IamA physically disabled teenager (diagnosed with a rare degenerative disease) AMA you've wanted to ask a disabled person!

get ready for the "does your penis work?" questions.

Prepared. Prepared enough to say I'm a girl. :')

so uhhh... does your vagina work?

My form of muscular dystrophy affects mainly my skeletal muscles- the ones used for movement. My organs and all typically involuntary muscles work fine.

Trying to be as tasteful as possible, what can you feel and not feel? What do you do for exercise?

I have a muscle weakening disease. Nothing is wrong with my sense of touch.

I don't exercise. I'm physically too weak to really do much. Also, recently, they've been doing research on my condition and turns out the more I use my muscles the faster I lose them! Of course they're still doing research but as of now I'm not doing much. I used to stretch and hold small weights when I was younger.

turns out the more I use my muscles the faster I lose them!

Holy shit that sucks, I'm sorry to hear.

I would have never guessed that. It seems counter-intuitive doesn't it?

All the best.

Yeah, for years my doctors thought the opposite, so I did therapies that could've possibly just sped up the weakness in my legs! I wish I could still walk, but life happens.

And thanks.

That's the same deal with my disability. In high school, my doctors had to personally call every gym teacher multiple times a year, because they refused to believe my doctors notes, that I couldn't participate in any physical activity. Glad to know I'm not alone in this boat!

Sorry you had to go through such BS. Teachers just believe what they want to believe. I know a lot of teachers don't teach because they want to- which sucks because it's the students who suffer the most. Education isn't really free.. it comes with a lot of hassle. Hope you're doing much better now!

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This thing called a "Kindle."

No, really.

So your penis does not work?

I'm a girl. :)

how are you? I hope you are making the world's best lemonade!

I'm doing okay these days. I don't have friends like I did when I was younger, and at a time when my peers are getting more independence (driving, dating, college on their own), I seem to be doing the opposite- so it sucks. But I deal with it. I'm never one to try to make others feel sorry for me. At least not on purpose.

being an adult is usually lonelier. Everyone is busy, family 3 jobs... Is there a group you could join? I have been doing home health care and am wondering if there is an adaptive equipment blog? Do you watch Zach Anner? He has CP and is rocking!

Yeah, I don't look forward to turning 18. Besides going to a summer camp for kids with muscular dystrophy every year, there aren't any groups I am in. There are a few parent groups for the type of MD I have but (obviously) I'm not a parent. Groups are scarce for teens with disabilities like mines.

I applaud you for doing home health.. it's a task.

There are many adaptive equipment blogs on the internet- however the costs are a massive problem. It's an incredibly small market that has an incredibly large demand and because of that people sell things for ridiculous prices. I once saw a wheelchair attachment for chalk so kids in wheelchair could use chalk... for over $1,000. What a joke. I don't have any favorite blogs but http://adaptivemall.com is one that rolls into mind. (Pun intended.)

sounds like you need to be around some regular folks that are tolerant, not more disabled people, not on the net either! Real people! I was a member of the Optimists club, we did things to help out the community. No nonprofit can really say no, they all need people, maybe you can be their token disabled person and become their techie. Can you write grants?

Finding folks that are open to being my friend is very hard where I live. I love meeting people who have similar conditions because they usually get what you're going through, but that doesn't mean I don't want friends from other places. It's hard when you can't go out. Sometimes the internet is my only way out.

I can do a lot of things. :) Type at over 100WPM, use AutoCad 2014 (used by engineers), and a lot other things. I want to do graphic design. Maybe one day I'll meet others with my interests, too.

trust me! There are people that will find a way if you have good social skills and can help them. You need to have a lot more people in your circle. C'mon, step out of your comfort zone! How about AmeriCorps? They can't dis your disability you can meet people your own age, make small change, get scholarships and maybe use your AutoCAD skills to design walkways in the woods or something! Your young, your smart and you can do A LOT more than you realize.

Don't worry, I've stepped out of my comfort zone. I get a thrill out of being put in off-situations, compared to how I used to be. I enjoy it now, because it always ends in good things!

Never heard of AmeriCorps. I'm on the website now. I've always wanted to volunteer and give back. I've only found a few opportunities because most volunteer opportunities are looking for someone who has a definite schedule. Now that I just turned 17 maybe more organizations will be up to letting me help them.

I will keep what you say in mind. Sometimes I feel that I don't have a lot to contribute, with the resources I have, but I won't give up! Thank you.

did you look up Zach Anner? he is one of my heroes!

Oops! Totally forgot you asked me about him. I love Zach! I follow him on Twitter. I first heard about him when he (temporarily) got his own show on the OWN Network. Loved him ever since. His optimism is something I try to have every time I do something!

What's your best theoretical design for a kite and when do you plan on setting it in motion? Also, why do you think people are so eager to celebrate Christmas as opposed to any other holiday?

Would you be inclined to say you have no idea what you're doing in life, or have you got this all figured out?

Wasn't ready for the kite question. Really random, eh?

If I could think of a kite in particular, it would be one with a motor that is used on those toy airplanes. That way that kids who can't run with their kite can still "fly their kites." And a handle that can be attached to wheelchairs and such. I don't plan on making one because I have no desire to fly a kite right now, but it's a darn good idea. I'd buy one.

Yes, I'd say I don't really have an idea what I'm doing in life, but I know a lot of what I'm not doing! You can never really have life all figured out with a degenerative condition that takes its own toll, but you can guesstimate and do your best!

Have you ever used a genomics place like 23andme and submitted that you have MD? Real data from real patients can absolutely help out everyone. I have a couple things in my genes. It felt good to "do good" (i suppose) for research at large. Second question in two parts.. are there suppressing meds you take (or are taking) that help out with symptoms / progression(any of the 'sone' corticos etc) ? Do they help?
Immune suppression sucks :-\ but I've never been able to ask someone how things like immunosuppressants affect others' everyday lives.

Hm, just looked up 23andme. I don't believe I've ever done that. The only thing I've ever had were a skin biopsy and a muscle biopsy to confirm my condition (MD). 23andme sounds great.. if I ever get in an awesome financial situation I will definitely consider that!

Nope, no suppressing medications. Er, now that I'm thinking about it.. technically I can never put an end to my symptoms however I do have medications to keep them on a low. Nasonex for seasonal allergies, Prevacid for reflux, Vitamin D3 (apparently I'm a vampire and don't get enough sun), Xopenex/Albuterol whenever I get a lot of mucus in my chest, and another small medication. I have respiratory treatments (nebulizer, cough assist, "the vest") that I do to help keep my system clear. I don't know if my medicines qualify as immune-suppressants, so I hope this answers your question. Sorry. :/

Would you prefer people you just met to ask you questions about your disease, or that they pretend not to notice and try to treat you like everyone else?

I know it would be disingenuous for someone to do that, but I would imagine it would get annoying for you to be answering the same question over and over again.

Also, on the subject of assisting someone like you with simple tasks; are you the prideful type who would rather they let you struggle with a task that would be simple for an able-bodied person, or would you want them to lend a hand no matter how simple the task?

Thanks for doing this by the way.

Mm, I'd rather have people ask me about my disease. It's beats staring at me, or acting like I'm not there. No one ever treats me "like everyone else." If they treated me like everyone else, they wouldn't ignore me the way they do. Times can get awkward, but it's better to speak up than to avoid interaction completely.

Yes, it gets annoying sometimes, but if someone is genuinely curious it's actually enlightening. Especially for people my age.

I would rather you let me do what I can- while I can. Sometimes picking up things are hard, but one day I'm not going to be able to do it anymore. I appreciate your help if I ask for it, or if you say "would you like help?" but sometimes I just like to do things myself. Sometimes my mom sees me reaching for things that are right in front of me and I throw a tantrum (inside my mind, only, haha) because I don't want to learn to be dependent. I don't want to be dependent when I don't have to be. I guess that's what I'm trying to do. :)

Well, by "like everyone else" I mean literally "like everyone else". That would mean that ignoring you is not an option.

As far as doing what you can- while you can, I can see myself being the exact same way if I were in a position such as yours. I would be far too headstrong to allow others to do it for me.

I just never quite knew how to handle that kind of situation. My heart says "Help them" but my gut says "They want to do it for themselves".

I will ask from now on.

Ah, sorry for the confusion. I always want people to treat me like everyone else. I love it when that happens. They tease me, I tease them. If someone doesn't like me, they don't act like they do. It's all fine with me.

Tip: Ask "Would you like help?" instead of "Do you need help?" You never know if that person is a "newly disabled" person, or what they're going through, and some people will respond better to a question asking if assistance would be liked, rather than a question that implies that they look like they need help. Terminology is weird. Personally, I will take any kind of help offered- but I know some people who are iffy about this. So asking if someone would "like" help is totally a safe option.. at least from the ones who aren't crazies. ;) If someone gets mad when you're offering help, they've probably got their own problems they're dealing with and don't mean to put their anger on you. Don't take it personally.

Do you go to school? Do you do any sports ie. wheelchair basketball?

I go to regular public high school. I don't do any sports. At least not yet. Sometimes I wish I did when I was younger, but it's just "not my thing."

When I go to camp I do things like archery, wheelchair soccer/hockey, and play other games that don't require a lot of physical activity, but nothing on a regular bases.

Do you play chess?

No. I used to play checkers, but I haven't played that or chess in quite a few years.

What do you do for extra curriculars?

I don't do any. I don't have time for any, unfortunately. :(

What takes up your time?

Mm, my illness. I get sick a lot. I have doctor appointments a lot. I've had, I believe, 11 to date- so far for this school year. (To put in perspective most kids will have to go to court if they are absent for 13 days for the entire school year). I have to do respiratory treatments (nebulizer, the vest, cough assist) so I can breathe clearly and not get pneumonia. Pneumonia is life threatening for someone like me. Not fun at all.

I also have a home health aide who comes when I get home for the whole school week so I can get showers, hair did, room cleaned, assistance with meals, etc. She can't work if I'm not home, so I have to be there. I can't stay after school when I want to.

Last but not least, just being plain out tired. I have a sleep disorder and do not take medicine for it (reluctant, but that's going to change soon). Insomnia + sleep apnea = Not a fun night. Ever. Which equals a "zombie-like" day.

Go to court?

You mean like a legal one or some school one?

Either way this sounds kinda odd. Is it common in your area?

It's a legal court type-thingy. If you don't come to school at least 90% of the time (and have no valid excuses) then the district/court/whatever can fine you for it. I'm not sure if it's just in my state, but I know a few of my classmates have had to go to court for that. I believe it's called "truancy."

I think it also has something to do with the fact that schools get grant money / whatever for the average amount of students that come to school every day. I'm not sure why, but that happens, which is why my school often holds major tests on the last day of school- so we are forced to come.

Ever try picking up programming as a hobby? It's pretty therapeutic to make programs imo.

I wanted to. I actually signed up for web design for a class last semester, but the school said they "couldn't make accommodations for me," so instead I had to take an engineering class. I'm thankful to know how to use AutoCad, but that's not what I want to do if I go to college.. I want to do web or graphic design. Next semester I signed up for a graphic design class- we'll see if the school makes the accommodations for me. I really want to do it.

I tried teaching myself programming but I got a little confused with all of the different languages (jango, etc.) out there. I didn't know where to start on it all!

Thank you for your comment.

You seem to be coping with it well!

I'm not very familiar with MD, so excuse me if this is a bad question- do you have control over all your limbs? If not, what cAn you control? Is it hard to type?

Also, why would you have to go to court for missing so many days of school? I'm never heard of that before!

Yes, I have control over my limbs however I have an incredible amount of muscle weakness. Some muscles are weaker than the others (example: my legs are weaker than my arms), and some muscles go before the others (example: I can pick up 5 pounds with my arms/hands, but my jaw is too weak to ear (chew) a full day's worth of calories, so I use a feeding tube).

It's easy for me to type, but the keyboard has to be in a specific spot. It's not as easy as it used to be (I could type 114 words per minute with ease- now I'm quite slower, but still fast), for sure.

Nice questions!

I do things like archery, wheelchair soccer/hockey, and play other games that don't require a lot of physical activity

To a person who spends most of his days in front of the glass screen, these things do require a lot of physical activity! >.<

And I assumed you play computer games!

Haha, yes! I used to play computer games. Not anymore though. And rest assured- I still spend most of my days glued to my laptop or Kindle! Once a internet addict, always an internet addict.

Thank you, the lazy procrastinating sloth inside of me feels better now XD

Hey if you're into Sci-Fi check out a T.V. Series called M.A.N.T.I.S., my personal all time favorite, I even like it better than Star Trek!

(;

I will check out M.A.N.T.I.S. I think I can get around to "really" watching that on fall break, or Christmas break. Thanks for the suggestion!

What is the best reaction for me when I'm with a child who asks a very loud question about someone's disability? I want to be informative and forthcoming and reassure them that that's the way some people are born, but I want to do it in the most tactful way possible for all people involved.

I'm not sure if I understood your question completely, but I believe this is what you're asking. "If a kid asks about a stranger's disability loud enough to where they can hear it, what do I do?"

If the person doesn't look busy, I encourage you to ask the question to ask. Don't ask for the child. You want them to feel comfortable around people who look different- not go to you to judge disabled people for them. Eventually that's what happens when the parents hush them and hurriedly move them away. That's totally not what you want to do, because they will do that when they get older. You want them to be able to handle others being different, not ignore that it's happening and walk/run away.

How/why did you choose your username? I don't know why but I'm terribly amused by the idea of a dog that's just chill about everything.

Honestly I made my username last minute. I thought of a word that describes me most of the time, then one of my favorite animals. I put the words together and imagined a nonchalant dog then I was like "This sounds awesome" so I made it. Not a great story, but 'tis true.

How often do you break down and cry because of this unfortunate handicap? Does that become something that you've learned to avoid over time?

Also, do you have a boyfriend? If not, do you have your eyes set on anybody or are you just going with the flow until a boy comes along?

Lastly and most important: How do you feel about Harry Potter?

Sorry if these are deemed insensitive or have been previously answered.

Yikes, haha. //I don't really break down and cry. I can only recall several times that I've cried because of my condition, and I've always been alone and no one knew. I've cried more about my family's situation than my health, to be honest.

I don't have a boyfriend. I used to have a "guy best friend" and I was okay with just that, but now guys don't really talk to me. I'm not a factor in their equation. So getting a guy to say "hi" to me if my goal for now, haha. Boys always come last but sometimes I do wish I had a guy best friend again. Or a friend in general.

Harry Potter? Hmm. I still have my movie tickets from watching the last movie. Never read the books because I never had the attention span to, but I loved my sister telling me all about the books as she read them.

I enjoyed your questions.

Well I have to say that I'm disappointed in your decision to neglect reading Harry Potter. That was the deal breaker right there. We could have had a brilliant life together, and you just tossed that chance aside not unlike how you tossed those amazing works of literary genius.

Another question: What do you do for fun? Do you have any hobbies?

Hehe, sorry! I got my attention span from my mother! I can't comprehend everything that goes on in those books. They're truly works of art, though. It's funny how JKR wrote those books in her darkest times and she's helped millions in their darkest times. Funny how things work.

What do I do for fun? Sometimes I read. I like books that are the average teen girls' fantasies, and books like "The Outsiders." Mm, I also like to draw. I like hand lettering, but it takes me like 10 hours to complete a drawing because of my weakness so that's not always fun. One day I'll get a graphic design program so I can do it on there. I also like to browse Reddit, read the news, and learn useless tricks. Drawing & reading are my life. Now that I've got an e-book reader I love reading a lot more because I don't have to use all of my energy keeping the book open and turning pages.. it's amazing! Any recommendations (perhaps not as long as "Goblet of Fire"? Haha).

Why not get the audio tapes? The voice of HP is Stephen Fry and he does a stellar job at it.

Never thought of that. If my library has the audio, I'll give it a try!

I recommend a few series. Firstly, The Lightning Thief. It's written very well, aimed at the young adult audience, and I think you'll like it. Secondly Eragon. They can be bigger books, but just keep the (e?)book noticeable and you'll pick it up. These are aimed for an audience about 16-17. There are 4 books, the last two get bigger because the author just really wanted to throw a whole bunch of adjectives into them. Also, if you've run out of good books, look into Geronimo Stilton. It's a kids book, but they're really entertaining. So to summarize:

• The Lightning Thief

• Eragon

• Geronimo Stilton

Enjoy!

Thank you so much for the suggestions! Gonna go check out The Lightening Thief and Geronimo Stilton books now! I hope to get around to Eragon. It sounds interesting, and the price of it is great!

There are a bunch of free graphical design programs out there. google sketch up seems to be pretty popular, also you can browse cnet.com to read about a bunch of the different programs and see if any of them interest you.

Looking up Google Sketchup right now. Thanks for the suggestion!

1. You should find out if your library participates in OverDrive (eBook lending program).
2. Try out GIMP or Inkscape if you want to do graphics on a computer. They may not be what you stick with, but they're both free and open source so there's no harm in trying.

Just searched up my library's website. Turns out they do have an eBook lending program! That's really cool.. I actually might start reading a lot more! ;-) I've never heard of Inksape before. Checking it out now. Thank you!

So how're the eBooks and Inkscape working out for ya? :3

The eBooks are amazing! Right now I actually haven't began reading some of the books that everyone has recommended because I recently bought two books, and definitely want to finish Looking For Alaska before I begin reading the others.

Haven't gotten around to Inkscape yet. The weekend just started so I think I'll be able to, now! It looks nice!

What surgeries did you have done? I had a double femoral osteotomy done a few years back myself, and likely ankle and knee surgeries in the future.

I've had tendon-lengthening surgery on both of my feet, and a g-tube inserted. I was supposed to have back surgery for my scoliosis but my team of doctors felt it would be way too risky, and that there was a "more than slight chance" it could end my life. So we scratched that one. I consider those 2 surgeries my "real" surgeries. My other ones were pretty small. Not sure what surgeries are in my future. I don't like to think about it but one day- an internal ventilator. I use an external (CPAP/BIPAP) when I sleep, and if I am extremely tired.

I'd ask more questions but living with a rare disorder myself I know the answer to most of them >.<

Haha, what is the name of yours? Mines is a 1 in a million disorder. Pretty unique if I must say. ;)

I would have to agree! Mine's pretty uncommon too, but no where near as rare (I think, I could be wrong) but it's called "A typical Spondyloepiphesial-Dysplasia congenita"

Hmm, I think your particular kind of "dwarfism" is pretty rare. When I looked it up I found that there are only about a couple hundred recorded cases. Of course my information could be wrong, but who's counting? ;)

Oh, and I put "dwarfism" in quotes because I didn't know what else to use. That's what it said on the medical dictionary I used but I think there could be a better word that I could use for it. (Not sure, but my brain is telling me, haha.)

What is your illness? My daughter had SMA. So I know what you are going through to a degree. I saw her lose the ability to sit up, move her arms, she never moved her legs and towards the end lost the ability to swallow. Don't give up finding a guy. They are stubborn and difficult.

I have Ullrich Congenital Muscular Dystrophy. Yeah, I'm not looking forward to losing the ability to sit up and move my arms. One of my best friends had SMA. She lost her battle mid-last year. It was completely unexpected. I still can't really comprehend the fact that she's gone. I didn't really talk to her much, but there's never a day I don't think about her. I also have a few other friends with SMA 1&2. Sometimes I wonder when my time will be, and if life is so "unexpected" if I really want to spend my time doing the things I do now.

With you saying your daughter "had" SMA, I will go out on a limb here and guess that she passed away. I'm sorry to hear that. Life is never fair, but I hope the ups and downs with her in your life were very much worth it to you.

I won't give up on finding a guy. I hope to at least find a best guy friend again. Maybe one day. It's lonely at school not having friends, so any friend at all is appreciated. Time will tell.

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I loved my Make a Wish wish. Almost everything was thought of ahead of time. There were a few things (like vehicle size and hotel room) that got mixed up but everything else was amazing.. I went on the set of a show in Los Angeles!

I never walked normally. When I was 6 that's when I really stopped walking. Up until the 5th grade I had the ability to some-what pull myself out of bed and into my wheelchair. Shortly after that it became too dangerous, and that's when I started to get sick more. My doctor started ordering me to stay home for a month or so at a time during the flu season, and I'd have unplanned hospital stays happen.

At least my disability didn't start to manifest itself till I was in my 40s, and didn't become really severe till I was over 50.

Must be hard just not being the outcast in social situations! Have you found a way to do it??

What about sexual relationships? Have you had one?? How long did it last?

How do you assert your rights, both sexual and intellectual without having to threaten?

Mm, nope, I haven't found a way around being the outcast. In my old school I had bullies but I also had friends. In my new school (I moved last fall), I don't have friends or bullies. It's odd, but sometimes I prefer my old situation, no matter how mean the bullies were. At my new school some of the kids drive sports cars to school and worry about things I would never worry about (who's wearing what, who's driving what, where they're going to go out, who's parent has what type of job), and I don't share the same interests. I guess what I'm trying to say is I don't connect to people at my new school as much as my old school. At my old school everyone was "lower-middle" class, and at my new school everyone's "upper-middle." I still believe it's possible to make friends regardless of economic situation but I find it hard to relate to a person who says "I would never drive a Prius because it's so ugly!" when I would cry happy tears if I got an old beat-up car.

Of course I still have my friends from summer camp, and 2 friends from my old school, so it's not all bad.

No, no sexual relationships. My mom is kind of weird- my oldest sister was quite the opposite- she wore makeup and went out with guys and did a lot of things. I can't even talk to my mom about a friend (who happens to be a guy) without her mentioning not being in relationships. My mom treats me like a little kid sometimes. I think it's better for kids to be in relationships while still at home so their parents can guide them towards the type of person they want to have a relationship with. Irregardless, no one has asked me out anyways, so no, no relationships yet haha.

Well, it's hard to demand my rights without.. well, being demanding/half-threatening. I've had my district refuse to let me ride a special needs school bus because I wasn't intellectually disabled. Keep in mind I use a wheelchair. Sweet talking wasn't going to make them let me ride a bus, so my mom had to say "get her back on the bus or else we'll call the news." And the next day I was riding a brand new school bus. It's strange how things work.

As far as sexual needs, My mom doesn't think I know as much as I know. She offers to talk to me about things but I'm not close to my mom. At all. So I just look it up. Maybe when I'm 18 and get my own place I'll get more freedom upon the subject. It's a very interesting subject because parents of children with special needs often like to ignore the fact that almost everyone is a sexual being. It's hard without special needs, so I can imagine it's harder to talk about it with a person who has it, but it's a need. There are kids with sexual needs who sexually assault people and are arrested, yet they still don't know what "sex" is because their parents never told them about these things. I could ramble on and on; it's an odd subject.

is it annoying to get around? like how wheelchair accessible is everything really? what's one of the most awkward encounters you've had with your illness and the public? if you masturbated, would you feel it? feel free to not answer the last question if that's in your bubble.

It's not annoying to get around stores like Target and Walmart. I always have someone with me to reach things I can't reach, and the aisles are usually wide enough for my chair to fit & turn around if I would need to. Some restaurants have tables that are too low for my wheelchair so my knees won't go under the tables. Some stores don't have ramps to go into their stores, or they're often on the end of the street- which sucks, because I'll have to roll back down the street to get to the store, where my family can just take the small step. Things are getting more accessible than they used to be, but we still have a long way to go. Example: Doors. Some people have installed buttons where if you press them, the door will open. Some stores have push/pull doors. It's hard to wheel your wheelchair (requires both hands) AND push/pull the door around your chair to get in/out of a store.

Awkward encounters? No real awkward encounters. There were a few times when a toddler would run up to my chair and press on my brakes and their parent's face would turn red, only to realize I didn't mind. There were times when kids would make fun of me right in my face- but their parents weren't around. It didn't necessarily feel good, but in terms of "awkward," no.

I have no loss of feeling- only muscle loss. In fact in some areas of my skin I have hypersensitivity to touch. :)

have you watched the most awesome para olympic commercial?

Nope, I haven't. I suppose I should sometime soon!

Can you masturbate normally? If not, how?

Mm, I don't, but I can if I want to. There are tools I could use but I don't really have that much interest in it. As people with illnesses like mines become weaker it becomes impossible, especially finding alone/privacy time.

I have Marfan's Syndrome and am taking Losartan based on some ongoing studies that it may help. I read that it may help Muscular Dystrophy as well. Have you heard of this?

I've never heard of Losartan, however when I looked it up two of the types of muscular dystrophies mentioned were Duchenne and Congenital MD. I'm not sure of the specific genetic deletion that I have but I don't believe the one listed is the one I have. I'll be looking out if anyone I know with Congenital MD talks about it though! That's great if it's helping you. We'll be one step towards a cure for all of these diseases.

Hey there. Came here to tell you, that I'm an EMT and worked half a year for a 21 year old guy who had the same disease. He had a tracheostoma and I was there to look for that whilst he worked, from 0830 to 1530, five days a week. He worked in IT, he was only able to move his fingers, but he was a happy guy. We went to several movies together, I didn't have to pay, because he had to bring me, or to concerts, which was pretty cool. So hey, be happy and enjoy your day, there a so many things that you and your loved ones can do together.

Ooh.. a trach. Those don't sound like fun. Eventually I might need one but I like to think I won't. That's awesome they didn't make you pay for concerts and such. There are a few concerts that I've still had to pay for my aide when I've went. Totally sucked because I could never afford VIP tickets for both of us and never got to meet the artists I was obsessed with, but there definitely were some advantages like getting to move up closer to the stage and such! I'm so happy you got to work for a guy that you got along with. I can never find an aide that I like. :( My mom is pretty stressed because nursing companies always send aides that can't even pick me up, or do anything that would benefit us, so it's less stressful for her to do things herself- but I still see her stressed out all of the time. Hopefully I find an aide that I like soon.

Thank you for your comment!

What are your hobbies? Did they have to change once you were diagnosed with the disease, or did you work around it.

I used to play on my Wii a lot but I don't really use it anymore because any small movement makes me tired. I liked to draw a lot but now I don't do it as much. When I do draw, it takes a lot longer to get the desired result, but I'm still happy whenever I've worked on something and I get the result I wanted in the end.

I've always liked doing things on the computer because there was nothing that someone else could do that I couldn't, so with "computer related" hobbies, I haven't really had to work around much besides how I sit and where I put the keyboard.

I'm lucky that I've never had a hobby like dancing that I had to quit. I know a girl who had to quit dancing and to go from doing something so active to something, well, not, must suck, especially when it's your passion.

Do you do any gaming or just Reddit?

Just Reddit. No serious gaming like on Steam or anything. When I find someone who has an XBOX I enjoy playing though.

How do you deal with your disability psychically? I mean is it hard for you to be aware that you are so ill.

Will you walk any time in the future?

Do you mean physically or mentally? I wouldn't say it's hard to be aware that I'm as sick as I am. Sometimes I don't realize when I really am sick- to my disease's standards- but I'm always aware of what I can and can't do, and what the outcome is.

No, I'll never walk. I'll continue to get weaker until I can't really move anymore. I used to walk but that stopped when I was 6. Now I get tired just breathing while sitting up sometimes- so I use a ventilator mask that helps make it easier for me to breathe for a few minutes.

Hi,

first of all I want to say that I have alot of respect for you!

As a person that loves nature - especially while hiking/trekking - I was really wondering how you feel about places outside of your everyday routine. Do you have certain places - especially in nature - that you have an "emotional bond" to?

How jealous would it make you if someone told you he walked over 1000km just to "connect with nature"?

Sorry if the questions seem odd or a little self-reflecting but I am really greatful that you are doing this because I feel like I could never be as awesome about it as you are.

Thanks, and sorry for my bad english!

I love going places out of my everyday routine. At summer camp I like to go star gazing at night. It's a beautiful place!

I don't feel jealous towards a person who walks long distances to connect to nature. Actually, I think that's amazing! So many people are addicted to computers and TV- connecting with nature (whether it be by taking a walk or having a bonfire) is cool!

Your English is great. :)

Hey there! Do you play any computer games?

Nope. I used to go on MiniClip all of the time, but no serious gaming like on Steam or something. A lot of that stuff requires the money that I don't have.

What disease do you have, specifically?

Ullrich Congenital Muscular Dystrophy. The "congenital" part just means "present from birth."

I have a friend with a similar condition and I have been talking to him for a while. He currently is very depressed about being limited in the things he can do and is constantly upset that he isn't living up to his expectations. I understand that everyone has a different timeline on their own life happenings but to me it seems he's stuck on this learned helplessness.

What is something you do to either put aside those thoughts or cope with them?

Something I can do to put aside those thoughts? I do something that I can do. If you spend your time thinking about what you can't do, you waste your time not thinking about what you could do, given the accommodations.

He might feel like a bother to people, if he requires assistance from others to do a lot of things- even the things he loves. Sometimes the reassurance from others that you're not a burden on them is all you need to feel better. Or the realization that you can do something you enjoy.

There are going to be times where he takes pity on himself regardless on what you all say, and I say to just let him go through the emotions. If he doesn't bounce back, then there might be a depression situation on hand, but everyone gets down sometimes. Disability or not, it happens to a lot of people.

1. What does not being very able to move... feel like?
2. Did you get this?

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Also, just some formatting help, because I noticed a failed attempt at a list in your text above:

* list item
* list item
* list item

becomes

• list item
• list item
• list item

Ah, thank you for helping me list. I'm not too great at formatting on Reddit. You won't believe how long it took me to learn how to navigate the website.. haha.

And yes, I got the MonkeyLectric lights! Crazy thing, I got an wheelchair accessible van thanks to an awesome foundation not too long after so I could bring my power wheelchair places. So I don't really use my manual chair anymore. Can't put the lights on my power chair wheels because I don't have spokes on them. I think I'll give the lights to my sister.. she's in college and her only transportation is by bike. For sure she'll have the coolest bike around! I totally recommend MonkeyLectric lights! Those things are BRIGHT!

Hey, you mentioned your life is a lot different now that it was a year ago.

Has the disease progressed that much in a year or is your life different cos of other stuff like school or dating or whatever?

My disease has progressed. I can't move my legs and arms as much as I used to. My sleeping pattern is off- thanks to sleep apnea and insomnia. Also, going to a new school with kids I don't relate to as much. And the financial situation that my family is in isn't great.

I've never dated, although sometimes I wish I did. Guys don't really talk to me, or take me seriously, so I don't bother. I know guys at my age can be jerks not on purpose sometimes, too.

What do you like to do for fun when you have the time for it? What sort of music do you like?

I like to draw, or read, or edit pictures. I can't edit pictures too much because I don't have an awesome program, but it's fun to edit for people. I don't draw too often, but lettering is a joy of mines. It takes me 10xs as long to letter by hand- but the outcome is that much more exciting when I'm finished. :')

I like pop, R&B, and alternative rock music. Some of my favorite artists: Ne-Yo, John Legend, Kendall Schmidt, Katy Perry, Cody Simpson, Ariana Grande, and a few more. I like a lot of lesser known artists, so I won't mention them, haha. I have an odd taste of music. :)

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Suggestions? :) EDIT: Oops. Just saw that you said PM you, not reply by comment.

After looking through your proof post, I'm insanely curious: What did you do (or are you planning to do) for your wish?

I went on the set of a Nickelodeon show in Los Angeles. I met the cast, they were very nice. It was my first time going west, so it was incredible seeing the difference in the land. I thought I would be on the set longer than I was, but I can't complain. Everything was paid for, the hotel was amazing- I will never be in a hotel that nice again, and it was a very unique experience. I'm lucky to have been able to go on the set of a show with such nice actors.

Hi! I have a disease very similar to yours, symptom-wise, called EDS, along with Narcolepsy. I've had it all my life, but in 10th grade, I got drastically worse, and had to be home schooled for half a year. But, I graduated with a 4.0+ GPA and am attending one of the top schools in my state. I never knew anyone in a similar situation back in high school, and never had anyone to talk to. That was the hardest part for me, along with teachers giving me constant problems. But my life is back on track, and things get better. My question to you is, did you have any teachers give you a rough time at any point in school? Did having a diagnosis and a name for your disability help (I wasn't properly diagnosed yet)? Did you ever lose any friends because you couldn't participate in certain activities with them?

Ah! I've heard of Ehlers-Danlos Syndrome. Not sure where, but I'm a little familiar with it. Congratulations on the 4.0+ GPA and attending an awesome school!

Yes, my teachers give me a hard time. I've had a teacher indirectly call my lazy because she thought I just sat there. She had no clue of all of the things I go through every day, just to come to school, only to be called lazy. I've had days where I threw up right before getting on the bus- but I still went to school. Days where I was so sick I could barely sit there- only to leave school going to the hospital and finding out I had pneumonia. Now that I'm a lot weaker, just working hard doesn't make the cut anymore. No matter how hard I work I will always be behind- not even mentioning the amount of doctors appointments I have. So social life is impossible. And teachers expect you to put their class before everything. They don't understand. I get yelled at sometimes but I just do what I need to do.

Sometimes I think about homeschooling because my grades aren't where I want them to be.. at all. Especially compared to where they used to be when my disease wasn't as bad. It doesn't help much knowing I have a non-affected system who has traveled the world with her college, and has accomplished a lot more than me. I'm still held up to very high expectations.. I think my mom is slowly realizing that she can't do that anymore.

Yes, having a diagnosis helped when I needed to specialized my "individualized education program," however sometimes it didn't really change anything because my teachers don't take the time to learn about my condition. They just think I sit in this wheelchair and that's it. So it helped in some ways, and didn't help in others.

I definitely had less friends because I didn't participate in similar things as them, but I've had those friends who have stayed with me through thick and thin, too. I always knew who those friends would be when I was in the hospital and they would want to come, or they would notice if I wasn't at school that day- when I wasn't even in any of their classes.

There are always those people who would rather stick with people doing the same things as them than go through having a friendship that takes work- but those are often the friendships that are the best, so they're missing out. :)

I had many teachers like that. I had a health teacher who tried to fail me the day before the end of the semester for not participating in gym for 3 and a half years. I had legal documentation stating he could not do that, so I took it to the vice principal, who opened a can on that teacher, and forced him to correct my grade. After that, he spent a whole class talking about how "many teenagers who are unpopular and have no friends, fake disabilities for attention, and are depressed, etc" Many teachers gave me rough times because doctors could not figure out what was wrong with me, so I didn't have a definitive diagnoses other than narcolepsy. I had teachers say I was faking, say It wasn't that bad, or out right ignore me. Lot of eye rolls in my direction. I had doctors like that as well. At least 8 said everything would be better if I exercised. Turns out, exercising causes severe permanent damage to my body. I had two say I was just depressed. Out of every doctor I saw, I found 3 that have really tried to help me, and they have in many ways. My mom didn't believe me for years, it caused a lot of strain, but she has since apologized and we are better than ever. It was hard to keep up for me as well. My class rank dropped from like #3 to #27! In my senior year I was able to raise it to the top 15, and I was very proud. My problem wasn't necessarily keeping up, but absences. I missed over 60 days of school my sophomore year. Through the rest of high school, I had half days (did wonders!). And I lost pretty much every friend I ever had. We either grew apart or they ended up hating me. I was very isolated. I had one friend who was close, but she moved. I had a friend for many years, but in my senior year, we had a lot of the same art classes, so we became pretty good friends. He was one of the only ones to ever care when I would miss weeks at a time. The only other one was my wonderful boyfriend (2 and a half years together) who was always understanding. But in tenth grade I never once got a text or when id come back after weeks, no one said anything. Combined with teachers, doctors, and family not believing me, I can hardly believe I kept fighting for a diagnoses, because I literally had no one. My boyfriend was the first one who ever believed me and empathized with me. When I started dating him, everything in my life really started to look up. I made a few friends and my family now believes and supports me 100%. I have been diagnosed by a geneticist with EDS, and I'm going a few states over to meet with him on a few weeks, and I am so excited. I am sorry that you have lost friends and dealt with people dismissing your problems. I know how it feels to feel isolated from the world in that way. I've been there, and I have come through it, and am doing fairly well (not physically, but emotionally) so if you ever want to talk to someone who has gone through what you are going though, PM me anytime. I know what you're feeling, and I commend you on your strength in making it this far. Things will look up. =)

Ah, same here. Exercising causes permanent damage to my muscles. The more I use them the faster I lose them, and they'll never come back.

I thought I was the only one who had the "absent" problems. I've been absent for I believe 12 days so far. Only 2 months into the school year. Every fall I get sick and sometimes end up in the hospital.. we'll see when or if that happens this year. It almost never fails. One year I was absent for 4 months. Totally wasn't fun at all.

When you did half days, did you do some classes at home, and some at school? Or did you have half days because you had more credits than needing? I've been thinking about homeschooling, but also wonder if I could do school for half a day. There's an extracurricular that I want to take but I can't take it if I do schoolroom/homebound for a whole day.

About only having 1 friend truly notice/care when you were gone so long, it's funny because the exact same thing happened to me. It's weird, but it makes having that one friend who notices feel that much more special to me.

Aww, happy you had a boyfriend to stick by your side! Not sure if I'll ever get one, but I hope to at least get a "guy friend" who will be there for me. I miss having guy best friends. It seems the worse my condition got the less I had- then again it could also just be that high school changed a lot of the people I hanged around.

I'm so happy you fought for that diagnosis! It sucks trying to find your diagnosis. Finding the ones you don't have sometimes feels worse because it feels like you'll never find the one you have, but I'm happy we both eventually found our diagnosis! I'm sure you had a great long-awaited "I told you so!" moment to your mom, huh? ;)

Happy you get to meet your BF! I hope it is everything you wish for it to be. I'll be spending you a private message sometime.

10th grade was the worst year I've ever had, the only highlight was dating my boyfriend at the end of the year. It was in 10th grade that I did homebound, but it was only for one class. A math teacher would come in two days a week and that's how I took that class. I had half days because for some reason, after about 12, I just can't function anymore, the pain and exhaustion is too much. So, I set it up so I would only have two classes every morning. This did give me enough credits. I was even able to take a lot of art classes. I had to take an online college course, and a biology class at the local community college (I was happy to learn that credit transferred to my current college!) I honestly don't think I would have earned such good grades if I hadn't had those half days. It also helped with my attendance. If I started feeling sicker, I could just say, "I'm going home in an hour, Ill try to stick it through". While the friend who showed concerned was a nice change of pace, it wasn't like we were best friends, I just remember him texting me if I was ok a few times. We had art classes together and that's how we became friends, he was also friends with my boyfriend. I had people who I could always joke with (I always made fun of myself and my disease) I just didn't have anyone who really, really cared. I liked my friends a lot, I just don't think they would be considered friends by other people's standards. I could make them laugh and they could come to me for advice, but I guess I had no social life. The hardest was giving up acting, I had done that since I was 8 and just couldn't do it anymore (I did one last play in 11th). Don't worry about the boyfriend thing. When I started getting worse, my ex bf dumped me out of the blue to date a girl who had bullied me, and then my "best friend". I had more guy friends than girl friends and I never got hit on. I was bullied a lot. I never expected to meet my boyfriend, it was just a twist of fate. And it hasn't always been easy, but it has been worth it. Don't worry about getting a boyfriend. You have a few friends that genuinely care about you, and that's something I wished I'd had. And there are guys out there who are fine dating disabled girls. You're still young and don't stress about it, because I promise it'll happen. I really commend you on your strength, and as hard as it is now, it gets way better. =)

I hate that I don't have a longer reply to this, but there really aren't any words I could say. I just really want to say thank you! It's great to know I'm not crazy! :')

Have you ever just wanted people to act normally around you without being extra nice because of your disability? I hear sometimes it may seem patronizing.

Yeah. I don't want people to be nice to me because I have a disability. I don't want people to be mean to me because I have a disability either. But it seems like I can never really pick and choose.

It's definitely patronizing when you can tell the person is being "very fake" towards you, and doesn't really care about talking to you at all. I see kids talk to the kids in the special classes in the most insincere ways. I'm just happy the kids being talked to like that don't realize it..

At my new school I'm kind of ignored, so I guess I don't have to worry about that.

What is your birthdate / How old are you exactly?

Won't say the exact birthdate to stay anonymous, but I just turned 17 about a month ago. I was born in '96.

I am in a wheelchair now, and have been on a roller coaster of disabling weakness on my left side. They thought I had a rare degenerative autoimmune disorder. Before that I thought I was gonna die. As a fellow disabled person, did you have to go through the long process to prove you are disabled? Do you get angry when you see overweight people using transportationto get around? what did you do when you first found out...? do you type or use a speech program to reply?

No, I didn't have to go through a long process to prove I was disabled because for the most part, it was quite apparent that I at least had a limp and did many things differently than the other kids. As far as for schooling, once I was "kicked out" of a school because at that point I had no official diagnosis yet, but as far as insurance or anything, after I got my official diagnosis, I've had no problems. I'm one of the lucky ones because my disability is in my genetics- there's no changing it. I don't have to physically prove it. In that way, I don't relate to people who acquire their illness later on in life. Of course mines has gotten worse over time, but I've always had my illness, you know? There was nothing that had to be proven.

Not exactly sure what you mean on the question about overweight people using transportation to get around. If you're talking basic public transportation, no, I feel that everyone should have the ability to use it. Then again I live in an area where public transportation is there, but rarely needed. The subways/buses are 60-70% empty a lot of the time. (At least the times that I've been on there.)

What did I do when I first found out about my condition? Well, I never really "found out." It was always somewhat there and I was always very aware of what I could and couldn't do. At the time of my diagnosis it didn't really affect me because I was so young, and my condition wasn't too bad. I was just happy when they gave me a walker and a wheelchair to get around.. I never thought about how weak I was, but how much better I felt after being able to go places while sitting down! :)

I don't use a speech program. I type with all 10s! :)

Do you consider yourself a happy compared to other people? Even though your social life might be different.

Not really. I don't have the social life that I would like to have but I suppose it's better than being around bad influences & tons of drama. So on that aspect I'm happier.

Also, when I make friends who have similar conditions they're less likely to cover up who they are because they "get it." People who share the same struggles just click better sometimes (in my experience*).

Not really. I don't have the social life that I would like to have but I suppose it's better than being around bad influences & tons of drama. So on that aspect I'm happier.

Also, when I make friends who have similar conditions they're less likely to cover up who they are because they "get it." People who share the same struggles just click better sometimes (in my experience*).

whats the meaning of life?

The meaning of life? I'm not sure. But I have a clue it has something to do with making others happy while you're happy, too. I feel good when I know I'm doing good in the world, and others appreciate it. I also feel good when I'm doing something for myself.

Find whatever makes you happy (and also doesn't terrorize others). Haha.

This may sound odd, but do you want to be texting buddies or anything?

Would you mind telling me a little bit about you, please? Hehe.

I'm 20 and female and I go to IU. I love school and am thinking of going into government or law, but I also love to write and have a job as a blogger. I just know it must suck to be bored like that and you sound awesome, so I think we could be friends. :) I will pm you tomorrow when I wake up, soooo tired.

Ah, I'm so jealous! My sister got a ton of free software from the University she used to go to but now that she's switched, I can't use it anymore.. she used to go to NYU. It had a lot of Adobe and Computer Science programs on their "virtual computer lab" type program. It was so cool, even though I couldn't technically download the software and had to use it connected to the internet. Of course I'm not going to say she was still going there only for the sake of me having the online lab thingy, but it totally was a plus for having a big sister who went there!

My sister is your age! She's a junior. Started with electrical engineering but is (somehow) switching over to something else in computer science. Lord knows what she's doing haha but she says she's staying in computer science. I told her she better make a choice because her college choices are rather expensive and if she doesn't I'll be going to one that sucks haha!

I'm up for being a texting buddy. ^{-^} Take your time replying but just let me know whether you're more comfortable with some other messager or just wanna use regular numbers. I'm up for anything.

Do you have any tattoos or do you want any in the future?

No, and no. My MD also makes me have sensitive (to touch only) skin. I've had a skin biopsy (skin cut off) with a "local anesthesia" and still cried a little. Then again, I've had surgery on both feet without tearing up, but I know I can't handle tattoos. I'm not that committed to continue a tattoo if I find it to be unbearable.

Simple start off question: How was your day today? What is it like to be in your position?

It was.. simple. Compared to some of my other days. I had a test, not sure I did too great. Working hard was all I used to have to do to get good grades- that isn't working too great now that I'm weaker, and have a sleep disorder. To be in my position? It sucks sometimes, and sometimes I'm thankful when I see someone in a worse position. I don't have fun or smile as much as I used to. I wonder when life will "give" more than I used to, but I always have that voice in the back of my head reminding me of how blessed I am and that one bad day doesn't equal one bad life. Thanks for the question.

How were you treated differently before/after md?

Well, I've always had MD. It's in my genetics. When I was younger I could walk, and transitioning to a chair when I was young is easier than I'd imagine it would be if I did at the age I am now (17). I must say that I don't have as many friends now that I look a lot different than them. I sit weird and can't do the things they do. I don't relate to them as much as I'd like to. As far as family, sometimes they think I exaggerate my disease. It sucks because if I could have one wish, it would be able to have the opportunity to be lazy. I can't be lazy- I mean, I can, but I'm always tired. There's never really a time when I'm not. So if I don't want to move, it's for a better reason than "I don't want to."

What has been the most difficult aspect of having this disease.

Thanks for taking your time to answer some questions.

Seeing others do things you can't do. Not everything, but just the things you want to do. Having most of my life scheduled by a factor I can't control in the smallest way. It's tough, but so far I'm doing okay.

Stay strong man.

Thank you! I plan on it.

How hard was it to adjust to losing the ability to walk?

It wasn't hard at all, considering I was 6. Walking hurt so much that getting a walker- eventually a wheelchair- was like a godsend. After I began using a wheelchair the loss of muscle strength wasn't as fast/noticeable as it is now, so I can truly say it didn't bother me a lot. Of course I wished that I could run, but I still had a lot of friends back then so life was great.

I wish I could walk more now than then.

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It sucks. I can't do things like go to the toilet or get in the shower on my own. I try not to move from place to place because there's always someone who has to move me.. and I feel guilty.

Walking, if anything, is something I wish I could do. Even if it hurt as much as it used to.. and I'm telling you, it was TORTURE when I used to have to walk. I'd love to feel that again.

How do you deal with people who make fun of you if such people exist?

I try to ignore them. It gets to me for a while, but I also know that they're just jerks and that their motive is to get me sad, so I can't let that happen. When they do it right in front of my face I act like I can't hear them- as if I'm deaf or blind from their existence. Most of the time they stop once they see I'm not reacting, but there are the jerks every once in a while who just don't stop.

I know there's a reason for my existence. I've been in a coma, had pneumonia dozens of times, had an asthma attack where I had to be taken to the hospital by care-flight, had collapsed lungs, but I still keep bouncing back.. I know there's a reason. Even if I haven't found it yet I know there's a reason I'm breathing.

What form of MD do you have? My brother has HIBM and I know the struggles. Stay strong! Never know what cute could be out there in our lifetime!

Ullrich Congenital Muscular Dystrophy. It's one of the rare ones out there. I was misdiagnosed with Limb Girdle MD until I found out about Ullrich & got a skin biopsy.

Please be there for your brother. It's not an easy road but so much better with someone else. Thanks for your question.

I was wondering too. I love someone with SMA.

I have Ullrich Congenital Muscular Dystrophy. It's a lot rarer than SMA. I have a lot of friends with SMA. I've also lost one of my best friends from SMA. It sucks.

What keeps you going every day?

The fact that I was once happy every day- so I know it's possible. The "want" to get back to that place. Knowing I can make a difference in someone else's life, even if my life isn't that great.

No questions. Just wanted to say I hope you get better and you find a right guy in the future. Take care.

Thank you. I hope to keep as much health as possible over these years. I hope to be humble and brave. I know there are obstacles I'll have to go through that I never imagined, so thank you.

Have you ever used your handicap to pick up women?

I'm a heterosexual female. (Surprise!)

Ever use your handicap to seduce dudes?

Mm, nah. I'm lucky if a dude talks to me.

I'm sorry to hear that :( that was a jerk thing to ask in hindsight

Mm, I didn't take it personally. Don't feel bad. I did say AMA. Just know that not all people with disabilities are open for AMAs from strangers in public.. also considering they won't know what an AMA is, haha.

No harsh feelings.

Can we go to a football game together, it would make parking so much better?

Hehe, sure. Just give me $1, so I can make a profit. We both win. :)

What is your opinion on obesity being considered a disability?

I've re-written this answer several times. All I have to say is that it matters on how they got obese. I know several people who unfortunately have to take steroids that slow their metabolism to extremes even though they only get 2,000 calories a day. I also know several people who "ate their way there" and have a real addiction. The question is, does having an addiction equal having a disability- and the inherent rights that others with disabilities they can't help (because of genes, trauma, etc) have? Very interesting debate.