Our featured patient is Dana, a 15-year-old CPNUE patient. She was interviewed by CHArm Center staff and provided some insight about her experiences with the CPNUE service and her condition.
If you have any questions for the CHArm staff, or if you would like to share your own story about your hand or arm condition, please contact us at charmcenter@hss.edu.
CPNUES: Tell us a little bit about your family and yourself.
I have one younger sister named Nell. She is 8 and is in the 3rd grade. I live with my Mom and Dad in Manhattan. I'm in 10th grade. I have a puppy named Roscoe.
CPNUES: What is the earliest you remember your muscles not doing what you wanted them to?
I don't remember. I just always had it that way.
CPNUES: How do you deal with frustration when you cannot do things with your arm that you want to?
I work around them and find different ways to do the same activity.
CPNUES: Did you like therapy? Did you think it helped?
I do like my therapist a lot, that's why I like it so much. There are times that I get frustrated during therapy. Yes, therapy helps, and it makes daily living easier.
CPNUES: Did you think that therapy was going to make the CP and problems with your muscles go away completely, or did you understand that therapy only helps to make it better?
No. I always understood that therapy would make things better, because my neurologist told me that, face to face, early on.
CPNUES: Did you ever have a bad experience with someone at school or in the community not being nice to you because you were different? How did you handle it?
I explain what my problem is, so they have (a better) understanding of the situation and they either hate me or like me after that.
CPNUES: If you could give a child with CP any advice, what would it be?
Be strong, and go for what you want -- no matter what.
CPNUES: If you could give the parent of a child with CP any advice, what would it be?
Let your child do what he/she wants…don't hold them back from anything that seems to interest them.
CPNUES: What is your happiest day?
Being able to use my arm for the first time after surgery. Even though I had scars, it was a normal arm.