IamA 26 year old guy with an unspecified form of Muscular Dystrophy, AMA!

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I do actually. Insofar that I've never actually done it. I just don't have the strength. Still watch porn tho.

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I'll assume that was pre-cooking, couldn't imagine that'd be fulfilling post-cooking.

I don't know what we're cooking around my wank area, but thank you for the gold!

Yeah but see, your noodle isn't "magic".

Ohhhhh my penis is the noodle.

I get it.

How do you get satisfaction if I may ask.

I'll let you know when it happens haha

What has stopped you from getting the services of a sex worker?

Mostly dignity. Not that I don't respect sex workers, but I just would rather have a relationship than just someone to have sex with.

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Honestly I don't really get a ton out of it haha but sometimes I just get horny and want to watch some fuckin haha. I can't speak for him, but it's probably just that he's lonely and wants some form of intimacy, even if it's fake.

This is kind of a tag on to the question below from /u/highvelocitypeanut but have you seen the film Scarlet Road?

I worked for a woman with Friedreich's Ataxia for 3 years; we were very close and she shared a lot with me so I found that film fascinating.

Wow no I haven't but I would definitely be interested in seeing it

What would you give away to be what most of us would consider "normal"?

If you'd asked teenage emo me, I'd have said "Anything." Now though? I'm not sure. I have a pretty good life, ad everything I've gone through has made me who I am, for better or worse. I like who I am.

And that ship has SAILED dude XD

With being reliant on so many people, healthcare equipment, and I assume medicines, there has to have been some pretty scary moments, right? If so, what has been the scariest you can recall?

Once around ten years ago, a nurse set me up for a breathing treatment (which I do a couple times a day to keep my lungs clear and keep me healthy) before she left. My dad was listening and was supposed to come down to sit with me, but got busy doing something and didn't come down right away. Bad timing for me, as my tubing came disconnected and I wasn't breathing through my vent. I can breathe a little on my own, but not for long. I lasted a bit, but the next thing I know my dad is hovering over me and I'm taking the breath of life. I definitely blacked out because I don't remember him coming down.

I have no physical challenges to doing everyday things. I take all of it for granted. How do you view each day? Do you also get complacent, and wake up in the morning thinking "Damn. Another one of these? Why can't I just stay in bed."

Well considering most of my days are spent sitting up in my bed on my computer...yea sometimes haha. I don't lead a super busy life, and I do get feelings of ennui at times, but I'm generally pretty positive and upbeat. It would be much easier to sulk and be miserable, but who wants to be around that?

Hi Christian!!

We went to high school together, but we weren't really friends. How was high school for you? From my perspective as a fellow classmate, it seemed people weren't too judgmental of your condition or mean about it - just confused by it. I hope you understood this and didn't feel too isolated. It seemed like you had a lot of friends. I always wondered how you felt - everyone knew who you were. I can't imagine that. Also, I'll never forgot those cool light up wheels you had on your wheelchair. I hope you still have them.

What are you planning on doing once you get your BA in English? I got my BSEd in English and there are so many different options you can pursue.

High school was...not great for me. Not because of any outside influence, but because I was terrified of speaking. So I internalized everything and became super unhappy and depressed. I was very "why me" for awhile. Luckily college (specifically theatre) was an amazing experience that really helped me break out of myself. I met some lifelong friends there and remembered what it was like to be happy. I may have seemed like I had a lot of friends, but in reality I really only had a couple because I was so scared to reach out to new people for fear of not being understood. This got a bit sad and rambly, but just know that while HS wasn't that great, everything after has been pretty amazing.

As for what I'm doing with my degree, I have NO idea haha. Any suggestions are absolutely welcome. I need a job like ASAP.

I'm sorry to hear that you were depressed during high school but glad to hear it got better. I imagine it would be very hard not to constantly wonder "why me?". I'm happy to hear you're doing better.

As far as your English degree goes.. might I suggest getting in to some freelance writing? Two of my English major friends went on to do freelance writing.. one writes for a blog about wine, the other writes for various sports blogs and the like. You could do it from home and on the computer - which you seem pretty proficient in. The key is to find writing opportunities about stuff you're passionate about, I think. For you, I would imagine that would be gaming. I can't offer much more insight personally but it's worth looking into! Just an idea :) I used my English degree to get a job in IT.. so really you just have to be flexible, creative, and open. You can use the broadness of an English degree to your advantage - you can argue that the degree helped hone/master your attention to detail and analyzing, writing, reading, communication skills, etc. which are basically requirements for any job.

That's a good idea about the freelance work. I had actually thought of that before. Maybe I'll look into it. And that's really good advice about what to do with my degree and what to do with it! Thanks!

Seriously man, what have you got against trophies?

My penis is the only trophy I need.

I've always had a vague curiosity about neuromuscular disorders, but I'll admit I don't know much. Is yours progressive? When did it start? What do your muscles feel like?

Mine was diagnosed when I was 3-4, and it's progressive to a certain extent, but it seems to be very slow. My heart is still healthy, and doesn't show any signs of slowing down or stopping, so I've got that going for me. As for what my muscles feel like, I'm not quite sure what you mean. The way I am is all I've known. I guess weak?

I suppose when you've had something that long from that young an age, it's hard to describe, because you've got no other experience to relate it to. As for myself, I did an AMA a few months ago where I described what it's like not to have any stereo-vision, and it's the same problem: I don't know what normal vision is like, so it's really hard to find a point of reference to describe it to other people.

Exactly. This is normal to me.

Well in any case, I'm glad your heart's okay.

Thanks dude, me too.

What was it like the day you found out? I'm not trying to troll, your perspective is rare

I was 3 or 4, so I don't even remember haha

What's your favorite video game? Conversely is there a style of game that you can't play? What can game developers do to make them easier for you? Have you tried the oculus rift yet?

Oh I hate that question haha it's so hard! I just recently beat Shovel Knight and it was incredible. The music, the humor, just everything was amazing. There's not really a specific style of game that's hard, although games with driving are usually tough. The best thing for me would probably be custom controls. Shovel Knight has them and I was able to be really good at it. I haven't tried the Oculus yet but I'm dying to! I know who this is so you should totally bring it over >.>

I totally will. Download the drivers and get them installed I'll put some demos on a usb and we can figure out a time. We just had our 2nd kid so I don't have a ton of time but I'll stop by for an hour and you can try a bunch out.

Dude that sounds amazing. I'm free all week/weekend so if you have time let me know! Which drivers? Vireio Perception?

hay what was the story with Gamestop I saw on Fbook? any updates on that situation?

Yea it all got worked out! I sent it to a friend of mine who used to work at Gamestop, and he was able to get it traded for some Steam credit :)

Is there something specific that people do when they're around you that really grinds your gears?

Conversely, what's something people do around you specifically that you appreciate the most?

I hate when people act like they understand what I say, when it's SO obvious that they can't. Take the time and have the patience to try to figure out what I'm saying.

Conversely? When they're patient and understanding with my speech.

UGH! It drove me up the wall when people (servers, etc) would 1) either talk to ME because they assumed the woman I was with couldn't comprehend/understand them, or 2) would talk to her like she was completely unable to understand them (really REALLY loudly, slowly, and with exaggerated gestures). It takes 5 freaking seconds of your time to listen carefully and understand.

After a while I started passively aggressively responding to "do you know what she wants for lunch" with "I don't know, why don't you ask her?" And then just staring directly at them.

Yep I've totally had that happen. Another part of it though for me is that I'm so used to other people speaking for me that I use them as a crutch. I'm getting better at speaking for myself, but old habits and such.

Death stare, death stare for days; have all your friends, family, everyone practice it. I love service workers and don't wish them ill, but MAN the death stare is SUPER EFFECTIVE for that shit.

Haha yeah. I always just end up feeling bad though. The majority just don't know any better. They should have to take a sensitivity course haha.

My brother is also 26 and has Duchenne Muscular Dystrophy. He hasn't been able to walk since he was 10, and has been on a ventilator & a gastrojejunal tube since he was 18 (and was actually hospitalized for 25 months before we managed to get him back home.)

Sorry if all my questions seem a little scattered, but feel feel to answer as much or as little as you want:

I was just wondering, do you require 24/7 nursing care at home or are you fairly independent in that regard? It's been very difficult to find quality, dependable nurses so that my parents are able to work and be able to afford our health insurance.

Do you still have the strength to function on your own without much/any assistance? Are you completely dependent on the ventilator? My brother's muscles are so weak and his hands are so contracted that we have to help him with/ do everything for him. Getting him out of bed for doctor's appointments is not an easy task either. So much equipment we have to take with us, and it creates a scene out in public when his alarms go off. Sadly, it's too difficult for him to go to college as much as he would like to. He has taken some online courses though, since he loves to learn about history. Has your MD created any challenges in your efforts toward your degree?

What is your prognosis/life expectancy? I know sometimes it can be difficult to maintain a positive outlook on life, but is there anything that motivates you to keep fighting every day? Do you have any pets? What goals do you have in life? Is there anywhere you'd love to travel to if given the opportunity?

Hoo boy you weren't kidding about the scattering haha but no worries. I'll do my best.

Yeah I require someone to be around me at all times in case something happens with my vent (which yes I am on 24/7) or if I need to go to the bathroom or something. I need help moving around 90-95% of my body, and need to be lifted in and out of my wheelchair/commode/shower chair. My dad is really the only one that can do it, and it's super disruptive when he's trying to work. He's also almost 70, so idk how much longer he can do it. We have nursing pretty much 24/7, especially with my mom fighting cancer, but not all of them are super reliable so I know what you mean.

I use my right arm and hand to do everything from playing video games and using my computer, to punching my friends when they get sassy lol. I broke my left arm when I was little and was so scared that I stopped using it and eventually lost the use of it.

Since so much is done on computers nowadays it makes it way easier for me to do my homework on my own. Even ten years ago I probably wouldn't have been able to be as independent as I am.

I don't really know my prognosis or life expectancy. It's never really been discussed and I'm kind of glad for that honestly. No one should have a doomsday clock in the back of their head. That's no way to live. I just try to live one at a time.

I have two dogs named Oreo and Raven, would love a cat, and would love to go to Japan some day.

I love how most of the top posts on here are from CADRadio guys.

How has it been, having people who know you (looks like some distant acquaintances have come out of the woodwork, too) asking these super personal questions?

I thought of another question!: What modern technology has recently come out that has improved things for you? i.e. hands-free typing, or better medical equipment, etc.

Haha I don't mind it. I'm very open about my life so I think it's cool that people want to know about me. Friends or strangers; doesn't matter.

And the iPhone hands down. That thing opened me up on a whole other level.

How do you view people getting handicapped parking placards for things like obesity?

If they have a true medical reason for it, that's one thing. If they're just lazy it pisses me off.

Hi Christian, I know I just told you I wouldn't ask you any questions because I can just text you since we're friends and stuff but I have always wondered one thing. I've seen you drink, plenty of times, but have you ever drank too much? Can you throw up? Do you get hung over?

Oh boy it's storytime. Gather round, heathens.

The one and only time I overdid it was the time I did two shots of vodka and then decided to do a shot of tequila. After the shot went in, my memory went off. One minute I'm at the bar, the next I'm in my bed and it's 5am. My heart is pounding and I don't how the fuck I time traveled. I'm told that some things happened, like a marathon pee session where no pee actually came out and someone else having to drive my chair because curbs kept jumping in front of me. Moral of the story? D mix drinks and don't drink and drive a wheelchair.

Did I get hungover? Oh yes. Did I throw up? Never.

Because I'm a fucking bawse

And this is why I love you.

<3

What kind of support do you receive for speech-language support or therapy?

Speech therapy is only covered in short bursts, and at least so far it hasn't done a whole lot (part of that is on me for not practicing enough though).

May I ask what process was used to determine that you have an unspecified form of MD? I actually research a type of MD called Facioscapulohumeral Muscular Dystrophy, it's the third most common type of MD. Our group is making process in a drug that may be the magic bullet that most are hoping for. It's shown promise in Duchenne (experimental, our center developed it and is going for clinical studies soon) and from what we have noticed from our experiments, in FSHD as well. I am not sure whether this will be something that can benefit you but if I had to put my money on one drug that can, it's this one.

I don't know anything hyper specific; I just know that the last time I had a muscle biopsy (which was probably over 10 years ago so I'm sure things have changed) they said that I had all the proteins that they could test for at the time and it didn't match up. Does that sound right?

I noticed in your proof the machine in the background, and my brother has a feeding tube and uses the same machine to monitor/pump the food through his tube!

My question is, how has your disability affected your education? Do you attend a physical school or take online classes? How did it affect your first and secondary school education?

I go to physical school and the only way it really affects me is if I get sick. This past semester was really rough because I was out for a good two thirds of it and had to end up dropping one class because I kept failing the tests even though I was studying.

Did you ever have to wear leg braces to keep your legs straight?

EDIT: btw i'm 14 with Duchennes MD

I used to! I still have them and wear them occasionally, but not nearly as much as I should lol. You should be better than me and wear them more haha.

How old were you when your vent and feeding tubes were put in? I read that you were 3/4 when you were diagnosed and didn't realize it manifested that early.

How does your specific variant of MD being unknown effect your medical treatment/progression?

I actually don't remember which I got first. I think it was the feeding tube but I don't remember haha. They were around that time I think, and pretty close together.

As for how it effects my progression, it really doesn't. We just deal with whatever happens when it comes.

How's your vision, and how involved are your hands and fine motor skills? Do you require any adaptive devices for using the computer or gaming? Sorry if I'm asking too many questions.

No you're fine haha. Asking questions is the point!

My vision is fine, my left hand and arm are basically just glorified paperweights, while my right arm has pretty good mobility and decent strength. I can grab things between my right thumb and pointer finger, but I do most everything with the side and back of my right hand, like type and play video games.

I sometimes use an onscreen keyboard (though I need a new one haha the stock windows one is ass). I also use a controller mapping program called Xpadder to use my mouse with an Xbox 360 controller when I lie down when my sciatica is bothering me.

Your description is perfect, I can picture it exactly in my head. Do you have any other musculoskeletal issues like Scoliosis to work around?

Hope you keep doing well and thanks so much for answering. And for prognosis, etc... just know my friend turns 51 next month. ;-)

And that's really cool about your friend.

Really, REALLY cool.

I used to have scoliosis but I had a rod fused to my spine when I was about 13, so that took care of that haha. The only other thing is that I have some pain in my legs that bothers me, but it's not too bad.

Whats it like to not eat actual food when others around you do? Do you ever taste things? Pardon me if these are stupid questions lol. While I too use a wheelchair it's not due to MD. I broke my neck at the age of 15 & it left me paralyzed from the chest down. (C4 & C5 spinal cord injury) I've been on feeding tubes a couple of times & that crap is so nasty smelling/tasting.✋ high five to my fellow wheelie :]

It doesn't really bother me haha. I've never eaten by mouth so I don't really miss what I never had Yknow? I do snack on things though before I spit them out. High five!

Would be opposed to me hiring a sex worker to give u hand job while u watch porn? I mean. For the love of Christ. If you can't wank off. That's simply tragic. ACTUALLY The auto blow 2! It does all the work. You may be interested in it. http://www.autoblow2.com

That would probably be the most awkward conversation ever with my parents and nurses.

"Hey so this random guy on reddit found out I can't masterbate, so he got me a prostitute to give me a handjob while I watch porn. It's totally cool don't even worry about it."

I appreciate the thought though ;)

How do you deal with a power outage? I imagine it could be fatal being on a vent?

We have a bunch of batteries and a generator for just that reason.

DYEL?

I lifted your mom last night. She seemed pleased.

My girlfriends brother has MD and Mental Issues. He has to go to the hospital with a common cold since he cant cough it out. Do you experience anything like this? I understand he has mental issues as well which you don't seem to have so it is a bit different. Also his MD is technically a rare form that only he has. Not sure what it is called.

Yea I don't have any mental health issues, and I haven't been admitted to the hospital in years. That's mostly due to the fact that I get excellent care at home and I know what I need to stay healthy. I didn't think that MD could effect the brain. Are you sure the two are connected?

How did you cope with gradually not being able to do outdoor things like hiking or iceskating? Maybe you are not an outdoorsy person, but still.

Yea I'm not super outdoorsy haha but it was tough in high school to not be able to do everything that my friends were doing. Now it's just like meh

Do you just eat mashed up food through the feed tube? Or is it some Soylent Green type stuff?

I mean I eat people, but that has nothing to do with my feeding tube ;)

Nah I have a special formula that I eat a bunch of during the day. It has all the nutrients that I need already in it.

What tests did you deal with and what was the process of getting your diagnosis? How old were you at the time?

I don't really have to deal with any tests thankfully. Just some normal blood tests every now and then. I used to have muscle biopsies too to see if anything changed. I was diagnosed when I was about 3-4 so I don't really remember

Are you able to travel by plane? What is your favourite place that you have been to?

I've been on a plane a few times. Mostly when I was little. I've been all up and down the east coast. We used to go to New Hampshire every summer, and then we switched to North Carolina. I went down to Baltimore for a weekend a couple years ago which was pretty fun. I have a lot of fond memories from NH so that's probably my favorite place.

Oh and I also went to Disney world which was really cool

http://youtu.be/HYaWXfU_Kf8?t=2m36s

Wow. Wonder if that's true...

Wouldn't surprise me if on some level it is

I can see your doctors have failed you if you think anything that idiotic is true.

Well your mother clearly failed you when she made you think that anyone would actually give half a shit about what you think.