Sandra Abrevaya
@sabrevaya
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Wife to @bsw5020 . Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure . Co-founder @iamalsorg . Executive Producer @noc_film . All in on curing ALS.
Chicago, IL
Joined August 2010
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The girls just got home, saw the chair lift and started shrieking with excitement “Dad is sleeping upstairs tonight!!!!!!”
I don’t think I’ve ever heard anything better. ❤️
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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Wearing my heart on my back. ALS you will be gone. Soon. Thank you for the birthday love friends, it was a great day ❤️❤️
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Last night I burst into tears when I saw that Brian posted this picture. There is so much grief in what has already been lost.
Before we fell asleep I told Brian how sad I was and he said, "don't be, I'm still here."
I am anchored by my husband's hope ❤️
Just a dad holding up one of his daughters. Something which I took for granted, but now never will.
Good night moon.
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This weekend was going to be my first girls trip in 2 years. Because of caregiver life, I cancelled. So my friends changed their tickets to come to see me for one night. We covid tested, snuggled and watched movies. It was all I needed.
I hope every caregiver has a love squad.
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I am just one of the forty million Americans who are caregivers at home on a daily basis. Every time you set up an IV bag in your pjs, help your partner sit up in bed, help them pick up pills they dropped on the floor... I am right there with you. You are not alone.
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I lifted his hand and put it on mine as I lay beside him and I put my head on his chest as our girls took in one of my favorite childhood movies, commenting loudly throughout. And at that moment I couldn't be more grateful that I asked for help and that I fought for this joy. ❤️
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If you read about a failed drug trial please get that this is what that news feels like to families dying from these diseases. We are the faces of grief and suffering behind those headlines.
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As I lay here with our 4 year old sleeping in my arms, I hear voices coming from downstairs. Brian’s old voice from videos that he’s playing for our 6 year old. When he could speak and joke and dad easily. When we were healthy. We really had it all.
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Today I put our groceries on our credit card because we have nothing left in savings or checking. 24-7 caregiving bankrupts families across the country. I am not sharing this for help, we will find a way through it. I just want the world to understand what ALS is.
#EndALS
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National Anthem when you can’t lift your hand. Caregivers can.
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The world is filled with all different types of love stories.
Happy Valentine’s Day
@bsw5020
. Love you. So much.
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Last night Brian was sick and I was scared to go to sleep because it’s so dangerous to throw up when you’re paralyzed.
Two of our amazing caregivers spent the night and barely slept so I could sleep without being in fear.
If that isn’t Christmas, I don’t know what is.
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My cousins planted this tree the year we were diagnosed. Today it’s blooming and I’m grateful that Brian is still alive to see another Spring.
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For two years Brian slept alone downstairs in a hospital bed because he could no longer walk upstairs. He missed all the bedtimes and I couldn't sleep with him because our young children sleep upstairs and need me. Last year I was done with the isolation and sadness of it. (1/4)
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Tonight, before we fell asleep, Brian and I talked about our problems - just like we used to nightly - before he lost the ability to walk upstairs. I've forgotten what a gift this ritual is and I feel so much lighter going to bed. It feels great to have my bestie back upstairs♥️
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Since
@bsw5020
has lost the ability to speak, tonight during dinner I sat quietly as he typed on his iPhone app that then speaks for him. When he finished he looked up with a grin as the robot voice yelled:
“This is fucking great sushi”
Have an awesome Saturday night friends.
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I refuse to grieve quietly. I am enraged for my dear dear friends
@ChrisSnowCGY
and
@kelsieswrites
and for what ALS has done to them.
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If you think your parenting days are over because you’re an empty nester… since ALS struck at 37, I have never needed my parents more and they are holding me in the palm of their hands.
Tonight, at 43, I texted them, “you are the best mommy and daddy in the universe.” ❤️❤️
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Our 7 year old just came back from her first day of second grade and said they were each asked what they want to be when they grow up and she said “caregiver”
I had so many thoughts sweep over me including… may she never see such hardship, and wow what a heart.
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Happy Father’s Day, Brian. This group kiss, initiated by these little girls, is one of a million ways they burst at the seams with love and adoration of you every day.
Thank you for fighting like hell to be here with all of us. We love you to the moon and back. ❤️
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Hey Bri,
8 years ago, I married someone loving, charming, and smart but I did not understand who you really are. I only know now that you are truly spectacular.
As ALS ravages your body, my heart and our family, I’ve never been prouder that I said yes.
Let’s keep going. ❤️
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Our four year old walked into my bedroom this morning and commanded, "Alexa, play Ella Fitzgerald jazz" and then turned to me and said "for you mommy"
Have a beautiful Friday ❤️
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Today I was able to step away from work for 15 minutes to draw with my four year old and she said, "The sun is shining, I'm drawing with my mom, it's the best day EVER, let's call it mother's day!" This is definitely
@bsw5020
's daughter and I couldn't be happier. ❤️
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When the head of the Steamboat Adaptive Ski program shows up in
@iamalsorg
gear!! Off to a great start
@bsw5020
!
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There are all sorts of slow dances. There are all sorts of love stories. Happy Valentine's Day ❤️❤️
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On the last day of National Family Caregivers Month, I want to share that being a caregiver has been the single hardest experience of my life.
It is incredibly painful, overwhelming and I often feel like with Brian's illness I have lost my own identity, my freedom, my own life.
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I am so happy to be cozy in my bed, with my fuzzy socks on and my husband sleeping by my side, still alive. I know what a gift this all is. ❤️
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This is Moon’s happy place. By Brian’s side.
I hate to admit it but you were…. “right” Brian Wallach, getting this crazy dog was a very good idea. Now back to regularly scheduled programming.
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After a death sentence
@bsw5020
built
@iamalsorg
with a community fighting for their lives that led to a $1 billion increase in government funding for ALS.
This is what today’s news from
@mackenziescott
felt like.
Change in the face of impossible odds.
#YieldGivingOpenCall
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The sheer number of hours each day Brian works and the massive complexity and challenges he continues to tackle so thoughtfully while being as sick as he is and continues to get sicker astounds me.
Yes, I love him. But maybe a surprise - I'm in fucking awe of my husband.
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When your terminally ill, almost totally paralyzed, 42 year old husband surprises you with women’s gummy daily vitamins.
Romance comes in all flavors.
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Today was a beautiful day. Our girls brought me coffee in bed, kicked my toosh in chess at 9am and secretly decorated the house. And my hot hubby winked at me.
I’m so thankful to be turning 43 today and so grateful to you all for being there for me. ❤️❤️
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When you try to take your five and seven year old girls and almost completely paralyzed husband on a ski trip.
#CaregiverPerspective
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When the tornado sirens go off and you really wish you had basement… Brian shoved under the stairs Wallach…
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He can barely speak anymore but he now he lays in that bed as our 6 and 8 year old girls read him the bedtime stories every night. Last night we all cuddled together and watched the Sound of Music. (3/4)
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Beautiful humans in every way
💔
Today we hugged Chris for the last time and said goodbye as he went to give four people the gift of life by donating his kidneys, liver and lungs. We are deeply broken and deeply proud. In life and in death, Chris never stopped giving. We walk forward with his light guiding us.
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Closed my eyes. Listened to this voice on repeat. And exhaled.
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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I’m very angry about how badly Brian is suffering and the incredible suffering of others. Very angry. I’m also very hopeful about what’s possible. And anger and hope together is fuel.
#EndALS
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My six year old and four year old girls are curled up asleep in my bed in their matching pajamas exhausted from being exuberant about everything in the world today.
I think I will let them sleep here tonight, as close to me as possible. It’s that kind of night in the world.
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Today I helped my husband swallow all 41 pills, administered his IV infusion, helped him brush his teeth, shower and put his breathing machine on before bed. Tonight I dream of a better world that I know is possible because THIS is a White House that has the power to end ALS.
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Thank you to everyone who understands I’m doing everything I can, trying as hard as I can and love me as I am. ❤️
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Tonight I had help for Brian, childcare for our girls... and I left the house. I hung out with my mom, dad and sister for hours, had wine and laughs. And man, did it feel great.
If you're a caregiver and there is any way to make this happen, I recommend it. Take care of you.
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I got my first hair cut in a year and a half, got a smoothie and the sun is shining. I’m freaking euphoric. ☀️
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If you have ALS and you can still stand, you stand up from your wheelchair when
@macklemore
plays.
If you’re a caregiver for someone living with ALS, you dance like hell out of respect for the gift that your body can still move.
We are still alive. Life is Glorious.
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I asked for help. With some financial support from friends, we reconstructed our stairs, put in a stair lift and brought Brian back upstairs. We got a split king adjustable bed so I could sleep by his side but he could still be comfortable. (2/4)
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I’m so sorry Seth and Erika. Thank you for fighting so beautifully, bravely and lovingly. 💔💔
There is a beginning and end to every story; this is the end of my story, but this is not goodbye; it is a see you later. In the end, it's not the years in your life that count. It's the life in your years. Friends and family, THANK YOU. Please continue my fight to
#EndALS
.
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It is so extraordinary to be able to do things that are ordinary. It just feels so dang good. ❤️
Just another mom and dad at their daughter’s swim meet.
Happy Sunday all.
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If you are a caregiver and you are up in the middle of the night, adjusting a breathing machine, helping them use the bathroom or repositioning them in bed, I'm up with you. It feels dark out but you are not alone.
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The loss of
@SethPoling10
‘s who fought ALS and the dire inequities of this country’s caregiving system has shaken so many of us. Through the fog of depression today, I pushed back, I put on music, I called a friend and I will get outside. If you are struggling today I see you.
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For the record,
@bsw5020
is almost completely paralyzed but he still runs circles around me strategically and intellectually - same as when I fell in love with him in 2008 ❤️
I should be used to this, but every time someone who knows me writes me off because of my disease progression, it still makes me mad and sad. Here’s to people not underestimating me.
Good night moon.
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This week I had an unfamiliar feeling pop up a few times, kind of electrical... and I realized it's happiness. I haven't had a taste of it in a long time. Can't say how nice it is to have it flicker back a bit for the moment. Forgot how good it feels. So grateful to be reminded.
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Getting my annual mammogram and ultrasound for my dense breasts cause caregivers need care.
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Locked upstairs with a covid positive four year old now but thinking back on an incredible week.
Have an awesome holiday weekend all ☀️☀️
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I won!!!!!!!!!!!! Thank you babe 😘😘
I want to thank all of you who voted for me to keep my facial hair, which of course was my preference.
The only problem was that there was one no vote that I could not ignore as she lives with me.
So you are looking at a man who shaved his facial hair. Happy wife, happy…
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A thread about inviting dying people to the party.
When you are dying, people often assume you can’t make a gathering because it’s too difficult to attend and so they don’t include you.
(1/4)
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Hey Bri, Your wife here. I woke up really low. You're still sleeping and I needed strength so I logged on to look for your goodnight moon. Your words and spirit are powerful for the rest of the universe and for the love of your life. Let's keep going, baby.
I am, let’s be honest, a random guy to most of you, living with and tweeting about a terrible disease. So take these words with a grain of salt: live, love, care, help well—not as a aspirational life goal or tomorrow, but today (as in right now).
Good night moon.
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I struggle a lot with my mental health. As a caregiver I have to be the light for everyone else in my family when the reality is so dark. I know I'm not alone in this work.
I feel lucky that caregivers feel comfortable reaching out when they are so low it gets scary (1/4)
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Third ALS drug approval in history. First new drug to be approved in the last five years.
So proud to be a part of this community that is driving real change.
Breaking news: The FDA has approved AMX0035!
@US_FDA
thank you for living up to your promise of regulatory flexibility for ALS. Stay tuned for updates on access to this treatment!
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I walk with grief, exhaustion and pain every day as a caregiver. But I also feel proud of this community of caregivers
@synapticure
trying to give entire families living with neurodegenerative diseases a chance to survive.
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Rest In Peace, Nicolas Toledo.
Disabled and in a wheelchair, there was no way to run. Our ALS community knows that all too well and I’m deeply sorry this country didn’t do better by you.
#HighlandPark
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For those who only know
@bsw5020
’s words on Twitter, I want you to knows his actions. Every day he lives these words with hours of writing with emaciated fingers that can barely type, hours of calls where he can barely speak - to do his part to end ALS. I fucking love my husband.
Never give up on trying to make this world better. Never ever ever ever.
Good night moon.
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If I am in an airport, airplane or other public place that requires masks and you are casually not wearing one, I will ask you to comply. If you object, I will raise my voice. I will fight to protect the people I love. They are all I have and I will not apologize for that fight.
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I plan to buy everything I ever need from Patagonia now. I hope they stock up on everything from tomatoes to patio furniture.
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Sometimes I get characterized as "angry" about what ALS families are stuck carrying the bag for.
I promise you all, I will continue to be unapologetically angry every single day of my life on behalf of ALS families everywhere until they are treated fairly.
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It’s Friday and I’m in love… with
@bsw5020
and the families with ALS fighting to change the system so they can live.
It was an absolute privilege and honor to testify on behalf of ALS families before Congress yesterday as we asked for the full $100 million for ACT for ALS.
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Ditto ❤️
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Tonight I increased my Zoloft dose to 150mg. If you’re struggling right now, more than ever, I am with you.
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A woman whose husband has ALS walks into a hospital waiting room, ends up chatting with a woman with lung cancer getting a port for chemo and a gentleman with multiple myeloma. They all talk for an hour.
The punch line? All we can do in this world is show up for one another ❤️
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So proud of the hard and impressive work of the coalition of
@iamalsorg
volunteers and others to push forward PPA for faster access to promising treatments. Proud to testify last week, to read Brian’s words on his behalf because ALS has taken his voice, along with so much else.💔
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And if they can make it, no one cherishes the joy of a gathering more than someone who understands how limited their time is.
Please. Invite the dying people to the party.
(4/4)
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Over a year ago, we stood before Congress making the "closing argument for our lives"
We knew
#NurOwn
worked then.
We know it works now.
@US_FDA
people with
#ALS
& their neurologists deserve an AdCom to present "clinically meaningful" evidence that
#NurOwnWorks
#NoAdComNoVoice
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Watching everyone around you die from ALS is like watching a car wreck in slow motion happen over and over again. This disease is hell on earth.
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Just a unicorn and a chicken, unsure where their children are but having a blast. 🎃
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Birthdays are pretty amazing. It’s a day where everyone showers you with love just because you’re alive. Fucking genius.
So happy to be 41 and so grateful for the love.
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I'm exhausted so I asked my 6 year old to put my 4 year old to bed and I would pay them a $3/$2 split - one for babysitting and one for cooperating. It's the worst or best idea I've ever had but I'm too tired to figure that out right now.
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Not that long ago. Just three summers. But so much has changed.
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When you turn your phone on after a work trip red eye flight and see this ❤️❤️❤️
Last night I had a bedtime date with my daughters. We all piled into my bed and then my daughters took turns reading to me. After that, we turned off the lights and snuggled until they were nearly asleep.
This was by far the best part of my day.
Good night moon.
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Sharing pillow talk (sorry
@bsw5020
)
"Hey Bri we're going to win/make it/not die, right right right???" to which my hubby says "No one has had a better chance to survive this disease than the people living with ALS today, so let's fight for it."
Let's fight for it.
@iamalsorg
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Sometimes you have to close your eyes, let go and just have faith that your world will still be standing in the morning.
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10 years ago there were 20 companies with ALS drugs in their pipeline.
Today there are over 160 companies with ALS drugs in their pipeline.
We're about to turn a corner with this disease. Pass it on.
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Something terrible is happening and I can take action. Both can be true.
I am always balancing what I need to accept and what I can change.
And for every family facing this, I see you and am sending you love. (3/3)
❤️
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As my hubby often reminds me: until further notice, celebrate everything.
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Spent the day at the hospital and reminded again that there are so many sick people who are suffering. And we’ve hidden them all in the hospitals. And no one else in the outside world has to think about them, see them or realize that reality. But it’s all still happening.
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What a beautiful and generous gift. Excited for all the good this will do ❤️
Hugh Hoffman wanted to help ensure more children don’t have to lose a parent to ALS. His historic $58 million gift will advance more clinical trials, expand clinic access, and provide some financial support for people living with ALS.
Learn more here:
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Patients took over. And everything changed.
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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If there is a single thing I can add to the universe coming out of this illness, it is to build something that helps caregivers.
It's simply not possible for caregivers to "take care of themselves" if there is no infrastructure to rely on.
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As a caregiver with a job and little kids, I rely on
@synapticure
to care for
@bsw5020
.
This week Brian had:
M: OT in our home
T: PT in our home
W: Telehealth w an ALS doctor
Th: Telehealth with a Speech Language Therapist
All organized by our Care Coordinator at
@synapticure
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Honored to have President Biden share our family's personal story and the story of this patient led movement.
Honored to walk with the bravest souls on earth in this fight to stay alive.
Let this be the first generation of ALS survivors.
#NeverGiveUp
President Biden signs the Accelerating Access to Critical Therapies for ALS Act into law.
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Our five year old this morning: How long has daddy had his ALS? Me: Three and a half years. Her response: So that’s why you want to get him better medicine so he can do everything he used to be able to do with us. Me: Yes. That’s all I want.
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