Mike Harrington @Shankapotomas Twitter profile

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Mike Harrington

4 years

My daughter saw me struggling with my disease today. I try my best to be as "normal" as I can be, but ALS is relentless. Then I see that she left me this note... I don't know what I did to deserve this kid, but I'm glad she's here.

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Mike Harrington

@Shankapotomas

4 years

Tonight at bedtime my 6 year old was reading to me. He asked for help reading "Merlin", and my ALS voice just couldn't get it out. I got frustrated... but he grabbed my hand and said "I love you daddy. Take your time." He's why I keep fighting. Not today, ALS. Not today.

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Mike Harrington

@Shankapotomas

2 years

ALS has made me: A lawyer who can't speak. A writer who can't hold a pen. A golfer who can't swing a club (not that I ever did it well, but still). I'm going to die from this. But I can die fighting or I can let it take. You bet your ass I'm gonna fight. #endALS

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Mike Harrington

@Shankapotomas

2 years

I can't wear my wedding ring anymore. My hands are too weak to slide it over my knuckle, and swelling makes it painful to leave on. Everyone can see the big things ALS takes, but the little things can hurt just as much.

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Mike Harrington

@Shankapotomas

3 years

Just threw my hat in the ring for a promotion at work. ALS and my failing voice had scared me away from doing it in the past, but fuck that; I'm all in. Not today, ALS!

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Mike Harrington

@Shankapotomas

1 month

My son is such a gentle soul... He overhead my wife and I discussing my ALS, and hours later pulled me aside, with tears in his eyes, to tell me that I'm a great dad and I'm as capable as any healthy person. Kids are amazing.

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Mike Harrington

@Shankapotomas

2 years

My 10th (10th!) father's day with ALS. My wife was pregnant when I was diagnosed, and I had no idea how many of these I'd get. I don't know why I'm luckier than most with this disease, but I know enough to cherish every moment with these two goofballs 😂

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Mike Harrington

@Shankapotomas

1 year

I've never met them, but I feel like I know them. My kids are the same age as theirs, and they're a family losing a dad to ALS, just like mine inevitably will. I'm fucking gutted right now. Please keep the Snows in your thoughts.

Kelsie Snow

@kelsieswrites

1 year

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Mike Harrington

@Shankapotomas

3 years

I heard the voice mail greeting on my phone today, back from before my voice changed. I've heard my old voice before, but this just hit me HARD. I had a good cry, mumbled some swears, and I'm ready to get back up and fight. #fuckALS

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Mike Harrington

@Shankapotomas

3 years

Caught a glimpse of myself in the mirror, and my first thought was "who's that guy?" ALS has changed me physically and mentally, but I truly think some of it's for the better. Not today, ALS.

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Mike Harrington

@Shankapotomas

3 years

I cut my own fingernails today. For a normal guy? No big deal. For a guy entering year 10 of ALS? A small, but meaningful victory.

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Mike Harrington

@Shankapotomas

2 years

One finger. For years I've relied my right index finger for typing, reaching, grabbing... the last one with any real function. Now I can feel it fading as well. ALS is relentless. I wish I had nurown or Amylix so I could do more than sit and wait to lose it all.

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Mike Harrington

@Shankapotomas

1 year

My son asked me to come into the backyard and practice soccer with him. All I can really do is stand in goal and flail a bit (lest I fall), but I did it. Afterwards he hugged me and said "you make me so happy." You don't have to be perfect. You just have to be there. #endALS

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Mike Harrington

@Shankapotomas

2 years

My 5th grade daughter wants me to chaperone her field trip. Easy for a healthy dad, but hard for a dad who can't really speak. It'd break her heart if I don't go... I kind of have to, right?

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Mike Harrington

@Shankapotomas

3 years

I have ALS. ALS does not have me. @MNFH2728 @sabrevaya @sandymorris333 @bsw5020 @Mayuri_Saxena , thank you for helping me keep my head up and eyes on the prize.

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Mike Harrington

@Shankapotomas

3 years

How do you tell your 9 year old daughter you're dying? She knows it's called ALS, and knows I'm sick & getting worse. She knows I can't get better. I just held her as she cried, sad for me because I can't speak how I used to, or do things I want. Sad because she can't help me.

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Mike Harrington

@Shankapotomas

3 years

I woke up this morning still in awe of what our ALS community has accomplished. I sent my 5th grader off on the bus with real hope and belief that I'll be here for her HS graduation. Thank you @bsw5020 , @sabrevaya , @iamalsorg and our amazing legislators who made this happen! 🎉🎉

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Mike Harrington

@Shankapotomas

4 years

Covid sucks. But it made working from home mandatory. It allowed me, a dad living with ALS, the chance to spend a spring and summer with my kids where I got to see them all day long, and be there for moments like this. Now let's cure ALS so I can be here for more.

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Mike Harrington

@Shankapotomas

2 years

Six days. 103,264 steps. Zero falls (but some stumbles). Dozens of new memories. Not this week, ALS; we made magic.

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Mike Harrington

@Shankapotomas

2 years

The sadness of ALS can really sneak up on you. I was buying stocking stuffers today but the store had no bags, forcing me to try and carry/transfer tiny items with hands that don't really open anymore. This sent my mind to the fact that I can't even help wrap gifts. ALS sucks.

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Mike Harrington

@Shankapotomas

3 years

10 years ago today I walked out of a neurologists’ office on the 2nd floor of a bank, with a diagnosis that would change my life. ALS. I called my wife at work and she rushed home from Manhattan, 9 weeks pregnant. We wept; for me, for our future, and for our unborn child. 1/6

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Mike Harrington

@Shankapotomas

2 years

I'm obviously on team #NotTodayALS 😂 Please donate to and keep me and @bsw5020 around for 42 more birthdays!!!

Brian Wallach

@bsw5020

2 years

In 7 days I turn 42. I never thought I would be here still when I was diagnosed. I want 1 thing for this B-day in addition to a kiss from Sandra: to bring in new amazing people to this fight. To do that we have created a competition. The rules are simple:

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Mike Harrington

@Shankapotomas

2 years

8 year old: "I'm strong just like my mom" Me: "what about me?" Tilts his head, puts his hand on my shoulder, "don't worry dad, you'll get there." 😂😂 I'm trying, buddy. And I've got a whole team behind me with @bsw5020 , @sabrevaya , and @iamalsorg .

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Mike Harrington

@Shankapotomas

2 years

ALS has become the norm in our house. But sometimes the emotions creep out. Tonight my son cried as he said "why you? Anybody but you." He turns 8 tomorrow. He's never known me without ALS. Slowing this disease means EVERYTHING to us. #everypointmatters to keep me around.

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Mike Harrington

@Shankapotomas

3 years

So long as I’m walking, rolling, or just breathing, I’ll be fighting. Thank you @bsw5020 , @sabrevaya , and @iamalsorg for lighting a fire under my ass! WE. WILL. WIN. 6/6

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Mike Harrington

@Shankapotomas

2 years

Every once in a while, ALS smacks you in the head. Playing the role of ALS today, my garage floor 🤕

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Mike Harrington

@Shankapotomas

2 years

She left me this note this morning (Putnam Park is the trip). I'm definitely going 😁 Thank you everyone!

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Mike Harrington

@Shankapotomas

3 years

I did all I could to avoid a work call today, but I had to be on. Tried to avoid speaking, but had to. ALS and nerves made me unintelligible. After that they just acted like I wasn't even there. I like the say "not today, ALS", but today you kinda got me.

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Mike Harrington

@Shankapotomas

3 years

I cried as I watched @bsw5020 and @sabrevaya deliver remarks to Congress. I cried because their fight is my fight, because I felt Brian's frustration in being unable to speak for himself, and because I recognized Sandra's love and compassion as the same I see from my Michelle.

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Mike Harrington

@Shankapotomas

3 years

It's my 42nd birthday. 10th since my ALS diagnosis. This year I'd like to see ACT for ALS become law, and for expanded access to clinical trials become the norm for people with terminal illnesses. And also a large pie from Sally's Apizza in New Haven 😜

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Mike Harrington

@Shankapotomas

3 months

It took me a few days to work up the courage to watch. Because his story is my story, and it's a sad one. But it's also uplifting and inspiring. It will make you cry and smile; feel despair and hope. I'll run (well, stumble) through a wall for you @bsw5020 and @sabrevaya .

Brian Wallach

@bsw5020

3 months

Today the world can watch a film that has been called “the best movie I have seen in 30 years.” For Love & Life: No Ordinary Campaign is now streaming on @PrimeVideo . After you watch the documentary, please review it on the Amazon page for the film.

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Mike Harrington

@Shankapotomas

2 years

What a great day... First dose of Relyvrio, belly laughs with my son at fart jokes, and my tween daughter actually wanted to hang out with me. Not today, ALS.

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Mike Harrington

@Shankapotomas

11 months

I feel like it was clear after the studies that Nurown was not helpful for those whose ALS was far progressed, but potentially MIRACULOUS for those of us with more functional. That should be enough. Helping 10% of us retain 10% function should be enough.

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Mike Harrington

@Shankapotomas

2 years

Who says we can't do shots? Happy New Year all!

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Mike Harrington

@Shankapotomas

3 years

Inked and official. NOT TODAY, ALS. Not any day. #teamNotToday

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Mike Harrington

@Shankapotomas

4 years

Just a regular day, beer in hand, IV in chest. How about we all work together and get rid of this ALS thing? @iamalsorg #endALS

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Mike Harrington

@Shankapotomas

3 years

It's really hard some days to put on a happy face with the guillotine of ALS hanging over your head. Really. Fucking. Hard.

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Mike Harrington

@Shankapotomas

3 years

You know what could help me? Nurown. Amylyx. The fda. Dr. Woodcock. I've been fighting ALS for 10 years. I'm too "old" for trials. I'm tired. I need HELP.

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Mike Harrington

@Shankapotomas

3 years

But two days ago I walked to the 400 section of Yankee Stadium, on my own, to celebrate the first Lou Gehrig Day with 25 friends and family, as well as hundreds of pALS and cALS. 5/6

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Mike Harrington

@Shankapotomas

2 years

To find one person who "gets it" when it comes to ALS is a blessing; to be in a room with 400 was amazing. Thank you @ALSTDI for hosting the #WhiteCoatAffair . I was truly overwhelmed by the love, support, and dedication to ending this disease. I can't wait until next year!

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Mike Harrington

@Shankapotomas

3 years

I have @iamalsorg and @bsw5020 on my side. It's the first time I really feel like an org has had my back, so thank you. @alsassociation , you could learn something.

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Mike Harrington

@Shankapotomas

3 years

Good night for a great cause!!! #LouGehrigDay #iamals

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Mike Harrington

@Shankapotomas

3 years

ALS has taken my ability to throw a ball; my fingers ju aren't strong enough. Then I got this amazing gadget, and my pup and I have never been happier 😁 Sometimes the little things make the biggest difference! #ThankfulThursday

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Mike Harrington

@Shankapotomas

3 years

I buttoned my own jeans today. I try to stay away from "hard pants" as much as possible (thank you @kelsieswrites & @ChrisSnowCGY for that amazing term), but I think it was a nice little victory 😁

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Mike Harrington

@Shankapotomas

3 years

So, I got pulled over for coming out a little hot when making a left turn onto a busy-ish road, and I'm pretty sure my ALS voice got me out of a ticket. Silver lining? 😂 (disclaimer: still totally able to drive)

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Mike Harrington

@Shankapotomas

2 years

When you have ALS, 50% of your energy (at least) is dedicated just to dealing with ALS. I feel like trying to cram being a husband, father, friend, lawyer, and advocate into the remaining 50% is a good way to let a lot of people down.

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Mike Harrington

@Shankapotomas

4 years

The Nurown news hit me hard... But after laying in bed with my wife and kids, and laughing like a crazy person as I was smothered in puppy kisses, I'm back on my feet and ready to fight. @iamalsorg , I'm all in. Not today, ALS.

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Mike Harrington

@Shankapotomas

3 years

Please sign this petition! It may save my life.

I AM ALS

@iamalsorg

3 years

People living with ALS deserve access to safe and effective treatments. ASAP. We are calling on @BrainStormCell and @US_FDA to work together to urgently move NurOwn, a promising treatment, through the regulatory process. Join us and sign this petition:

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Mike Harrington

@Shankapotomas

3 years

Tonight my son spent 10 minutes describing to me the difference between "cuddles" and "snuggles", complete with demonstrations. Sometimes kids know just how to lift you up. Not today, ALS.

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Mike Harrington

@Shankapotomas

2 years

So, we got a bidet. My impatient 7 year old son stares at the nozzle and cranks it to 11. He gets BLASTED in the face. He's freaking out, I'm doubled over from laughter... It took a good 5 mins to convince him that the water wasn't "poop water" 😂

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Mike Harrington

@Shankapotomas

4 years

When I was diagnosed with ALS (at 31) the doc told me and my wife that having kids wouldn't be a great idea. She was ten weeks pregnant at the time. Now we have 2 beautiful kids, and I'm still fighting like hell. Thank you @iamalsorg and @bsw5020 !

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Mike Harrington

@Shankapotomas

3 years

So, I got new jeans with velcro/magnetic closures. Game changer for getting dressed, but I'm lucky I'm not single. Nothing sexier for a girl than hearing the rip of velcro the first time you're together....

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Mike Harrington

@Shankapotomas

3 years

I used to dream about playing LF for the @RedSox . Now I dream about being able to speak clearly. @iamalsorg and @bsw5020 have brought the second dream closer to reality with #ACTforALS ... Let's get through the Senate and on to @POTUS !!!

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Mike Harrington

@Shankapotomas

3 years

My heart is exploding with happiness. This is real change and real hope. WE did this. Patients, caregivers, and advocates. Congratulations and thank you to everyone involved!!!

Brian Wallach

@bsw5020

3 years

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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Mike Harrington

@Shankapotomas

4 years

@bsw5020 Hellloooo! I'm 41, and I have ALS. I slur-sing Ariana Grande, and embarrass the hell out of my daughter. ALS will not define how I live.

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Mike Harrington

@Shankapotomas

11 months

So, my manager asked the question "what are your future goals, 2-4 years down the line?" How do you answer this as someone with ALS? Hopefully able to walk?

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Mike Harrington

@Shankapotomas

3 years

My son's gonna be 7 next week, and I'm realizing that he probably has no memory of my real voice. All he knows is the slurring, garbled mess that ALS has left me with. Of all that the disease takes, the voice might be the cruelest.

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Mike Harrington

@Shankapotomas

1 year

So, this lifelong sox fan got to throw out the first pitch at Fenway today.... 🤯 Thank you @RedSox for letting me live a dream! Now on to the next dream; ending ALS. #iaa4lou #LouGehrigDay

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Mike Harrington

@Shankapotomas

5 years

@ShortDoor @kendraaaleighh Crystal math

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Mike Harrington

@Shankapotomas

3 years

Your good deed for the day: please click the link below to contact your representative. Over the past few months 2 very promising drugs have been stonewalledd by the FDA... We just want a chance to explain why they're mistaken.

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Mike Harrington

@Shankapotomas

2 years

Lunch margaritas with my ❤️

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Mike Harrington

@Shankapotomas

3 years

We lived cautiously, but we LIVED. Simultaneously drafting our wills and trying for another baby (he’s nearly 7 :-) ). We bought a house. We’ve tried to live as normally as possible, despite ALS. 3/6

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Mike Harrington

@Shankapotomas

4 years

When I made this video I could still speak clearly, and could lift that bucket over my head. That little girl is 9 now. Where did the IBC $$$ go? In just a few years @bsw5020 & @iamalsorg have gotten legislation passed and QUADRUPLED DoD funding. You guys have changed the game.

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Mike Harrington

@Shankapotomas

3 years

But the next day we pulled ourselves together and carried on. I ran in the 5K I planned on. We prepared for our daughter, and welcomed her right at the end of the year. 2/6

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Mike Harrington

@Shankapotomas

4 years

Started the day singing "Do you wanna have a bagel?" to the tune of Frozen's "Do you wanna build a snowman?" with my son, and ended it laughing with my daughter as I said goodnight. Not today, ALS.

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Mike Harrington

@Shankapotomas

3 years

Today, I sat outside at my son's soccer game and soaked in the late autumn sun. I felt a chill in my hands and a cold breeze on my face. I watched my son laugh and play, and make this awesome save 😁. Not today, ALS.

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Mike Harrington

@Shankapotomas

3 years

I’ve mostly lost the ability to speak, and I can’t open my hands. Eating is hard; drinking is harder. Muscle cramps wake me up in the middle of the night. 4/6

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Mike Harrington

@Shankapotomas

4 years

This excites me... It takes a lot when it comes to ALS developments, and this one gives me hope that I'll get my hands back to be able to toss a baseball with my kids.

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Mike Harrington

@Shankapotomas

3 years

Please watch Sandra and Brian's testimony here. Just don't forget tissues 🥲

Congressional Hearing with the FDA

Brian Wallach and Sandra Abrevaya testified before Congress during the House Energy and Commerce Health Subcommittee hearing on "The path forward: advancing ...

www.youtube.com

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Mike Harrington

@Shankapotomas

2 years

ALS has taken my career; as a lawyer with a "normal voice" (+4) to "intelligible with repeating" (+2) - and that's on a good day. @US_FDA , 1 point lower and my voice is essentially gone. This is why #everypointmatters

Nicole Cimbura

@nicolecimbura

2 years

Dear @US_FDA when pushing the decision for the safe & effective @AmylyxPharma did you consider celebration dinners? One can easily move from occasional choking (3pt) to nothing by mouth (0pt) on ALSFRS-R score missing out on a savory meal with those who matter. #everypointmatters

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Mike Harrington

@Shankapotomas

4 years

The ALS Association is politely watching me die. @iamalsorg is fighting like hell for me so I can live.

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Mike Harrington

@Shankapotomas

3 years

Back in the office today... nerve wracking, but felt good. Didn't help that my hands were too weak to re-button my pants, so I spent half the day "open for business" 😂😂

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Mike Harrington

@Shankapotomas

2 years

Nurown!!! Fuck yeah!!! Thank you for shooting your shot, @BrainstormCell and @Cylebo .

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Mike Harrington

@Shankapotomas

3 years

We had an amazing meeting today with @SenBlumenthal re: ACT for ALS. I truly felt heard, and I believe he'll be a passionate advocate for us and will help get us across the finish line. Thank you @LorriCav for making it happen!

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Mike Harrington

@Shankapotomas

4 years

This is amazing. Thank you ⁦ @iamalsorg ⁩!

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Mike Harrington

@Shankapotomas

2 years

Field trip day!!!😬

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Mike Harrington

@Shankapotomas

3 years

We now have all of Connecticut on board for Act for ALS! Thank you @RepJahanaHayes @jahimes @JoeCourtneyCT and @JohnLarsonCT for cosponsoring and thank you @rosadelauro for your tireless advocacy. Senators @ChrisMurphyCT and @SenBlumenthal , you're next!

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Mike Harrington

@Shankapotomas

4 years

It might be how I die, but it will not define how I live. We're coming for you, ALS.

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Mike Harrington

@Shankapotomas

1 year

@LibbyMbc It's such a brutal punch in the gut. I was diagnosed 3 years after we got married, 2 months after we found out she was pregnant. It's not fair to us or our spouse. We just have to hope we married a good one. (I did 😁)

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Mike Harrington

@Shankapotomas

9 months

As someone living with ALS it's easy to get caught up in what I'm dealing with personally, and lose sight of the toll it takes on those around me, especially my wife @MNFH2728 . She is a true force of nature and puts an insane amount on her shoulders. This post hits home.

Sandra Abrevaya

@sabrevaya

9 months

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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Mike Harrington

@Shankapotomas

1 year

We're hanging on by a thread, but we're HANGING ON. Every extra day we get is precious. For ppl early in the disease, it's more healthy, mobile days. For those later, it's more days with our loved ones. But make no mistake, every day matters.

Sandra Abrevaya

@sabrevaya

1 year

. @US_FDA this is a 4 page story on ALS in today’s print issue of @people , read by millions. “This is a disease where families know what the natural conclusion is without the intervention of therapies," says Abrevaya. 1/3 via @people @misskph

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Mike Harrington

@Shankapotomas

4 years

@bsw5020 I want our kids standing together when they say this, then immediately being embarrassed by us

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Mike Harrington

@Shankapotomas

3 years

We don't need perfect. We just need a chance.

Brian Wallach

@bsw5020

3 years

“Please do not let another generation of ALS patients die in pursuit of the perfect. Please let this be the first to survive.” Please share, illuminate and activate. Thank you for doing something amazing today. #grateful

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Mike Harrington

@Shankapotomas

3 years

. @Starbucks was out of the sandwich I ordered via mobile, so I had to talk (my nightmare). The barista was so patient and kind, and helped me choose a substitute. I wish I got her name! It's all about kindness, folks.

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Mike Harrington

@Shankapotomas

2 years

I'm insanely bummed I wasn't able to make it to the game for Lou Gehrig Day... Mother nature threw a wrench in our plans. But thank you the pals, cals, and advocates who made it amazing!

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Mike Harrington

@Shankapotomas

3 years

@middlechildtake I just wish it didn't have to happen at all.

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Mike Harrington

@Shankapotomas

10 months

When I woke up my 11 year old daughter this morning she gave me a big hug and said "i love you so much daddy". Then she shook off the grogginess and went right back to the tween side-eye and sigh treatment. But I'll take what I can get!

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Mike Harrington

@Shankapotomas

1 year

I'm in such a weird place mentally. For the first time with this disease, I'm truly feeling limited. I need help all the time, and I'm saying no to opportunities I'd jump at in the past. trying to figure out my role with these new limits. As a husband, father, friend...

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Mike Harrington

@Shankapotomas

4 years

41... Not the same milestone birthday as last year, but every birthday with ALS is kind of a milestone, isn't it? Cheers to one more year, from me and my munchkin 😁

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Mike Harrington

@Shankapotomas

4 years

Sandy Hook happened in a town 30 minutes away from me. To this day, nothing has shaken me more. Not even my ALS diagnosis. Hold your little ones extra tight tonight.

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Mike Harrington

@Shankapotomas

3 years

By the end I was filled with hope. With the real feeling that we'd finally not only made a dent, but broken through. Thank you @RepAnnaEshoo and the entire committee for your compassion. @US_FDA , I hope you're listening.

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Mike Harrington

@Shankapotomas

3 years

Thank you @CoryBooker for cosponsoring #ACTforALS !!! You're helping me and other ALS patients access treatment that may save our lives. @SenatorMenendez , please be the next to sponsor #S1813 !

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Mike Harrington

@Shankapotomas

3 years

I found out today that my infusion nurse, who accesses my port in what's supposed to be a sterile procedure, is not vaccinated. You gotta be kidding me.

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Mike Harrington

@Shankapotomas

4 years

So, it looks like @US_FDA shot down Nurown. An ALS treatment with real results for patients early in the disease, or with slow progression. Why?!? Why must the treatment help X number of people, when it can change the lives of some now? I want to fucking live!

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Mike Harrington

@Shankapotomas

3 years

I don't know if she still believes in Santa Claus or if she's just playing along, but watching my 10 year old put out milk and cookies for him (and veggies for the reindeer) is friggin adorable.

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Mike Harrington

@Shankapotomas

4 years

My daughter: "Dad, I like laying on your arm. When it twitches it's like a head massage." Kids, man. 😂😂

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Mike Harrington

@Shankapotomas

3 years

You guys are amazing 😊 Thank you for the kind replies! I promise you, tomorrow I will kick ALS' ass 💪🏻

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Mike Harrington

@Shankapotomas

3 years

I just renewed my Connecticut driver's license for another 8 years, and thought to myself "will this be the last one I ever get?" It's the sad reality of living with ALS. @SenBlumenthal and @ChrisMurphyCT , you have the power to change this. Please endorse ACT for ALS.

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Mike Harrington

@Shankapotomas

3 years

There's a scene in Tombstone where Wyatt asks Doc (who has TB) how he is. His response: "I'm dying. How are you?" Living with ALS, I think about this a lot. Just wish it wasn't so applicable to me.

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