I'm Milan Patel, this is my 2nd AMA. I am a Wheelchair user living with a Neuromuscular disease called Duchenne Muscular Dystrophy (symptoms have similarities to ALS). I don't have many physical abilities anymore. I'm also a YouTuber and Graphic D...
Some of you may remember the AMA I did a little over a year ago. I got an overwhelming response last time so I thought it was time I did another one.
If you don’t, I was born with Duchenne Muscular Dystrophy and have dealt with many things related to it. Most people don't feel comfortable asking about disabilities even though they might be curious and just assume things. As I'm getting older, I've been advocating and informing a lot. My goal is to leave a lasting impact and I hope someone will learn something new from this.
Some background about me:
- I lost the ability to walk about 14 years ago when I was 9.
- I really have no arm strength. Just enough hand and wrist strength to control my power wheelchair and use a computer mouse and use a customized PS4 controller.
- I have lost a cousin and uncle to DMD.
- I use Non-invasive ventilation which is using a ventilator to take deeper breathes using a mouthpiece during the day as needed and a mask at night
- Started a YouTube channel about 1 1/2 years about different adaptions in my life and things I enjoy. https://www.youtube.com/c/MilanPatel
- I have developed a photography hobby in the last year.
I will answer any question so please ask me anything at all! Hopefully, you'll learn something new!
Here's proof: https://www.instagram.com/patelasaur/
If you want to follow along with my life, feel free to check out my YouTube and Instagram linked above.
Edit: I am back answering throughout the day!
To be honest I don’t remember that much from being physically independent but I definitely wish I was able to spontaneously go somewhere without thinking about assistance.
That's super fair. I can't even imagine having to worry about that on a constant basis like that.
But I don't always dwell on what I can't control. If I did that, I would never be happy.
That's an amazing way to look at it. Does it get easier over time or is it just perpetually hard to deal with?
Do you mean dealing with the disease or disease progression? It gets easier to deal with if my weakness is steady. It's been steady for the last couple of years.
In terms of dealing with the lifestyle changes associated with dealing with such a disease. Is it just perpetually a difficult thing to do or is it so habitual at this point that you've got a handle on it?
It does get pretty habitual. I basically adapt as things come up. Like I mentioned, it does get Difficult when there is a dramatic change but it's easier when it's steady.
Ok, so how do you masturbate? (Legit question)
LOL I knew this question was coming. Well I still have some hand movement. Not saying anything more than that but options do exist.
Is there anything that people often offer to do for you that you find more offensive than accommodating?
Hmm, probably when people try guiding me through tight spaces or doors by trying to push my wheelchair "to help." My wheelchair is too heavy to move like that and doing that only adds to what I need to think about. I wouldn't say I find it offensive but it is definitely annoying.
I have a very lightweight active wheelchair as I have a strong upper body, but regardless of the situation, do not ever try to help a person by randomly pushing their wheelchair. it’s annoying. Ask if help is needed first.
It’s amazing the number of people that try to do this. It’s essentially the same as grabbing someone’s shoulders and pushing them. I’m glad my chair can’t actually be pushed without it being in manual mode.
Let's say you try to move like you would do it normally without any disease what happens? I mean, of courses you can move but you feel like you're "sending" the order of moving but you just can't? Or how does it feel? (Sorry for my English I hope you can understand any way) .
I understand what you’re asking. That’s actually a great question. So for example I try to raise my arm. My brain sends the signal but the muscles in my arm don't have the strength. My arm feels heavy weight at that moment.
Have any aspects of life gotten better for you in any way after you lost your physical capabilities?
Good question. I’d say I have more empathy towards people that I probably would not have had. It’s a little tricky to answer because everything doesn’t go out at once, it’s gradually.
What’s your favorite part about graphic design?
I actually just switched majors to it about 6 months ago but my favorite part is being to bring out emotion by editing images. If you check out my Instagram, I have several photo edits I’ve done for fun.
What are your favorite PS4 games?
The Last of Us is one of my favorites. I played it for the first time last year. I thought Days Gone was pretty good, Assassins Creed. I mainly play games with storylines. Just finished Stars Wars Jedi: Fall Hero. I just started Uncharted for the 1st time this week. Going to play through all 4.
Check out No Mans Sky - not a hard storyline game but worth checking out. Thanks for sharing your story. All the best!
I have a list of games to check out, No Mans Sky is already on it!
What is something you want to experience the most? Do you think that you would ever consider living on your own? My brother has the DMD as well and I don’t think it’ll ever be an option for him. Sometimes my brother will get so frustrated with everything that he just explodes with emotions, do you experience that too? What is the best way to help with that?
I want to experience success in the career field I have chosen. I definitely would consider living on my own at some point. I know some guys who live in their own places. It's certainly not easy but can be possible with the proper assistance. I definitely experienced that frustration when I was younger. I've found ways to cope with it. How old is he? Maybe he might benefit from talking to a counselor or therapist. I know some guys have benefitted from that.
He is 16
Yeah that’s age when frustration starts in general, especially with DMD. If you want you can private message me. I might be able to help you help him.
Hi! I have a few questions if you don’t mind.
I have a TBD neuromuscular disease and have been a full-time crutch user for most of my life & an ambulatory wheelchair user for the past several years. I’ve been to every specialist out there but no one can figure out what’s wrong, and all the specialists disagree about what it might be before settling on “well we know it’s got these several aspects, so let’s just try to manage the symptoms.”
How do you manage the hopelessness & frustration of having a chronic illness? How long did it take for you to get your diagnosis and how did they figure out what it was? Do you find the atrophy to be worse than the dystrophy or vise versa? Also, what wheelchair do you use, I’m up for a new one soon!
Thanks in advance and I hope you have a nice day!
I’m going to try to answer these the best that I can. I have to say I don’t really feel hopelessness but yes there can be frustration. When I feel this way, I usually just do something that I enjoy. As I have gotten older, I started seeing that opportunities do exist for me.
I was diagnosed before I turned one. It all started with my pediatrician noticing I was hitting the typical growth milestones for a baby. She sent me and my parents to a specialist which started a chain of different doctors to eventually getting a blood test that showed high levels of Creatine Kinase (CK) which was a sign that led to getting a muscle biopsy. During all these visits they asked about family history. My mom and other relatives knew my uncle had something but they didn’t know what. He passed away before I was born. However there were a lot of pictures of him so they showed some to the doctors and they were able to figure out from seeing the progression that it was likely DMD. The muscle biopsy basically confirmed it. Although for some reason the biopsy wasn’t able to confirm the exact mutation of DMD. These days there is a simple blood test to see exactly what my mutation is which I did last year.
I find the atrophy worse because it affects my positioning and can hurt when limbs are stretched more than capable.
I use a Permobil c500 but they don’t make it anymore. The current equivalent to that is the F5 I believe and I actually like it better but it was announced 2 months after I got my c500 so I couldn’t get it. I’m due for a new one in about a year though.
One of my cousins suffers from Duchenne Muscular Dystrophy and it's 100% fatal. Do you have an expected timeline or is yours non fatal ? (Sorry for being ignorant on this subject)
Oh yeah it is definitely fatal but timeline varies. They typically say 20s but I know several guys in their 30s and 40s and a couple I know of in their 50s. It all depends on heart and lungs health.
Are you like lester from GTA 5?
I never played it before but I just looked him up. From how they describe him, it sounds like he has a different form of MD or a different disease.
What made you decide to become a graphic designer in the first place? How did you overcome the challenges you've faced or are facing to go to college for that?
Something about creating things by editing pictures just feels fun for me. I can't really put it into words. As far as challenges, I take online classes which works well for me.
Thanks for letting us ask you questions! How are you feeling today?
I enjoy answering and hopefully informing too. I’m feeling great today! How about you?
I'm alright, feeling a bit under the weather due to this cold I have, but i'm otherwise good.
I’m currently trying hard to avoid a cold because my whole house has one.
One of my friends sons has MD, it’s a very rare type that doesn’t have a name and his symptoms started when he was very young. He’s an awesome kid and they’re a lovely family but I often feel like I don’t know what to say to my friend, or how to support her. Can you shed some insight into this?
Thanks for this AMA
Do you know what type? The biggest advice I have is to not feel sorry for them. A lot of distant family friends often look at me and I can see from their face they feel like I’m miserable. Also be sure to keep in mind accessibility when inviting them places. There have been many times where I’ve been invited places to only get there and find out that it isn’t accessible.
Hii!! Love the openness! If someone wants to be your friend, what should they do?
Thanks! Do you mean in general or you specifically?
I’d say people should just come up and say hello. For you specially, feel free to send me a message on Instagram. I always respond to people
Hey! Hope your well. I have a chronic spinal illness but I can walk etc but not without extreme pain. absolutely nothing compared to what you have to deal with. I suffer a lot with anxiety and depression as I can’t do anything I used to love and I also worry about falling etc when I am out so I tend to stay in now. Do you have any advice on how you deal with days you are feeling down and do you have any hobbies that you really enjoy? I am struggling to find things I can do as a hobby atm. I really love you positive and fun nature. You are awesome!
I’m sure what you’re dealing with is tough for you. I’m a big fan of television and movies so when I’m down, I try to watch something new that helps me think about something else. Some other hobbies I have are photography and video games.
Photography is something I didn't think I'd ever be able to do but I figured out workarounds
An old classmate of mine from high school has DMD and by the time we graduated (class of 2017, living in Quebec so high school ends at grade 11) he was in an electric wheelchair and couldn’t support his own head and wasn’t able to write on his own. My question is, is that advanced or normal for someone of that age with DMD?
That’s pretty normal I’d say. I needed head support at that age and started loosing my writing ability the next year. Obviously, it varies person to person but that’s an accurate estimate.
Are you in pain?
There are certain positions that hurt and I feel soreness on some days, especially cold days but generally I'm never in significant pain. If I am sitting in a comfortable position with correct positioning, there's usually no pain.
How’s the sex life?
Nonexistent at this point currently
What is the biggest thing you miss about being completely physically independent that most people wouldn't even think about?
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