I'm Milan, I’m 22 years old and I live with a disease called Duchenne Muscular Dystrophy (similarities with ALS) and have slowly lost a lot of my physical abilities throughout the years. I am also an aspiring YouTuber. AMA!

Hey Milan, I’m a web developer and interested in how you navigate websites. Are there any things on the web you struggle with / find frustrating and is there anything we can do as developers to improve your experience?

I'm actually studying Web Development but thinking of focusing on photo and video editing once I graduate. I honestly don't have too much difficulty on the web if I'm using a comfortable mouse with high DPI settings.

How does your condition affect your sense of identity and worth?

I'd say I struggled with that as a teenager but as I’ve become older I've talked to a lot more people living with it and are doing quite well. A couple have kids, one just had a grandchild. At this point, I know doing something with my life is possible so I believe I'm at a good place with my sense of identity and worth.

What are you currently playing on PS4?

I’ve been playing a lot of Assassins Creed Odyssey

What is Juno up to? Is she still a part of the story line? Keep spirits up and the will to keep going.

What books have you read? What books do you plan on reading?

They don’t really focus much on that story line as much but there’s certain mentions of Desmond.

I have read a lot of books, most recently the Rendezvous with Rama series, The Martian, and Ready Player One. I'm not sure what I'm going to read next, any recommendations?

When someone is having a conversation with you and there aren’t any chairs in the vicinity, do you prefer to have them simply stand and talk to you, or should they squat or bend so that they’re closer to eye level? Or do you think it’s awkward if someone looks for a chair to sit down so they can be face to face? I ask because I’m tall and I sometimes feel awkward talking down at a person in a wheelchair, but I’m not sure what I should do.

I prefer when a person stands for the most part. Whenever someone bends it feels like I’m being talked to like I'm a child. However my wheelchair has an elevator function where I can go higher about maybe 3 feet to be at a height of an average person. Not everyone is the same though. I'd say just ask what the person is comfortable with.

Fuck yeah your wheelchair sounds awesome!

My bosses kid has Duchennes also they're just getting to the point of ordering a chair. The one they have picked out can stand him up right, elevate the seat, and even lay out flat like a bed. It also has a 15 mile range. High end chairs are amazing, but insurance companies are shitty things. And they argue every single feature and if it's actually required for the disease.

Yeah I have all those functions. I can’t stand all the way straight because of scoliosis but I can enough to feel a difference

Thanks for doing this! There are times when I may cross paths with a stranger using a wheelchair and my tendency is to look away without eye contact. What do you think people should do to overcome and interact more naturally with those utilizing a wheelchair?

For me personally, a normal hello like giving everyone else is perfect. Just staring isn’t the answer. It's also not a good idea to ask why we're using a wheelchair as soon as you say hello or at all unless there's a reason to. Also don't help us do something if we don't ask like pushing the wheelchair. For more interaction, treat us like you would everyone else. The most annoying thing is when people praise us for just being out and about. Like, "It's so great you're out today." Just because we use a wheelchair doesn't mean we don't go anywhere. So just keep in mind, just treat us like everyone else, many welcome the interaction but I obviously cannot speak for everyone who uses a wheelchair.

Kind of in the same vein there, I have a very curious three year old who, in true three year old fashion, tends to ask questions very loudly. How would you handle that situation, i.e. a child asking why you're in a chair/why you have all that equipment? I struggle to think of something not patronising to say.

That’s a tough one. I don’t mind when kids ask me because they’re supposed to be curious. I usually explain my legs don't work well. I've also seen many parents drag their kids away which will only teach them to be scared of people in my situation.

Occasional wheelchair user here. I do really appreciate it when people offer to help me load my car.

I meant don’t start helping without asking us first.

What has been the biggest challenge you have faced to date? Keep up the good work!! Love the videos!

Thanks! I’d say the biggest challenge I have faced would have to be dealing with the stares and with the fact that some people will never look past my disability. When I first started using a wheelchair, I realized every time I entered a room, I realized every eye shot to me. I hated being in public during that time but over time I've learned to just ignore it. Sometimes I even stare back. It's not like I'm contagious.

I had a friend for many years who had it too. The 'gang' would hang out at his place, watch movies and wrestling, and play games. It was nothing to pass up a chip or hold a can. And so far, I haven't seen any signs I 'caught' it. :D

That’s good to hear. My friends and family are just like that. They have no issues helping me. I’m a wrestling fan as well.

Who's your favorite wrestler? I'm a big fan of Drew McIntyre and Daniel Bryan. Do you subscribe to SquaredCircle?

I like this new Daniel Bryan they’re going with. My current favorites are AJ Styles and Seth Rollins. No I don't.

Hey I just checked out your YouTube, you are very impressive and inspiring young man. Awesome video about your room. Really enjoyed the presentation (the music creates a great effect). How did you decide on the music choices for the video? Also, what are the biggest sources of inspiration for you in your life?

Thank you. I honestly just tried a few options and that sounded the best. My biggest inspiration has to be my parents because of everything they have and still do to assist me.

DMD is tough. Keep your chin up! How do you cope? How are your relationships with your family? How do they cope?

I watch a lot of sports and TV shows when I'm down. I’m also learning Photoshop and video editing as a hobby right now. My family and I have a great relationship. It is rather large and mostly everyone treats me like everyone else and are more than willing to assist me. I can't really answer how they cope because they wouldn't show me.

You sound like a really cool person! Thanks for doing an AMA :)

As someone aspiring to work in the medical field, what would you like doctors and other healthcare professionals to know about your condition? I know the basic pathology of DMD, but what can you tell me that can that I may not know, or that you wished your doctors had known?

Thanks for the compliment! That is a tough question but I’d say listen to what the person is saying. In most cases we know our body better than them. Some doctors don't like contacting experts even when they might not understand something.

If it's "like ALS" is it also perpetually degenerative? If so, at what pace?

Yes it is. The pace is different for everyone but usually gradually. I started having some breathing difficulties about 2 this years ago. I started struggling with walking when I was 8 or 9ish. Many people from what I've been told die in their 20s-30s but I know many who are in their upper 30s and several in their 40s and 50s. A lot of people who I hear about dying young its because of lack of knowledge by doctors. A lot of times when the person has to start using a ventilator and they go the ER doctors give Oxygen but the problem is really that they can't exhale out enough CO2. More Oxygen just adds to that. My cousin who also had it died 3 ago due to not great medical devices in India. He was about 6 months younger than me. Sorry about the long reply but yeah the average age to lose walking is about 8-13, arm strength 15-18 but I know many who are on opposite ends of age ranges.

You ever pick up some sweet ass in those wheels of yours?

LOL, surprising not the 1st time hearing a question like that but to answer that, unfortunately not as of yet.

Hey dude, I also have DMD. Are you a cautious driver or a daredevil?

I'd say cautious now but used to be a daredevil.

Have you had genetic testing to determine if you are eligible for the new therapies that use exon skipping to make some DMD mutations act like the less severe Becker muscular dystrophy mutations? (Google exon skipping DMD for info)

link to one therapy

I'm waiting on the results of the genetic test to see my mutation. They did a muscle biopsy when I was a baby but couldn't determine the mutation. Should get the results any day now. Glad it only takes a blood test now.

I hope your mutation is one of the ones treatable by the therapy. Genomic medicine is progressing rapidly now, so even if you can’t use this version it would be good to stay in touch with research groups or geneticists specializing in DMD so you will know if something becomes available for you.

Definitely my pulmonologist knows many experts and he himself is one.

How do you pronounce Milan? The Italy way or the southern Indiana town way?

The correct way is Meeluhn but throughout my whole life at school everyone pronounced it like Muhhlahn. I've also heard the Italian way a lot.

Are you from the Balkans? The name Milan is pretty popular there

My family is from India, it is a popular name there too. Probably pronounced differently though.

I have a friend from the town in Indiana. They pronounce it like My Land without the D if that makes sense. Most Indiana towns seem to take from a more famous town and then butcher the pronunciation. I like your pronunciation though.

I've heard that one before too and sometimes get Mulan for some reason.

What sort of technologies would you like to see better adapted for people with muscular dystrophy diseases?

Hmm, lets see video games have been getting better adapted especially with the new Xbox Adaptive Controller but they still could use some work Obviously not everyone with the diseases enjoy video games but I know many like myself that do.

Have you ever been bullied/harassed for your unfortunate disease? (Not to be personal, you don’t have to answer this question)

I look at this way, if I didn’t have the disease, I wouldn’t be the person I am today. I know as a child I would get comments and jokes because of walking differently but never anything serious. I went to school in the same town my whole life so as I got older and grew up with the same people, I was always treated just like everyone else. I know bullying happened in my town but I guess I was lucky. I know many others with DMD who have which is unfortunate.

How are you doing buddy? Long time no see (check my username)

Hey man, I’m good. Have you been? It’s been years if you can believe it or not.

What are your thoughts on the recent developments with DMD and gene replacement therapy from Sarepta Therapeutics? Looks really promising to me, and its from a doctor that has had great success treating other inherited illnesses like Spinal muscular Atrophy.

It is definitely intriguing! It’s great to see new treatments coming out.

My family are carriers of DMD, but there are mostly girls in our family so not many people affected as it happens.

Do you have siblings?

Mine too, my cousin 6 months younger than me had it, and my uncle we believe had it. They’re both gone now unfortunately. Never met my uncle. But speaking of your question, I have an older sister.

How is the healthcare system in your country treating you?

Can definitely be much better but I know many who have had a lot tougher of a time in other countries.

My cousin was born with the same disease and he’s about 13 years old. My aunt, who is also in a wheelchair is extremely active in the MDA as well as Leukemia Society after she had Leukemia and then adopted my cousins. What advice do you have for my cousin as he battles through, I’m sure, some very similar hardships to those you’ve been faced with since his age?

Wishing you and your family all the best. It truly takes a village. Also congrats for the bravery it takes to open up about this- thank you.

I've been through some similar hardships but I know many who have been through more. I’m lucky I haven’t needed to go to the ER at all so far.

Thanks for doing this AMA. How old were you when you were diagnosed? What age did you start seeing symptoms and who noticed them (you or your parents or someone else?)? How did your doctor explain what was going on?

I believe I was diagnosed at about 6-8 months. My pediatrician noticed I wasn’t reaching some normal milestones and sent us to some specialists. I'm not sure how they explained it to my parents. I personally noticed something weird when I started walking strange and would get tired quick. I was told things about it early on depending on age of course.

Thank you for the reply! Its really an interesting disease. And the genetics of it is really cool. It must have been scary for your parents and you as well. Good luck!!

It really is interesting. And You’re welcome, I like doing things like this.

I climbed My Kinabalu on Borneo to help highlight Duchenne. Do you know Catherine Jayasuria? She started and runs a charity that has managed to fund some research. Check out Coalition Duchenne on FB. She has helped people all over the world. Tell her Miles sent you.

That’s pretty great! I don’t know her but I’ve heard of Coalition Duchenne! I’ll check it out in detail later.

Have you thought of having any romantic relationships?

Definitely, hopefully will happen eventually.

Hey buddy! Great to see you doing stuff that you love! How did your family members saw the situation when you couldn't walk 13 years ago?

Thanks! I honestly don’t remember too many details. I actually had tendon release surgery on my ankles right when I was struggling to take many steps and my legs never got the strength back. There was a 50/50 chance of walking again but eventually I would stop anyway either way. I think it took some learning but they got used to it.

Have you been on exondys 51 therapy?

I'm waiting on the results of a genetic test to find out if I qualify.

A friend of mines 5 year old son was recently diagnosed with DMD. She’s gone into a total tailspin over it, and is pretty overwhelmed. Any advice you can give me to pass on on how to handle this as a parent?

Also... had never heard of DND until 6 weeks ago, and now this pops up. Perfectly timed AMA my friend

From a parent's point of view it’s difficult. If she wants advice, I’m in a good FB group with parents. https://www.facebook.com/groups/TheDMDArmy/

Sup?

Not much, it’s a do nothing besides browse Reddit sort of night hence why I made my post tonight. You?

I am interested in the tech on your chair, is that a computer screen next to your phone ?

It’s actually just a screen. It shows my speed, modes, and a couple other things. The newer models of my chair connect via Bluetooth to your phone and let you check everything. https://www.youtube.com/watch?v=wHX910G8qKI Some of this guy's features are my goals but I can't get a new chair for a couple more years because of Insurance.

Thanks for replying, and that guys chair looks insanely high tech too. I do have one more question if you don't mind, I checked out some of your vids and I am curious as to what the purpose is behind the breathing apparatus you use ? Dose it assist your breathing or is it monitoring levels of some kind ?

I can’t out of breath quickly and need assistance taking breathes at times. If I’m speaking a lot I need to use it more. It forces air in like a small leaf blower blowing air. Its easier to time the breathe when speaking to someone in person so it doesn't interfere too much in the conversation.

Can you shave? Can you improve muscle strength if you did weights? Will you eventually have to get an invasive breathing tube? What would your ideal romantic partner be like? And hope all goes well brother - lots of people in reddit are emotionally stronger than I ever will be!

My dad shaves me. There’s no way to improve strength. In fact, using weights as a child with DMD can also make your arms lose function quicker. Here's some info if you're interested. https://www.parentprojectmd.org/care/for-families/for-newly-diagnosed/learn-about-duchenne-and-becker/

I may eventually have to get a breathing tube but hopefully not any time soon. My ideal romantic partner honestly is someone who doesn't only see the disease and can make me happy.

Favorite NBA team?

I don’t really watch much basketball so not sure. MLB wise, I’m a big Yankees fan and NFL wise, an unfortunate Giants fan.

Do you ever try to outrace people in your scooter?

I definitely used to when I was younger.

I noticed the cup in your picture - what's your Dunkin' Donuts order? :)

I'm not positive but I think it was a Strawberry Coolata. I can’t do coffee, increases my heart rate.

What inspired you the most?

I sort of answered a similar question and I'd have say my parents and sister because of everything I they have sacrificed for me over the years. I wouldn't be where I am today without them.

Not being morbid but how old do you expect to live to?

Honestly, I don’t really know. Surprisingly I don’t think about that too often because anyone can die tomorrow. If I keep thinking about, it would be hard to enjoy things..

How do you feel about the "you're so inspiring" comments? I noticed one on your YouTube video. I know that many people with disabilities find this offensive.

I’m not a big fan of it either but to me it depends on the context. If you call me inspiring just for waking up and living my life it puts a bad taste in my mouth.