Hello all, I'm still here! It's been nearly 3 years since my last AMA but I figured I'd let you all know how it's progressed and that things are actually pretty good! I have now moved out on my own into an apartment and have gotten meds for my depression/ADD. I am a fair bit weaker and need more care, but I'm still kicking.

Short bio:

I was born a normal child, or so my parents thought. I was growing normally until I was about a year old to where I was still crawling and not even close to walking. By 18 months I was still crawling and my knees were starting to drag on the floor. My parents knew something was wrong and took me to a Doctor a had me get a muscle biopsy. It was then I was diagnosed with my disease. As I aged my state progressively worsened. By the age of 4 I was confined to a wheelchair. At 14 I was cut off from solid foods and am now fed liquids at night through a small gastric tube in my stomach. I am typing this using the on-screen keyboard with a mouse as using a keyboard is nigh impossible for me. I do type a bit slowly but I will answer any questions, just give me time!


Updated Proof:

Last AMA:

Comments: 50 • Responses: 24  • Date: 

vegasmel10 karma

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?

Icaryn18 karma

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!

Lordic7 karma

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.

Icaryn4 karma

Thank you! That really means a lot.

vegasmel6 karma

Thanks for answering!

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

Icaryn4 karma

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

RubberDong5 karma

Dick works?

Icaryn6 karma

Yes, thankfully.

Redfern137 karma

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?

Icaryn10 karma

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.

relatorq6 karma

When you eat, Do you taste it?

Icaryn8 karma

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

rikskul4 karma

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

Icaryn7 karma

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.

Ironcymru4 karma

What do you like to do and what your hobbies?

Icaryn4 karma

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.

Edgefish3 karma

Favourite manga?

Icaryn5 karma

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)

ValthaneKarnex4 karma

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

Icaryn7 karma

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

ValthaneKarnex2 karma

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

Icaryn4 karma

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

ValthaneKarnex2 karma

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.

Icaryn2 karma

Will do! Thanks for the recommendation yourself.

ben_blakeley3 karma

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

Icaryn6 karma

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.

doesntthinkmuch3 karma

What do you want to become?

Icaryn8 karma

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

comrade_ouroboros3 karma

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

Icaryn4 karma

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.

nauticalfiesta2 karma

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

Thoughts on the loss of Gwendolyn Strong?

Icaryn2 karma

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.

Tucana662 karma

What remains to do on your bucket list?

Icaryn7 karma

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.

1tudore1 karma

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

Icaryn3 karma

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

1tudore1 karma

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?

Icaryn2 karma

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

1tudore1 karma

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?

Icaryn2 karma

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

killacam9251 karma

But why male models?

Icaryn2 karma

.....But why male models?

gothicgoku1 karma

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

Icaryn2 karma

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

relatorq-1 karma

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

Icaryn5 karma

Updated proof with a picture/sign!

relatorq1 karma


Icaryn4 karma

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.