Comments: 163 • Responses: 49 • Date: 2021-03-19 00:07:07 UTCsource
WhirlyTwirlyMustache123 karma2021-03-19 00:31:01 UTC
How many words per minute can you type that way?
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sussinmysussness139 karma2021-03-19 02:08:53 UTC
2 hours and no replies. i feel like it might take him a while to type
rush7142 karma2021-03-19 04:29:16 UTC
It was my mom's birthday, sorry for not responding sooner
sussinmysussness4 karma2021-03-19 05:19:31 UTC
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.
rush7141 karma2021-03-20 00:29:28 UTC
I didn't, the mods thought it wasn't really me
sussinmysussness2 karma2021-03-20 02:59:25 UTC
lol. are you... you?
rush7142 karma2021-03-20 19:30:33 UTC
My brain says yes, my body tells me no
rush7142 karma2021-03-19 21:18:15 UTC
I just did a trial run, 15 wpm!
rush7141 karma2021-03-19 04:28:06 UTC
I've never measued, maybe I should!
cocoabiscuits98 karma2021-03-19 00:54:15 UTC
rush7142 karma2021-03-19 04:31:49 UTC
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 karma2021-03-19 01:50:47 UTC
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 karma2021-03-19 04:35:29 UTC
Thanks, appreciate the kind words. I haven't tried hbo max, how many streams do we really need?
FlippiddyFoo32 karma2021-03-19 00:24:51 UTC
Hey Shaun. Are you on a ventilator? And if so being conscious, how does that feel? I hope I’m not being insensitive
rush7142 karma2021-03-19 04:36:38 UTC
yes I am, feels normal to me. Air is good stuff
belleapocalypse26 karma2021-03-19 00:45:20 UTC
What kind of accessibility do you wish technology had, or what could it do better for you?
rush7144 karma2021-03-19 04:37:49 UTC
I am excited for neuralink, eyegaze is tiring
CalypsoTheKitty19 karma2021-03-19 00:30:20 UTC
How’s your son holding up?
rush7143 karma2021-03-19 04:38:56 UTC
Ashton is kicking ass, I am so proud of him
Xzenergy18 karma2021-03-19 01:35:49 UTC
What were some of the more noticable symptoms at first?
Thanks so much for doing this.
rush7142 karma2021-03-19 04:39:24 UTC
Ditchingwork15 karma2021-03-19 01:10:56 UTC
How do you mentally cope with this disease,
Are you doing ok?
rush7141 karma2021-03-19 04:40:27 UTC
just got to stay busy.
Niev15 karma2021-03-19 02:01:17 UTC
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 karma2021-03-19 19:09:07 UTC
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 karma2021-03-19 01:24:18 UTC
You’re awesome for doing this! When did you first think something might be wrong?
rush7142 karma2021-03-19 19:10:21 UTC
2016 when I developed drop foot
tonoocala10 karma2021-03-19 00:21:51 UTC
Stay strong Shaun! How have you been doing this week? I hope all is well!
rush7141 karma2021-03-19 19:23:03 UTC
thanks, other than minor constipation this week has been good
TsT224410 karma2021-03-19 01:07:16 UTC
How do you feel about Death with dignity/assisted suicide?
rush7141 karma2021-03-19 19:19:21 UTC
if that is their desire, who am I to intervene?
suspect10810 karma2021-03-19 01:57:04 UTC
What were your initial symptoms? Did you ignore any you wish you hadn't?
rush7141 karma2021-03-19 19:11:00 UTC
initial symptoms of muscle spasms
Loop_stuntman8 karma2021-03-19 02:21:09 UTC
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 karma2021-03-19 19:13:20 UTC
while financial support is appreciated, joining the als battle by spreading awareness is key.
ChiefQuinby7 karma2021-03-19 00:56:06 UTC
What show do you enjoy streaming most?
rush7141 karma2021-03-19 19:23:41 UTC
Grandahl137 karma2021-03-19 02:16:13 UTC
Why aren’t you responding?
rush7141 karma2021-03-19 19:31:55 UTC
I was away from pc, I honestly didn't expect this overwhelming response
Squats4wigs5 karma2021-03-19 01:58:31 UTC
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 karma2021-03-19 19:14:08 UTC
Becker is a trailblazer
melloyello12155 karma2021-03-19 01:53:43 UTC
What is the biggest misunderstanding you hear others say about ALS?
rush7141 karma2021-03-19 19:15:24 UTC
that we don't understand or hear normally. Our brains are unaffected
FrauDoctorGirlfriend5 karma2021-03-19 02:27:32 UTC
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 karma2021-03-19 19:17:39 UTC
just get it done asap, I did. Message bank too
AllHailTheCATS4 karma2021-03-19 02:14:08 UTC
My mum recently got diagnosed. Stay stong!
What are your favorite things to do on a day to day basis?
rush7142 karma2021-03-19 19:16:23 UTC
watching my son grow up with compassion
Chispy4 karma2021-03-19 01:49:09 UTC
How did you find out you had ALS?
rush7141 karma2021-03-19 19:18:16 UTC
three separate neurologists
onesmilematters4 karma2021-03-19 01:13:31 UTC
Are there still moments of happiness, in whatever shape or form they may come?
rush7142 karma2021-03-19 19:24:19 UTC
hell yeah, I am happy
lootenantdank3 karma2021-03-19 02:11:41 UTC
What is your greatest comfort?
rush7143 karma2021-03-19 19:21:36 UTC
hvgotcodes3 karma2021-03-19 01:49:57 UTC
Are you optimistic about any new treatment options becoming available?
Anyway, blessings to you and your family.
rush7142 karma2021-03-19 19:25:29 UTC
stem cells are exciting
walkinghumanad3 karma2021-03-19 01:50:37 UTC
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 karma2021-03-19 19:21:06 UTC
I use a tobii dynavox i16
autisticlettuce3 karma2021-03-19 01:19:38 UTC
rush7141 karma2021-03-19 19:20:23 UTC
90% are sporadic, 10% genetic. Mine is sporadic
yagami413 karma2021-03-19 01:47:27 UTC
What's you prefer animal?
rush7143 karma2021-03-19 19:24:45 UTC
Red-71342 karma2021-03-19 02:54:56 UTC
What are your views on stem cell therapy?
rush7141 karma2021-03-19 19:30:38 UTC
oxanar2 karma2021-03-19 02:21:36 UTC
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 karma2021-03-19 19:29:26 UTC
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 karma2021-03-19 02:20:31 UTC
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 karma2021-03-19 19:27:02 UTC
I think in the near future this will be common. I am excited for neuralink
GLaDOs182 karma2021-03-19 02:22:14 UTC
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 karma2021-03-19 19:30:05 UTC
AquaticMartian1 karma2021-03-19 02:53:23 UTC
What chair are you rocking? Have you gotten the ability drive (eye gaze) with it?
rush7141 karma2021-03-19 19:42:20 UTC
permobil f5, not yet!
Phiko731 karma2021-03-19 02:53:48 UTC
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 karma2021-03-19 19:43:13 UTC
family, and I have daily caregivers
TheMostIllegal1 karma2021-03-19 02:12:09 UTC
What do you do for fun?
rush7141 karma2021-03-19 19:35:25 UTC
SilvermistInc1 karma2021-03-19 02:24:06 UTC
How the fuck are you typing with your eyes. Also how do you scroll and click stuff??
rush7141 karma2021-03-19 19:36:26 UTC
onepageone1 karma2021-03-19 02:25:04 UTC
Have you tried Dragon naturally speaking? Have you ever tried smart enough if you're able to do minor movements with dwell clicker?
rush7141 karma2021-03-19 19:37:35 UTC
yes, and lipsurf
gainking1 karma2021-03-19 02:27:04 UTC
Does your username correlate to the greatest band of all time? I was named after their drummer!
rush7142 karma2021-03-19 19:39:06 UTC
haha no, I am Russian and my area code is 714
Nanogines991 karma2021-03-19 02:29:14 UTC
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 karma2021-03-19 19:40:25 UTC
I still can hold him accountable, that goes a long way
Marshmallowfluffer1 karma2021-03-19 02:34:51 UTC
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 karma2021-03-19 19:41:16 UTC
absolutely, personal relationships change dramatically
timbrelyn1 karma2021-03-19 03:13:08 UTC
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 karma2021-03-19 19:44:09 UTC
yes, Jodi is a great friend
fbritt51 karma2021-03-19 02:48:25 UTC
What is your greatest accomplishment in life up to this point?
rush7142 karma2021-03-19 19:32:50 UTC
being a good dad
caithatesyou21 karma2021-03-19 07:32:56 UTC
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 karma2021-03-19 19:45:48 UTC
people focus on stupid shit. Time is the most important commodity
Duffman7981 karma2021-03-19 01:55:28 UTC
What would the title of your autobiography be?
rush7141 karma2021-03-19 19:34:44 UTC
the man who never lost hope
Divinewiener-2 karma2021-03-19 02:50:32 UTC
Are you Russian Molokan?
rush7141 karma2021-03-19 19:46:21 UTC
theRealLotzz-4 karma2021-03-19 02:07:20 UTC
how much do you pay for health care?
rush7141 karma2021-03-19 19:33:54 UTC
more than you'd think
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