Hi. My name is Tyler and I'm 23. August is the month of SMA awareness and I thought I'd do an AMA with nothing off limits. This condition only affects roughly 2 million people worldwide. I've got a sense of humor and I can sit here for a WHILE. If this somehow blows up, I will absolutely respond to every single question. Do your worst, Reddit.

My Proof: I can't quite PROVE that my heart stopped for the specified 6 minutes but I can surely show ya some of my hospital metabolic results from the day it happened. The second link is a news story about a fundraiser I had a while ago (which the youtubers Drift0r and Boogie2988 REALLY helped with), the update story, and a picture of that particular hospital stay with the anonymous benefactor visiting me...he brought the current and previous Ms. Nebraska because he could. Literally no other reason than to cheer me up and I apologize for this section being so long. I'd be doing an utter disservice to everyone who helped if I didn't, regardless of if they ever see this.

Metabolic panel... And Ms. Nebraska(s): https://imgur.com/a/rEkEBoB

Original Story: http://www.wowt.com/home/headlines/Young-Man-Hopes-for-Mobility-in-His-Future-277495811.html

Update: http://www.wowt.com/home/headlines/Teen-Gets-Surprise-From-Anonymous-Viewer-Who-Saw-WOWT-Story-286596241.html

Drift0r video: https://www.youtube.com/watch?v=GuRj9ZthylU&t=

I know that AMAs are supposed to be very unique, but I also really hope that this doesn't come off as a bragging post. As I started to type I just started to realize more and more about how blessed I've been despite the circumstances. AMA!

Edit: probably best to have a better starting point. Like the name implies, Spinal Muscular Atrophy affects your muscles. Biologically much different, but in reality it's a slower paced ALS. All voluntary muscles slowly deteriorate over time. The most important one being your diaphragm.

Edit 2:I should've went to bed hours ago but this was so damn fun. Please keep the questions coming while I sleep because I promise I'm replying to EVERYTHING

Comments: 916 • Responses: 67  • Date: 

Catflappy1072 karma

CPR is violent. Did they break your ribs? I mean it beats the alternative, but ouch.

Colonelwheel1281 karma

They DEFINITELY hurt like hell for 2 months or so though

Colonelwheel765 karma

That's actually a fascinating thing to me. My condition might have actually prevented that from happening. None broken. But I have low bone density so they were likely bending with the compressions

Anidhoggur807 karma

Are you sure it isn't lupus?

Colonelwheel1811 karma

IT'S NEVER LUPUS EXCEPT FOR THE ONE TIME THAT IT WAS LUPUS

Anidhoggur525 karma

He got the reference! Time to go home guys.

Colonelwheel649 karma

I love that smart ass crippled bastard.

budde_335 karma

We also love you.

Colonelwheel405 karma

I really wanted this to mean that you're saying that you love me, the smart ass crippled bastard, but I think you meant it in the fully sincere way. Either way I still laughed <3

Alessio891684 karma

My brother has the same condition, doctors said it would have been a miracle if he survived, and a miracle it was. He is now doing an experimental cure which seems to get rid of most problems, at least until a couple of days before doing the next shot.

Did the doctors gave you the same cure?

Colonelwheel626 karma

Unfortunately no, but I'm working on it. I'm so happy to hear about your brother being okay though! I hope he continues great progress <3

mineralphd123 karma

Hi Tyler Oddly enough, I am at a scientific conference at the moment for medicinal chemists. One of the talks was on a project for SMA. Know that people like myself have dedicated our lives to find cures /treatments for rare diseases like yours. We know patients are waiting....

Colonelwheel96 karma

I do know that and I'm infinitely grateful. Even if I never receive treatment before I leave this little blue marble, I already take a lot of comfort in knowing that people are soon likely to never experience SMA again. I appreciate you and all that you do.

403youandme494 karma

Well ill be that guy and ask, did you have any of "bright light" or other commonly thought of near death experiences?

Colonelwheel958 karma

I did! It was such an odd and vivid experience. I could feel my body being numb while I was in a very vivid dream state. Full brain function. I was doing the same thing we all do during a bad dream. I tried prying my eyes open to wake up. But yes! It was quite a few short dream sequences. All of them were muffled like I was underwater. I saw the bright light in between a sequence and there was a single shadow silhouette on my left. A few dream sequences later and I was back at the bright light with a second silhouette on my right. I shook my head no and woke up to a room full of people while I had a breathing mask on.

I had absolutely no idea what happened. I just knew it wasn't good and I yelled FUCK repeatedly until I saw a few start to cry...in hindsight yelling was hilariously ineffective with a bipap mask on.

Krombopulos_Micheal263 karma

Hahah I just pictured you screaming fuck with the mask on and it was pretty funny, probably horrifying for the people in the room but it sure paints a funny picture now.

Colonelwheel255 karma

I can't even pretend. In a hindsight way, my voice was also really muffled so it still cracks me up

Colonelwheel781 karma

As a bonus...I'm not saying that I've done acid. Apparently my friend in the EXACT SAME SITUATION took acid after HIS CPR and nobody told him that it would make his body feel numb. He thought he was dying again and called his parents. What a jackass.

LocallySourcedDino260 karma

You mentioned that you like dogs and that they can sense your condition. Do you have a service dog? Or would you consider getting one if you don’t have one?

What are you planning to major in when you go to college?

Colonelwheel449 karma

I would absolutely love to get one but the wait list is so long :(

Before college I actually want to start my own non-profit to help those who have disabilities with transportation. I'll be throwing my soul into it to hopefully help fix the same misfortunes I faced for years. Otherwise, psychology is definitely my passion

Schmeethatsme55 karma

I started a for-profit transport service for similar reasons (I have a spinal cord injury). I wish you good luck! It was a helluva time.

I did want to share we regularly transported a guy your age with the same condition to the strip club all the time. He was a good guy. I wanted to see if it was you.

Edit: forgot to mention clients condition.

Colonelwheel20 karma

HAHA. Not me, but that's actually hilarious because every time I pitch the nonprofit idea I, without fail, every time, say "if Bob wants to go to the strip club at midnight, he's going"

Ironically I've never been

RingGiver255 karma

How does it feel to have survived something that kills most people?

Six minutes. First aid is part of my job (lifeguard) and I'm generally under the impression that you're dead at five (in all honesty, if we start CPR, it might be a good idea to call the church next door).

Colonelwheel369 karma

Man. It's pretty damn surreal three years later. I've thought about a ton of variables. Hospital choice. The timing. Hell. The fact that they'd still continue at the six minute mark without intubation on a 55lbs barely 4 foot tall guy. It's incredible. It's mind blowing. I love medical sciences so I'm fully aware of everything here and I still thank them all for not stopping.

I still make the joke that Easter should be my rebirthday since 3 days is just a little bit longer last time I checked ;)

floatingsaltmine105 karma

wait what you are only 4 ft. tall? :0

Colonelwheel155 karma

Honestly probably a bit smaller. I'll measure in the morning :)

floatingsaltmine85 karma

how old are you? i assume your condition led to that?

Colonelwheel342 karma

23, and yep. Severe scoliosis so I'm basically an accordion lmao

floatingsaltmine96 karma

oh wow... i got slight scoliosis too but it's peanut compared to your condition

keep rocking, my dude.

Colonelwheel234 karma

I appreciate it! But yeah. My armpit is literally touching my HIP as I type this

miss-izzle228 karma

What is the hardest thing you have to deal with on a daily basis that we might take for granted, and what's the best thing you get to experience because of your illness?

Do you believe in the choice to die at your own time? (Dr assisted or something like that)

What is your life expectancy and are there things you can do to lengthen it?

Cats or dogs?

Thanks for answering!

Colonelwheel473 karma

Ooooh. You went heavy! Good job. I was afraid people wouldn't.

For the worst I have a few answers that are just kinda too hard to decide between. I genuinely regret that I can't be the best partner possible to my hypothetical s/o. The more special they are to me, the more I want to protect them from being limited. However, since that's also somewhat a matter of mentality, objectively, things that are JUST out of my reach or are a bit too heavy drive me up the wall. Everyday scenario is like turning the fan on. Funny scenario is the time I got trapped in A FULLY FUNCTIONAL ELEVATOR FOR 30 MINUTES BECAUSE I COULDN'T REACH THE BUTTON. The best thing is absolutely hands down the high quality people having my challenges brings into my life. I've also never stepped on a Lego or walked in on my parents banging so that's pretty sweet.

One hundred percent yes. I considered suicide for a few days and I kept going through the mental process of "how the fuck can I ask someone to kill me?" and thankfully I got help. But the fact that I couldn't even kill myself if I wanted to made me feel even worse.

This condition ranges like crazy. I wish I could give you an accurate guess, but it's a very radical range. And actually yes! The very first treatment for this condition has been made! Spinraza. It completely halts muscle deterioration but it's astronomically expensive and only available in about half of the states. Our hospital has been going through legal red tape for quite nearly a year now.

Dogs all the way. They can actually sense my condition and it's so damn cool to see them calm down

mtrld124 karma

Dogs can sense your condition?

Colonelwheel320 karma

Oddly enough, yep. If I didn't break any bones during CPR, I'm definitely pretty durable haha. But just about every dog I've ever met, no matter how excited they are, you can tell they're trying to be careful. I don't get the bum rush of love and happiness hard at all

stueh150 karma

But ...But.... you still get the love, right!?!?

Colonelwheel358 karma

ALL THE GENTLE LOVE YESSSS

DemonicPro178 karma

Can you play video games? What does your daily activity consist of ?

Colonelwheel709 karma

I'm super glad you asked this. I used to play video games just fine until my muscles got too weak to operate a controller normally. That's when Ablegamers stepped in. This non-profit organization literally changed my life. The COO Steven Spohn coincidentally has the same condition as I do. Because of them, I can play again. I use a laser on my head to control keyboard buttons depending on which way I turn my head. They are absolutely amazing. They make sure EVERYONE can play. https://ablegamers.org/

Lately I've been pretty lazy. Watching Netflix, writing more comedy material and working on getting booked more as well as starting my own non-profit to help those who have disabilities with transportation

dpistachio102 karma

How do you feel about that new Xbox controller for people with disabilities?

Colonelwheel344 karma

I actually signed an NDA about 6 months ago and tested the device myself before they announced it. I was extremely fortunate because that device is absolutely amazing

Pasttenseaggressive129 karma

You’re so sweet and humble, you don’t sound anywhere close to bragging!

Why did your heart stop? Any lasting cognitive effects from being without oxygen for such a long time? How is your prognosis for the future?

Bonus question: Is a hotdog a sandwich?

Colonelwheel282 karma

Thank you :)

Fantastic question. I asked too. A doctor was gowning up about 3 weeks into the stay and I asked him "so. What's my diagnosis?" and he said "fantastic question" walked out AND NEVER CAME BACK. Good thing I was already sitting down because holy shit. I never got an official diagnosis from them, but I came in extremely nauseated. They sucked out a bunch of black liquid from my stomach and I blacked out for 4 days. After the month long stay, about 4 months later all the symptoms got just as bad again. I went to a different hospital and they fixed "staph infection emanating from the gut" in a WEEK. They were pretty confused when I almost cried when I said "thank you" for my diagnosis. But I never had open skin so it was pretty suspicious on the first hospital's behalf.

Nope. I've always been this stupid :)

Another great question honestly. My parents were told that I would never make it past 7, but my pulmonary doctor just moved our follow ups to every 6 months instead of every 3, and I asked if an...herbal remedy is off limits. He said not at all. So I think I'm doing pretty good :)

I don't want your bonus existential crisis THANK YOU VERY MUCH

pwniess83 karma

Holy shit that sounds awful and you seem so chill and chipper about it! 10/10 would take out on a date. Best of luck to you dude.

Colonelwheel97 karma

Haha, thank you! No use in being upset about the things ya can't fix. I do comedy for the time being actually. If you're ever in Nebraska I'll take you up on that!

jimhalpertignorantsl126 karma

Did this experience change or affirm any existing beliefs you had in the afterlife?

Colonelwheel278 karma

It absolutely made me more introspective, and much respect to your phrasing to keep my views non controversial. I'm an open book and I'd have to say that it didn't change anything for me. I still believe in a higher power, but I define that as whatever is strong enough to make a planet. Even if the higher power is simply science. As for the afterlife, it definitely made me think for a bit, but it didn't change anything. I lean towards the same nonexistent consciousness as before birth, but I don't feel like I can declare that as definitive

jimhalpertignorantsl71 karma

I’m sorry if this is prying too much, but I’m currently studying psychology and philosophy so this is right up my nerdy alley. Do you think if you had, and please don’t see this as insensitive, not survived, would you have seen the bright light again? In the moment, did you feel as if you were dying and if so did you find yourself trying to invoke that montage of your life of legend? I like the way you phrased your beliefs, and I couldn’t agree more with them. Thanks for doing this!

Colonelwheel132 karma

No need to apologize! This is an AMA and my passion is psychology as well. Check out my other responses for proof :)

Towards the end of the "dream sequences" I did start to get pretty scared. I had full mental faculties and I was literally telling myself "okay you can wake up now, you asshole... Seriously wake up. What the hell?"

Had I not woke up immediately after seeing the light and two silhouettes...I'm really not sure what would've happened next.

jimhalpertignorantsl45 karma

Has this experience increased or sparked an interest in trying psychedelics to make sense of the matter?

Colonelwheel82 karma

My experience with the two big psychedelics were actually completely unrelated. Admittedly a just for fun thing. LSD never again. I got a numb body (from high blood pressure that LSD causes) which FELT the exact same as the near death experience and I just absolutely freaked out. I thought I was going through death again. Thankfully I have Xanax for my anxiety.

diQ__20 karma

Wow, dude, these feelings come irrelevant of your physical state with LSD. Been there both, on psychedelics and in hospital(completely different diagnosis ofc, but still, 4 hours in coma with doctors having no clue if I'd ever come out of it, stating a 50-50 chance to my parents). Could relate to your answers in this thread, best of luck with life and keep going strong. Feel free to pm me if you're having trouble with getting ANY supplements, I can probably help with it and it would be my pleasure. Never even heard of spinraza, but if you know of any generics available or upcoming, I'll probably be able and willing to help. Since this is a question thread but I'm not contributing on this matter, feel free to answer a question of your choice which you think is important to share, sounds fair on my part, since I've found this AmA really interesting. Respect.

Colonelwheel23 karma

I really, really appreciate it man and I'm glad you're okay too. You seem like a hell of a dude. I will absolutely take you up on raising an awareness about a specific aspect when I can think of a really good one. In the meantime I'll ask you a question if you're cool with it! If we swapped lives right now, knowing what you know about SMA, what would you miss the most besides specific people?

4077007108 karma

What caused that massive potassium shift from 9/21-9/22? That’s a lot to just drop in a day.

Colonelwheel101 karma

The golden question. I suppose just my declining state. Potassium is the most important thing on the entire metabolic panel for healthy heart functioning. I was blacked out but still talking. Not eating enough either I assume. Probably nothing actually. They just couldn't keep it up and the turnaround time for the test is...if I remember correctly, 8 hours?

407700732 karma

Depends on which type of test they run. We can get results back in 2 minutes if we really need to. Were you by chance on any diuretics?

That’s just amazing to me that it dropped that fast. Very interesting experience. I assume you coded between those two tests, or was all that blood work after you coded?

Colonelwheel34 karma

To be totally honest with ya, I'm not quite sure what I was on. I recall them mentioning and my parents yelling at them about some contraindications from some respiratory medicine that I didn't even need. They just assumed my lungs were compromised because of the nature of the condition. And I remember being on Zosyn. But the Dilauded kinda destroyed some of my recollection. Before I posted this I was actually under the impression that I coded on the 23rd and Facebook posts corroborated this...so perhaps I had another sharp drop. I love this area of study so I'll definitely be talking to the folks in the morning and getting back to you

largestbeefartist108 karma

What’s the weirdest part of your life?

Colonelwheel285 karma

Probably too much information here, but the fact that my member stands better than I do yet I'm not strong enough to do anything about it. And the people that just straight up first sentence out of their mouth is asking me if my dick works. It's hilarious to me. Imagine just walking up to someone and asking them that. I've honed many hilarious comebacks to the question though

the_xorach120 karma

Does you dick work?

Colonelwheel415 karma

If you're a guy, it stands better than I do.

If you're a girl, you tell me.

If you're a guy with a girlfriend who asked you to ask me? Ask her.

triforce_of_wisdom12 karma

I want to hear them!

Colonelwheel22 karma

Check out my other reply to this comment haha

Tazmo9996 karma

My big sister had SMA(passed away a bit over 10 years ago, at age 10), and I’m curious. How is your day-to-day life as an adult living with SMA?

Colonelwheel130 karma

I'm so, so very sorry for your loss. I'm quite honestly more worried about how others will handle my death than ever worrying about it for myself. So this time I actually have a question. I know it was ten years ago but how have you all been? Relatively speaking of course.

For right now my day to day life is just a bit of a whimsical goof. I laze about until I want to take something on. Soon I'll be taking on responsibilities and holding myself accountable again

Hubble-Gum87 karma

Did you have the condition always or did you get it in your lifetime?

Colonelwheel199 karma

Passed down genetically. Both of my parents are carriers, but they aren't affected by it. Being a carrier is a 1 in 40 chance and then having an affected child is 1 in 4. I have type 2. 1 is affected immediately at birth and it also kinda helps to determine how severe and fast it is. Type 2 presents itself around 3-6 months, but you're still born with it. Type 3 is in your 20s-ish, and it's not too bad at all in comparison because the speed is also much slower. I have a 17 year old sister who is thankfully unaffected. She could have type 3 but we haven't tested her.

stueh103 karma

May I ask, why had she not been tested? Is it a "Don't need to know, will live my life happily" sorta deal?

Colonelwheel237 karma

Bingo. My parents actually haven't explained that possibility to her either. It might not be the best approach, but that's up to them. And personally after all she's seen me go through I don't want her to think that even 5 percent of it could happen to her. Even if only mentally, I'll be protecting that shithead until I die for real.

stueh142 karma

"I'll be protecting that shithead until I die for real."

I can tell you're an older brother.

Colonelwheel467 karma

Damn skippy. Only reason her previous boyfriend hasn't been ACCIDENTALLY run over is because some asshole thought inventing stairs was a good idea

Colonelwheel90 karma

And if she does have type 3, whenever it manifests, it's not really much as far as I'm aware. Worrying that you have it would in my opinion be worse than having it

Lobin82 karma

I have a close friend with type 3. Hers started manifesting when she was about 4. She's in her late 20s now. Wheelchair-bound (she just got her first power chair, and watching her zoom around unassisted is so exciting!). No use of her legs at all, and while she can still use her arms and hands, they're quite weak; I have to open bottles for her, for example.

Uh. That's about the limit of my knowledge of SMA type 3. May your sister escape it!

Colonelwheel79 karma

This is an absolute testament to the range of this condition in any type. This should be near the top. I hope your friend has access to Spinraza soon if not already! Thank you for teaching ME.

RyanXera68 karma

I’m not trying to come off as rude or anything but you said there’s no limit so I will ask.

Do you think your parents shouldn’t have had children in the first place if they knew they were carrying the gene? Do you think it was selfish of them to have children and risk ruining their lives?

Colonelwheel91 karma

No worries. Nope. They never knew about it before me, and then they intentionally had my sister 5 years later so I think they're pretty unbothered :)

jibish63 karma

A few questions, some kind of specific as I'm close work someone with sma; Do you have a chance of getting Spinraza and would you take it if you could?

Do you have the Xbox one adaptive controller and is it useful? Considering buying it for my SMA Friend

I think based on post history you're in Nebraska, are you temperature sensitive when it gets cold there or is it more of something you have to actually monitor and accommodate for even when you're not cold?

Thanks!

Colonelwheel101 karma

Unfortunately UNMC is really dragging their feet with it, but absolutely yes.

I'm blown away right now. I was one of the 5 people who had to sign an NDA from Microsoft to test that device! I have my alpha and beta unit and my answer is one million times yes. Please also look into https://ablegamers.org/

Correct, and nothing too special :) my muscles just get a little bit more rigid and weak when cold. So sometimes other people drive my chair for me

Ninevehwow52 karma

What's the one thing you really want to do or place you really want to see?

Colonelwheel112 karma

Well, we could absolutely go with the perverted answer that everyone expects anyway, but I actually only mention that because it actually can't even be done by my own power, simply because I'm not strong enough. The reactions I get when I let that become known are priceless

So let's go for the latter haha. Absolutely Japan or Germany. They both have looked beautiful to me for so long and the culture shift also really fascinates me.

Ninevehwow37 karma

I've never been to Japan but Germany is beautiful. You might have luck with a river cruise in that part of the world for decent accommodations while seeing all the cool shit. I worked with an elderly clientele for years, the riverboat cruises seem to be the way the less able ones went to Europe. If you can make it happen I recommend a trip to Germany highly. Honestly,I wasn't thinking about sex. I know being differently abled doesn't take away that desire you're just the same age as my kids so sex didn't cross my mind.

Colonelwheel56 karma

Haha, no worries! I just thought it'd be another unique thing about my situation. I absolutely will jump at the chance if I can! Well. I'll crawl. With my teeth.

malikorous52 karma

How have your medical team supported you? Is there anything that nurses/cna's have done that has had a positive impact? I'm a cna looking to train as a nurse and I'm always interested in how I can improve my interactions patients with conditions like yours.

I'm sorry you've got to deal with all of this.

Colonelwheel137 karma

I'm so happy you asked this. Don't worry. We'll tell you how to assist us. But do you know what keeps us sane? Do you know what makes us cry tears of joy years after we've parted ways?

The little things. A traveling nurse was passing through during that particular stay. Unfortunately she was already engaged, but she found out that I never tried cookies from a specific bakery. She was scheduled to leave and on her last shift she left a box while I slept knowing that I probably wasn't strong enough to eat them yet.

I cry over cookies from three years ago that I didn't even eat. Just be there :)

HeavenlyColor47 karma

I'm sorry to ask the potentially dark and heavy questions, and I don't meant to imply anything as to how you SHOULD feel about this. It's just rare to have such an opportunity to ask questions like this, coming from someone who is in a field in which such questions would be highly relevant.

  1. Is there any part of you that feels like you don't deserve to live on because of the burden you have placed on others?

  2. Given your second chance at life after so many months of struggle, do you feel any more motivated to make a difference in either your life or in the lives of others?

  3. Is there any insight you have gained from the experience that you think every person should weigh and consider incorporating into their own lives?

Thank you in advance for answers to what I would imagine can be incredibly tough questions.

Colonelwheel140 karma

Plot twist. I actually like pain so you're my new favorite person.

Totally kidding! This is exactly the opportunity for these kinds of questions.

I do occasionally feel like a burden, but it's not consistent, and never something that would make me prefer death.

Actually, no. I mean in general, lately, yes. But there's no link between my betterment/the betterment of others and the incident.

Definitely but I hope nobody casts this away as cliché lame bullshit. You have one shot. I pulled a second one out of my ass and I'm incredibly lucky. If you believe that nobody cares about you or won't miss you, you're wrong. A cashier you see semi occasionally will miss you. Even if life seems bleak as fuck, I'm here for you and I'm not exaggerating. I won't post my number on this post because it's getting a little sizable, but all of my online presences are very easy to find. Use them. Don't throw it away. If you have the bittersweet experience of hanging by a thread, you'll see it clearly, but don't let it get there. You have one shot. Make it a good one.

ChickenOvaRice45 karma

Favorite thing to watch/read/play during long hospital stays?

Colonelwheel106 karma

Nowadays, LEGALLY OBTAINED superhero series and other series that I watch with my mom. I honestly don't care how old I get. My mother and father are fantastic people. My mom just happens to be a nerd too. Back at children's, Mario and Pokémon all day. Thankfully I only get hospitalized once a year or so now. Back then it was almost monthly

ignaloidas39 karma

What is your dream job?

Colonelwheel81 karma

Heading a non-profit dedicated to helping people with disabilities have access to reliable transportation. Otherwise anything medical and especially anything with frequent travel

NoGingerOrCilantro59 karma

Hey you should contact Shane with Laughing at My Nightmare: https://www.laughingatmynightmare.com

Colonelwheel80 karma

Well fuck me sideways. He has the same condition. I absolutely will! Thank you! :)

gothrules434 karma

First off, thanks for being so candid in your other responses!

Secondly, if you could do any extreme or normal sport what would you do??

Third, would you consider moving to a decent state if you could get treatment?

Thanks in advance for answering man, sending good vibes your way from the West Coast!

Colonelwheel66 karma

No worries man! Someone praised me for talking about the "shitty" parts that nobody else wants to, but the way I see it, those are the most important.

Hmm. You got me on this one. If skydiving with the wingsuit counts, definitely that. Otherwise probably motocross. Gotta go fast.

I'm a quality over quantity kinda guy, so if my people can come with me, definitely. Otherwise I'll stick to the corn and wait for it to come to me :)

24pointbuck31 karma

I have a 12 year old son with SMA type 3. Any tips? Things you wish you knew at that age? Things ypu wish your parents had or had not done?

Love this post, thank you.

Colonelwheel13 karma

No problem at all! I'll still be making it so I can answer every single person here, but I actually want to take a bit more time for this question so I can give you the attention this deserves.

stueh27 karma

This a great AMA mate, and I love your sense of humour and willingness to answer all questions!

I'm going to be That Foreigner and ask Those Questions about America's Healthcare:

How do you get/afford healthcare for something which is, presumably, such an expensive thing to deal with - especially given the regular hospital stays you have?

What is your opinion on the healthcare system in the USA and it's accessibility to, and suitability for, the population as a whole?

Do you believe that real, proper, good quality healthcare should be provided to all people for free?

Do you have any other thoughts/opinions you'd like to express about healthcare in the USA?

Have you travelled much? Do you want to? Where/what do you most want to visit/see?

Also, as an aspiring/working comic (I don't k is which it is), do you identify with Jimmy and Timmy from South Park?

Colonelwheel38 karma

Oh boy. I thought I was past all the dark questions and ya FUCKED IT UP PAL. Hahaha. I really appreciate that man.

Since I'm born disabled, everything has been free. I almost wish I was joking. Be crippled and you get to be kept alive so your hospitals can fingerblast your insurance for everything!

As the guy that gets the greatest and would be dead otherwise, at the expense of everyone else while hardworking people suffer? Fuck our health care system right in the tit.

It should definitely be, but I know that a trinity exists. If we go for good, quick, and free, then one of those 3 will suffer horrendously. I wish I knew enough on the topic to propose a high quality solution.

The anonymous benefactor sent us to his beach house in Florida and it was beautiful. I love oceanic scenery. Otherwise not much. I would love to see Japan and Germany for sure.

Nah. I prefer the term Professional Jackass but most call me dumbass :)

stueh18 karma

Thanks for replying like a real trooper. I didn't know that if you're born disabled in the US it's all sorted, something new every day!

And in regards to loving Ocean scenery, I live in Australia and mate have I got news for you. There's so much fuckin ocean here we don't know what to do with it.

Do you like inland scenery? Because This is where I was today and I reckon it's pretty alright hey.

Colonelwheel15 karma

You already had a leg up on m...two legs. AND NOW THIS TOO?!

stueh15 karma

To be honest, I just wanted to brag.

I'm currently in Kakadu, Northern Territory and you never know, I could come home with less limbs than you. The crocs up here are SUPER cuddly. Keep your appendages crossed!

Colonelwheel19 karma

I know you sly bastard. I'm super cuddly too. The scoliosis just really makes a great spoon, yknow? Have fun and keep those limbs! Looks like you got people who need em too :)

mergingplatypus24 karma

Fuck one, marry one, kill one. Mario, Yoshi, Luigi.

Ps. Sorry theyre all guys.

Pps. Is Yoshi a guy? Whats with those eggs?

Colonelwheel67 karma

Oh you bag of whistling dick tips, you're not sorry. Provided I can use pink paint (yes I know birdo is male too but it'll help) I'm gonna plug Yoshi's nose, kill Luigi and marry Mario for those sweet ass royalty checks.

PM-ME-XBOX-LIVE-GOLD18 karma

There is a young lad that lives here around the age of 10 with SMA, he recently started Spinraza injections and it's made quite a difference in his quality of life. At age 23, would a medication like that make a difference in your life? Are things going to get worse for you down the road or will things pretty much just stay the same?

Colonelwheel31 karma

If I can get Spinraza the worst case scenario is staying the same :)

purplewhiteblack16 karma

How is your memory?

Colonelwheel32 karma

In general not fantastic but also not horrible. I take Xanax for anxiety and it can be a bit mischievous on my memory from time to time

BlueZir14 karma

How do you cultivate a positive, healthy attitude towards your situation and avoid negative thinking or low thoughts?

Colonelwheel36 karma

Honestly? It's a bit difficult for me to comprehend myself. I've been blessed with the mindset of being at peace with the things I can't change and focus on what I can change. I also hate seeing other people upset or sad. I get my days when I'm a human and everything sucks, but what brings me the most joy is creating joy in another. Sometimes I fake being happy until I make someone smile

alihassan919312 karma

Do you read books? If not, please check out the latest ones in the Fantasy genre.

Colonelwheel21 karma

I haven't in a long time. What would you recommend?

rejectedstrawberry-4 karma

My Proof: I can't quite PROVE that my heart stopped for the specified 6 minutes but I can surely show ya some of my hospital metabolic results from the day it happened.

Can you at least prove that you have SMA to begin with? metabolic panels are cool but they dont prove that you have the disorder in the first place

Also i just checked the other links out and saw an image of you. I cant help but laugh. You see, about a year or maybe two ago we had another person with SMA making an ama, and they were extremely fat, like 45+ bmi. They claimed that SMA makes it impossible for them to lose weight, and that it would not, in fact, be easier for them to do day to day things if they were not fat. Pretty funny seeing another person with the exact same disorder being the polar opposite of them.

the other person that did ama said they intend to have kids, even though the disorder is genetic and they simply didnt care if they would pass on the disorder to their children. they also didnt care that their kid would have to take care of them.

So my question for you then is, do you intend to have children?

Colonelwheel4 karma

Yeah, that's about how it goes with SMA. You either are built big and stay big, or you're like me. I would actually love to have a child because the risk is quite low. Your spouse has to be a carrier which is a 1 in 40 and then it's a 25 percent chance of having an afflicted child

Colonelwheel3 karma

Absolutely. I'm not strong enough to get the paper saying hi reddit and take the picture myself so I can ask the folks to help me out with that in the morning

Colonelwheel2 karma

I don't think I have the 1990's document of SMA diagnosis on hand but it may be in my email or online medical chart. I'll check