New Hope for my Erbs Palsy

[jgjuka18]

Tomorrow I’m going to have an evaluation for this myomo brace for my Erbs Palsy (brachial plexus injury). I’m so excited and nervous. When it comes to my arm and shoulder I have never received good news besides “it hasn’t gotten worse” and this time it looks promising. I’m just not sure if I can get someone to watch my dad so I can go. I seriously never qualify for any help with my shoulder and it really gets to me, but now I finally might! I need to stop getting excited though. I might not be approved. I know I haven’t shared much about my Erbs Palsy on here yet, but I promise I will. Please ask me any and all questions!

[faulhallen]

I had to look up erbs palsy so I’m definitely not an expert but that sounds like it would make life more difficult.

Did you get someone to watch your dad and how long until you get the news? I hope you finally get some help with it!!! 😃

[jgjuka18 in reply to faulhallen]

Thank you so much for supporting me! It has made life difficult because it alters my appearance and use of my left arm. My injury happened during my birth so I never knew life with two normal shoulders so I’ve adapted but it still makes life harder.

Even though I do have partial paralysis of my shoulder I have to much function to qualify. That is good and bad because I want to have more function with my arm but I’m glad I’m to normal. To help put things in perspective, I can touch my nose with my hurt arm but my elbow sticks out and I bring my head to my hand as well as my hand to my head. It is difficult, awkward and uncomfortable but I can do it so that is what they mean when they say I’m to functional. Thank you for asking. I hope you understand what I’m saying.

[faulhallen in reply to jgjuka18]

I think I understand what you’re saying but I’m both glad and saddened to hear about your level of function. You would think that if it could help you it shouldn’t matter.

I hope that you got to go to the appointment and that everything turns out for the best! 🙂

[jgjuka18 in reply to faulhallen]

Yeah I did go and they were interested in my case but didn’t have a option for me right now. They said they will keep in touch though

[SweetPurpleSally]

Wow.. I just looked up Erbs Palsy, and it's kinda crazy...my husband also has a brachial plexus birth injury.. He has most feeling, but limited motion, and his arm didn't grow properly. He went through a few surgeries before I met him to give him more mobility (but he kinda regretted the last one). I know it's something you have to face every day..and constantly thinking that's all people see. Or at least that's what my husband faces. I'm sorry you have that on top of taking care of your dad and dealing with mental health issues. That's a lot to work through.

[jgjuka18 in reply to SweetPurpleSally]

Oh wow! I don’t really know anyone that has Erbs Palsy which is a brachial plexus birth injury. Im not sure the classifications for it to be diagnosed as one or the other but I’ve has surgeries as well but I was 7 years old at the time. Now if I stick out both arms my bad arm is about my hands length shorter. I can’t turn my palm up or put my arm behind my head or back. It is something I deal with daily and sometimes strangers ask me why does my shoulder look weird which is why I’m self conscious of it. I hope your husband is doing well and is pain free. Thank you for reaching out to me. 😊

[SweetPurpleSally in reply to jgjuka18]

Yeah he had surgery when he was young and then again in middle school. They took some muscle from his inner thigh and put it on his arm. For a time, he tells me that he could scratch the spot and feel it on his leg! His is kinda permanently in a bent position, but it helps for holding things more securely in that arm. His range of motion is mostly just being able to swing his arm a little bit from the shoulder, but there's no other movement than that. And a little strength in his fingers to grasp somewhat. The length is probably about half of his other arm, but he's a big guy so it probably makes a difference! He's definitely not in any pain though. I know he used to work with kids, and to stop them from asking questions he told them it was a shark attack. I'm sorry your appointment didn't go as hoped though..

[jgjuka18 in reply to SweetPurpleSally]

Yeah I swing my arm into places because it can go there but I can’t do it myself. My hand has amazing function and strength which is very helpful because I can swing my hand behind my head to do my hair and I have full use of my hand basically. That is a good idea to just make something up. I do tell people I have Erbs palsy and either they say oh okay or ask more questions.

[SweetPurpleSally in reply to jgjuka18]

Oh that’s great! That definitely helps things. And do people at least ask politely? There’s been times I’ve been realllll close to smacking someone for asking in a rude manner, or worse, staring. And also, don’t assume whether he can or can’t do something!

Hopefully people have been kinder to you!

[jgjuka18]

They do ask kinda politely but it’s still awkward. For the most part they aren’t asking because they want to learn.

[matthew2909]

Hey how are you you ok I’m Matthew I’ve got erbs palsy too you ok

[jgjuka18 in reply to matthew2909]

Hey! Today I’m in pain but it isn’t horrible. How are you? How is your arm? My name is Jillian and I’m 24 just so you know.

[matthew2909 in reply to jgjuka18]

Aww I’m always here if you ever need or want to talk about it or anything and I’m ok thanks and it’s ok it’s getting their I’ve got no use of my arm but a little bit in my hand and I’m Matthew and I’m 21

[jgjuka18 in reply to matthew2909]

Thank you! You’re very kind. I’m here too. I can listen, offer advice, or share my experiences. Did your injury happen at birth? Did you have surgery?

[matthew2909 in reply to jgjuka18]

Thank you u too yep and yep but it’s not worked so their kind of trying new things to help to see if that works if not they will look down the surgical route wbu

[jgjuka18 in reply to matthew2909]

Mine happened during birth and I’ve had surgery. I was 7 and I had a muscle nerve transfer. It was to prevent sporadic dislocations which I’ve never had that happen so I guess it worked.