My name is Shaun Kalpakoff, I am 39 and living with ALS for 4 years and am nearly paralyzed. I type with my eyes, ask me anything!

How many words per minute can you type that way?

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

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

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

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

lol. are you... you?

My brain says yes, my body tells me no

I just did a trial run, 15 wpm!

I've never measued, maybe I should!

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

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?

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

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

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

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

I am excited for neuralink, eyegaze is tiring

How’s your son holding up?

Ashton is kicking ass, I am so proud of him

What were some of the more noticable symptoms at first?

Thanks so much for doing this.

dropfoot

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

just got to stay busy.

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.

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

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

2016 when I developed drop foot

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

thanks, other than minor constipation this week has been good

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

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

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

initial symptoms of muscle spasms

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?

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

What show do you enjoy streaming most?

sports

Why aren’t you responding?

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

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?

Becker is a trailblazer

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

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

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!

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

My mum recently got diagnosed. Stay stong!

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

watching my son grow up with compassion

How did you find out you had ALS?

three separate neurologists

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

hell yeah, I am happy

What is your greatest comfort?

Loved ones

Are you optimistic about any new treatment options becoming available?

Anyway, blessings to you and your family.

stem cells are exciting

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.

I use a tobii dynavox i16

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

Hello.

What's you prefer animal?

dogs

What are your views on stem cell therapy?

exciting stuff

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?

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

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?

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

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!

speech therapist

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

permobil f5, not yet!

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

family, and I have daily caregivers

What do you do for fun?

fantasy spors

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

tobii dynavox

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

yes, and lipsurf

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

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

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?

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

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.

absolutely, personal relationships change dramatically

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.

yes, Jodi is a great friend

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

being a good dad

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).

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

What would the title of your autobiography be?

the man who never lost hope

Are you Russian Molokan?

yes

how much do you pay for health care?

more than you'd think