Sometimes I can get a little frustrated with my #erbspalsy arm. I don't often wish that I had two "normal" arms. In fact, I like having #brachialplexusinjury as it makes me unique. I came into contact with Lincy, who lives in the Netherlands and she has Erb's Palsy in both arms! She is such an inspiration and she was kind enough to write this article. I hope you find it as motivating as I did.
Often you hear, “Erb’s Palsy is something you get on one arm”. Well this is not always the case, sometimes it occurs on both arms. I was born in 1992, it was a difficult birth while I was a small baby. Beforehand it was already clear I was in breech presentation, my parents and the midwife thought that I should be born with a C-section. The gynecologist did not agree and it would just go according protocol. Because there were more children born in the normal way while laying in breech presentation. This is where it went wrong, I got stuck with both my arms and came into the world with force. I was resuscitated as soon as I was born, fortunately this succeeded. Afterwards it turned out I had both my little arms limp along my body. Conclusion: Erb’s Palsy on both arms.
The third day after my birth I started with physical therapy. From that day until my seventh birthday I had to go to therapy three times a week. Besides that I had to practice at home three times a day. My parents have always been very strict with the therapy and the exercises. I’m really happy with that now because that is a big part of the reason I can do so much now with both my arms. But when I was younger I hated those exercises at home. My mother only hurt me, that is what I thought at that time. It was not easy for my mom because she only tried to help me. The physical therapy was something I liked because it felt like playing a game, also the therapist was really good with children.
After a while I gained much more movement in my arms. The physical therapy and the exercises at home helped. When I was three months old I had a surgery in my right shoulder/neck. I got a big scar in the shape of a L from my neck to my shoulder. The plan was to do a nerve transplantation (C5 and C6) at that time my right arm was the most damaged one. When I was 3 they started a surgery on my other arm, they moved some muscles so it was possible for me to touch my stomach. When I was six years old I had the same surgery. Afterwards they regretted the choice of only doing the surgery of C5/C6 on the right shoulder. They can see my recovery of the right shoulder after that surgery and think my left arm could have been better than it is now.
As a child, I never wanted to know what was “wrong” with my arms. When my parents wanted to talk about it I always did my fingers in my ears. Yes, in the meantime I could reach my head with both hands. When I was in elementary school I did not want to be inferior as the children in my class or my little sister. At one point my little sister got a jump rope, so I also wanted a jump rope. But still, after practicing and practicing every day, I suddenly managed to jump the rope! Admittedly in a strange, self-invented way, but I succeeded. The doctors always said I would never be able to open a door or something. I remember when I was six years old the doctor asked me to grab a pen from the table. I thought that was a strange question but did what he asked. They were very surprised that I could do that with no problem. I am the proof that there is much more possible than some doctors say as long as you have perseverance, and people with Erb’s palsy have that!
My time on elementary school actually went very easily. I did what everybody else did (in my own way) and I did not realize my arms were different. The only specialty I was not very good at was the gym class.
"We can show others we CAN do it, even when it is in a different way. I am convinced that I am a nicer person because of Erb’s Palsy. It does not always have to be negative, you can turn Erb’s Palsy into something positive."
At the age of 16 I was asked why I did not always participate in the gym class. I always answered that I had “something” with my arms. At that moment I still had no idea what exactly was wrong with my arms, because I still denied there was something “different” with me. Because I felt a little weird that I did not know what was wrong with my arms I went to my parents and asked them. That is how I ended up at the Erbse Parese Vereniging Nederland (Dutch society of Erb’s palsy). Since 2009 I work for the EPVN as an editor. I really like to do this, because in this way I feel like I am doing something for other people with Erbs palsy. As a young girl I missed the contact with fellow people with Erb’s Palsy, I did not know anyone who had the same thing. Thought I was “different”, that is why I got more active at the EPVN. I want to bring children/adults/parents in contact with each other and talk about it. Show each other what we CAN do and not to linger in the negative sides. Because that is what happens when you get out of the hospital and hear “your daughter has two paralyzed arms and keep in mind she would never be able to open a door in a normal way”. On paper it was not possible, but I am no paper and I have shown them that I can do it, and much more. Just like many others with Erb’s Palsy.
After high school I had to choose an education. I wanted to become a physical therapist because I had such a good experience with my own therapy. I also wanted to perform miracles on others. Unfortunately I did not have enough strength and movement in my arms to become a physical therapist. That is why I started studying for occupational therapist. This was a very nice education which I could do without needing strength and movement. Occupational therapy is thinking in possibilities and not thinking about what you cannot do. Thinking in possibilities is what I have been doing my whole life, so it was a perfect fit for me.
When I was 18 I went to a psychologist, at that time I was very angry at the gynecologist who did not wanted to do the C-section. As a result of which I have Erb’s Palsy, I kept thinking that it could have been prevented. But thanks to the conversations I had with the psychologist, I can look at it in a different way now. If someone asked if I want my arms to be any different then they are right now I would say no, Erb’s Palsy made me who I am and I am proud of that.
Of course there are some things I struggle with, for example the stability of my left shoulder. Because of the weak muscles in my left shoulder it often luxates. My left arm itself has reasonable strength but I cannot reach my back or raise it above my head. With my right arm it is the opposite I have the range of motion but not the strength in that arm/shoulder. Most of the times when I need to reach something above my waist I hold my right arm with my left to get the desired range of motion. I am now doing fitness for about three years, cardio and training with weights. The cardio is important for the blood flow in the arms and training with weights is important to build strength in my shoulder. By doing this my shoulder is more stable and cant luxate that easily. Building strength in my shoulder is a slow process but I notice a big difference. Because of the big difference it motivates me to keep doing it.
Last year I got a pinched nerve in one of my elbows (N. Ulnaris), surgery was needed. Because my elbow has another shape than most people have my nerve was shaving over a sharp bone in my elbow. I lost a lot of strength in my hand because of this nerve. It was needed to do surgery two times because the first simple surgery did not help enough. The first time they made a small cut in the case around the nerve, second time they completely relocated the nerve. After this operation I noticed my strength was getting better. The doctor said I could use force on my arm again in six weeks but because I did not want to lose flexibility in my arms I wanted to train again as fast as possible. After two days I was already going to the gym again, because of this I recovered fast and gained back the strength I had before the pinched nerve.
Gymnastics with Erb's Palsy
When I was about eight years old I started with gymnastics, I did this for about 5 years. I still do not know what I did those five years, because I cannot do a handstand or a cartwheel. I did not have enough strength to carry my weight on my arms. Also running was practically hard for me, as a little girl I was running without thinking about my arms so they were hanging limp behind my body. When I am trying to keep my arms with me while running, I have to keep thinking about them because it does not go by itself. This makes it difficult for me to breathe while running. I have much focus on my arms and I forget to think about breathing. Shot-put was something I did with a tennis ball, most of the other things I did the same as all the other kids. Nowadays I sometimes need to ask for help like hanging a bar above my head. I find asking for help a little difficult because I get the feeling I need to justify. This of course makes no sense, everybody is in the gym for themselves, why would they think something about me? And why do I care what others think about me? I do exercises with dumbbells of 1kg to 3kg next to the “big guys”, so what? I keep in mind that if they would know what I had to do all my life, how hard I had to train to achieve where I am now, they would have lots of respect.
In my daily life I actually do not come across much things I cannot do because of my arms. For everything I have a solution to do it in a way it works for me. I think I am quite lucky to have Erb’s Palsy on both arms because of that I am forced to use both arms. Also I do not have a good arm to make a comparison.
What I am trying to say with my story is, do not let people tell you what you cannot or never will do. There’s much more possible with the perseverance we have. We can show others we CAN do it, even when it is in a different way. I am convinced that I am a nicer person because of Erb’s Palsy. It does not always have to be negative, you can turn Erb’s Palsy into something positive.
Thank you I'd like to thank Lincy for taking the time to write such a detailed article. She really is amazing and I've never heard of someone with Erb's in both arms. She does incredibly well and is such an inspiration to all of us with Brachial Plexus Injury
Much love x