Reply To: Frustration

June 27, 2012 at 4:35 pm

This is, indeed, a frustrating situation to be in. Even in a metropolitan area there are medical service providers of various kinds who do not understand CIDP, and who are not sensitive to the need for careful handling to minimize pain. I don’t know what the answer is, unfortunately. If they are abusing her by causing unnecessary pain in the way they handle her, you need to lean on them any way you can, in my opinion.

Range of motion therapy is extremely important for those with limited mobility. If her legs and feet are atrophied, it is especially important to prevent permanent foot drop. There are special boots made to help with this, but they require attention because they are not worn continuously.