Miss Vicki,

As I read your post, I am angry! There is absolutely no excuse for the treatment you are receiving. Six months is way too patient for you to just sit around and (quietly) ask for help. You should have your medical team set up some home health care agency to come and do everything you are asking for. You deserve to have physical therapy to begin the process of excercising your mouth/jaw muscles. They can provide some type of assistant to help you bathe, help you clean your mouth to prevent further complications from infections/bacteria, etc. You should not have all the responsibility to monitor your progress and develop your own plan for rehabilitation. I know the squeaky wheel gets the grease but do you think your lack of squeakiness is keeping you from getting the grease? You have a sense of where you should be by now and if you think you should be working with a physical therapist to re-learn the process of swallowing, opening your mouth, etc., demand it.

I can not imagine how you have made it the last six months. I know you have been through so much since 1989 and the doctors want you to heal but your number 1 and number 2 in the your first post seems very reasonable after waiting patiently for 6 months. You were told 3 months to PT and you should hold them to this. I am incensed at the PEG tube story as well. Do not settle for this type of treatment from anyone in the medical community.

That is my two cents worth. I know how tough you are and all you have been through but I do not want to sit here and hear you suffering so. I would be glad to make some phone calls for you if you need it. Just let me know.

Ed