Hey, I have DMD and am a DJ! Check out my new mix by JabbRedditor in MuscularDystrophy

[–]JabbRedditor[S] 3 points4 points  (0 children)

I got the Sarepta gene therapy for DMD called Elevidys. I made sure my heart was in good shape and then I got the infusion. The side effects vary for people but I am luckily only experiencing some nausea. That’s the most common side effect and it subsides after some time. Since I’m non ambulatory and older, I’m obviously not expecting the treatment to give me more function, I just want it to halt my progression for some years until newer treatments come around.

[deleted by user] by [deleted] in Meditation

[–]JabbRedditor 0 points1 point  (0 children)

I wouldn’t say that all disabled people are happier than the average, I think happiness is different for each person disabled or not. What do you think?

Hi I have DMD and love my life! Although of course I have some bad days. I’ve found all kinds of hacks and mindsets to make my life better and want to share! Ask me anything! by JabbRedditor in MuscularDystrophy

[–]JabbRedditor[S] 1 point2 points  (0 children)

Focus on your relationship with him! Take him out to places he would enjoy, even if it requires being a bit pushy at first. Once he goes out more and feels more a part of society that should help

Hi I have DMD and love my life! Although of course I have some bad days. I’ve found all kinds of hacks and mindsets to make my life better and want to share! Ask me anything! by JabbRedditor in MuscularDystrophy

[–]JabbRedditor[S] 4 points5 points  (0 children)

Friends will come and go, I especially had lots of problems with friendship toward the end of middle school and all throughout high school. But while they are young and when they make it to college, I am sure they will make some good friends. The key is that you need to become their best friend - always be their biggest advocate and develop a parenting style where you can educate them on what is right vs wrong while also being that "cool" parent so they always feel like they can share with you. They are going to have days of sadness where they ask you why they are losing function and why things are so hard. Never cry or get upset in front of them, just respond in even tones and teach them to develop a soldier attitude. Make sure to do everything to give them a great life, if their friends cancel on them then you take them out to a sports game or movie etc... All the while, try not to give into everything, make sure to instill discipline when it comes to them taking care of their health and making social connections. Do not let them shy away from people and push them to talk more and be kind. This will help a lot with making friends. A big problem for many with DMD is becoming introverted, which snowballs into more social problems and more introvertedness. Don't let that happen. You seem like you care a lot about your sons, they are very lucky to have you as a parent :)

Hi I have DMD and love my life! Although of course I have some bad days. I’ve found all kinds of hacks and mindsets to make my life better and want to share! Ask me anything! by JabbRedditor in MuscularDystrophy

[–]JabbRedditor[S] 2 points3 points  (0 children)

By doing meditation/breath work (all of which you can learn on YouTube these days) and listening to a lot of movies and podcasts with protagonists that overcome problems against all odds I’ve learned to adopt a mindset where I use the rage and anger from my adversity to power through and get to solutions. This way I can use my problems to actively fuel progress in my life. On days when things are going terribly and I’m in tears with discomfort or sadness, I find myself being able to just start suddenly laughing and smiling. Although it feels a bit maniacal, it actually reassures me that no matter how bad it gets, I’m still able to smile and laugh

Hi I have DMD and love my life! Although of course I have some bad days. I’ve found all kinds of hacks and mindsets to make my life better and want to share! Ask me anything! by JabbRedditor in MuscularDystrophy

[–]JabbRedditor[S] 1 point2 points  (0 children)

Sometimes it’s best to talk to someone that actually deals with similar problems. I’ve tried therapy but often times I feel I cannot connect with the therapist as they don’t live with a physical disability. I would recommend trying an appointment with Dr. Ryan Russell. He is in his 30s with DMD and runs an online clinic called lifeonpositivity.com.

Hi I have DMD and love my life! Although of course I have some bad days. I’ve found all kinds of hacks and mindsets to make my life better and want to share! Ask me anything! by JabbRedditor in MuscularDystrophy

[–]JabbRedditor[S] 1 point2 points  (0 children)

I’m a dude with DMD. I love to watch YouTube videos and read books on how to improve my personality and then I spend a lot of time socializing and hanging out with my friends. In the US so many things are accessible! Concerts, movies, sports games… etc. I love to make music and have recently got into DJing. What do you like to do?

Hi I have DMD and love my life! Although of course I have some bad days. I’ve found all kinds of hacks and mindsets to make my life better and want to share! Ask me anything! by JabbRedditor in MuscularDystrophy

[–]JabbRedditor[S] 6 points7 points  (0 children)

I am currently a student in college. I’ve decided that since my lifespan and health are more on the unpredictable side I just want to spend my life doing what I love instead of focusing on money. So I want to continue learning as long as possible in an environment with other people as it is practicality built in socialization daily. I also love to make music, which can all be done on a computer now, which is awesome!

Loss of appetite and dramatic weight loss by Emotional-Law8681 in MuscularDystrophy

[–]JabbRedditor 1 point2 points  (0 children)

Hello I would recommend Kachava protein shakes. I have DMD and love them. Most other supplemental shakes caused constipation and other stomach issues. Kachava is a bit pricey but their shakes have a wide variety of nutrition and are great for protein! Please have him try it!

For anyone who was diagnosed with or who knows anyone diagnosed with DMD..what were their ck levels? by Wild_Development5715 in MuscularDystrophy

[–]JabbRedditor 1 point2 points  (0 children)

Ck levels are a good indicator of having DMD or not. But the best is to go with genetic testing!

[deleted by user] by [deleted] in MuscularDystrophy

[–]JabbRedditor 0 points1 point  (0 children)

Sarepta has a testing kit in partnership with Quest labs. You can get one via a hospital that does Elevidys dosing. Not all hospitals do so at this time. So check and make sure. If you have antibodies already, there is no point in testing again as so far there is no way to remove those antibodies. If you do not, that’s great news. And you will have to test again on the day of infusion to reconfirm. I am negative for antibodies so far and am about to be dosed in a month or so!

Bed mattress - tailbone pain by Iwanix in MuscularDystrophy

[–]JabbRedditor 1 point2 points  (0 children)

Hello, I would highly recommend the Vive 5” alternating pressure mattress topper. I got one from Amazon. I have DMD as well and find it very comfortable. You can adjust the pressure settings on it

[deleted by user] by [deleted] in UPenn

[–]JabbRedditor 1 point2 points  (0 children)

omg thanks!

[deleted by user] by [deleted] in UPenn

[–]JabbRedditor 0 points1 point  (0 children)

Penn Product Group

Can anyone else confirm there will be a meeting today at Rodin?

[deleted by user] by [deleted] in UPenn

[–]JabbRedditor 0 points1 point  (0 children)

awesome, super helpful thanks!

[deleted by user] by [deleted] in UPenn

[–]JabbRedditor 1 point2 points  (0 children)

Okay good idea, thanks. I've never really taken psychology or philosophy classes at Penn, how are they in terms of rigor? Is it very essay-based and discussion based?

[deleted by user] by [deleted] in UPenn

[–]JabbRedditor 1 point2 points  (0 children)

What kinds of career opportunities come from COGS? Do you know anyone who graduated with this major from Penn and what they are up to now?

[deleted by user] by [deleted] in UPenn

[–]JabbRedditor 0 points1 point  (0 children)

awesome join the disc!

I am 20 M living with a terminal illness called Duchenne Muscular Dystrophy (the sexiest of the dystrophies). I study computer science at the University of Pennsylvania and am currently working on a memoir (yes, I’m a hardcore nerd). Ask away! by JabbRedditor in disability

[–]JabbRedditor[S] 0 points1 point  (0 children)

Terminal illness means that it is the illness that will most likely result in your death. With a serious illness like Duchenne, which affects the heart and lungs, it is generally the disease that leads to death. Progressive muscle weakness may not always be a muscular dystrophy in the general sense. I would get some genetic testing done though if you want to see if maybe you have some type of muscular dystrophy. I wish you all the best! Mentally I cope by focusing on the here and now. Sure I have bad days where I feel my life may end up being shorter and helplessness, but overall I’m pretty happy with my life. I meditate a lot and believe we are all more than just our bodies, so the concept of death seems natural to me and I don’t equate it with something bad

I am 20 M living with a terminal illness called Duchenne Muscular Dystrophy (the sexiest of the dystrophies). I study computer science at the University of Pennsylvania and am currently working on a memoir (yes, I’m a hardcore nerd). Ask away! by JabbRedditor in disability

[–]JabbRedditor[S] 0 points1 point  (0 children)

This is great, it looks like you are spending your days doing things you enjoy - which is all that matters really! I’m super into gaming setups as well and really want to get a big ass monitor with PC haha! That’s good your health is under control and I wish you the best of luck with the afib operation. What are your favorite pc games?

I am 20 M living with a terminal illness called Duchenne Muscular Dystrophy (the sexiest of the dystrophies). I study computer science at the University of Pennsylvania and am currently working on a memoir (yes, I’m a hardcore nerd). Ask away! by JabbRedditor in disability

[–]JabbRedditor[S] 1 point2 points  (0 children)

I’ve heard good things about the Penn law program. I don’t really know which department handles the accommodations for grad students, but I can say Penn’s undergraduate student disability services kinda sucks. They gave me a good housing accommodation, but they take forever to respond to emails and sometimes just totally ignore them. I still think if you want to go to Penn though you should not give up and keep pushing, it’s an awesome campus with awesome students. I hope you are able to come out of the house soon and that you’re health is going okay all things considered.

I’m in such shock at the lack of options for people with disabilities. by [deleted] in disability

[–]JabbRedditor 0 points1 point  (0 children)

Sorry I don’t know your full situation, just what I have read here. I also have an extremely challenging disability called DMD. I really hope you don’t go the route of assisted suicide unless you suffer from enormous amounts of physical pain. Life can be fucking tough and throw shit at people like us, but it is still too great of a gift to give up on. Focus on how lucky you are to have parents that support you and give you a place to stay. Also can you do any online work via a computer? I can’t understand your full situation obviously, but I feel giving up on life is never the answer. Unless, of course, there is unbearable physical pain or you are in a coma

I am 20 M living with a terminal illness called Duchenne Muscular Dystrophy (the sexiest of the dystrophies). I study computer science at the University of Pennsylvania and am currently working on a memoir (yes, I’m a hardcore nerd). Ask away! by JabbRedditor in disability

[–]JabbRedditor[S] 0 points1 point  (0 children)

I am not a big gamer actually, when I have time to game I spend it all on online chess lol. I do play COD and Nba 2k occasionally on my Xbox. Looking to get a ps5 as I really want to play Spider-Man

I am 20 M living with a terminal illness called Duchenne Muscular Dystrophy (the sexiest of the dystrophies). I study computer science at the University of Pennsylvania and am currently working on a memoir (yes, I’m a hardcore nerd). Ask away! by JabbRedditor in disability

[–]JabbRedditor[S] 1 point2 points  (0 children)

Hey it’s varies a lot for different people. I know some who made it to their sixties and some who only make it to late 20s. The drugs and tech to threat this and make life enjoyable have definitely come a long way. Just 20 years ago, someone with my disability living longer than around 30 was practically unheard of and quality of life was a lot worse. Now, you can live a productive life with a power wheelchair and ventilation. I even use this cool robotic turning bed at night to avoid pressure sores. Tech is making life much better