IamA 23 year old girl with a neuromuscular disease that has confined me to a wheelchair all of my life. AMA!

Any tips on how to not be bitter and hate life? I was in an accident and I just can't get past this stage or see a future...

You have live one day at a time. I feel saddened by my experiences often, but then I think about all the good I have, all I can still do, all I might be able to do one day, all the love people have for me, and it makes me see that my self pity isn't important. The next day I may only think good thoughts. Just take it one day at a time. Things will look up, even at your lowest, there is some hope.

Is your boyfriend able to have sexual intercourse with you? If not, how does he exercise his reproductiveness (or how do you exercise your reproductiveness?)

Note: I do not mean to cause any offense by this question, but something I have thought of for a long time if I or a girlfriend of mine was physically unable to have sex.

My boyfriend pretty much described it all incredibly! I honestly love being able to enjoy sexual intimacy with him. If he's too tired for actual intercourse, or I'm too sore, I'm happy to be able to give him manual or oral sex.

If you have a relationship with someone who cannot have intercourse, you two will find a way to be intimate. Even though it may not be the "typical" way, if you guys love each other, you'll love it no matter how it works.

Hi, how do you feel about the future of SMA treatments?

My infant son was a type one who passed last week at 8 months. We were fortunate to get him into the SMN-RX phase 3 clinical trial and hope that his sacrifice might allow for you and others in the community the chance at regaining lost strength and give others a chance at a normal life.

I've got SMA Type 3, and honestly? I'm hopeful. My neurologist says that by the time I'm out of my 20s I might be able to walk unaided because of research and trials like the kind you contributed to. Thank you so much for doing what you did.

I'm so glad that there is hope. I'm really happy to see this on the front page of reddit. I regret that I knew nothing of SMA before our son was diagnosed. It is truly a nightmare condition.

We are giving everything we can back to the SMA community now and were blown away by the support of organizations like CureSMA.org and there new diagnosed survival kit and car bed.

Again thank you for all you are doing!

I wish more people could be educated before a situation like yours arises. My mother had three miscarriages before she had me, we think they were all SMA Type I, but there was no way of knowing at the time.

Hopefully this can educate more people, and will allow for more people to open up about their own disability!

I'm so sorry for you and your family! Thank you for the sacrifice you made, I think it'll be a help to a lot of children and infants with the disease! If it makes it possible for many to be strengthened and even walk, it is a cure in my mind. You are an incredible person to have done that for our community, and I know many people with SMA would want to thank you!

Props to you for doing this AMA! My husband has SMA type 2 as well, we've been together 34 years and have 2 grown kids. He's a writer, who went from using a pen, to pecking on a keyboard with a pencil, through the whole development of Dragon voice recognition. He also uses a mouth joystick for both his computer and his power chair. Have you done any research into further adaptive equipment so you can continue your art as you lose muscle? If so, what would you love to have?

May I ask how old your husband is? I'd also love to know how you guys worked out having children! My boyfriend and I are thinking of having children in the future, and there is always the worry of me carrying and the high chance of the child having SMA.

So far, once I can get into my wheelchair, I can use art materials at a slower pace. I heard of an artist, Chuck Close, who used a paint brush taped to his wrist. There's also what your husband did with his mouthpiece. Digital art is always an option too. I want to always try to continue drawing, it's always been extremely calming and enjoyable!

Exactly how rad is your wheelchair?

Quite rad! It can raise up and lean back! It can also go pretty fast! Lol. To be honest, it's just important to be able to get around nowadays. When I was younger, all I wanted was the fastest chair possible!

I met an 18-year old with SMA Type II in a pulmonology clinic just last week (I'm a medical student). What would you like your doctors to know about you? What can we do as medical professionals to make life easier that we might not have thought of?

That's awesome that you're working in a pulmonary clinic. It's surprisingly my favorite testing that I've had to go through. They make it fun to just breathe lol.

I'd like my newer doctors to look into my disease before they meet me. Sometimes when I get a new doctor, they are oblivious to what I can do. There are wonderful articles on the disease that can help. It's tough to be asked if I can try to do something that I know is impossible, but because they're the doctor they know best.

How did you and your boyfriend meet? Thank you for doing this!

We actually met on Omegle, the text chat part because we were on our phones. Two lonely people weeding out all the camwhore bots trying to find a real person to talk to, and she was actually my first match of the night. We got each other's Kik, then Skype, talked for months and months and after about a year I flew across the country to visit her for the first time. Month later I moved in! Both of our lives have improved greatly since.

When did she let you know about her disability?

I've been dabbling in online dating and haven't decided the best time to bring it up yet.

I was always afraid to tell people, because online you can just disappear forever. I also had a lot of people I thought I connected with stop talking after I told them. Many other horror stories I won't get into as well. I fell in love with him very quickly, and was terrified he'd disappear, but in the end it was better to tell.

If you keep trying, you'll weed out all the "baddies" and find someone wonderful and accepting. I don't recommend lying if you really like someone too.

Hi there :) Would you say that your college was accommodating to your specific needs? I know it can be a hassle sometimes to get the extra help, time, etc that you might need, and I was just wondering if you could talk about your experience in college in general. Thank you!

Thank you for your question!

The school I attended was very accommodating. They would try to make sure I had scribes, extra time for testing, people to help with labs, etc. The dorms were also very accessible, with automatic doors, roll-in showers, and even putting in a track system for my lift. I was away from home though, and needed PCA, which was the difficult part.

Forensic Science is very hands on, so I needed more than most schools would accept for accommodations, but the school understood that I was willing to learn everything anyways. Once I started getting sick I couldn't get out of bed very much, but they even tried sending people to my room to help me with assignments.

Have you developed specific hobbies ?

I'm sorry if this isn't what you mean! I would consider drawing/art to be my hobby. I love trying new mediums. I've worked with charcoal, graphite, acrylic paint, watercolors, ceramics, and photography.

Thank you for being so brave and doing this AmA! I am in nursing school and they drill in our heads the importance of body image, especially during the teenage years. How did your condition affect that? Did you go to a normal school and was your high school accommodating? What were some of the biggest challenges that you had to overcome?

Also, what were some of your "favorite" parts of your hospital stays? I don't mean to sound morbid but I do want to go into pediatrics after I graduate and I love hearing about what made those stays better for you so I can incorporate them into my career as a RN! Thank you!!

My condition affected my body image in a very negative way. I have a lot of body image problems because society has always said we need to be skinny and perfect. I was afraid of meeting guys because I wasn't "normal." I feel extremely lucky to have found someone as caring and accepting as my boyfriend! I went to all public schools, and the accommodations were the best they could be. That being said, the best was pretty bad. The elevator broke, and it took until Election Day (we started in August) to be fixed. I had to go outside to get to the upper classrooms. One of my aids led me down a spiral to almost commuting suicide, and they wouldn't give a new one until the next year. They did get in trouble for that though. I made sure my last four years were with someone I could trust to be there for me. Some of the biggest challenges were in speaking up about what I actually needed. It took until I graduated high school to be able to. I'm finally able to tell my professors what is needed, and am still terrified every time.

My favorite experience in the hospital was meeting a few old high school students as my CNA/nursing assistants! It was nice to see them again in a less dog eat dog situation and they were all very helpful and nice. I just want a nurse who is nice. I understand how stressful the job is, and how rude patients can be, but it always hurts to have someone rude or rushing when I'm in a lot of pain or discomfort. Also, it's not morbid at all!

What's your favorite video game?

That's very difficult lol, I would have to say Silent Hill and the Sims. I do play many different types of games though, I love to have diversity!

I have often heard the disability advocacy community does not use the term "Confined to a wheelchair," as they see it as something liberating and improving the autonomy of the user. What are your thoughts on this?

Could you elaborate on the question? I'm not exactly sure what you mean by it? I apologize if it's a simple question, I'm just very confused. Thank you!

Edit: After reading the above comment, I understand what you mean. I guess I don't feel confined to it, but it's one of the only terms I've heard used in the past. What I meant by it, was that it is my only form of mobility. I must not be up to the new vocabulary. Wheelchair user is a much better better phrase to use.

How easy is it for you and your family and boyfriend to go on holiday somewhere? Are there enough holiday places which are accommodated for your needs? If there is not enough, would you like to see more places with better accommodations for your needs and where?

It's actually very difficult to travel. Most hotels have some accommodations, like roll-in showers, larger rooms, lower table/counters, etc. I use a track in the ceiling with a lift to move me, because a Hoyer Lift doesn't fit in most situations. Hotels don't have either, but I'm lucky enough to have a VERY strong father who can lift.

As for places to go, it's surprising how few accommodations there are for someone with severe physical disabilities, especially with how much ADA there is! I've always wanted to be there when the ADA "builder" are saying something is up to code. I've been told restaurants are accessible, only to get there, and see a large step. Most accommodations are towards people in manual wheelchairs or even elderly. I understand it's because we're a very small minority, but it'd be nice to be able to visit more places.

Did the spinal fusion help? How far along did you get in college before you had to leave?

The spinal fusion helped immensely. My lungs were going to be crushed overtime, so it was definitely a necessary surgery. There was only so much straightening that could be done before they cracked my spine, which is why my x-rays still show a curve.

I ended making it to my final semester in 5 years, (Yeah! Super senior! Lol) which made it very tough to have to leave!

I have SMA type 2 also. What type of chair do you have? do you have a favorite brand? Least favorite?

I currently have a quantum chair, and it's the best I've ever had. Permobil is the worst, as a malfunction caused me some broken bones.

I use invacare, it's the only one I've ever had and I don't think I want to switch.

I'm so sorry that happened to you, it's awful to have medical equipment break when it's something we rely on so heavily! The worst thing I've had is a dead control. A broken barring is horrible too. I was in college, with my chair screeching and clacking down the quiet hallways lol!

Thanks for doing this, you seem like a cool person.

I do have a question, though. Aside from some sort of exoskeleton to support you while walking or an advanced medical treatment that would actually cure your disease, what would make the biggest difference in how easy it is to go about your daily routine, either medically or socially?

Thank you!

A big thing that helped in college was people's willingness to help with small tasks like opening doors and grabbing my books/papers. It's amazing to see how helpful most people can be! It always saddened me to have a person see me, then shut the door in my face.

As for medically, it would be so helpful if insurance companies could work with me more. My disease isn't fake, and the things I need aren't ridiculous. I have received many denial letters for things that I need right away that need doctors letters, proof of everything, etc. I know it's necessary because of how much deceit there is in the system, but people who have mental and physical disabilities are seriously in need.

Do strangers ever approach you and ask you questions about your condition? How do you feel/handle that if it happens?

I'm sorry if thats an inappropriate question, its just something I have always wondered about.

All the time! I never mind answering if they are respectful and ask nicely. The ones i dislike at the ones that start blessing me and saying they feel sorry and how much I need Jesus lol.

Thank you for your response to this! It's exactly how I feel too! I was just answering a question about my faith and how conflicting it is. I went on a rant a while ago about someone blessing a girl and saying how her trauma just proved their belief. It disgusted me that they used this girl to show how faithful they were!

What's you're personal favorite thing about life? Like what do you do and makes you think "God damn aight life great!"

My boyfriend, he makes everyday worth living. Anything we do makes me feel like "God damn aight life great!" :)

Have you ever swam?

Just curious about your experience with water, as I've heard of some physical therapies done in water and it just popped into my head.

Swimming is incredible for someone with SMA, it's wonderful for the joints to move, and one of the only ways to exercise! The only problem with this lately, is that I had a bladder surgery which make my navel/belly button a port for me to catheterize. It's always open and I don't want to add extra foreign bacteria to the port, since it has already failed once. I'll try waterproof bandages one day, but it has definitely lessened my love of swimming.

how strong are you? what are everyday tasks you can do? what's too much?

I'm considered to be very weak. I can feed myself, use my phone and laptop, hold about a pound in each hand, write, mostly simple tasks. If I'm really exhausted, I need help with all of those things. I do need help with preparing food, doing normal chores, using the restroom/shower, transportation (though I can get around short distances in my power wheelchair).

What do you want to do for a career?

I would love to have a career in Forensic Technology. I was hoping to finish my degree in Biology and Forensic Science, then pursue a masters degree in Forensic Technology. Before I got sick, I was planning on going into the FBI.

What nation are you in? Did you or your parents have to pay for the wheelchair? How much was it? Do you have lots of medical expenses? I wish you all the best.

I live the USA. My parents did not have to pay for my wheelchair, but if there is anything special for me, we have to find out if our other insurance will cover. It costs around 29,000, more expensive than a car, but it is my legs. I have many medical expenses, luckily most are covered by our insurance.

Thank you so much!

Do you have a mutation to the SMN1 gene?

I do! Although it's unknown whether my SMN1 gene is just mutated or completely absent.

Assuming you were able to compensate for the potential lack of bone density, would you ever consider becoming cyborg with one of these?

I've been told someone with my disease would have difficulty using an exoskeleton due to our balance problems and contractions. If it was possible, I think I'd feel uncomfortable, since I already dislike wearing too many layers. It seems bulky, and I'm very tactile sensitive.

What gets through the day?

Not to be a dick but want to know what gives your to strength to push through everyday.

No, I completely understand your question!

I said this in another comment, but to be honest, my boyfriend gets me though each day. I love him more than anything, and just knowing if I give up in any way, I'm giving up on my love. I think about all the things we want to do in the future, like marriage and children. Caring for and loving each other is what I live for, and it's all I need to get me by!

Would you trade your wheelchair for an implant in your brain if such a thing were possible and allowed you to walk and move around normally?

I think it would be wonderful to be able to walk normally, if it was possible! I am very used to my wheelchair, but anything that could help mobility would be fantastic. Exoskeletons are an exception, because I think I would feel confined in such a large suit.

Word of advice. Get rid of the whole "proof" thing and just post pics of yourself. You don't need to use the term proof because your not asking for anything other than conversation.

Thank you for the advice, I just changed it now.