Brian Wallach
@bsw5020
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Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Illinois, USA
Joined December 2017
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Pinned Tweet
A few days ago, a special reader surprised me by reading a very special book.
Good night moon.
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If I get 1 viral tweet in life I hope this is it.
My wife married an athlete, who had limitless energy and was a true partner. Then came ALS and she had to dress, shower and care for me. She has borne these burdens with incredible courage and strength.
I love you
@sabrevaya
.
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My oldest daughter was 2 when I was diagnosed with ALS and given six months to live. One of the goals I set then was to be strong enough to hold her hand on the beach when she was 5.
She turned 5 this week. And today I held her hand on the beach.
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Made it! 42!!! And while ALS has changed a lot, I still think I look pretty darn good.🥳
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In my 30s I got married, had 2 daughters, worked in the White House and as a federal prosecutor, ran a 5:30 mile, was diagnosed with ALS and told I would die within a year.
I’m still here, still smiling and my 30s ends tomorrow. Cheers to this amazing thing we call life.
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I joined a gym today. Normally that is not news. But when a guy 2.5 years into his fight against ALS joins a gym because he sees true hope for our fight in 2020 and because he wants a front row seat to that revolution, that—that is worth a tweet.
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Turns out I can still clean up ok.
Not today ALS. Definitely not today.
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Tonight my 3 year old saw my pills on the table. She asked if she could help me take them and I said yes. She then picked them up, 1 by 1, placed them in my mouth, and waited for me to drink water and swallow. We did this 21 times. I fight ALS for her.
Good night moon.
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If I can vote while receiving an infusion and living with a currently terminal illness, what’s your excuse?
#VoteHopesNotFears
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My 5 year old’s friend asked her recently why her dad didn’t pick her up from school. She explained that I have ALS and it would take me forever to get there.
So today I surprised her and picked her up from school. Her reaction was e.v.e.r.y.t.h.i.n.g. (sound on).
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I have ALS, a currently fatal disease. I use a wheelchair to get around. I can barely speak.
And yet, I am beautiful. I am strong. My words have more power than ever before.
Good night moon.
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Yes I have ALS.
Yes it is currently 100% fatal.
But I am still very much alive.
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This pic is from 2017, about 5 months after my diagnosis with ALS.
Now, I look different. I wish like hell I still looked the same. I don’t.
I do, however, still have my amazing family and friends and am alive. I am grateful beyond words for those.
Good night moon.
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Each day I rise from my wheelchair with help and stand as tall and straight as I can for 3 minutes.
It’s my act of resistance and I will resist every day that I can.
Not today ALS. Not today.
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I got on a boat today. Many wouldn’t consider that tweet-worthy but 3.5 years into an ALS fight it was everything. It took 3 people to help me in, but my oldest fell asleep in my lap and I felt utterly at peace for the first time since my diagnosis. So, yes, that’s the tweet.
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A lot has changed, but if I can brag for a moment, I still look pretty darn good.
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I roll outside, my caregiver wraps me in a blanket and gives me a sip of coffee, and then I sit there breathing in and out, feeling so grateful to be alive for today.
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In 2017 a doctor diagnosed me with ALS and told me I would not see this day. Yet this morning I hugged my older daughter and sent her off for her first day of 1st Grade.
Not today ALS. Not. Today.
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Today I went out in my wheelchair on my own. No caregiver. Just me. First time in 1.5 years.
Everyone I drove past looked at me like I was lost. Which was ironic because I have not felt more found or free in years. Here’s to living.
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It takes 4 people to lift me onto a boat these days. That may sound crazy but there are no words to fully capture how incredible this moment is.
Good night moon.
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Completing 3 sets of 10 bicep curls of 3 pound weights may not seem tweet-worthy to most, but when you do it after living for 2.5 years with a terminal disease that destroys your muscles, it is everything.
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We don’t get dressed up much these days, but when we do I still think we can bring it.
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Five and a half years ago, a doctor diagnosed me with ALS. He also told me to expect to live six months. Today, I just typed this tweet.
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In 11 hours I turn 42.
Not today ALS. Definitely not today.
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Statistically, I am past my expiration date, but I am enjoying this life too much to worry about that.
Good night moon.
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Shave: check
Haircut: check
Huge smile: check
Stylish clothes: check
Awesome wheelchair: check
If I can brag for a second, I am looking damn good for a guy five years into ALS.
Rock your Saturday all.
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My younger daughter was 1 week old when I was diagnosed with ALS.
This week we celebrated her 5th birthday.
Not today ALS. Definitely not today.
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Tonight is a hard, hard night. I will probably be off Twitter for a few days. Tomorrow is a new day. The sun will rise and life will keep moving.
Good night moon.
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The chair lift is in. The wall mount is up. And tonight, for the first time in two years, I will see the second floor of our house.
Not today ALS. Not today.
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Tonight, on the 75th anniversary of the publication of Goodnight Moon, I and every other ALS patient get to go to bed with something that is really rare for us; real, tangible hope.
Good night moon.
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I have ALS, a currently 100% fatal disease. And yet each day I hold my head high with a resolve to fight. If I can do it, I know you can too.
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We don’t get dressed up often these days, but when we do we can still bring it.
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Last night I rose from my wheelchair with help, held on to a chair and danced for Macklemore’s entire set. Life with ALS ain’t easy but it still is awesome.
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Every night my caregiver helps me brush my teeth and then helps me into bed.
He then puts on my bipap.
Once I am settled he then turns off the lights and places his hand on mine and says, “Sleep well, Bri.”
It is a small thing but it means everything.
Good night moon.
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“You have gained 20 pounds in the last 7 months.” With those words smiles broke around the room.
You see ALS causes one to lose weight. And fast.
A year ago I was 135 pounds. Today I am 157 pounds. The exact same weight I was the day I was diagnosed.
Not today ALS. Not today.
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Many of us living with ALS count the time post-diagnosis in days as the disease moves so quickly.
Today for me was day 1,468. This makes me one of the truly lucky ones. I’m above ground and still standing.
Not today ALS. Not. Today.
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Today is my last day being 42. A lot has happened over the past year, but I am still here. And for that I am grateful.
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Today was a no good, terrible, awful day until about half an hour ago when my 6 year old asked if she could feed me my ice cream.
Good night moon.
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This may not seem like a big deal but I wrote this tweet by myself with my own hands.
Not today ALS. Not today.
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As someone living with and dying from ALS, I am grateful for every breath I take. That’s it. That’s the tweet.
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Tomorrow the FDA will announce if it has approved the third ever treatment for ALS.
Tonight I get to do homework with our 7 year old. I hope I will still be getting to do homework with her when she is 17.
Good night moon.
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Tonight during movie night, my 4 year old asked me to sit next to her. So with help,I climbed out of my wheelchair and onto the couch. She then snuggled up next to me and held my arm all night.
I know this is normal but for this guy with ALS it was everything.
Good night moon.
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Today was a normal day except for one thing: I went skiing.
Good night moon.
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Today, this guy with ALS worked 9 hours, did Pilates and rolled his immuno- and respiratorily- compromised self to get a vaccine shot. If I can do it, so can you. Get vaccinated. Help save my life. Thank you America.
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I am sitting outside in my wheelchair enjoying a beautiful fall day. I am grateful to have this moment.
Not today ALS. Not today.
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Tonight, thanks to John Costello and his amazing team, I played my synthetic voice for my family for the first time.
My daughters asked it was. My wife replied, that was the way daddy’s voice used to sound. I just listened and held back tears.
Good night moon.
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We travelled all day to be at my cousin’s wedding. When we got there she walked up to the car, said, “I can’t believe that you are really here," and burst into tears.
Never underestimate the power of showing up.
Good night moon.
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If I may f modesty for a moment, I think my wheelchair and I look damn good.
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My 5 year old walked confidently up to me and put a post it note on me.
I looked down at and then up at her and asked, what does it say?
She smiled and said, best dad.
Good night moon.
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This summer my ALS progressed to the point I could no longer go upstairs, meaning I could no longer tuck my daughters into bed. A part of me faded then. To replace it I began DJ’ing nightly dance parties for them. And sure enough my soul is singing again.
Good night moon.
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I am definitely biased, but I still think I look pretty handsome for a guy who has lived with ALS for six years.
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Today I slept in to noon. When I got up I put on my favorite shirt and sweatshirt, and rolled out for the day.
Life has ups and downs, but for today it feels good to feel good.
Not today ALS. Not today.
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This picture was taken today. That’s me in the middle with the voice amplifier mic sitting on a wheelchair. When I was diagnosed with ALS 4 years ago I was told to get ready to die. But here I am surrounded by my brothers watching the
@Cubs
on
#LouGehrigDay
. Very. Much. Alive.
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This guy just stood up for 6 minutes.
Not today, ALS. Definitely not today.
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Normally I wouldn’t tweet about an upcoming birthday but my wife turns 40 next week and I follow her next month. I was told 3 years ago that I would not see either of these birthdays. That ALS would claim my life. I’m still here. In fact, this is us today. So tweet I will.
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BREAKING NEWS:
#ACTforALS
has just passed the Senate and is on it’s way to
@POTUS
. Hope is real for ALS patients thanks to you. The impossible is possible.
#NeverGiveUp
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Typing with 2 fingers, trying to change the world.
Not today ALS. Not today.
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I am still very much alive.
Not today ALS. Definitely not today.
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I’ve been mostly off Twitter this week as it has been one of the most difficult weeks of my life. It has humbled me, seen me fall a lot and brought me face to face with who I am vs. who I want to be. It’s not been pretty but hopefully it is worth all the pain.
With hope,
Brian
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I am still standing and I plan to never give up.
Good night moon.
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I walked again today. Only this time I walked twice as far.
Not today ALS. Definitely not today.
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This is me.
At 36, I was a federal criminal prosecutor.
At 37, I was diagnosed with ALS and given 6 months to live.
I’m now 41, and have founded a mold-shattering non-profit,
@iamalsorg
, and a transformational telemedicine company,
@synapticure
.
So, yeah, never give up.
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Most days are really hard for people living with ALS. Really hard.
Thank you for taking a moment out of your night to send them love and strength. It won’t cure us but it will make us feel seen when too many feel alone.
Good night moon.
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Today, skied with my daughters.
5.5 years after my ALS diagnosis.
I do not have the right words to describe how beautiful today was.
Good night moon.
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If we stop and look around there are so many examples of resilience. People who despite the odds keep fighting.
Five years into fighting ALS every muscle in my body has changed. My humble act of resilience: keep doing this as long as I can.
#NeverGiveUp
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I know that as someone with ALS the historical odds of me beating this disease are zero.
But tonight as my 6 year old daughter cuddled beside me and my 4 year old daughter lay at my feet during family movie night, everything felt like it would be alright.
Good night moon.
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Tonight as my older daughter (she’s 7 now) was getting ready for bed, she gave me a kiss on my cheek and then whispered in my ear, “Love you, dad, and remember we get rid of your ALS day by day. See you tomorrow.”
Good night moon.
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This morning my wife came into the room to say she was going to have mommy time with our 6 year old.
I asked if everything was ok. She said our 6 year old was sad Santa didn’t bring her what she really wanted: for me to be healthy.
This is life with ALS.
This is why I fight.
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Tonight we sat on the back porch as a family. No phones except to play music. Our girls made bracelets and built legos. For a few hours the world disappeared and we were just a regular family. It was everything.
Good night moon.
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I can’t speak, can’t walk, can’t raise my arms but I can still fight for good. I call that proof that nothing is impossible.
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I just woke up—I made it. 41!!!!
As I typed that I paused to think back on my path to today. It has been a beautiful, messy path full of laughs, love and tears. Life is best when lived, whatever that means for you.
So let’s do that. Happy Saturday all. Love you❤️👊
This Saturday I turn 41. Honestly, I didn’t think I would be alive now when I was diagnosed with ALS in 2017.
I have 1 birthday wish: to bring 4,100 new donors into the ALS fight to help end it.
So, who is up for doing something amazing with me?
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My voice was really weak today which made me think about losing it completely. I know there is amazing technology to help me keep speaking but I am still afraid. Fuck ALS.
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Today, I walked. With a lot of help. I thought my days of walking were over, but they are far from over.
As my ALS progressed, I stopped going to PT because the travel was too much. When
@synapticure
and
@getlunacare
announced a partnership to bring PT to my home...
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I have been in bed the last 2 days thanks to ALS, but I laughed more in the last hour than in the last week. Just live.
Good night moon.
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This is me. I am a 42 year old father and husband living with a currently fatal disease, ALS.
I tweet about ALS, advocacy, changing the world and my life. My tweets have been called inspiring and raw.
I dare you to follow me. You won’t regret it.
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I am losing my ability to speak, yet my voice is growing stronger.
I am losing my ability to walk, yet my mind roams farther than ever.
All of our lives change as we grow older, yet our capacity to love grows ever greater.
Good night moon.
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This is me. On the one hand, I have ALS, I am disabled, my hands barely work and my voice is hard to hear.
On the other hand, I am irrepressibly optimistic, I still believe I will be one of the first generation to survive ALS, and I cannot wait to see my girls grow up.
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Happy Birthday to me!
I am 43.
I do not live in a tree
Or by the sea.
But today is a day I wasn’t sure I would see.
So today I am filled with glee.
Happy Birthday to me!
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This is a celebration photo. It took two people ten minutes to get me down the stairs and to the wall thanks to ALS. But there was never a question about whether I would make it. Nothing was going to take my chance to celebrate this moment with the one I love.
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Last night our older daughter asked if she could help me take my pills, get into bed and then sleep in the bed next to mine.
When she was 4 I could pick her up literally. Now that she is 7, she picks me up emotionally. I am so here for it.
Good night moon.
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In the last few weeks my fingers have gotten weaker. So every night my caregiver patiently types these tweets.
I am mad as hell about having ALS.
I am also grateful as hell to have amazing people around me.
Good night moon.
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She was 10 days old when I was diagnosed with ALS.
I held her tiny body and promised her I would fight.
She was 4.5 years old this week as she held my left hand, where my ALS started, and helped me walk into the ocean.
I looked into her eyes and promised her I would fight.
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My older daughter is 6 now. She was just 2 years old when I was diagnosed with ALS.
Back then I dreamed about being alive long enough to ski by her side.
My dream came true today.
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I am feeling under the weather tonight, but my older daughter asked me if I could teach her about coins so she could do her math homework.
Half an hour later she had learned everything from a guy with almost no voice. We are both on cloud 9.
Good night moon.
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Six years ago I was told to prepare to die.
This is the improbable, inspiring, love-filled, hope-filled, true story about the extraordinary campaign that happened next.
This is where you come in: please share this trailer with everyone so that we can bring hope to everyone.
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My head hurts from crying and my body aches everywhere, but my heart is full and that is everything.
Good night moon.
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ALS has affected every aspect of my life. And while it has made life much harder, it has not taken my life. For that I feel lucky and in love with each and every day (especially Friday’s).
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I went to a funeral for a great man today at which three beautiful eulogies were given. Two lines in particular resonated with me, and led to this Sunday night thread.
The first: life is not a straight line.
12 years ago this week, I turned 27. That week I was in New Hampshire.
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Why do I tweet?
Because I have a currently 100% fatal disease, ALS, that is trying to take me away from my daughters/wife at just 41 years old.
Because here, it doesn’t matter that ALS took my voice. I still have my words, can fight and help build a better world.
That is why.
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For the last 5 years my wife has suffered angst and loss as my ALS progressed.
On top of that she dealt with my manic drive which has pushed us to the point of breaking more times than I can count.
I love you and I am sorry.
Good night moon.
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I have spent most of the day here, on my own, surrounded by the rain.
It has been a sublime respite from the tempest that is life with ALS.
It may sound crazy but all i have thought about today is how lucky I am to be able to still do this.
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