I'm Milan, and I live with a disease called Duchenne Muscular Dystrophy and I've only left the house 4 times in the last year because of COVID, I've had 1 dose of the Pfizer vaccine so far. I've done 2 AMAs before. I'm also a Graphic designer, Twi...

What's something you wish more people understood about your situation?

Probably that even though I do a lot of things differently, I'm still a pretty ordinary person who enjoys different things just like everyone else.

What's the best thing that happened to you this past year?

The best thing to happened to me was probably reconnecting with some old friends and making new friends using Discord and Twitch streaming. It's honestly been one of the things keeping me going this past year. How about for you if you don't mind sharing?

Nice. I can't think of anything in particular other than someone randomly pay for my daughter and I meal at McDonald's recently.

That sounds really nice.

What's a day in the life of Milan like?

It's been repetitive lately lol I go to sleep really late so I wake up and get out of bed around noon and then the rest of the day is a combination of watching stuff, gaming, streaming on Twitch, working on designs, video editing. It all depends on the day. I usually do stretching before I go back on my bed around 8-9pm. I also do breathing exercises throughout the day. I'm waiting for the weather to get warmer so I can start going in my backyard.

Do you have advice on overcoming internalized ableism?

My biggest fear about getting Covid is not dying, but getting Long Covid and becoming more disabled and losing further independence. How do you come to terms with that possibility, stop worry, enjoy the present moment, and adjust when things DO get worse?

When I was younger I had a lot of internalized ableism and for me the more I interacted with other disabled people, the more I started realizing that feeling sorry for myself was holding me back. I still have those moments but it's getting better.

For me, I've also been worried about long term effects if I were to catch Covid. My disease is progressive so I've dealt with losing more and more independence. I know this seems too simple but for myself, I've learned how to adapt a lot over the years that I figure I would be able to adapt no matter what happens. It's not to say I never worry about what's to come but I worry a lot less than I used to.

I always figured I'd just keep going, because that's how being alive IS, but yeah, as someone whose conditions don't appear to be progressive, I'm not in the headspace of expecting predictable changes of that sort.

Yeah that's understandable. I hope you're able to figure your thoughts out.

I can see you live in the day. I have a rare disease that although not debilitating for me causes a lot of pain and slowly gets worse over time. I try real hard to live in the day because today may be the best day I get. But some days it’s just hard. What do you do on those hard days to not look ahead? I mean I could worry about what 5 or 10 years means and then poof somebody finds a cure or new drug and I’d of wasted all the time worrying. And it won’t change the present anyway. That’s kind of how I do it but curious if you have any pointers. I’m having one of those days.

And sending you best wishes! Hope you have a great day today.

I certainly have a couple of days like that every month and some days I'm just exhausted to do anything. I try to do things I enjoy to keep myself distracted. On some days I just do nothing and I think that's okay too.

Distraction is key. I do pretty well during the day as long as I don’t do to much. I can’t walk too far so I started fishing instead. Least I’m outside. Try to find somethings that are enjoyable is a key and finding people that will Support you just where you are. I found some meds that have helped a lot and kept me off disability so I’m thankful for modern medicine.

Anyway all my best and thanks for responding.

I’ve heard fishing can be really fun. My dad’s friend was going to take us last summer until COVID stopped us.

No problem, hope you continue doing well.

I climbed Mount Kinabalu to help raise awareness for DMD for a Californian /Sabahan (Malay) woman and her son Dusty, he has the same disease.

I was surprised how many young men have it, has any progress we. made on the treatment?

There is one treatment I know of for 1 specific type of Duchenne called Exondys 51 but it only helps for a specific mutation. I don't have that mutation so it wouldn't help me. I know there are different trials but I'm not sure how far along they are. This is a great resource if you want to look more into it: https://www.parentprojectmd.org/

What's the difference between a raisen, currant and a sultana? You said to ask anything. 🤪

I've only ever heard of raisins and I hate them lol but I looked it up. Sultana is a dried green seedless grape and a currant is a tiny dried grape

TIL I learned that a currant is completely different from what I thought, and that green seedless grapes are called sultanas! Thanks, Milan!

TIL that too lol I didn’t even know those were words

I lost a very close friend of mine to DMD in April of 2019. He was such a wonderful human being. You doing this AMA is bringing back a lot of memories I had with him. Playing video games together was our favorite thing to do.

My question is how do you handle limited mobility and video gaming? Have you tried the xbox adaptive controller? What's your set up like?

Sad to hear that, I’m sure he was great.

I use a modified PS4 controller that is much lighter and has sensitive buttons, and less stiff thumb sticks. I combine it with an xbox adaptive controller using a Titan 2 adapter. I use the xbox adaptive controller for 3 buttons right now. I place 1 by head and 2 on the table I use and it's been working well. I can't really do FPS well but I can play most. I play on PS5, PC, and Switch occasionally.

Have you seen the film, “The Fundamentals of Caring”? If so what did you think? If not, I thought it’s a good laugh and would recommend giving it a go.

Guess a number between one and three thousand five hundred.

Yes, I’ve seen it multiple times. I enjoyed it, but I do wish someone with DMD played Trevor. That’s been a big discussion because a lot of disabled actors are being overlooked for roles that are perfect for them. A lot of the movie was accurate except for some aspects. Like when most of us need night ventilation, we usually use BiPAP not CPAP. I definitely enjoyed it though!

Do you like sausages and waffles? Lol thanks for the reply.

I don’t really eat meat besides chicken and turkey but I do enjoy the occasional Belgium waffle lol

What are you most greatful for, putting your current situation aside?

I’m probably most grateful for having a family that is always looking out for me. I know a lot of people don't have that.

Hi Milan, do you also have creative outlets that you've explored during quarantine? Video games and streaming are one thing, but creative spaces can be really helpful in my experience

I definitely agree, creative spaces can be really beneficial. I've been doing various art using Illustrator lately. I've mostly been practicing using the tools so I have been tracing over images using the pen tool since I can't physically use a drawing pad.

I don't know what music you're into but a guitarist named Jason Becker was diagnosed with ALS way back in the 80s, nowadays he has kept writing music with his limited eye movements. If that is something you're interested in I would check out some of the more modern notation software, you don't need much to be a composer :)

I think I know who he is. I might look into it. I never had much interest in making music but could be fun to do.

Hi Milan! I have two young sons, 4 and 7. Any advice or suggestions about what I can do or say when they encounter someone that has a disability, and possibly my child has a less than a polite reaction? Any insight you could provide from your experience would be appreciated.

Lastly, a very important question. What’s your bold prediction for baseball in 2021?

I think the best thing you can do is answer their questions. I’ve seen people shoo their kids away and just say that the disabled person is special which is just about the worst thing you can do. I think it's best to acknowledge that, yes they're disabled but they probably enjoy the same things and are just like them. I particularly would avoid using terms like "special needs" Even though it's widely used in schools and by parents of disabled children, a lot of us disabled adults hate it because it infantilizes disabled people. There are actually a lot of children's books that can help them understand better.

For baseball in 2021, I have to go with my Yankees to win it all if nothing interrupts the season!

I'm an RN and have had very little opportunity to speak with anyone who has been diagnosed with DMD; do you have any advice you would be willing to offer as to how I could best provide care to people with DMD in order to make their lives a little bit easier that the textbooks might not teach us?

My current assistant actually just became an RN last year so she’s actually told me I’ve taught her a lot compared to just the textbook. For me, speaking as a 24 old with DMD, a lot of my body parts are sensitive and atrophied so one wrong position of my arms, hand, or legs can really result in an injury. I've injured toes and fingers like that before. My best advice would be to ask them what movements they're most comfortable with. One other thing is we probably know our bodies better than you, so listening to what we're saying is beneficial. I've heard horror stories from people with MD having major issues after medical professionals dismissed what they were saying. Feel free to reach out on here or through social media if you have more questions.

I'm sorry to hear that horror stories of RNs has even had to cross your mind, any individual who fails to listen to physical concerns of another is concerning to me. I'll keep your advice in mind. Thank you for taking the time to answer my questions; be well:)

No problem! The fact you’re even asking shows me you care about your patients

In Chicago, during a rotation at a children's hospital, I got to see a trial where they used an adenovirus to inject the dystrophin gene into kids. It wasn't a cure, but it did reduce the decline a lot. Do you have access to that?

They have a variety of different trials but I probably wouldn’t qualify for the one you’re referring to. A lot of trials are used for younger kids which I understand and have specific criteria. I'll look into it though.

When you go out, how are public reactions to your physical state? And if they are generally unpleaseant, how do you ignore them?

People do stare quite often.I’m Honestly, it bothered me a lot when I was a teenager but at this point I generally don't pay attention. Obviously, I occasionally notice but I don't really have a specific way I ignore them, I just do. Although, I stare back sometimes lol especially if it feels like they're being judgmental.

Hi Milan! What supports you from inside. I mean, what do you lean on on the harder days? Thank you!

On the harder days, talking with friends seems to help a lot. I also try doing things that make me happy.

What would you say to a kid who is suffering with DMD to cheer him/her up?

Before I answer that, I want to say I really don't like using the word suffering because a lot of us that are older don't feel like we're suffering. Obviously some of us have pain but I don't know using "suffering" just adds to people feeling sorry for us.

When it comes to a kid feeling down about having DMD, it's a tough situation because it depends on why they're feeling down. I think a good way to make them feel better is letting them know you're there for them and just because they can't do something like everyone else, there are ways to do them differently.

I have a question. Why would you think this would be an interesting AMA?

I don’t really live a "normal" life and people are always asking me about how I do things so I felt this would be a good way to discuss the disease. I also did this a couple years ago and there was a lot of interest. It's certainly okay if you don't think it's interesting. It's not for everyone.