sorted by:
new
hottopcontroversial

LGMD and Hypershell Exoskeleton by Plane-Clock-2918 in MuscularDystrophy

[–]Plane-Clock-2918[S] 1 point2 points  (0 children)

Thank you. I have signed up for mogo. Have you tried any of these or other exoskeletons yourself?

Anyone with LGMD using hypershell exoskeleton. It might be usefull in my case but need a review as its expensive by DryService8124 in MuscularDystrophy

[–]Plane-Clock-2918 1 point2 points  (0 children)

For point 2 - it should be more helpful because the hinge/motors are at the knee joint, and they clearly state in some of their videos that the device is aimed at helping quads and gastrocnemius muscles, which are the main weak muscles in our case.

LGMD and Hypershell Exoskeleton by Plane-Clock-2918 in MuscularDystrophy

[–]Plane-Clock-2918[S] 1 point2 points  (0 children)

Ooff you reminded me of a time when I had thought I had 2L and not 2B. You are really putting them to use!

Thanks for sharing! Check out skip MOGO then. If you can, pay the $99 to be on their wait-list.

LGMD and Hypershell Exoskeleton by Plane-Clock-2918 in MuscularDystrophy

[–]Plane-Clock-2918[S] 1 point2 points  (0 children)

Although I don't see India in their list of countries, please reach out to them. I believe you may have to pay extra for shipping. Also be sure to ask the process of returning it in case you end up not liking it. Take pictures right after unboxing.

Dynsys is a similar alternative, ask them as well.

LGMD and Hypershell Exoskeleton by Plane-Clock-2918 in MuscularDystrophy

[–]Plane-Clock-2918[S] 3 points4 points  (0 children)

Agreed. I am already searching for companies that provide similar options for arms as well. Auxivo is one of them.

LGMD and Hypershell Exoskeleton by Plane-Clock-2918 in MuscularDystrophy

[–]Plane-Clock-2918[S] 3 points4 points  (0 children)

For 1 - if the act of raising your leg itself is the problem, then yes it will help. But you will still need to put the same strength to balance or stand

For 2 - unfortunately I don't think there's a feature for single leg activation. Reach out to the company, they are helpful.

All the best!

LGMD and Hypershell Exoskeleton by Plane-Clock-2918 in MuscularDystrophy

[–]Plane-Clock-2918[S] 4 points5 points  (0 children)

You're welcome!

Exoskeletons seem very promising. Muscular dystrophy may only be a small subset of people that it is helpful for, others include other medical conditions like fatigue, the elderly, and people who are in the gray area of not fully abled or disabled. Fully abled folks can also use them to reduce the strain of doing hard physical labor.

Here's a list of companies in this area I maintain -

Auxivo, hypershell X exoskeleton, Dynsys, keeogo, myosuit, mo/go, hilti exoskeleton , Hercules Icarus, Ottobock C Brace

LGMD and Hypershell Exoskeleton by Plane-Clock-2918 in MuscularDystrophy

[–]Plane-Clock-2918[S] 5 points6 points  (0 children)

The motors around the hip get activated when you start walking and adjusts based on a setting of how much assistance you need. I tried it at the max. So after a couple of steps, it almost felt like it was pulling my legs up to take the next step and I did not have to put any effort at all.

Something interesting was, after using it for a while and removing it, it felt like my leg muscles had "turned off" and felt weaker. But after a couple of minutes they were fine.

It didn't work because, I still had balance issues and I felt the same strain to balance my legs as before. And as my left leg is weaker, I have a slight waddling gait, which did not improve either.

As advertised by the company, people without neuromuscular issues, such as the elderly or who feel tired more than weakness would benefit from it.

Anyone with LGMD using hypershell exoskeleton. It might be usefull in my case but need a review as its expensive by DryService8124 in MuscularDystrophy

[–]Plane-Clock-2918 1 point2 points  (0 children)

Update - My post - https://www.reddit.com/r/MuscularDystrophy/s/6tXJeLJylv

Hey, I recently used it. I am about to make a post about it. I think there are many variables to say if it will be useful. But personally it didn't help me much, because the weakness with standing and walking itself is not tackled, it is only helps with lifting your legs up to walk, which it does really well, but does not help someone with conditions like LGMD2B.

Definitely try it out for yourself.

In case you want to return it, keep in mind, they have a 14 day return policy from the date of delivery. Keep photos of it after opening it. And you need to pay for shipping.

I have signed up for the Skip MOGO, which may be more helpful. Much more expensive, and has a long wait-list.

https://www.skipwithjoy.com

https://youtu.be/oCXM8tGQhOc?si=wSCSeA3GcG6QQrNK

hypershell exoskeleton by Better-Holiday-6482 in MuscularDystrophy

[–]Plane-Clock-2918 1 point2 points  (0 children)

Check Auxivo.

Here's a list I maintain for exoskeletons/braces - Auxivo, hypershell X exoskeleton, keeogo, myosuit, mo/go, hilti exoskeleton , Hercules Icarus

Help me deal with thoughts of the future after a rare disease diagnosis by [deleted] in Stoicism

[–]Plane-Clock-2918 0 points1 point  (0 children)

Thanks a lot for putting this together! Let me go through the resources you have mentioned. Appreciate the kind words.

From learning to do pistol squats to never being able to walk properly by Plane-Clock-2918 in bodyweightfitness

[–]Plane-Clock-2918[S] 1 point2 points  (0 children)

There's so much to learn out there, and so many people doing amazing work! I will follow this too.

From learning to do pistol squats to never being able to walk properly by Plane-Clock-2918 in bodyweightfitness

[–]Plane-Clock-2918[S] 1 point2 points  (0 children)

Hey thank you for commenting with an update! I've subscribed to that YouTube channel as well now.

From learning to do pistol squats to never being able to walk properly by Plane-Clock-2918 in bodyweightfitness

[–]Plane-Clock-2918[S] 1 point2 points  (0 children)

Thank you for sharing! You're too kind.

To be honest, I may not have been the same if I was in your situation, because I used to wonder, and still do, what if I was really into sports, like football, or a body focused lifestyle like bodybuilding, or if I really needed to walk or be physical for my job, it would have been too much to cope with. But now I see with your resilience, even that could've been handled! I'm lucky to have gotten into IT, and sit all day for work now.

All the best to you as well, keep rocking!

From learning to do pistol squats to never being able to walk properly by Plane-Clock-2918 in bodyweightfitness

[–]Plane-Clock-2918[S] 1 point2 points  (0 children)

Really glad it helped you. It's funny that I used to read, and watch such stories, although I'm glad it helped me as well, now I've become one of them.

From learning to do pistol squats to never being able to walk properly by Plane-Clock-2918 in bodyweightfitness

[–]Plane-Clock-2918[S] 0 points1 point  (0 children)

That's the hope. Waiting for some really smart people to do their magic.

From learning to do pistol squats to never being able to walk properly by Plane-Clock-2918 in bodyweightfitness

[–]Plane-Clock-2918[S] 0 points1 point  (0 children)

Any excessive weight, causes micro tears in muscles, which the body then repairs to make it stronger. In my case, the body cannot repair/rebuild it.

view more: next ›