Hi! Im Ramona and I'm new to this group. Im 19 years old and ive lived with erbs palsy my whole life. Most people never notice it but it is something that I have always struggled with. I saw physical therapists as a child but I never kept up with my exercises because I didnt want to remind myself of my disabilitiy. I have limited motion like not being able to spread my hand out or keep my wrist straight, but i never let it hold me back. I use my erbs hand to write, type, and other things. Ive played sports and im trying to exercise my arm more now. But lately I have been very discouraged. I feel like I am loosing some of my mobility and lately my thumb has been twitching alot. It makes me feel really depressed and I feel like a failure. I really want to build up the mobility that I once had. Does anyone have any tips on exercising or easing the effects of your erbs palsy?

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Nicole J - posted on 10/23/2015

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I am 20 and have also had erbs palsy my entire life. I have never considered myself disabled. I am always in constant pain in my shoulder and yes i get the nerve spasms. However I agree that is a silent condition that even my parents don't fully understand the mental strain it has on me. Any kind of exercise or stretched pained to no end and just discouraged me. I never stuck to any sports for longer than 5 years of Touch Football at primary school.

However the most movement and least pain I ever managed to get was while I was doing Karate with GKR. I found I managed to find the Courage and motivation to push past the pain and keep going. Since stopping for my knee injury I can feel that my shoulder has gone backwards slightly and pains me more.

The best advice i can give you is find something your passionate about. Something that will help motivate you past the pain, past the point where you feel your arm could not possibly stretch anymore. Find Something that can distract you while helping you heal.

Katelyn - posted on 07/23/2015

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Try pull ups I have occasional twitching in my upper arm it's just spasms. I'm older now but as a kid I did a lot of monkey bars pull ups and rolling in giant ball and walking with my arms. From what I remember. Don't get discouraged!

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Olgasuarez57 - posted on 03/29/2017

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I have Erbs Palsy, too. I am 59 and have started feeling a lot of pain for a few months now. I started physical therapy recently and seems to be working. My suggestion would be to keep the muscles stretched. My therapist has done an exceptional job explaining EP.
EP never stopped me from doing anything. I use my right arm to bowl, cut, pick things up and many other functions.
Keep using the armas much as possible. Work on your posture. Because the muscles tend to shrink, working the is important.
Be proactive. Don't wait till the pain sets in to get help.

Melissa - posted on 02/17/2016

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Hi Ramona,

I am a mother of a beautiful daughter that has right Erb's.... She has shared with me many similar feelings as you have expressed.... I can only imagine the amount of discomfort you have felt but one thing I have learned from my daughter is that you are resilent, adaptable, and survivors... What I try to remind Alexa is that it's not the will or determination preventing her from complete a task it's just her " normal" and something her body won't let her do... I know it doesn't always work or help but she has says at times it helps!
Alexa also hates the idea of doing daily stretches be of her disability so we have tried to reframe it by having her end her nights with yoga and we got her a membership at the community centre and she swims at the local pool three times a week.
I wish you all the best and don't be to hard on yourself.

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