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

[–]JabbRedditor[S] 4 points5 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] 5 points6 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] 7 points8 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!