My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Thursday, August 11, 2011

Overdue trip to Cincinatti

I went to Cincinatti to see my EDS doctor earlier this week. I hadn't seen him on a regular basis because I keept having surgery, so there was a lot to catch him up on. He had a lot of great advice treatment wise.

He's going to look into a gait analysis for me. The hospital where he is located recently opened a gait training lab which he has been interested in doing research with EDS patients to see if that would be beneficial. This would be different than a traditional gait analysis (study of a patient's walking and movement patterns, usually with recording the movement patterns). From what I understand, there would be a gait analysis which would be evaluated, then followed by a correction plan. The goal would be to limit compensation and create a "normal" gait. He told me that he has been interested in this, particularly with my gait (because of my pre-hip surgery gait; see videos). He is going to see if he can work with the gait lab and develop a research project using my gait.

We're going to look into possibly seeing a cardiologist for my high blood pressure. He wasn't happy with where my readings were now after being on the diuretic from my nephrologist. We're most likely going to set up a phone call between him and my nephrologist so that they can discuss the issue and develop a better plan.

He gave me a PenAgain (http://www.penagain.com/) which is a specially designed pen to limit the amount of stress to your hands while writing. I don't have a huge issue with this on a daily basis, but my hand do get fairly fatigued after prolonged writing. The little I've used it already, it seems to be comfortable and even take some pressure off of my shoulder while writing (I hold my pencil in a cave-man-like fashion, which is probably not the best thing for me).

We'll see if I can get used to the PenAgain, and give my hand a little break.

3 comments:

  1. Hey Madeline, So life goes on. Thanks for the update. Take care. Aunt Barb and Uncle Gary

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  2. Aim interested in hearing more about the pen..let me know if it works for you. My thumbs have been dislocating and like you my hands get very tired after a lot of writing.

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