(Update) IAmA now 21 year old Male diagnosed with Spinal Muscular Atrophy Type 2 at 18 Months. AMA!

What's your daily routine? What's the hardest part about your life? Also, how often do you get to talk to women in person?

Daily routine is fairly easy actually, as I spend 95% of it on my PC. Generally it starts by me waking up and having my live-in caregiver get me dressed/groomed. He takes me to the bathroom and gives me my morning meds. Afterwards he gets me in my wheelchair and on my computer and gives me a few sips of water to clear my throat. After that I only really need help whenever I need a drink, bathroom, or we leave. The bed routine is fairly similar to getting up, albeit backwards.

The hardest part actually tends to vary on my mood and environmental factors. Sometimes it's frustration over not being able to swallow fluids well. Otyher times it's me having to watch people as I can't always join in. Some days it's sexual frustration as I can't self-pleasure.

As for women, recently it's been rare as I don't go out much. Usually it's if I have a female caregiver, otherwise hardly ever.

Thanks for asking!

Hijacking this thread because top level comments need to be questions:

I don't have a question, I just needed to say this. My 2 year old nephew was just diagnosed with MD. I just want to say that I highly respect you and absolutely have no idea what you possibly go through on a daily basis. Reading your AMA really gives me perspective on how lucky I am to be an able-bodied person. I hope my nephew can grow up to be as strong as you are.

Thank you! That really means a lot.

Thanks for answering!

I have another question: what can I do to help someone with muscular atrophy or other similar muscular diseases?

Honestly, just awareness and donating to an MDA charity is enough! That and awareness for accessibility.

Dick works?

Yes, thankfully.

You seem very positive, but you also said that you take meds for depression. If you are willing, can you please describe some of your experiences with depression and how you stay positive?

Thankfully my depression never reached the point of wanting to self har,m or suicidal thoughts. It basically stemmed from a lot of physical self hate and fear of the future. I hated how my worthless and weak my body was, and I was scared at how fast my condition would progress. Growing up, I was never the type of person that went "I may be bedridden by 30, lets work and get a career in case it doesn't happen!" I always was afraid of if it did happen. To the point I never wanted to do anything but play, to enjoy what life I had. I kept my depression to myself till I was 19, afraid people wouldn't understand. Once it got to the point that I began flat out ignoring homework I knew I needed to get help. So I did. I do my best to live life, it just gets hard when you don't know how fast it'll progress.

When you eat, Do you taste it?

Nope, since the tube is in my stomach, no taste.

You said you're a fan of high fantasy, have any favorite authors? (mine is David Eddings)

Probably Patrick Rothfuss or Brandon Sanderson. I have a thing for unique magical systems.

Kool, I've never read either of them, but after watching Rothfuss on Tabletop (on Youtube) I might have to give him a try.

Please do! The Name of the Wind is an amazing book.

Kool, thanks for the recommendation! And if you've never read Eddings, check out The Redemption of Althalus. It's a stand alone novel, not associated with his usual multi-book stories.

Will do! Thanks for the recommendation yourself.

What do you like to do and what your hobbies?

I love to game and watch movies/anime. I'm a huge horror buff so I do my best to try to find lesser known horrors to watch. Either indie or foreign. I love to read also. Big on high fantasy. Manga is great too.

Favourite manga?

My favorite manga is actually a Korean Manwha called The Breaker.(here) As for a Japanese Manga? That's a tough one. Probably Ubel Blatt. (here)

What small(or big) things in life always make you smile?

Hmm. I love animals, so my cat never fails to make me happy. As for big things? Advancements in accessibility technology always hypes me up.

Do you ever miss the taste of food or put it in your mouth simply to taste it? Do you ever drink alcohol?

Food honestly makes me queasy nowadays if I smell it too much. I miss it yes, but I prefer to just watch it on TV. My hunger has been replaced by thirst, so I take drinks a lot.

And I actually hate the taste of alcohol.

What do you want to become?

I hope to become a good enough 3D Animator to work on a big movie or game.

Is it hard to make connections with other people? I imagine you would get pretty lonely sometimes,especially living on your own.

I have a roommate who is my live in caregiver and a great group of friends who visit a lot. But it can get fairly lonely at times, yes. I do my best to stay social online though.

As for connections it really depends on the person involved. It can be hard, yes.

I'm glad to see that you're still doing well.

Thoughts on the loss of Gwendolyn Strong?

It's rough to hear about but it's amazing to see that she survived so long with Type 1. It's a terrible condition.

What remains to do on your bucket list?

I've never actually had a bucket list, surprisingly. I try to just live day to day, because I never know how fast my condition will progress. So if an opportunity presents itself to do something new and fun, I usually try it.

But why male models?

.....But why male models?

How exactly do you deal with the sexual frustration? What keeps you going?

Stubbornness honestly. I keep hearing about how amazing pleasure feels and damnit if I'm not going to feel it eventually.

Are you familiar with the work of Harriet McBryde-Johnson?

I am! She did great things for the disabled community.

Yes, I've enjoyed her writing and her talks.

What do you think of her advocacy for enhancing autonomy for disabled people? What more do you think we should do?

Honestly, anything to increase ease of access to those with physical limitations. I'm not sure of specifics though.

On the subject of autonomy, I was wondering if you had any opinions on the ABLE Act or issues with financial security in the community more generally?

I actually haven't kept up much with either of those, but those who have issues working definitely need more help.

Sorry, this proof isn't proof. Sufficient proof, please?

Updated proof with a picture/sign!

Thanks!

Of course! I don't want people to think I'm lying. Sorry it took me awhile to get it was, was taking a nap.