I have rare disease called duchenne muscular dystrophy.

I have the cousin disease of DMD. I have Beckers Muscular Dystrophy. Stairs are bitch for me. Anyways, what's your perfect Sunday?

Often mother cook something nice on Sunday, father stays at home and we all chill. If it's hot outside in summer we know to go in small village in forest near our city and then we go out to launch alone or with friends. Now is winter and it's to cold for me to be outside, so home sweet home :) Beckers is, I would say lighter version of Dystrophy but also very challenging. Good luck ;)

Nice, sounds like a good family life. Oh BMD is definitely the diet sprite of Muscular dystrophy.

But diet Sprite is horrible? Wouldn't you be like a Vanilla Coke Zero and him be diet Sprite?

I almost died from laugh here haha

What PC games do you like and how does your disease affect your playing?

I play almost all kind of games, I love mmorpg like Guild wars 2, strategy (AoE, Total War,) shooters (Doom), adventures (AC franchise, Tomb Raider), also I am playing Rocket League and WoT. I use mouse with minimal 4 customizable buttons and only WASD part of keyboard. I can't press F keys or use any keys from G to right. It affects playing yes, after 2 hours of play I need to rest a little bit, but I am decent player.

Ever tried EU4 (Europa Universalis 4)? It isn't a game where you compete against other players and I derive a lot of joy out of it simply by learning more about geography and history, there's also some who do role playing aspects and my favorite part is just "how different would the world be if X country became a global superpower" and then make that a reality (my personal favorite is to actually play as the Byzantine empire and reverse their decline and reclaim anatolia and eventually reform the roman empire from Rome to Alexandria and beyond))

Looks like Total War map campaign. I will look into, thx

You like AOE, aoe 2 right? That games a blast, I played pretty seriously on the multiplayer aswell. You have good taste in games!

AOE best strategy ever. Part of my growing up.

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Tomb Rider is beautiful...game haha

You could also try Battle for Middle Earth 1 and 2 which are also another RTS style series. It's old but very well made as a game.

I played that also, cool game, cheers

Guild wars 2 is great lol I’ve been playing it since launch. It’s been getting boring recently but it’s cool to see someone else playing it outside the subreddit

Well I haven't logged in for quite some time but I heard about new expansion. I collected 5k achievement points and stopped to play.

I need to know your Rocket League rank immediately.

Gold 2 on 3vs3, silver 2 on 2vs2 for now, i need to practice more

Hey man, we should play a game. Bit odd to ask of me but if you want to I'd be down, I love rocket league and stuff

Hey I will PM when I go into the game. I haven't been for few days online.

Rocket League rank?

Gold 2

Do you have access to 1-9 keys? If so maybe old school runescape would be good? I know it’s not the best game in the world but it offers a lot of skills that you don’t have to be actively pressing keys constantly. EvEn without access to 1-9 its fine. Maybe even as a cool down type of game when your muscles are tired. If you decide to give it a shot shoot me a pm and I’ll help you out.

Also as an aside, you seem like a real positive guy so go you, man!

Hey, I will contact you if I give it a go, thx

I suffer from nerve damage in my left hand. I also play gw2. I can use WADS and the F key but that's my limit anything else is concentration or luck. I was wondering how you activate skills? I have a mouse with 5 additional buttons that I use for utility skills ets but I click all the other skills with the mouse. Do you play in a similar style? Or maybe there is a better way o_0

I used mouse for some abillities or heals. Also I use Q,E,1,2,3,X,Y also for abilities and weapons. I changed whole layout to fit me, but yeah, after some time i get tired anyway.

A boy very close to me has duchenne. He will be turning 7 in January. What advice would you give to kids with your disease?

First of all say truth all time, he need to know what he can expect of his life, that he will someday need to use wheelchairs, that he will not be able to eat, drink go to toilet alone and try to answer him every question he have. It's kinda harsh to say that to kid but he will have easier time later on accepting himself.

Any advice on diet?

Well idk, I have problem with milk products, but not cheese, also deep fried meals know to be painful for my belly. But it's individual. Let him eat everything just in normal quantities and 5 times a day. Never skip breakfast, it's most important meal of the day!

Sorry to chime in, but one of my best friends had it. His life expectancy was 19. He did intense physical therapy and lived to 28. He gave all the credit to the amount of work he put in to physical therapy.

It's very individual. It depends how person lives, what eats, drinks, what genes he gets from mom and dad. Technology also helps. I have device for breathing in night so I can eventually have more air in my lungs if some s**t happen.

Hi Ivan! Thanks for doing an AMA. I was wondering what hobbies you have and what keeps you busy during your days?

Well I am most of the day on my PC in my room where I play games and watch movies and series. I have watched thousands of movies. Also I have once a week my boccia training and I go to my association where are other people with similar disabilities once a week. Few years ago my hobby was drawing with pen and paper but now it's hard to me to even hold a pen. But I am never bored.

Hey man I've given this some thought before because I also like drawing and have some autoimmune issues which make my hands ache. Maybe you can try making pixel art if you're Into that as I think it can be done with just directional keys.

Well I can still make some designs in Illustrator with my mouse, but honestly I was traditional artist and it's not it. Digital art is also very good but idk, that's not it. Maybe I have just dumb opinion.

What are your favorite movies? Top 5?

I have many favorite movies but this are my top 5: 1. Lord of the Rings Return of the King 2. Interstellar 3. Mad Max Fury Road 4. Curious case of Benjamin Button 5. Star Wars The Phantom Menace (yeah I love prequels)

There are many more but I can't write it all.

Hi! I have a Croatian friend named Ivan too! Anyway, what’s your favorite series?

My favorite series are Game of Thrones, Vikings and Black Sails.

What five movies did you hate?

I don't watch movies which I don't initially like or I just forget them so it's hard to tell, but Twillight Saga was s**t for me haha

You seem very positive. What makes you happy if/when it all feels like too much to handle?

Things that make me happy are small things. Just some warm words or look of my cute dog makes me happy. In tough situations I try to stay positive, if it's too much to handle I will cry and then it will be easier. There is no shame if you cry.

Here is the pic of my dog, his name is Mambo. Link: https://imgur.com/43Bfdey

Hi Ivan! Thanks for coming on here. At what age did you begin to feel the effects of DMD?

My disease has been discovered by age of 6 but I began to feel that something is wrong with me when I started going to first grade of primary school at age of 7. I had really hard time going upstairs and I was often tired. Later it was even worse cuz I started to falling on ground and couldn't get up. By age of 12 I started to use wheelchairs and it was in some way physical relief for me cuz no more falling down and hurting myself hehe.

Is there anything you would want to say to people who are healthy and can do all the things that you can't, but are still unhappy with their lives?

Advice? Hmm, it's hard to tell because somebody who is healthy and rich can actually be mentally in bad state. All people have their own problems but definitely l would say live, eat, drink while you still can. Try to enjoy in life, don't be sad if you can't do something, find something else, make jokes and stay positive. :)

Hey Ivan, thanks for the AMA

With these kinds of diseases we often hear of the physical impacts, rather than the mental. So my question is how does your situation impact you mentally, and how do you cope with this?

There are moments when I am depressed and sad, like what is my purpose, why I even live? In that situation often my brother makes jokes, parents and friends are talking to me and I feel better. You must have somebody to talk to or else your will struggle. In my opinion mental health is more important than physical. For example my friend who has ALS and he whole day lay in bed is so optimistic that even I cannot believe how. No matter what, stay positive.

You probably already know but just in case, did you hear about this?

https://musculardystrophynews.com/2018/04/13/dmd-treatment-using-mini-dystrophin-gene-begins-clinicaltrial/

So this year Pfizer just started started human trials for a potential cure. I have been looking into this for some time since a friend's young boy is affected by this as well. Also are you in contact with Cure Duchenne (https://www.cureduchenne.org/)?

Anyways best of luck to you man and just hang in there!!! New treatments show up all the time and hopefully in a few years we'll have something for your disorder.

Yeah, I heard about some trials, this is absolute good news. I am not in contact with Cure Duchenne tho but it's great that there is such a movement. To be honest for some years I didn't even followed whats happening with treatment. I spent a lot of time in hospitals when I was younger so I kinda don't like drugs. Anyway if there is a cure which heals without any problems I would take, but if I must choose between some younger kid or me, kid would be cured.

What are some of your favorite places in Croatia?

I spent 3 weeks in Croatia a few years ago and it was so beautiful, I hope to return someday.

I really love Istra, such a beautiful county, Colosseum in Pula is cool. Gorski-kotar county is also very beautiful and magical if you love forest. Also our islands are nice in summer but quite expensive. My hometown is nice but a little bit rusty. Actually everything is beautiful here. If you ever come again here make me notice so I will tell you about some jewels.

Thank you for doing this AMA!

I am heading a production team which is currently in the pre production phase to produce a documentary web series about success stories from those living with MD.

What is something about your lifestyle that you would personally like to see highlighted or touched on in this series? Is there something crucial you would like to us to convey to the audience about muscular dystrophy?

Thanks for the feedback!

Hi, it's nice to make documentary about us, looking forward to it.

First of all my lifestyle is just like any other, I am just a normal guy who tries to live as much as he can but needs 24/7 help haha. Really, we just try to live like any other human being, we go to school, we work, we party, we try to fit in. Only problem for us is that we have physical barrier to do something and often we are depressed not because we are crippled but because other ''normal people'' see as as it. Imagine a world where if you are born with some problem you immediately get support from institutions, people and even money for your unexpected situation to cope with wheelchair or other expenses. In that way every problem would be easier to overcome and self acceptation would not be such a drag. Things that I want to say about MD would be that even if we look fragile we are tough and resilient especially in our head. I had luck that i have wonderful family who support me and that I live in somewhat peaceful area and that was good base for my personal development, some others unfortunately have pretty bad time on accepting themselves. That's not just case with disabled persons, everyone needs to accept themselves. You maybe see me as inspiration, optimist, amazing person but I am just regular guy with it's own problems, just like you and everybody else.

If you have more questions ask me. I am here to answer.

what is the treatment like, if their is any, how much does it cost? (both time and money)

I've known someone with a genetic problem, living in the US and the hardship of both money and social lack of knowledge about anything beyond stuff like cancer

There is no actual treatment for DMD but there are some research going on. Some people take supplements for keeping muscular mass, like corticosteroids but then they have other problems with organs failing. If there is an cure it would be very expensive. For example another relativity similar disease called SMA has cure which price goes around for 130k dollars dose and you need to take 3 doses a year. Only gouverment or extra big donations can help.

Heads up, op: your proof link is 404.

It's working for me, others?

Try this https://imgur.com/OBYVaA2

Have you ever watched "Fundamentals of Caring?"

If so, how did you feel about how DMD was presented?

That movie has some ok stuff to show. First of all his assistant was very good, he uses same mask and device for breathing as I use. I don't drink any meds like he is, but it's possible for him that he needs to take it. If it's real he probably couldn't hold his head on his own, pissing while strapped on board...possible but painfull, also picking first girl he saw, nah not really haha

What would you say were the hardest points in your diagnosis for you? And how did you feel?

What are you most proud of achieving in your life so far?

Can you explain the fear of water? Are you afraid of drowning or just anything to do with water like rain or puddles?

Hardest point for me was when I first sat in my wheelchair. I cried almost every day for months, why me, what have I done? My mother was strong emotional support for me, we talked for hours and then one day I woke up an accepted everything, cuz tears will not give me anything. Unfortunately some people with problems never exit that tunnel of sadness and depression. My proudest moments were getting my bachelor degree in front of many people who clapped like minute or so. My parents cried. Also getting third place in boccia was very good felling. Since I was a little I was afraid of drowning in water, when my mom showers me in bathroom I get scared when water gets to my nose and mouth. Maybe it isn't water that I am scared but my inability to do anything when water gets me.

A friend of mine has the same disease. I have seen him struggle through a lot but he has ended up writing a book. What is something you want to accomplish despite your disease?

A lot of my friends with same condition write books and such as it's great media for connecting with other people with similar interest. What I want to accomplish? hmm, that's actually hard question, I am just regular guy who doesn't have some clear goal, but definitely I want to play boccia as long as I can and watch Game of Thrones last season haha

Hey Ivan! Thanks for doing this AMA, especially in your second language - very impressive. My question: what are you looking forward to for the new year? Do you have plans to work with your economics degree? Best wishes to you.

I am looking forward to watch Game of Thrones last season, and continue playing boccia. Also i thinked about working but in my country I can lose some benefits if I employ which is stupid...for example my mother is also my caregiver and she's paid for that and if I employ she could lose that status. Maybe next year they change this. Thx

Do you struggle a lot with doctors not knowing what they’re talking about? I have a rare degenerative genetic condition myself (Ehlers Danlos Syndrome) and 99% of doctors write it off as depression, faking, or “not my problem” even when they’re my PCP and should probably learn something about the person they’re treating. I imagine it’s different having a visible condition (mine is invisible and doesn’t show up on standard blood tests) but do you still face medical discrimination and such?

Yes I do, some doctors actually don't know anything about my disease and then I need to explain them everything. It goes on my nerves when I have idk flu and then they say ''Oh it's because of your primary disease.'' Shut up and quit job, gosh. But in other hand I cannot even blame them cuz my disease is so rare that he or she never saw or even heard (but they learn something on college) about it. So, be patient and try to explain some things too him, if he is too proud to listen, try change it.

Tits or ass?

Ass is better to me but tits help also :D On my level I can see easier asses. Once one man who got similar disease told that he could make an book on woman ass haha

Hey Ivan! How’s your day going?

Hi, my day is going great today, I am a little tired cuz, you know, hundreds answers i need to write :), cheers

So you don’t say much about treatment if any. What is the long term prognosis?

My first friend / best friend of my whole childhood had DMD, and passed when we were 21. This was considered a little early. Maybe. Maybe not. Muscles get weak with DMD. They degenerate. Fat builds up. Everything that requires muscles gets harder. He suffocated at the dinner table in front of his parents. I was away at college and it still haunts me. I’m 33.

That's really sad story, my brother almost died from hearth attack, my father and my uncle reanimated him while emergency was on it's way to our home. He now have device in his body to regulate his hearth beats. That was very hard time for me and my family. I am really sorry for your friend, hang in there and do things he couldn't. Cheers