IamA fully independent person with Arthrogryposis. AMA!

I have the same condition! How the hell do you get yourself dressed? I can get underwear and elasticated pants up but I have no clue what to do with upperwear and jeans that have buttons or zips. I'd love to hear back from you, you could make me so much more independent! :)

I'll help you out since I have AMC as well. Your condition sounds worse than mine, but, here's a few tips:

1. For button up shirts, don't unbutton them all the way. I put my arms through the sleeves and then use momentum to get it over my head. Or, I push my head through aimed down then lift up and gravity does the rest.

2. Try to do stuff while lying down. Then slowly lift clothes up. You can shift around a little to slowly raise clothes up or down. I did that after a surgery.

If you tell us a little more about your condition, I can help you come up with more ways to do things, as the degree of how shitty your AMC is varies greatly.

I have almost no use of my arms but my legs are fine. I'll try that floor technique you suggested. Without assistance I can't imagine how I'd ever deal with buttons in all honesty.

Teeth and lips my friend, teeth and lips.

I see he's learning from his mother.

hahahahahah you ass!

Hey! I'm half an internship away from being an occupational therapist, so this is right up my alley! There are tons of adaptive devices that may work for you, but I saw further down that you have limited use of your upper extremity. I recommend seeking out an OT with an Assistive Technology Professional (ATP) specialization. It's their job to come up with all sorts of assistive technology (from button hooks to high tech switches) to help you live as independently as possible! Here's a site that will list ATPs in your area! Good luck!

Hi! Thanks, I'll have a look :) I had OT throughout elementary school, but by the time I hit 5th grade, I was giving the therapists ideas on me, and other students haha, so after a while I stopped seeing them.

DisabledJew hit it on the head. Message me and we'll brainstorm!

Kind of bummed this one wasn't answered, hoping OP gets back to you!

Which one did you want answered? lol I've been out all day and am just catching up

There's a woman in my neighborhood who has no arms. A couple of times I've seen her eating in restaurants, deftly maneuvering the fork with her foot. It's pretty awesome.

That's a whole new level of awesome. I taught myself to use a fork with my foot just in case I lose my arms, but I don't know if I'd do it in public.

just in case I lose my arms

yeah, those darn things always falling off.

im dying

Was it difficult to overcome your condition without assistance at first? If so, how long did it take for you to become fully independent?

It was at first, mostly because it's a fairly rare disability. I wasn't supposed to be able to walk, feed myself, etc. The challenge was adapting everyday things like dressing/bathing, doing kid stuff like sports and such. A god example of devices I use: I have a small stick aound 1 1/2 feet with a hook on the end. I'll grab that and hook the waistline of my boxers and pull them up. I have a coat hook on the wall around waist height that i'll hook belt loops to to get them above my waist. All of this is stuff I came up with out of sheer necessity. I wasn't fully independent until about 12.

How I imagine you: http://i.imgur.com/byl0CYL.jpg

Which is awesome!

I want that on a shirt!

/r/techsupportmacgyver might like a word with you

send him my way :)

How long does it take you to get dressed?

It depends really. Winter time, when I layer up more, like- 10 minutes? Summer time- 5. If I partied the night before? 3 hours.

You ever consider moving to a location like LA with consistently warm weather so you don't have to spend too much time dressing? Then again, you'll probably end up partying more. Nevermind, the math doesn't work out.

I was in Reno until recently. talk about express dressing weather. Loved it.

Hey man, I am a mostly healthy person and I wasn't fully independent until i was about that age. :P

hahah glad I'm not alone!

[deleted]

Jesus dude, have some respect.

Do I even have to guess what he said?

Made a T-rex joke and then asked him how he wiped his ass.

Sometimes when I come across things like this I wish I were religious simply so I would believe in some kind of inescapable justice. I am all for a certain type of trollery (as my comment history and general character makes clear) but making unprovoked attacks, protected by anonymity and distance, upon people who through no fault of their own are struggling with conditions like this, illness, bereavement or some other huge challenge really does represent some of the worst aspects of humanity. It sickens and saddens me in equal measure.

Ehh, I wasn't offended. The T-Rex joke is kinda funny.

One of my close friends has arthrogryposis multiplex congenita. He uses similar tools to assist him as you've described. He's a bit of a tinkerer as a result. Recently, he got a car modified so that he could drive it. It's quite a setup.

I know it's a super rare condition. Have you ever met someone else with the same condition or perhaps considered reaching out to younger people with similar challenges?

In person I've met 2. I have definitely considered it, and i'm currently working on an autobiography (a bit narcissistic I know) but that's why I'm doing the AMA, to gauge interest in such topics and offer help :)

No real proof and two answers the are the same after an hour. Is this legit? Can we get a more legit proof that include IAmA and the date?

EDIT: I believe him now.

Sorry, its my grandads birthday and I've been out. If there is something youd like me to add I'd be happy to. A video of me drumming perhaps? I'm also on Periscope.

what constitutes proof from /r/IAmA wiki in the sidebar.

Thanks! Sorry its my first AMA. My twitter is @cmickg, and I actually posted something about my AMA. ty!

What would you say is the task that still causes the most trouble?

Hmmm, great question. I'd say shaving. More specifically, making sure my beard is even on both sides when shaping it. No joke, last week I sneezed while trimming, and had to bail on the beard. I'm babyface now

Gonna grow it back? It's a great beard!

hell.yes.

Who is your favorite drummer, and why is it John Bonham?

My favorite drummers are Mitch Mitchell w/ Hendrix, Chris Phillips w/ Squirrel Nut Zippers, and Chad Sexton, 311 :) Who's Bonham? ;)

My father has the same condition and was told he would never be able to walk or even drive for his entire life. He can do just about anything any 'normal' person can do, just differently. I was wondering if you were able to drive with moderate accomodation?

My father uses a tri pin spinner with a wrist sweatband wrapped around the two bottom prongs (in the picture) while resting his hand in the center and using the leverage he gets on the wristband to steer.

I saw other people in this thread who also have this condition, so I thought I might be able to share one thing that has worked for my dad. Thanks for doing this AMA!

I use wristbands to hold my drum sticks! Driving though- nothing on the wheel. I have a small stick i use to reach the door handle and window/headlight switches. Also added a c-clamp to my wiper lever. Wayyyy easy to twist now.

Can we see one of your drawings?

Sure! http://imgur.com/w0XmjAU This is something I had sketched out, and then went into Illustrator to finalize. I used Adobe in conjunction with a bamboo tablet

Let's make it happen

Done :)

Do you have any unique adaptive devices in your home? If so what are they and how could they be beneficial for everyone?

A good example of devices I use: I have a small stick aound 1 1/2 feet with a hook on the end. I'll grab that and hook the waistline of my boxers and pull them up. I have a coat hook on the wall around waist height that i'll hook belt loops to to get them above my waist. Most of my adaptations are related to my reach and strength. If there is something specific you need help with I could rainstorm with you. Most of the ways I figured out how to do things would be beneficial to those with low upper body mobility and strength :)

How often do you pretend to be a T-rex or other dinosaur? Thanks.

Daily. It sucks when people stand still. I never see them

Masterbating? Hard, easy? I am sure 13 year old you figured it out pretty quick.

hahaha i adapt everything so- fairly easy. But maaannnn when i first started my box spring was thrashed :P hahah

How do you wipe?

I actually had my colon taken out due to an unrelated disease, so i have a very small pouch on my stomach, so theres no need to wipe. Great question though

My sister is really sick (Crohn's) and is waiting to have her colon out. Was it worth it for you?

I'd do it again in a heartbeat.

How is the dating world for you? Are you single?

Dating is fine actually. Initially it's tough because you tend to be focused on whats different about you, and how others see you. Once I decided that didn't matter I was just myself, and have been quite successful if I may toot my own horn :P I'm newly single- I just moved fro the west coast to the east coast and we decided to break

My cousin is currently 4 years old and she has AMC. Is there any advice you have for young people who have it and are learning to live with it?

Oh wow! Yes absolutely. Without know the degree of her condition I'll just assume it's similar to mine. First bit of advice, and this is to the parents: Don't be overly helpful. You'll find that you will want to do quite a bit to make her life easier, and that's natural- but while you're making it easier now, you're extending the time that she's willing to depend on you, and when shes older and wants independence, she'll have far less to worry about if she has to figure things out as a kid. It sounds harsh, but my parents are superb, but they babied me a lil, so i think I could've done more sooner if they flat out said 'figure it out'.

To the lil girl! you're wonderful, and you have a challenging road ahead, but I think you'll find that you'll be far more resourceful than most growing up. You'll always be adapting things, and I envy the feeling of accomplishment you'll have when you put on your own socks, or wash your own hair. Don't take no for an answer. Just don't. If you want to do something, do it! Technology these days can do wonders, and if it can't? Call me and we'll figure it out. It's your life to live and ultimately you'll have to decide how much you want to live it. Lastly, don't let people pity you, and brush off the insults. (after you get out of elementary school, those die down) most of the kids that will make fun of you do so because they're lacking in some fashion. When all is said and done they have no idea what you go through and how you live. It's your life baby girl! I hope you choose to take on the world.

Are you me.....? I have arthrogryposis, play drums, live independently. Wow. Awesome your doing this. Not many people know about our condition.

really?! nice dude!

How does the job market look for people with this condition? Has your condition been a hindrance for finding work?

Good question! Mentally I'm pretty well above average (from what docs tell me) and I present myself in that way. I'm sure it's different for others but, if we were to interact personally, it wouldn't take long for you to see that I can do the job I'm applying for. I just haven't landed that bricklaying job yet. Stay tuned :P

Is that your girlfriend? How did you meet? Are you able to do regular sexual activities?

lol that's my mom. I love sexual activities! Just not with mom. Oh- I can def do sexual activities and positions. I dig the praying mantis :P lolol

What is the hardest part about everyday life?

What do you have to say to people who seem to pity you or try to feel sorry for you?

The first question is tough. I dont consider my life hard- It's just something I do. If I were to break it down activity by activity and analyze, I'd say getting in/out of my truck is probably most taxing. People do tend to throw pity around, but it doesnt take a long convo with me before they realize it's misplaced. If they don't, I just tell them not to be sorry. I'm pretty direct lol

Do you exercise? What sort of physical activities do you do? Where do you work, and do you need any accommodations there?

I do! I walk/jog around 2 miles a day, and gradually increasing distance, as I'm training for a 10K I want to do this fall. I do crunches, sit ups, leg lifts and am starting to plank on a stability ball. Core core core!

Do you get angry when able bodied people throw their lives away and complain how they can't do things?

Absolutely. I know things are all relative to the person experiencing them but damn, some people...

I'd be direct, so pardon me, but does the disease affect the size of your genitalia and private life? Excuse me once again for being so direct. Keep it up, dude!

no worries man! I don't actually know. Maybe the disability DID make my johnson huge :P ok but seriously, thats not affected at all

So incredibly random but... Are you from northern Virginia??

yup! you've seen me? was i sexy that day?

Cliff. I knew it. We went to HS together; I think you were a junior when I was a freshman

Did we hang out? Who is this? lol

No way, thats craaaazzzzyyyyyy!

Holy batman dude! What was your proudest 'I can do this completely on my own' moment? Do you share your experiences with others who have arthrogryposis? I bet a lot more people want to be independent than they currently are. Thank you for doing this AMA :)

Definitely moving across country to the west coast, leaving the safety net of my family on the east coast. That was rad. I currently don't share with others, but I'd like to start!

What's one thing you can do that people without disabilities can't?

grab boobs when i give hugs and not get in trouble

I don't know if anyone has asked, but how are you typing right now?

Its kind of hard to explain. I have no adaptions. I use the outside of my right wrist to tap keys, and my left elbow for shift, alt, ctrl and such :)

Do you feel driven because of your disability? Specifically to prove doubters wrong?

Yep! I play drums because the dude at guitar center said he couldn't see how it could be done. about 6 years later, Roland retweets one of my covers to 7,000 followers :)

I see your friend (girlfriend? Sister?) is an Alabama fan, how about that game last night?

lol mom. she was pissed

Do you have a job, girlfriend, and what's your favorite hobby?

yea! I work at CustomInk, best company ever. I'm single, newly. Hobby? i like to write, and I'm a comedian on the side

Have you ever had kids come up to you in public and ask about your condition?

Yep! It's funny seeing how they react, and it gives insight to how much they've been exposed to. Funny story- I was going up an elevator once and it stopped to let a woman and her son (prob 6 or 7) on. as they're getting on the kids telling mom how hes scared of aliens and hope they never come to Earth. He noticed me and stared a bit, and asked "why are you like that" the mom blushed and as the doors opened to my floor i said "aliens". look on his face as i left was priceless.

Any surgeries? What was offered to you growing up? Have you considered a latissimus dorsi transfer or a tendon transfer for increased flexion?

Not until later on, and by that point I was well on my way. I had splits i'd sleep in as a kid for flexion, and leg braces for stability. both are gone now :)

Would you become a cyborg if the chance was offered to you? IE; like, some sweet cyborg arms.

Interesting concept, but no. I've spent my life leaning these things, and I don't want to relearn everything.

What positive have you taken from your disability?

Thanks for doing this!

There are a few for me: Tenacity, first. Growing up like i did really made me not take things for granted, and go after whatever i wanted or needed to do. Humbleness next, for no matter how much I've done, I try to keep in mind that I still can do way more. Last, a solid sense of gratitude. Without support from family and friends there's no way I'd be where I am today. It reminds me of how much they sacrificed so I'd have the oppurtunities that shaped my character

Have you ever thought of posting drum covers to YouTube?

This guy just posted his Foo Fighters cover over in /r/drums. Come join us!

I have some! look up CmickG on youtube ;)