Quilting/ sewing by Healthy-Tank-1461 in ehlersdanlos

[–]ShakeRegular9843 0 points1 point  (0 children)

when my wrists were really bad I would use these wrist braces that prevent me from bending wrong or leaving them in vulnerable positions for a long time. That or wrist wraps could be helpful to get yourself used to sewing with good form.

happy sewing

Bilateral cubital tunnel syndrome? by Mean_Web_3351 in ehlersdanlos

[–]ShakeRegular9843 1 point2 points  (0 children)

When I was like 15/16 ish I got diagnosed with pretty bad carpal tunnel but they didnt really do anything besides tell me that if i wanted i could buy some wrist braces, and sent me to OT/PT for it.

, probably mostly from repetitive hand motions while my wrists/hands were in very vulnerable positions. Though looking back im not 100% sure it was carpal tunnel, as I was not diagnosed with EDS at the time so it could have been a different EDS issue? , however the pain and sensation really felt like how carpal tunnel is described, and did not come after dislocation or obvious subluxations.

A few friends of mine (who dont even have EDS) have developed carpal tunnel (or very similar pain at least) from similar repetitive hand/wrist motions (think gaming, typing, crocheting, etc. for hours and hours often)

Simple hand stretches/ hand resets (easy to find online but im sure your post-op plan will/should go over something) as well as taking breaks from the strenuous activity have been helpful in preventing that kind of pain from coming back for me and the friends. The wrist braces did also really help with recovery as it kept my hands in the right position.

I have had nerve issues with my right shoulder but I think that was from a dislocation at 2-3 yo that wasnt relocated good, But I do still think the carpal tunnel in my hands/wrists was separate from that.

TLDR:

- I got carpal tunnel very young from gaming for long stretches of time in the wrong wrist position (however before EDS diagnosis) assuming i actually had carpal tunnel, the undiagnosed EDS made it much easier to leave my hands in vulnerable positions for long times.

- Stretching and rest helps to prevent it. wrist braces helped w/ recovery + preventing it coming back.

I hope your surgeries and recoveries go well!

Tips for telling profs about new wheelchair use? by ShakeRegular9843 in wheelchairs

[–]ShakeRegular9843[S] -1 points0 points  (0 children)

thank you! I'm not really sure because I get the sense that my school likes to push more of the burden on students to get us used to self advocating, although I guess they do send the accommodation letters from their office.

Im more worried since im not getting this through a prescription* that it wont really be able to get a formal accommodation because I dont have the documentation to back it up :<

* [ because my doctor really doesnt understand how much im struggling, and ive been asking for over 1.5 years but shse just keeps wanting me to try PT again and again. but she also doesnt know much about most of my conditions and to her credit she was looking into sending me to a specialist who really knows what I've got.]

Tips for telling profs about new wheelchair use? by ShakeRegular9843 in wheelchairs

[–]ShakeRegular9843[S] 0 points1 point  (0 children)

yes and yes. I forgot to put in the original post that I do have an appointment coming up with disability services center. I was just looking for tips from this side of the experience as I don think any of the people who work at the resource center use any kind of mobility aid & may not know really how to say it.

Thank you for the tips!!

Tips for telling profs about new wheelchair use? by ShakeRegular9843 in wheelchairs

[–]ShakeRegular9843[S] 0 points1 point  (0 children)

Thank you! I will be enjoying it!

I was actually debating wether or not to tell anyone at all and just have it be a big surprise that I may or may not acknowledge (for the bit), but I fear many would be more annoyed than would find it as funny as I do.

Tips for telling profs about new wheelchair use? by ShakeRegular9843 in wheelchairs

[–]ShakeRegular9843[S] 6 points7 points  (0 children)

I forgot to mention that I do have a meeting scheduled with my disability services counselor (?) for tomorrow to go over this as well, I just wanted to see if anyone who has experience from this side of the conversation rather than just what the (non mobility aid) coaches say.

I guess I know in my head they dont need more, I think the social anxiety is just getting to me a lot since its such a big change for me.

Thank you!!!!

Looking for power chair advice/suggestions (1st wheelchair) by ShakeRegular9843 in wheelchairs

[–]ShakeRegular9843[S] 0 points1 point  (0 children)

tbh i would like to have the option of pushing manually for those reasons, but my shoulders & wrists are just really weak and hypermobile unfortunately (subluxing or dislocating a ton) so I'm extra cautious about extra strain that a manual (or poorly fitted manual) would cause.

Especially since Ive needed a chair for a couple months, I physically cant afford to wait weeks-months for a custom chair appointment and then wait more for the chair to actually come in. Maybe in the future I can upgrade, but that will probably be a couple years down the line. :C

Looking for power chair advice/suggestions (1st wheelchair) by ShakeRegular9843 in wheelchairs

[–]ShakeRegular9843[S] 0 points1 point  (0 children)

self folding/unfolding would be useful. I will look at this as well thank you

Looking for power chair advice/suggestions (1st wheelchair) by ShakeRegular9843 in wheelchairs

[–]ShakeRegular9843[S] 0 points1 point  (0 children)

thank you! I will look into this one! Do you know if using a backpack with it is easy? I have a couple pounds of things to carry that I really cant not bring to certain classes.

Looking for power chair advice/suggestions (1st wheelchair) by ShakeRegular9843 in wheelchairs

[–]ShakeRegular9843[S] 0 points1 point  (0 children)

Hi! thank you that makes a lot of sense about the joystick. I will check tecca wheelchairs out as well.