I am Donavan and I have SMA II leaving me wheelchair bound. SMA II is part of a group of disorders that affect the control of muscle movements. It is caused by a loss of specialized nerve cells, called motor neurons, in the spinal cord and the part of the brain that is connected to the spinal cord (the brainstem). The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement. I have feeling throughout my body.

My Proof: https://twitter.com/trollzaur/status/459972080440586240 [IMG]http://i.imgur.com/2ypiURg.jpg[/IMG] [IMG]http://i.imgur.com/GZD1Z9S.jpg[/IMG] [IMG]http://i.imgur.com/IQJwcPt.jpg[/IMG] [IMG]http://i.imgur.com/SZLhISx.jpg[/IMG]

Comments: 201 • Responses: 70  • Date: 

ClinTrialFan83 karma

Hi Donovan! I have a slightly weird mix of questions: I work in a lab that does research into SMA, and I don't get many opportunities to talk to patients. I'm really curious about what (or if!) you think about the aspects of SMA treatment/research that form a big part of my life.

1) Are you aware of -- and do you engage with -- SMA patient communities / support groups like families of SMA or The Jennifer Trust? What sort of impact, if any, do they have on your life?

2) There are a couple of early-stage clinical trials going on, for example the ISIS trial based on RNAi and the AAV gene therapy trial out of the Nationwide Children's hospital. Had you heard of these? Are they interesting for you to follow along with, or do you prefer to wait until there's something that can actually help patients, or even you specifically?

3) Any new trial needs volunteers, who expose themselves to some risk and may never benefit from the treatment. This is especially true of the Phase I "safety" trials where doses are generally very low, and not expected to have an effect. (NB: patients do occasionally benefit from the low doses in a Phase I trial, but it's definitely not something to bank on). In the specific case of the gene therapy trial, being a part of this early "safety" trial means that you might never be able to be given the actual treatment at full dose, when (if!) it has been perfected. It's an incredibly brave and selfless act, and not something that I'm sure I'd have the stones to do myself. What are your feelings about clinical trials? If one came along that could help you, would you consider it? What about one that probably wouldn't help you, but might help future patients?

(NB: This last questions is totally speculative; I don't know of any trials in the works aimed at Type II patients. I'm not saying that there definitely aren't any, but I AM saying that I don't know about any)

Those questions are long and a bit involved, sorry! Like I said, my entire work day is spent thinking about SMA as a biological system, but I've only met a tiny handful of actual patients, and all very briefly. Hopefully my perspective doesn't come across as too weird as a result!

I will say though, that the SMA patients I met were pretty inspiring - amazingly upbeat and friendly, even to a lowly labrat like me. Thanks for the AMA!

CharlesButtlet24 karma

I believe my mother is aware of the families of SMA.

But as far treatments a other stuff goes I'm practically clueless to them. I guess I am okay with how I am. It isn't always easy but it's okay. So I don't know if I would want it take a chance with it just being a little bit better but then a chance of it being a lot worse if anything went wrong.

3AlarmLampscooter3 karma

Clinical trials have come an extremely long way recently when it comes to patient safety. While I'd definitely be cautious, I absolutely would not discount them without serious research.

In most cases the risk is well worth the reward.

CharlesButtlet2 karma

I suppose I'd be too nervous of something going wrong. I'm okay with everything now but if it got worse from something it would be difficult.

OldMateMyrve49 karma

Hi! I'm currently studying sexology and am actually writing an assignment on the sexual need, desire, and rights of people with disabilities or debilitating health problems.

I hope you don't mind me asking as I realise this subject may be taboo to some people, but I'm curious about your sex life and sexual satisfaction in life: Do you maintain any sort of an active sex life with yourself or with other people? In response to your answer to this question, how does that make you feel?

You can answer with as much or as little detail as you'd like. I appreciate any response :)

CharlesButtlet132 karma

Well I guess starting with I do get erections just regularly as any other guy. I am physically unable to masturbate but I do have a healthy and very active sex life with my girlfriend.

I've only been with 2 people and I was really worried that my limited mobility would be a major strain on sex and that they would be upset that they are doing the hard work.

But luckily, one of the things of my condition is my tongue muscles are sort of constantly moving and, without too much detail, let's just say that is not a bad thing lol

So with that on my side and the use of some toys I have actually become my girlfriend's favorite because I am the first of all her boyfriends to get her to climax lol

Luke_Poley80 karma

DON'T BE HUMBLE ABOUT IT MAN. OWN IT. OWN YOUR TONGUE MUSCLES YOU GLORIOUS BASTARD.

CharlesButtlet25 karma

I am good at what I do:)

sanderson227 karma

is that your gf in the last pic? good ama.

CharlesButtlet10 karma

The lady in which I am holding hands with is indeed my girlfriend:)

runslowfox5 karma

You can take away a man's waking ability but that only strengths his tongue, like blind people with amazing hearing!

CharlesButtlet6 karma

This made my life.

runslowfox3 karma

I'm glad I could make your life!I have MD and use a wheelchair 24/7...shit, that got awkward real fast!

CharlesButtlet2 karma

It is only as awkward as you make it:)

Cytria3 karma

Get it Donavan ;)

CharlesButtlet2 karma

Oh don't worry I do :3

bobroland34 karma

No questions, I just wanted to thank you for doing this. I lost a daughter to SMA I. It's been over a decade and I can still feel the last breath she took, against my cheek, years and years ago. For being the number one fatal genetic disease in infants, I hate that more people aren't aware of it. Doing an AMA on this subject is a great thing. The sad fact is that SMA isn't "glamorous" enough for it to get the funding it deserves.

CharlesButtlet23 karma

I am truly sorry to hear that about your daughter... My mother was told that I wasn't going to live past a year. It really isn't a illness that gets attention it needs.

mindnektar24 karma

How will this disease progress for you?

Awesome pictures, by the way. You've got a very infectious goofy smile!

CharlesButtlet51 karma

My disease does make me progressively weaker as years go by. And also gives me a seriously shitty immune and respiratory system. I get flus and pneumonias a lot so it sucks but there is not any use in crying over the future. Life is whatever you make it out to be and it is way too short to be sad all the time.

blushes thank you :) I like to smile lol

redfroggy2 karma

I had to do a paper about a disease/condition that affects one body system. I chose SMA because my husband also has SMA II. One of the things I found and it is so very true is that people with SMA are remarkably intelligent, outgoing, funny and just a delight to be around. My husband is all of these things and so are the friends of his who also have SMA. My guess is Donovan fits all of those things as well.

EDIT: Changed 'children' to 'people' because it's a more relevant word.

CharlesButtlet2 karma

I would love to read your paper :) and also thank you for thinking highly of me but I am rather lame lol

ConfusingUsername19 karma

Do you live with someone that takes care of you, or are you pretty efficient at taking care of things yourself?

CharlesButtlet28 karma

Well I live at home with my famly so my mom takes care of me

unboogyman11 karma

Have you ever looked into home health care? I also have SMA type 2. I couldn't imagine living with my parents.

CharlesButtlet7 karma

I have been struggling with the DOORS Program for a hefty amount of years now fighting to get the hours I need for a personal assistant so I can look in the living on my own. It's becoming a real struggle and very annoying I've talked to multiple people from the local, state government, etc.

unboogyman1 karma

That's a bummer to hear. I live in Indiana and somehow managed to get 16 hours a day of home care. The only problem is that I can not get a real job or I risk losing that. The system is really fucked for people like us. I wish you luck my crippled brother.

CharlesButtlet2 karma

Yeah the government really makes it hard for the disabled community to have a decent living. It's real bullshit.

off_my_oddy_knocky16 karma

I literally just started my shift as a caretaker for a person with SMAII. It's very humbling seeing the way that people with your disease live, but very rewarding by the fact that I get to see the people who are wheel chair bound live happy fulfilling lives. Thanks for doing this AMA, it's not always something thats easy to talk about.

CharlesButtlet10 karma

I hope your time with your client (that was the best word I could think of lol) really is a good experience. Everyone I met with my disease has been an incredible person. It definitely isn't always easy but you have to try and make the best of a shitty situation. I could sit and feel sorry for myself but it won't change anything so I try and just be happy.

CaptainRelevant6 karma

You're right about the incredible person remark. I grew up with a guy with SMA type II. One of my best friends, actually. He received two full-ride scholarships to a four year school; one for merit and one for his disability. He elected to take the one for merit to keep the one for disability available for anyone else that may have needed it.

CharlesButtlet5 karma

Wow that's really incredible. What did he go to college for?

psychodynamic13 karma

This reminds me about how some Buddhists talk about not wishing suffering on anyone ... that suffering can be one of our greatest teachers and educate us as to the value of our humanity.

CharlesButtlet8 karma

I'm not religious at all but I've always like the views of Buddhism.

It helped me come to terms with lots of things. Because although it may seem like I'm suffering to others, to me I'm just living life.

It's a very common happenstance amongst people.

handsinflames14 karma

Where you born with it? or did you develop it later in life?

CharlesButtlet195 karma

I was born with it. Or maybe it's Maybelline.

teo73011 karma

This story has been in the news recently. Where a mother killed her three kids that had SMA. Obviously she was not in a fit mental condition, but assuming in her deluded mind that she was doing it for the children's benefit, putting them out of their misery. What would be your response to her actions?

CharlesButtlet14 karma

Wow that is horrible and very sickening really... I can understand that the situation would be entirely overwhelming at first but absolutely no. I just can't see how a mother could see her child and not feel anything but love and compassion. It isn't like we look sickly or anything. That is horrible to think that because we are given something that we had no control over that we automatically get titled as a burden or useless. I can personally tell you first hand that is single handedly the worst feeling ever

teo7307 karma

I'm struggling to word this well, but, do you ever think your life is too hard or anything like that?

CharlesButtlet9 karma

No that is a understandable question to ask. I'm assuming most people are very curious about it.

And to be completely honest with you, I do have my days where I feel really depressed and like I'm burden to everyone. I usually push people away when I start feeling like this. It is not always the healthiest thing to do I realize that. But I'm really good at coming back from it.

Overall my attitude is I may have the right to sit around and feel sorry for myself it won't change anything. My life is too short for me to be sad all the time so I'm going to make it whatever I want to be.

cats_pal11 karma

Hi! As a medical student, I'm always interested to hear about people's interactions with the medical community. Have you ever had a bad experience with a health care team member who wasn't familiar with your disease? Any particularly good experiences? And finally, is there anything you wish that doctors actually asked about sometimes (I know you mentioned your mental health in another reply)?

CharlesButtlet9 karma

I've actually had more good experiences with doctors than bad experiences. But the bad experiences were really bad.

Some doctors just don't have good bedside manner and have a god complex about them where they will not admit when they don't know something. In one case my doctor thought that I was need of a tracheotomy procedure which was a big jump but he was telling me if I didn't do I would end up dying sooner and I was "only preventing the inevitable"

So naturally I sought a second opinion through my specialist and told me that she was happy I didn't do it and that procedure was completely unnecessary.

I do wish they would ask more about my mental health but I've been doing a lot better these last few years with that.

chemistextreme8 karma

I too have SMA Type 2 and have a pizza background for my twitter! https://twitter.com/DarkerThanZack SOLIDARITY!

CharlesButtlet6 karma

Everybody can find common ground in loving the glory that is pizza

dem_bond_angles8 karma

What are your dreams like? Can you walk in your dreams or are you in your chair in them?

CharlesButtlet9 karma

You know it is really weird because I always walk in all of my dreams. I read a study somewhere that said people who dream that they can walk when they can't in real life don't let their disability hold them back. That is their mind telling them that they are more than the wheelchair

dem_bond_angles6 karma

Thanks for answering so late. That's fascinating about the study. It makes total sense though. You're a cool kid. Everyone could learn a thing or two from you. :)

CharlesButtlet4 karma

I don't think anyone can learn anything other than just be a kind person to others. Just remember that nobody is better than you and you are better than nobody. When everything is said and done we are all equal in the end.

Tarynsaurus7 karma

I don't have a question, I just wanted to tell you that you have a fantastic smile and that I admire your strength for doing this ama. Stay strong my friend, and keep on smiling(:

CharlesButtlet5 karma

Awh thank you kindly:)))

psychodynamic16 karma

Was it clear for your family at the outset that this was SMA1 vs. SMA2.? I've worked with SMA before and helping parents with losing their children. It's really rough.

Also, I'm wondering if the disease affects your speech and if you've ever used a device to speak. And one more ... did you go to public school and what were the accommodations like?

CharlesButtlet11 karma

No it wasn't clear at all really because the doctors misdiagnosed me with type 1 which was scary for my mom because typically the infants diagnosed with it don't live long. I was given a life expectancy of a year.

I am 21.

My mother had put countless amounts of time doing research and studying on SMA until she took me to a specialist in Madison who set everything straight.

As far as communication goes I speak fine on my own. I did go to public school and I had help with a personal para assistant to help take notes and get my stuff in-and-out for me. Other than that I had regular classes and such. Nothing too extreme

psychodynamic14 karma

That must have been very scary for your mom ... and I have worked with those parents whose children have the SMA1 diagnosis. I'm glad they were wrong.

Also, glad to hear that you had a para working with you and that your speech is unaffected. Thanks for taking the time to answer!

CharlesButtlet4 karma

It was scary especially since I was her first child. And I was unexpected.

Yeah school was a typical experience:)

foreverxxxx16 karma

Wtf happened to all the comments? Why are they all deleted? And what did the mod respond with to the guy asking about sex?

CharlesButtlet6 karma

Is it fixed?

kangaroomr6 karma

What are some small issues in your day-to-day life that may help improve your quality of life? (ie eating, reading, communicating etc)

CharlesButtlet10 karma

Well my jaw is only able to open so wide so getting good bites of a fat greasy burger are hard but those little things don't bother me too much.

I do have a hard time opening up and talking when I get depressed. I push people away and I don't talk because I hate feeling like I am a physical burden so I don't want my issues to burden anyone else even more.

kangaroomr5 karma

Second question: if there was something you wish could be invented to help you out in day to day life, what would it be?

CharlesButtlet11 karma

Cybernetic limbs

Scienceonyourface-4 karma

not a cure?

CharlesButtlet6 karma

Well I mean I guess I was thinking realistically lol

cxn5 karma

You sound like a great person and, going by your comments, have a great attitude. You have any plans for college, if your not yet in it? If so, what for do you think?

Success is 90% attitude. You already got that down so you can get far in life, further than what I think you realize.

CharlesButtlet6 karma

I actually did do a year in college but it really made my emotional life hell and went through a big existential crisis so I dropped out. Honestly I didn't know what I wanted out of life at that point and was only going because other people wanted me to go and not because I actually planned on going.

I'm currently focusing on my writing. It is a big passion of mine and I love doing it.

CaptainRelevant5 karma

Have you gotten involved in any RPG groups? My buddy with SMA, as he lost the better use of his hands, really couldn't do too much in terms of gaming on a computer (mouse moves were pretty slow, even on a mouse ball). But with a pen and paper RPG (Dungeons and Dragons, etc), everything was fair game to his sinister imagination.

CharlesButtlet3 karma

Actually a little while back I bought me Dungeons and Dragons beginner set and I am completely new to dungeons and dragons so it sort of helped.

But I would like it better if I had a group of people that play it with. I can never convince anybody to play with me. My local comic book store has Dungeons and Dragons night on Wednesdays but I have a social anxiety with meeting new people

Deltr0nZer03 karma

D&D is so awesome, I didn't realize when I first started playing that I had loved it for years and didn't know it due to derivative RPG video games. I even have a D20 tat.

CharlesButtlet5 karma

Imgur I have this. The control wires spell "Simple Days"

mzyos5 karma

What age did you develop SMA, and what were the first symptoms your parents noticed?

CharlesButtlet3 karma

Well I always had it because I was born with it but it didn't really start showing until a few months after I was born when I should have been starting to walk and crawl. I was having a real difficult time doing these things. Every doctor kept trying to reassure my mom that it wasn't a big deal but she wasn't having it. But finally a doctor did a muscle exam thing and found that I had SMA

mzyos5 karma

Thank you for answering my previous question.

I've met a few babies with type 1 whilst I've been training. However, I'm yet to meet a patient with type 2 who is an adult. May I ask what the most active muscular movement is you can currently do? And if there are none, are you still able to move your eyes to look at objects?

CharlesButtlet2 karma

Well I have limited mobility in my arms to which I'm still able to feed myself. I can tap my feet. But really that's it. Besides the basics like breathing and blinking and whatnot. I amable to turn my head slightly to

desi_launda4 karma

How do you pass your time?

CharlesButtlet14 karma

I play video games a lot. I mainly write. Comic books are a thing I love. Where am I going with this? I just sound like a loser.

extremistwaffleiron14 karma

You don't sound like a loser. You sound like a typical 21 year old kid who does the best he can with his circumstances and manages to have a fulfilling life. Your circumstance has put my own into perspective. I'm going in for my second lumbar surgery in six years and treating it like the end of the world because I don't know how active I can be. Thank you for humbling me.

I'm 32 and still play video games and love comics. That's not something I will ever give up. I also have a career, but currently no girlfriend (you got me beat there). I think you're incredibly courageous to open up to the reddit community about SMAII. You may not believe it, but you're doing a great service to the world by bringing attention to the disease.

I don't know if you're aware, but DARPA has been doing tons of cybernetics research into exoskeletons and ways to improve load bearing capability in soldiers. There are probably (definitely) non-military applications for these budding technologies that could potentially help you in the future.

I wish you all the best, Donovan. It makes me happy to see someone with such a difficult condition thriving in the way you are. Your girlfriend (and your family) are lucky to have such a smart, strong kid around. As I grow old and my body breaks down I hope I can keep my mind as sharp as yours.

CharlesButtlet6 karma

I cannot thank you enough for what you said to me. I never really thought that by doing this I was doing anything spectacular but other people I reassure me that I am.

You know I hear a lot of people telling me different things when it comes to how I make him feel or that I inspire them but in all reality when I hear those things it is actually making me feel a lot better. Because to me I'm just living my life like everybody else would. But then I hear other people and their struggles and they tell me that I have helped them feel better about their life. And that's all I want, is to make people feel happy.

I I do hope that your operation goes well and you will have my best wishes.

I have heard about those exoskeletons that they have been making. I've seen a few of the prototype versions and I think that would be absolutely incredible to be able to bring into the disabled community

extremistwaffleiron3 karma

Just keep being you, dude. You seem like a really cool guy with a lot to say and share with everyone around him. I hope someday you get the chance to walk and run and use your body. I don't care if it's an exosuit or gene therapy that heals your disease. I just want you to feel that freedom and the wind in your hair while you run down the street.

I'm confident that someday you will have your cure. You can do great things by teaching people how not to take what they have for granted. You can help people live more complete lives through sharing your experiences. Enjoy your weekend, Donovan. You more than anyone deserve it.

CharlesButtlet1 karma

Well even if I'm never able to experience any of the things that you say I am still grateful for the life I was given and the people that are in it. They are who made me who I am today. Thank you for being awesome :)

desi_launda3 karma

Well I guess life is more than doing a job or something, its just about accepting yourself and being happy. We all got problems, and that's all right cause that's part of the deal when you come to this world. But having fun each moment, without caring much about how we are, how our future will turn out to be, is the real deal. Thanks for doing this AMA, and by doing so you're inspiring me and many. Stay happy, cause that's not what loosers do. and you write, that's awesome, mind sharing? Thanks. :)

CharlesButtlet2 karma

I wish I could put into words how much these words really mean to me. As I've grown up slowly started to see the people around me and what they were becoming. A lot of people get wrapped up in the drama in their lives or careers or school etc that no one takes the time to just make themselves happy. You might have a big bank account, alright nice car, a degree that took you ten years to get, but unless it is genuine people are never happy. I just live day by day trying to put a smile on people's faces and live. So your words really mean a lot to me

Lemons135794 karma

In the last picture you look like paralyzed matt damon

CharlesButtlet8 karma

Is that a compliment? I'm going to take that as a compliment:)

Runescaaaape3 karma

Hi Donovan! I'm a junior in college, studying exercise physiology. Out of curiosity, do you know of any treatment approaches that aim at delaying the onset of muscle wasting through exercise with those who have type III SMA? I've always wondered since symptoms don't progress until between the ages of 2-17 (with type 3 SMA), if exercise would delay atrophy and prolong the inevitable symptoms associated with the disease. I'm not sure how much research is out there on this topic...

CharlesButtlet3 karma

I used to take physical therapy and when I was younger and my disease didn't affect me as much and from my basic understanding it helps keep me limber and agile but it was not slowing down on my atrophy. It's like putting a bandaid on a bullet wound. That was for my particular case though I'm not sure if it's different with anyone else.

AliasBr11 karma

Hey there, I think I can answer this too because I too have SMA type II. I'm 31 years old and I've been doing phisical therapy 2 and sometimes 3 times a week (heavy active stuff like lifting weights and such) since I was 3 years old and I keep doing it 2 times a week for 2 hours. I also used to swim 2 times a week from ages 3 till 15 where I had to stop to undergo surgery for my scoliosis, right when I was about to get my scuba diving brevet, damn it! and yes, I scuba dived too.

I can assure you that just by looking at me and then at other people with the same dissease who have not been as active as me, you can tell there is a big difference. I look built as a football player, and if you see me in my wheelchair you wouldn't ever guess what's my patology, my limbs are not bent or crooked and my hands look normal. I remember once a phisical therapist thought I was a type III, and I had to convince her I was dna tested for type II.

I also refused to use a powered wheelchair till I was 29 because I liked to feel active pushing myself in the old chair through the long corridors of my college or my own house, so I guess that can be considered as exercise too. Another thing is that I played piano and guitar from ages 8 to 16 and that helped A LOT to mantain my fine motor skills.

So, bottom line, I know there are different degrees of type II but I definitely think that beeing as active as I am can really help you compensate for the ongoing muscle atrophy, as long as you don't reach muscle fatigue because our muscles don't recover that easily.

If I could recommend a specific phisycal activity, that would be hands down swimming! swim, swim, swim. It helps with our respiratory system and all the muscles in the body are involved.

I hope that helped a bit.

CharlesButtlet1 karma

Woah that truly is inspiring to me. Thank you.

Unrenowned3 karma

How did you get so awesome?

CharlesButtlet2 karma

Well I guess that all depends because I don't see myself is awesome lol but you are awesome for thinking I am:)

Hoinah3 karma

OP has pimp level swagger, jus' saying.
But I am curious, was this a contracted thing (as in, not from birth), and when did it manifest/get to the extent that you are wheelchair bound.
Side note, best of luck to you in everything, a great attitude will take you far in life.

CharlesButtlet3 karma

Actually it is genetically passed down through both parents carrying a gene to the disease. Both my parents met randomly and they just so happen to have the genes.

Donram3 karma

Hello, fellow Donovan! That is also my name, albeit spelled differently, and believe it or not, I have a little sister with type 1 SMA. She, like you, far exceeded her diagnosis expectations, she's 5 now. I'm proud of all the things you're able to do. Smarter men and women than me are reportedly between 2-5 years from a cure, so stay strong, motherfucker.

CharlesButtlet2 karma

I am really happy to hear that your sister is beating that disease. I know it is a struggle especially for the family so really I'm happy that you guys are doing well. Thank you for your kind words and I will stay strong :)

Rauko73 karma

Do you go to a typical high school, or are you home schooled? If you go to high school, how are others treating you?

CharlesButtlet3 karma

I went to my local high school and took regular ed classes. I actually never had a problem with the social part of school. I mean I was an awkward kid growing up and I believe I have social anxiety to an extent but by no means was I ever treated any differently. I had a great amount of friends and even ran for homecoming king my junior and senior year (second place every time)

Rauko73 karma

sick man! I'm glad you were'nt bullied and shit. I guess there are still nice poeple out there!

CharlesButtlet3 karma

There really are a lot of nice genuine people in my life I am so grateful for. And everyone on here being so thoughtful and kind is overwhelming.

greelzz3 karma

My cousin has type 1. I know what you are going through. I have so much respect for you man. I love your attitude and I wish I could give you a hug. God bless you

CharlesButtlet3 karma

I've been getting a lot of nice people saying amazing things to me and I cannot thank you enough. Seriously I would be hugging the shit out of you lol

Mfterlep3 karma

How old are you?

CharlesButtlet3 karma

I am 21 :3

CharlesButtlet1 karma

It was passed down genetically yes and I was born with it. But don't worry I'm just living my life:)

jonmsanti3 karma

Were you born with this disability? Also, is it genetic? You're alive and living life to its' fullest; thank God for your strength and integrity.

CharlesButtlet2 karma

It was passed down genetically yes and I was born with it. But don't worry I'm just living my life:)

jonmsanti2 karma

Thanks for answering, brother. I can already tell you harbor no ill will towards your parents and that's really strong of you. I'm bound to a wheelchair from birth as well but it wasn't genetics just luck of the draw. I've never blamed my mother, or God, or anything else for that matter because it's completely futile. I'm also very blessed to have been raised by my mother to never see my disability as something "wrong" with me so I've lived a pretty fulfilling life as of yet. Still, I know that I have no idea what you go through on a daily basis and even if you may not want to acknowledge it you're an amazingly strong individual.

CharlesButtlet2 karma

I love my mother to death. They never intended on having me in the first place and so I couldn't be mad at them. My mom made sure I had a fantastic life. I owe her everything.

Shadaw3 karma

[deleted]

CharlesButtlet2 karma

If you're down I'm down to clown

1OfTheGoodGuys3 karma

SMA (in my niece) inspired me to become a doctor, and I thought I'd share that a promising treatment, gene therapy, is now in clinical trials!

Gene Transfer Clinical Trial for Spinal Muscular Atrophy Type 1

They are recruiting patients now, if you know of someone with SMA 1 6mo-1yr, they could receive life saving treatment now!

CharlesButtlet2 karma

That is truly remarkable and I'm happy that you are sharing it. Too many people lose their child to this and I'm glad that they are working on a way to eliminate it

Deltr0nZer03 karma

I have type IV, thanks for doing this AMA so more people know about SMA. I got very lucky, being able to walk, run, and even play sports when I was younger, but now the general weakness in my back and the numb cold tense pain is very distracting.

CharlesButtlet3 karma

I know that hearing I'm sorry isn't going to help you any so I want to say is just trying to hang in there. I know it isn't exactly the easiest thing to do but there's so much more to life. Don't get too grim. You are fully allowed to have your days to feel sad but always remember to come back from them.

cfol1233 karma

hey man, i also have sma type 2.

CharlesButtlet2 karma

SMA II POWERS ACTIVATE!!!!!!!!!

MattONesti3 karma

Hey Donavan, thanks for doing this AMA man. As a fellow type II borderline type III SMAian, it's nice to see some insight being shed on SMA and how even though people like you and me are wheelchair bound, we're just like every other guy talking about our dicks on the Internet. But seriously, if you ever need someone to talk to, BSing or serious talk. Anything. Feel free to PM me whenever. Thanks again homie dawg !!!!

CharlesButtlet3 karma

I truly believe that it is my right as an American to talk freely about my dick as much as I want anywhere I want :)

But thank you man I appreciate it and the same goes to you I'm all ears

GrossoGGO3 karma

I have noticed that many individuals with muscle atrophy diseases have wrists which are bent. Do you know why that is the case?

CharlesButtlet2 karma

I always just assumed it was because the muscles in the wrist were one of the first to go but technically I do not know

d000kin_d000kster3 karma

Hi Donovan, thanks for doing this :) I know I'm a bit late to the ama but I have an interest. an old friend of mine has the same disease, she recently more than doubled her "expiration date" as she called it, doctors claimed she wouldn't like past 14. You seem to be the same type of person - so delightful to see your smile and positivity.

My questions: do you use medical marijuana? My friend still swears by it for pain relief and aiding her appetite. She prefers to smoke it, says it keeps her diaphragm strong too. We call her the rolling dragon...

What is your care taker situation? Are you living with family? Do friends help out? Are you in a place where caretakers can be paid to look after you?

How much independence do you see yourself having/needing as you get older?

Thanks again :) and cheers!

CharlesButtlet2 karma

I actually don't use medical marijuana but I have given it thought to help my aches since I'm so boney. I get sore easily and I don't feel comfortable taking painkillers for it because I once got addicted to oxycodone physically because the doctors had me on a regular take on it when I had a chest tube. So I don't like medical painkillers.

My current caregiver is my mother and my friends do help me out quite a bit with things. I do want to live independently soon but I think I have a weird social anxiety thing and being alone or around people I don't know.

Agoep012 karma

Hello Donovan! I just posted my own AMA about having a son with Type 1 SMA and saw your post! What advice can you give me about having a son with SMA from your standpoint? I know you have type 2 and he has type 1, but was there anything pivotal in your life that did or did not happen that you would suggest I do/don't do with my son?

CharlesButtlet1 karma

My strongest suggestion that I could not push enough is to not over care. It is far too often I saw people in my same situation with a very distraught mentality not by their illness but by the environment in which they were raised in. I know some parents will shelter their children away from the world all out of too much concern. I understand that having a child isn't easy more less one with a disability. Treat them like you would without the condition because if you treat them different they will feel different and it is a rough feeling.

Definitely do lots of research on SMA and the different ways to treat it. Especially since it is type 1 which can be more serious but you can beat the odds because I have met and seen people my age with type 1. Highly recommend visiting http://www.fsma.org/ it will be of great help.

Lastly really keep on eye on his mental health. I often have self pity moments that will take over that I never felt going to my mother with because I didn't want to lay that burden on her. I would feel too guilty.

What is your son's story if I may ask?

hardcorejacket012 karma

What kind of music do you listen to?

Can you move all/most of the muscles in your face? You seem to be smiling in all of the photos. :)

Also, how do you feel about the word, 'retard'? Does it offend you? Do you ever use it? I understand,(through very limited research) that SMA II, does not affect mental/brain function, but I assume that because you've been chair-bound for the majority of your life you have probably been called a 'retard' once or twice by your peers or people at the grocery store. How do you deal with this?

CharlesButtlet3 karma

I listen to a lot of old school punk rock. I like the first wave of hardcore punk. But I like a mixture of everything.

I have fully muscle control of my face :) I do smile a lot lol

Well I know my initial reaction is to say I hate that word (which I truly do) but I am guilty of calling my friends a retard for doing/saying something stupid. I don't ever use it outside that realm though.

I have been talked to like I had a mental handicap to. I am always a smartass to ignorance.

Taco Bell employee: in a preschool teacher voice done purposely "Hey there buddy. How are you today?"

Me: "Dashing my lad! Although I'm feeling rather peckish. Might I enquire you for one of your Nacho meals with a Baja Blast? Quite right! Good show!"

Rawjerseycream1 karma

Random bit of info - people with SMA tend to have higher than average IQs. Bizarre world, isn't it?

CharlesButtlet1 karma

That is assuming :)

Pennifred2 karma

I also have Type 2 and stopping by to say thanks for doing an AMA. If you ever need someone to rant to or have questions about how another person is dealing feel free to PM.

I read about your job/hours issue and wanted to mention FlexJobs. I don't have anything to do with them, but some of my friends have had luck earning a few more bucks there.

CharlesButtlet2 karma

Thank you I appreciate it:) I'm here for a friend too:)

But is that website pretty legit?

Skyless2 karma

My friend had this, although it might have been a different type. He passed away a few years ago.

Best of luck, brother.

CharlesButtlet2 karma

I'm sorry to hear that about your friend:/ how old were they?

Thank you for your support.

Skyless2 karma

He was born with it, and he passed away after a random series of seizures, I believe. This was freshman year of college, so 7 years ago now.

Dude was pretty freaking bright. I still look up to him in many ways. I remember he used to make jokes about fondling breasts in Latin class lol.

Anyway thanks for reading my random story, thanks for posting this and reminding me of him, and like I said, wish you all the best dude!

CharlesButtlet2 karma

He sounds like a nice and genuine guy. I enjoy being able to laugh at things and poking fun at my illness. I'm happy he was aparft of your life.

RA33-3 karma

How does your ass get wiped? Do you have an ass wiper that follows you around everywhere you go?

CharlesButtlet6 karma

I wish I could tell you that I just had a gorilla that did it for me because that would be way cooler than telling you that my mom does it lol

RA332 karma

That's what I figured but what if your mom isn't there? You should totally hire a little Mexican woman to wipe your ass.

CharlesButtlet3 karma

I am typically always able to get it to where I can wait until I'm around my mom.

Can her name be Rosalina?