IamA 23-year-old guy living with SMA, a form of muscular dystrophy. I am the wheelchair drifter from the series of viral videos, gifs, and memes. Finally, I'm graduating from university next week. AMA!

Pure gold, thank you.

Drift King

This was one of my favorite repurposes. I always preferred videos like this that added something new to it, rather than people who just ripped it and reposted it.

Get an Immortan Joe mask man, ride eternal SHINY AND CHROME

That is a good one, and one that I haven't heard yet. I usually get a lot of people saying references to Bane from Batman and the occasional Darth Vader.

Just reading the ama introduction made my morning. All the best bro!!

Same to you, my friend.

Specs on your ride please?

I'm so bad with automotive stuff, truth be told. My dad would probably have a better answer for you. Sorry pal.

Serious question, are there snow tires for electric wheelchairs? Do you use them? We have just had the first snow here two days ago.

I personally haven't seen them, but that would be totally awesome.

Woah, what study are you pursuing? What's your plan after graduation?

My degree is in communications, and my dream is to find a career in advertising, preferably in my hometown of Atlanta. I'm looking to enter the field through a social media management job, but we'll see. Honestly, the next step for me is figuring out how I can actually be employable. Here in the USA, any sort of income stands to dramatically impact my ability to get necessary health care services. I have to learn how to walk the tightrope, or in my case, roll it.

Seems like all of my heroes are from the ATL. I don't know what they put in the water over there but whatever it is, it seems to produce a lot of strong and inspirational men. Much respect man

I love my hometown, it's strangely a part of me.

What was the name of the restaurant you filmed the drift video at? I live in Atlanta and want to try the restaurant.

I filmed it at a resort in Mexico, sorry about that. Fox Brothers BBQ is fantastic though, definitely worth a visit.

Hello fellow ATLien, I actually pursued the exact same path as you in college and am currently employed by one of if not the largest digital advertising firms in Atlanta. PM me and I could potentially help you out with next steps, post-graduation.

I'm going to plow through these questions and then definitely hit you up. If that's okay.

Inb4 next year when you post the ama "I got a job by doing an ama! Ama!"

I'm all for this positivity.

Ever thought of becoming a foundation? That way you can still qualify?

It is a option that has been proposed. I would have to do more research before I went down that Avenue.

would you consider moving to EU?

Probably not, I have deep roots here in the states. It would take a lot to get me to move.

You a Falcons fan?

Absolutely, rise up!

Where are you that you started am AMA at midnight EST?

I'm actually on the East Coast, I have really bad sleep habits/sleep patterns. lol

I just realized...What were you doing in a bar if you were only in high school?? And how freaking fast does that wheelchair go? Thing rips!

I am a bad ass, that's why!

No really, it was more like a bar and grill that was open to all ages and we filmed it early in the morning as to avoid foot traffic.

I've since migrated to a new chair, but the one in the video went about 6 mph

You seem to have a great sense of humor my dude. What are your daily challenges that cause the most irritation? Stay happy drift king, and thanks for doing this ama.

Without a doubt, what frustrates me most is when my facial muscles fatigue and it makes it difficult for me to talk. I'm a really talkative guy, and I hate that it makes me sound somewhat unintelligent.

Pardon if I sound like an idiot or ignorant but...since your facial muscles can fatigue, can you or do you train them?

Like just make timed speeches to yourself in reps or something? And do they work?

I could do something like that to maintain the correct function I have, but like my other muscles, it will be difficult to make actual progress in terms of regaining ability. Solid question.

What are your long term goals?

Realistically, find a career in advertising. Maintain my health. Maybe one day write a book about the whole experience.

More unrealistically, I would like to create more wheelchair drifting videos and perhaps make a go at developing that into some sort of online career. Maybe even write a book down that path as well.

Regardless of which way I end up, I would like to spread my brand of optimism and perhaps help people learn to look for the best.

The power of positive thinking! My man! I hope you succeed in whatever you try

I guess the beauty of it all is that I can do both. They aren't mutually exclusive paths, so I guess time and effort would be the only thing that limits me. I'll learn a lot about the future over the next year or so.

Need more drifting vids.

I might have something for you soon.

PLEASE make a youtube channel of you drifting. I will sub immediately.

That might be coming soon, keep your eyes out for it.

Are your hands completely functional or do you need to use any specific equipment to use a computer?

I have a few minor functions with my hands, I'm able to manipulate objects to do things like drive my wheelchair, play with an Xbox controller, or manipulate the trackpad on my laptop. I use a voice recognition typing software called Dragon Dictate, it's how I am typing this response right now.

How well does Dragon Dictate type your sass and sarcasm?

Not very well, it absolutely hates proper nouns. I have a manual, on-screen keyboard that I use to make edits. I take a lot of pride in the tone in which I type.

Huge props to you for all you've accomplished dude. How does the program deal with things like punctuation?

Absolutely horribly, if you aren't good with grammar already, even worse. Luckily, I'm already pretty decent with it. You have to individually say every punctuation while dictating.

You should! It really brings to light that your disease is mostly physical and as someone who shamefully feels a bit awkward around people with disabilities it gives me more confidence to actually have conversations with people with disabilities.

(Sorry if this comes off as ignorant/insensitive)

I completely understand, it's not insensitive at all. Just remember, we are normal people just like you.

Thank you for doing this. You mentioned speech issues before. My brother is autistic (not on the severe end, and a grade lvl ahead in math in fact) , so he doesn't talk much/well. But when he texts me, it seems like talking to an entirely different version of him. Pretty much like any other kid. He wants to be a doctor (or teacher).

I've been thinking about how most people don't get to experience that side of him, and limited to only what he can/will vocalize to them. So my question is, when you're having difficulty communicating, what do you do to make it apparent to others that you are in fact just like them and just as capable? Particularly professionally/academically.

I don't have a perfect answer for this because I'm still trying to figure out for myself. I am absolutely terrified of having to one day interview for a job. My speech patterns are so up and down that I would be really anxious about whether or not I can make it through unscathed. I really wish I had a better answer for you.

Spell that. F-U-C-K. Delete that. Spell that. F-U-C-K.

There is no way you can possibly understand how accurate this is. Every time.

Whatcha playing at the moment?

Right now, mosty NHL 18. I just finished the fractured but whole, I'm also pretty good At Madden and Halo Wars.

If you're looking for someone else with terrible sleep habits to play Xbox with, I'm your man. Shoot me a DM anytime you want to play something!

I'll keep that in mind, thank you.

I haven't bought nhl 18 yet, is it a big upgrade from 17?

Not really, same incremental EA sports upgrades. A lot of the same, but still enjoyable.

If you still have 17, I'll take you on as my hometown Nashville Predators!

I would have to find it, and I'm not very good. lol

How much have scientific advances changed SMA? Took care of a kiddo years ago in the ER with SMA. Haven't seen many cases since. Congrats on graduation!

Life expectancy is definitely increasing. When I was diagnosed, the doctors said I probably had 13 years. I well past that now. Currently, there are experimental, really expensive drugs that have shown promise in combating the progress of the disease. I'm not currently taking any of these drugs, but hope to take the steps down that path very soon.

Have you inquired about being part of these new drugs' clinical trials?

Im 31 year old male with primary progressive MS and was recently given the chance to participate in the clinical trials of a VERY promising new drug....

Why this matters: EVERYTHING IS PAID FOR BY THE PHARMACEUTICAL COMPANY.... EVERYTHING. The drug (over $3000/month), the tests (monthly MRI, bi-monthly blood tests, cognitive function, motor function...almost $10,000/month) and anything else related to my health, is now paid for. I am now a "top-priority" patient whereas before I struggled to get any sort of "audience" to help me understand how to live with this disease. This may seem inconsequential to most, but if you've lived the hell of trying to find treatment with a debilitating disease...this should be a glimmer of hope.

Best of luck to you and congratulations on finishing your education! What an incredible achievement. Your positive outlook is both inspiring and encouraging. Thank you.

That's awesome my friend. I just have a certain hesitance being a human test subject

How do you react when people say people who make memes about you are called insensitive?

Honestly, I think that humor, in good taste, is an often forgotten way of being inclusive. I'm not really easily offended by stuff like that, so I don't know why some people want to do that for me.

If the disease becomes able to be cured, how will that benefit those who have had it for most of their lives? Is curing going to benefit only very young children?

This is a really good question, that I can't give you a perfect answer for. As far as I know, current drugs will benefit in preventing the deterioration of the disease. Considering that I am a sort of an advanced stage, I'm not certain that I would notice any positive physical change, it would just prevent the slow crawl of losing abilities.

That sucks. I'm really sorry that you have had to suffer with this your whole life.

I appreciate the empathy, but I don't really look at it as suffering. Just a different set of scenarios.

I'll be using that one man! By the way can I ask if you receive regular physical therapy or anything of the sort? What things do they work on? I'm a PT myself so curious

I haven't done regular physical therapy since I was in high school, and I'm probably worse off because of it. I used to swim four days a week to maintain function, but I battled a series of illnesses in high school that really took a lot out of me. My mom was my only physical therapist, and it was wearing us both out.

I have a good friend studying doing her post-doc work on myoferlins and dysferlin (the proteins responsible in a roundabout way for MD) so hopefully gene therapy would be in the not too distant future.

That's awesome, tell your friend thank you for me.

So... Does it just stop the deterioration altogether(meaning it might allow muscle growth and all) or does it just barely allow a status quo?

I'm probably not qualified to give the best answer, but from what I understand, it maintains the status quo. For further information, it would be best to look up Spinraza, the actual drug. Sorry I can't be of more help.

Masterbation.. is that something you engage in?

Without being grizzly, no. Not really a physical possibility, unfortunately.

Thank you for answering!!

I'm sure I'll be down voted for asking, but I'm also sure alot of people are curious too.

Although I guess you lose points for not responding "only when you're mom's around to help out"

I kind of an open book, pal. Don't sweat it. It's one of those questions that I'm sure that other people have, but are afraid to ask.

But um... Do you ever ejaculate? When and how? And is it on purpose or by accident?

Not voluntarily, kind of embarrassing so I'd rather not detail it farther than that. I hope that answers the question, I don't want to be evasive.

If you had a friend like Jim Jefferies, would you go to a brothel with him?

Probably not until I was certain that I could not attract a female on my own. I don't know if that make sense

Your outlook and attitude is awesome, and congratulations on the degree. Is there a specific core-course that you took that you enjoyed the most?

I took a digital writing class last year with the perfect professor. He gave us an wide latitude to write about what we wanted to, and it was something that I can see myself doing in the future as a career.

Hi Jake, you have lovely eyes. :) I’m a sophomore in college, do you have any tips for surviving finals season?

Thank you, I really appreciate the compliment. As far as finals, I think a lot of people forget to sleep. I'm all for cramming and other vigorous study tactics, but don't do it at the expense of adequate sleep. I know that I probably had a more relaxed schedule than most in college, but if possible, balance rests with total study time.

Looking back, what advice would you give to the younger you who is leaving high school and about to enter college?

This is a tough one. I'll probably tell myself to be more useful with my time. The newfound freedom kind of went to my head, I developed a lazy habit, and it took me a while to snap that habit.

Hey dude, thanks for doing an AMA!

Over the summers I volunteer as a camp counselor for kids with MD through the Muscular Dystrophy Association. As a counselor I can't entirely relate with some kids, simply because I've never had to go through the same experiences growing up. Do you have any advice on how I could be a better counselor for these kids?
Thanks again!

First of all, you are a legend. MDA camp counselors are the embodiment of Angels.

To answer your question, I would say just focus on being their hands and feet, and being someone that they can talk to. You don't really even have to understand their individual circumstances if you are able to joyfully help them get the most out of Camp. The simplest way to say it is don't over think it. Just being there for them is more than most people have to offer.

How are you?

Fine thank you. How are you?

You mention your condition is close to be cured by science, do you know what that would entail? Congrats on graduating!

Thank you, there is a new series of bleeding edge drugs that combat the motor neuron issues encountered with spinal muscular atrophy. Children born with it in the future are going to have that they need to prevent the deterioration process that the condition brings about. It doesn't look like it will help me out too much, other than to prevent the further crawl of losing abilities.

My friend’s son was recently dx’d with type II sma. What was your early journey like? age at dx, abilities... and how did you deal with that as a young child mentally?

That's my type. It would be hard to say, my parents never really accepted it in the sense that I was any different from my brothers, and as such it would be tough for me to say. I never got cerebral with it until I became a young adult, and by then the physical toll was a little bit more noticeable. I'm sorry if that isn't a great answer.

How did you find out you were such a sensation on the internet? Any first thoughts on seeing all the edits and compilations?

Believe it or not, I was concurrently anxiously waiting for a response to a college application and finishing up an important history project. I was procrastinating, so I looked to see the video for some reason. I was blown away that it had about 400,000 views. I was ecstatic, and my parents had no idea why I thought it was a big deal.

At first, I'll admit, I wasn't a fan. Oftentimes, I wasn't credited as the original video maker. As an aspiring online content creator, I saw this as a death sentence to my aspirations of building an audience. I have sense taken a lighter stance on the issue because I remembered that in my original video, I used copyrighted music. It felt hypocritical.

I read that you want to go into advertising, OP. Have you tried applying with Ford, Toyota or another motor company? Perhaps Tesla?

Not up to this point. There are a lot of hurdles I have to get over to just be gainfully employable. These are all great ideas though, and will definitely be on the radar when the time comes.

Is it uncomfortable to have SMA? Is there any pain or something you have to live with?

Not particularly, there are some aches and sore muscles. It doesn't cause pain by itself. A better word to describe it is annoying, especially when it comes to losing abilities.

Hi Jake! I have two brothers with Duchenne Muscular Dystrophy - I genuinely see the battles you guys have and have no idea how you cope as well as you do.

Few questions:

• how old were you when you were diagnosed?
• do you have any other cases in your family?
• do you have any tips I can give my brothers about finding work with this condition - they are 26 and 24 and have struggled their whole life

Thanks

I was diagnosed at 20 months.

Fortunately, and against the odds, I am the only person in my family with a neuromuscular disorder.

Honestly pal, I'm trying to figure out this whole employment thing as well. If it eases your mind at all, I know that at least it is possible. I can update you when I have more information.

Besides studying for your degree, how do you spend your free time?

Do you play video games? If so, what's your perspective on the impact of video games on people who are physically disabled?

also congrats on the degree, i'm a little bit older and thinking about going back to school and you just added a few gallons to the ol' motivation tank.

I really like going to concerts and hanging out with friends.

And yes, I do a fair amount of gaming.

I actually used to have a column on a video game news website that was all about the positive impacts of games for disabled folks. The website is now defunct, so you will probably have to use an Internet archive to find them.

Do you have a muscle car drift trophy?

No I do not, sadly.

What is your biggest challenge in day to day life being confined to a wheelchair?

Stairs. They are the absolute worst. Thank goodness for elevators.

If you had 13 free murders, who would be absolutely fucked?

That's a lot of pressure, I don't know about this one. That's some death note shit right there. I'm going down to respectfully pass, sorry about that.

Have you ever had a girlfriend?

Up to this point in my life, no sir.

What is your degree in?

Communications.

Living with SMA, what unique perspective(s) do you think you have about humanity?

Maybe empathy, this is a tough question because I don't want to pat myself on the back. I pride myself on being able to roll around in someone else's shoes, so I think that is the safest answer for me.

So like, is anyone going to post the fucking video so people not in the loop know who this is?

https://youtu.be/_DUF-NiHgO4 Sorry about that, here it is pal. This is the original video, but some of the videos that reused the footage were much larger

You like referencing your ability to roll around. What's your opinion of Katamari?

I've never played it, to be honest.

Hey! Really appreciate your outlook :D! So, my question is, have you ever watched the FF movies and if so, which one is your favorite or if you haven't what's your favorite movie? Also, what's your favorite food?

I feel like that franchise has went off the rails, I would say that my favorite is probably actually the first. My favorite movie is Team America: World Police. I love well-made chicken wings.

I studied muscular dystrophies for my PhD and am about to finish medical school, starting residency in Child Neurology, with a focus on the neuromuscular disorders next year. Do you have any advice for either physicians or scientists that you wish they knew before you had the chance to work/interact with them?

I had the chance to meet some of the founders of Nusinersen a few weeks ago. Its development from bench to bedside is really a remarkable story and really speaks for the power of science and research to redefine the boundaries of medicine.

Congratulations on graduating and thanks for the AMA man!

I feel like this is the most important question I've had to answer all night, you want me to advise scientists that are much smarter than I am. lol I guess that the only thing that I could think of is to remind them that these are people, each with individual back stories and upbringings, and the work that you do might very well completely alter the course of their life. It's a tremendous burden, but totally worth the fight and effort. Fight as hard as we are, and there's nothing we can't accomplish together.

Do you feel the same as anyone else without SMA but only physically different or maybe you do feel different but in a good or special way? Do you make jokes about yourself or your disability or do you not like those jokes? What do you think makes you different from other people from how you have grown up with SMA, like what people do not realize a lot? Can I ask more questions?

It comes in phases, as a kid, you couldn't have convinced me that I was any different than anyone else. As I matured, I had to learn to accept my differences, but not accept that they made me worse in some way. It was a tough process.

I love when people joke around with stuff like disability. It's a way to be inclusive that a lot of people seem to overlook.

People don't realize that our mentalities aren't that different. You have the same wants and desires, but I don't always have the ability to make it happen when someone not in this situation.

Feel free.

I am not sure if this has been asked, but IF Science ends up curing SMA and you benefit from it, other than walking, what is the first thing you will do?

Probably give someone a real hug. The ones I do right now are just kind of awkward.

I have to say, you have an amazing outlook on life. Not to mention immaculate writing talent. Anyway, if you only had one message to pass on to people, what would it be?

Thank you so much, that means a lot to me.

I would say just to lighten up and try not to take life so seriously. I've found that life is a lot more enjoyable/easier when you learn how to be able to laugh at yourself.

Woah, late to the party, but, how do you feel about your video being turned into a meme? Were they mostly positive memes or more negative? Keep on keeping on my man!

For me it's hard to discern what would be positive or negative, luckily I'm able to laugh at both. It was a process I was prepared for, the video blew up before the memes/gifs.

I worked as an assistant to a man with SMA type 0 for years. I'm in Scandinavia, where there is a lot support. For example, he had 24 hour assistance available for home and work and even holidays (he lived on his own), so he was totally independent from family. He also had a car altered so he could drive via joystick.

I'm curious what daily life is like where you are, and what outside support (if any) is available. Are you happy with your level of independence? Have you ever been interested in driving?

I live a pretty independent life right now, I have five PCAs who provide me 24 hour care under a certain Medicaid waiver. I love my independence, which is why employment is a difficult prospect for me right now, because that would limit my ability to have Medicaid.

I have absolutely zero interest in driving. If I hit someone with my wheelchair, the worst that it could do is leave a bruise. An automobile can do a lot more damage. lol

Have you ever gone traveling? Any places you’d love to visit or go back to?

Absolutely, I routinely make trips to Nashville to watch my favorite ice hockey team, see concerts.

At some point, I would like to go to Minnesota to see them play live at home. I know that's really random lol.

Would you like to be friends? Also do you play any video games?

I play Xbox one. And sure buddy.

Hey dude! What’s your favourite album right now?

This is an easy one. I really enjoy crappy pop punk music, so Life's Not out to Get You by Neckdeep is my jam right now. Hon. mention: After the Party by the menzingers

Can you talk or do you use computer voice like Stephen Hawking?

I'm able to talk. Thank you for asking.

Why are you such a badass?

Honestly, ask my parents. It's their fault.

What would you say to a child who is going through the same or similar thing as you are? What advice, tips, jokes, stories, would you want them to know?

Keep your head up, try and turn what many see as a disadvantage into a learning opportunity. Don't be afraid to take advantage of opportunities that may come to you because of your challenge. It's an ethical dilemma, I know, but if you work hard then look at it as a reward rather than a pity move. Those opportunities also happen to be the best chances for you to show people how strong you can really be.

Being able to joke about your disability is a fantastic way to disarm people when first meeting them. There is almost like a mental standoff that goes on in people's heads when it comes to getting to know someone with a disability; do I treat them different do I treat them like everyone else? If you prefer the latter, follow this advice.

Have you seen Initial D (the anime)?

nope, but I have seen it mentioned a lot in the comment section of my video.

It's a 90's anime about street racing and drifting you should check it out Also the soundtrack is awesome

Will do, appreciate the recommendation.

Have you considered/been made aware of Nusinersen?

If that name is interchangeable with spinraza, then I believe I am aware of it.

What keeps you motivated?

Honestly, not knowing any other way to operate. At an early age, my parents sort of instilled a "can't give up" mentality, and it stuck with me ever since. I'm not saying that there aren't ups and downs, but you just have to find a way to keep moving.

Does your last name bother you sometimes?

Absolutely not! Not one day in my life. I wear it as a badge of honor, and it is the perfect icebreaker when meeting new people.

Favorite music artists/bands?

My favorite bands of all time labeled from lowest to highest are as follows: 5. Sublime 4. Yellow card 3. Neckdeep 2. the menzingers 1. blink 182

What are your favourite movies?

I'm quite partial to Nolan's Batman films, I will probably say those are my all-time favorites. Actually, as a collective they come in second to Team America: World Police

Who are your heroes?

This is a tough one, it's sort of evolved over the years. The most consistent has been Mark Hoppus of Blink fame. It almost comes in phases. Right now, I really look up to online content creators like Zach Anner, Burnie Burns, and Philip DeFranco.

If you’re graduating from a university, then why did you say “from university” instead of “from a university”?

I don't know, it was kind of stupid. I think that I was going for the British styling of saying it, I don't know why.

How’s it going?

Pretty all right, thank you for asking.

Are you currently on Spinraza? If yes, how do you afford it. If not, why?

I am not, and the simplest way to answer this is that the MDA clinic that I go to was not adequately informed for me to have a productive dialogue about it. It was frustrating, but I have an appointment with a new Dr. later this month to try and start down the path.

Would you take part in a human trial of this? http://www.sciencemag.org/news/2015/12/crispr-helps-heal-mice-muscular-dystrophy

I'm honestly not sure, human trials sort of weird me out. A little bit afraid of something unproven backfiring and furthering deterioration. I have no reason to believe this, just an irrational thought.

Do you consider yourself the true drift king?

Nah, Ken Block.