Comments: 163 • Responses: 49  • Date: 

WhirlyTwirlyMustache123 karma

How many words per minute can you type that way?

sussinmysussness139 karma

2 hours and no replies. i feel like it might take him a while to type

rush7142 karma

It was my mom's birthday, sorry for not responding sooner

sussinmysussness4 karma

don't be silly man, i meant nothing by it. just a friendly reddit joke.

say happy bday to your ma for me 😁

just saw you deleted the post? why? i was interested in reading.

take care

rush7141 karma

I didn't, the mods thought it wasn't really me

sussinmysussness2 karma

lol. are you... you?

rush7142 karma

My brain says yes, my body tells me no

rush7142 karma

I just did a trial run, 15 wpm!

rush7141 karma

I've never measued, maybe I should!

cocoabiscuits98 karma


rush7142 karma

Hello, sorry to hear about your wife. I have a strong support system in place. This disease moves quick, but I am hanging in.

GibsonJ4550 karma

Lost my grandmother to ALS. She was quite a bit older than you when she was diagnosed.

I was about 13 or 14 when she came to visit us. One memory that sticks with me after all of these years is the absolute fits of laughter she would get in when I couldn't understand what she was trying to say. Like, she would bust a gut laughing at my guesses. I have always been perplexed at how she could find everything so funny and find so much light in everything, but that stuck with me all these years. I'm in my 40s now and I will never forget her spirit.

No questions for you bro, just sending some love from a stranger across the miles and internet divide.

No wait, I do have a question. Are you a Batman fan? Snyderverse Justice League came out today, should I bother with the HBO max subscription?

rush7141 karma

Thanks, appreciate the kind words. I haven't tried hbo max, how many streams do we really need?

FlippiddyFoo32 karma

Hey Shaun. Are you on a ventilator? And if so being conscious, how does that feel? I hope I’m not being insensitive

rush7142 karma

yes I am, feels normal to me. Air is good stuff

belleapocalypse26 karma

What kind of accessibility do you wish technology had, or what could it do better for you?

rush7144 karma

I am excited for neuralink, eyegaze is tiring

CalypsoTheKitty19 karma

How’s your son holding up?

rush7143 karma

Ashton is kicking ass, I am so proud of him

Xzenergy18 karma

What were some of the more noticable symptoms at first?

Thanks so much for doing this.

rush7142 karma


Ditchingwork15 karma

How do you mentally cope with this disease, Are you doing ok?

rush7141 karma

just got to stay busy.

Niev15 karma

Hey Shaun, i'm working on a brain machine interface device for my undergraduate thesis, and would love to hear any ideas you have that could improve your life. Like, what troubles you in everyday life that most people take for granted?

It's still a work in progress, but i'm trying to create something that detects a few patterns quickly and reliably enough to create a contextual control scheme, kind of how 4 arrow keys in a remote controller allow you to select anything with letters and numbers.

rush7141 karma

Technology is so advanced these days, eyegaze pc enables us to do so much. My hands hardly function, so our eyes currently keep us independent. If you can read my mind, that would be a game changer

Jer-e-my12 karma

You’re awesome for doing this! When did you first think something might be wrong?

rush7142 karma

2016 when I developed drop foot

tonoocala10 karma

Stay strong Shaun! How have you been doing this week? I hope all is well!

rush7141 karma

thanks, other than minor constipation this week has been good

TsT224410 karma

How do you feel about Death with dignity/assisted suicide?

rush7141 karma

if that is their desire, who am I to intervene?

suspect10810 karma

What were your initial symptoms? Did you ignore any you wish you hadn't?

rush7141 karma

initial symptoms of muscle spasms

Loop_stuntman8 karma

How can we support you? I'd love to help or do anything to get your story further out into the masses. I lost my sister 5 years ago this Sunday and though she didn't have ALS, she had breast cancer, your two stories parallel each other in many inspiring (and heartbreaking) ways. How can we make a difference in your life and your son's life?

rush7142 karma

while financial support is appreciated, joining the als battle by spreading awareness is key.

ChiefQuinby7 karma

What show do you enjoy streaming most?

rush7141 karma


Grandahl137 karma

Why aren’t you responding?

rush7141 karma

I was away from pc, I honestly didn't expect this overwhelming response

Squats4wigs5 karma

Hi Shaun thanks for doing this. Do you have any hobbies, either new or ones you've kept since before ALS diagnosis?

Have you heard of Jason Becker, a guitar virtuoso living with ALS and still composing music?

rush7142 karma

Becker is a trailblazer

melloyello12155 karma

What is the biggest misunderstanding you hear others say about ALS?

rush7141 karma

that we don't understand or hear normally. Our brains are unaffected

FrauDoctorGirlfriend5 karma

Do you have any advice for a speech therapist who tries to encourage people to voice bank if they are diagnosed early enough? I haven't found anything I can say that helps people understand what is going to happen and what a comfort their own voice on an AAC device could be!

rush7141 karma

just get it done asap, I did. Message bank too

AllHailTheCATS4 karma

My mum recently got diagnosed. Stay stong!

What are your favorite things to do on a day to day basis?

rush7142 karma

watching my son grow up with compassion

Chispy4 karma

How did you find out you had ALS?

rush7141 karma

three separate neurologists

onesmilematters4 karma

Are there still moments of happiness, in whatever shape or form they may come?

rush7142 karma

hell yeah, I am happy

lootenantdank3 karma

What is your greatest comfort?

rush7143 karma

Loved ones

hvgotcodes3 karma

Are you optimistic about any new treatment options becoming available?

Anyway, blessings to you and your family.

rush7142 karma

stem cells are exciting

walkinghumanad3 karma

Hi Shaun. I just want to say that you and your son are an inspiration to so many people. My question is about your communication system. Do you use the same speech program as Stephen Hawking? Thank you so much.

rush7141 karma

I use a tobii dynavox i16

autisticlettuce3 karma


rush7141 karma

90% are sporadic, 10% genetic. Mine is sporadic

yagami413 karma


What's you prefer animal?

rush7143 karma


Red-71342 karma

What are your views on stem cell therapy?

rush7141 karma

exciting stuff

oxanar2 karma

Hi Shaun. A good friend of mine died a few years back from ALS. Krispy Kreme dude. Simple search will tell you all you need to know. I saw at what point he decided it was time. I know to the untrained this is going to sound callous but I’ve seen your struggle first hand. At what point is your decision?

rush7141 karma

honestly I don't know. As long as my brain and eyes function I can still have a meaningful life filled with purpose

Lord_GuineaPig2 karma

What do you think of the currental advancements in VR and Brain Neural Interfaces? Have you contacted anyone to explore these options as a means of simulating locomotion?

I recently saw a video of someone playing mine craft entirely with a modified headset and have seen a few commercial options. He walked and interacted entirely with his mind. From the description it was difficult but do able. I imagine with practice things like this could become extremely useful to someone like you?

rush7141 karma

I think in the near future this will be common. I am excited for neuralink

GLaDOs182 karma

Hi! I am in the ophthalmology field as a tech. Was this technology introduced to you by your ophthalmologist? What kind of testing was needed to calibrate your equipment to work specifically for your eyes? Thank you!

rush7141 karma

speech therapist

AquaticMartian1 karma

What chair are you rocking? Have you gotten the ability drive (eye gaze) with it?

rush7141 karma

permobil f5, not yet!

Phiko731 karma

Besides your son, who else is around to provide assistance? I wish you the best, my friend and I hope for nothing but happiness and love in your life

rush7142 karma

family, and I have daily caregivers

TheMostIllegal1 karma

What do you do for fun?

rush7141 karma

fantasy spors

SilvermistInc1 karma

How the fuck are you typing with your eyes. Also how do you scroll and click stuff??

rush7141 karma

tobii dynavox

onepageone1 karma

Have you tried Dragon naturally speaking? Have you ever tried smart enough if you're able to do minor movements with dwell clicker?

rush7141 karma

yes, and lipsurf

gainking1 karma

Does your username correlate to the greatest band of all time? I was named after their drummer!

rush7142 karma

haha no, I am Russian and my area code is 714

Nanogines991 karma

This might be a bit out of context but whats a bit of advice you give to your 12 year old when you might not be able to help him in everything?

rush7142 karma

I still can hold him accountable, that goes a long way

Marshmallowfluffer1 karma

Did ALS ruin any relationships for you? It’s so unfair you have to go through this :( I hope you have a good support system.

rush7141 karma

absolutely, personal relationships change dramatically

timbrelyn1 karma

Have you heard about hopelovescompany.com? It is the only non-profit in the US that supports children who have a family member with ALS. Founded by an ALS family all services are free.

rush7142 karma

yes, Jodi is a great friend

fbritt51 karma

What is your greatest accomplishment in life up to this point?

rush7142 karma

being a good dad

caithatesyou21 karma

That's awesome that you communicate with that given your prognosis. I guess I would ask, what truths have you learned about the world, given your current state? (Not Stephen hawking shit, just your observations).

rush7141 karma

people focus on stupid shit. Time is the most important commodity

Duffman7981 karma

What would the title of your autobiography be?

rush7141 karma

the man who never lost hope

Divinewiener-2 karma

Are you Russian Molokan?

rush7141 karma


theRealLotzz-4 karma

how much do you pay for health care?

rush7141 karma

more than you'd think