia records, and reminiscing with my Chilean friends over one of the best trips I’ve ever taken.
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I've had ALS for seven years now, diagnosed right at the height of the ice bucket challenge, but I've seen the most progress in the past two years, thanks to
@iamalsorg
and their sense of urgency.
give them your money instead of the useless behemoth
@alsassociation
The revolution strikes again! The
@DeptofDefense
budget will AGAIN double funding for ALS research, from $20M to $40M for FY2021.
In the last two years, federal spending on ALS research has gone up $75M. Take. That. IN! This is the ALS community. Relentless and loving it!
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My story begins like every other patient's story: I was fairly healthy, in good shape, and completely content with the life I was leading as a journalist living in Brooklyn, NY.
ALS can strike all ages, ethnicities and backgrounds. That includes young, active women. If you are a woman under 35 and living with
#ALS
share your story and help show the world that this disease can impact anyone.
#InHerALSShoes
#InternationalWomensDay
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i am finally doing something that i put off for 7 years: making funeral arrangements. but it's not as morbid or depressing as i thought it would be. it's actually kind of peaceful, having assurance of how my body will be put to rest.
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my sister and I got new matching tattoos, the eye of Ra and the eye of Horus with the wings of Isis the goddess of eternal life.
my last tattoo was in 2016, bc i thought my muscles would freak but with enough muscle relaxers, the twitching and involuntarily movement was minimal.
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while adam was working to make lou gehrig day a reality, i tweeted i didn't give a fuck about lou gehrig. but instead of arguing w/ me (like many did), he mailed me the official t-shirt bc that's how kind he was.
i wish more people were like adam. i miss him terribly. rip friend
We are deeply saddened by the passing of ALS warrior Adam Wilson.
Adam was a devoted
@Reds
fan and a vital member of the committee that helped create Lou Gehrig Day. We are forever grateful for his vision that resulted in this league-wide day of awareness. He was a shining light
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guys, i love
@TeamGleason
so damn much. they consistently go above and beyond to help me figure out technology and wheelchair problems. i can't thank them enough for enhancing my life with this disease.
#nowhiteflags
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cure ALS so i can go back to taking my health for granted
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we don't deserve
@SteveGleason
but i'm glad we have him
A speech that will touch people’s hearts for years to come ❤️
Steve Gleason delivered a memorable moment while accepting the Arthur Ashe Award for Courage at the 2024 ESPYS.
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Happiest of days to momma Fanous who spends all her days caring for and wiping my gimp ass. She cooks a different dish every single day, endures the smell of smoke so I can medicate with cannabis, and even steals my dad’s Bic lighters for me. I’d be lost without her 🌺💕🌻
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Wheelchairs aren’t meant to go some places—and that’s exactly where I took mine. After five days off-roading in the tough Icelandic terrain, I’m convinced I can take my wheelchair anywhere.
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thank you to everyone who made calls and wrote emails to pass this important bill. for the first time in a very long time, i'm hopeful.
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ALS isn’t rare. It has a diagnosis rate similar to MS, but because it kills its victims so quickly, few are living with it and it’s considered rare.
Are there any other diseases like this?
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big day for ALS patients and advocates! we've been screaming into the void for years that nurown works and the fda will now have the data that proves it. i can't wait to celebrate with all of you when it's finally approved!
Today, we are pleased to share an important development in our efforts to deliver hope for those living with
#ALS
. We owe it to them to do everything in our power to provide access to promising therapies as quickly as possible because they don’t have time to wait. 🧵
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the worst are the people who try to instruct me while i'm trying to walk, giving me useless tips like, "that's it, now bring forward your left foot," as if what's slowing me down is that i forgot walking involves putting one foot in front of the other.
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I used to cringe at my backfat in pictures; these days it’s more like my backbones and you cannot convince me that I’m not absolutely gorgeous in any picture I took when I was healthy. ALS stole a lot from me but it’s given me kinder eyes.
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i can still get myself off using one barely working finger on an arm that's 97% paralyzed, yet i have previously encountered multiple men with fully working limbs who couldn't do the same
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Five years later, I still can’t believe I was diagnosed with ALS.
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show me your ALS tattoo! or the ALS tattoo you want to get!
i'll start: i have a few tattoos, but i got this one with ALS in mind. it's a verb tense that describes a perfect future, where all your tasks are completed and done, e.g. in the future, we will have cured ALS
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Disabled people just want simple shit. I’m basically in tears over my new power wheelchair THAT FOLDS IN HALF AND FITS IN THE TRUNK OF A CAR, which means no more traveling in my manual wheelchair and a lot more autonomy on my trips. I’ll be testing it out in Chile next week.
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Most days I wake up with ALS I think to myself, not this shit again.
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ALS is a lot of waiting, waiting for my mom to feed me lunch, waiting on the toilet for my caregiver to hear my hushed voice from the other room, waiting for my muscles to stop spasming, waiting for my muscle relaxers to kick in, waiting to regain my strength to turn over in bed,
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notice my youngest nephew in the corner, apathetic to everything around him except for his ice cream
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since nurown is officially in front of the FDA, now is the time to lobby and advocate for its approval! write an email to janet woodcock et al and explain why they need to approve nurown now!
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what would an operation warp speed for ALS look like? Who would run it? How much would it cost? What are the hurdles standing in the way besides money?
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Well well well. If it isn’t the ableds who are just now getting a glimpse into the reality of millions of disabled Americans. Sucks to be confined doesn’t it? To have job opportunities vanish? To lose financial security through no fault of your own?
Welcome.
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everything is amplified with ALS, ive had a sore throat for the past two days and the way my body is reacting feels like im fighting stage 4 cancer
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y'know how neurologists say, "the patient is progressing," instead of "the patient is declining"? It's because they're talking about the disease, not the patient. That's what they see: vessels holding a disease they're studying.
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What are the best accounts of companies/organizations doing groundbreaking work in robotics so I can persuade (troll) them to build ALS patients robot arms?
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Year 1 w/ ALS: I advocate for the disease, raising money & writing about my diagnosis.
Year 2: I produce a documentary, reporting on ALS and the FDA’s inadequate drug approval process.
.
.
.
.
.
.
Year 5: “How many donuts can I eat to test the limits of my freakish metabolism?”
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seeking a sugar daddy who's seeking a mute, quadriplegic sugar baby. inquire within.
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It’s my birthday today. Big 3-4. Send stem cells and psychedelics.
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in the icu, they did everything to get me to cough up all the phlegm: aggressively patting my back, wrapping a vibrating vest around my chest, and even sticking a tube down my throat and into my windpipe to suction the mucus.
you know what actually worked? smoking cannabis
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I spoke some things into the universe, and
@TeamGleason
is making them come true.
This incredible organization is sponsoring my trip to Patagonia in November, and I couldn’t be more grateful. Here’s to exploring uncharted territory in a wheelchair
#nowhiteflags
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beyond heartbroken over the news of wissam dying after battling ALS for 7 yrs. in the doc, he travels to lebanon for an experimental treatment after running out of options in america. he always remained hopeful, even when our system didn't give him much to hope for. we failed him
Yesterday Wissam Majed died. Wissam was a subject in my and
@NotSoVanilla
’s doc on ALS, and the bureaucracy that keeps those diagnosed w the disease, for which there is no cure, from trying to save their own lives. We must do better.
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I recently bought myself a little treat, a clementine tree, and today a friend sent me a Meyer lemon tree. I'm so in love, and I'm one step closer to fulfilling my dream of living in a forest!
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do you have 30 seconds to sign this petition, so I can try some medicines that may save my life??
I said you motherfuckers don't spark joy, sign this and prove me wrong.
Today, more than 99% of ALS patients will die without the chance to access a promising therapy. It’s been this way for years.
Join us in letting Congress know it’s time to fix this broken system.
Sign the petition to pass
#ACTforALS
(H.R.7071) now.
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@MattWalshBlog
there are others in Puerto Rico who need help and would gladly accept it. why don't you raise funds for them? oh, unless, of course, your intentions had more to do with politics than with helping.
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My hushed, muttered ALS voice has become a secret language that I mostly use to talk shit about people who are just a few feet away yet can’t decipher what I’m saying.
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good day to the real g's who exist in the face of suffering and death yet somehow keep singing and dancing
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do you guys know how many times i made a wish at 11:11 for my ALS to reverse? starting to think that it doesn't actually work 🤔
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my caregiver just tested positive for Covid. she was unknowingly exposed last Sunday and started showing mild symptoms while she was here six days later & got tested as a precaution. She always wears a mask and is extra careful about washing her hands, so I'm still healthy.
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Today is special: ALS TDI announces its first drug is finally in clinical trials, enrolling both patients and healthy people. The drug is supposed to dramatically slow down the progression of the disease. Congrats to all involved but especially to patients.
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