Hello All,

It has been awhile since I have written so I figured I would provide an update. Yesterday afternoon we took a trip down to the University of Pennsylvania's Parkinson's Disease and Movement Disorders Specialist facility. It had come recommended to me by a family friend. We were to the point where we were not thoroughly satisfied with our local neuro's effort, in conjunction with the fact that we had heard many positive things about the University of Pennsylvania.

We were seen by "doctor #1" who started off by asking my mother what brought us down there yesterday afternoon. My mother described why we decided to come down, and the doctor began looking at my mother's current prescriptions, dosages, frequencies, etc. The doctor was asking a ton of questions and typing on her computer at the same time. I noticed that a lot of the questions seemed to be tailored towards determining if the medication was the correct medication, and what times of day it was or was not working. After asking a ton of questions, the doctor performed an extremely thorough physical exam on my mother, asking her to do things even I would struggle doing at 27 years old. After performing the physical, she grilled my mother with some additional questions. After that, she said she would return shortly after reviewing my mother's MRI of her head and neck from months ago. She returned, and she returned with a second doctor. The second doctor ("doctor #2") asked my mother more questions, and the majority of them seemed to be repetitive and redundant based on the first doctor's set of questions, but I had a feeling this was by design. The second doctor then performed a second physical on my mother, and continued to ask questions.

The results are as follows:

1. The doctors are not convinced my mother has PD
2. The doctors said they do not like to prescribe the CR form of ldopa because of its inconsistency and variability of absorption into the body
3. The doctors removed my mother's present dosage of CR and replaced it will a higher dosage of CR to be taken only in the evening.
4. The doctors are continuing my mother on the IR form of ldopa, same strength, but are changing the times of day and amount she is taking

They printed a medicine schedule for my mother to follow for the next 4 weeks. The frequency and dosage of the medication actually changes from week 1 to 2 to 3 to 4. After 4 weeks my mother is to return and report the results. The purpose of the exercise is to see if the CR is not doing her any good and to see if the would benefit more from taking more IR. The second purpose of the exercise is to see if she does not respond to the IR, then she may have atypical Parkinson's and hence why the ldopa is not working in her treatment.

The doctors also recommended that my mother participate in some type of speech therapy. It turns out that the first floor of this building has a physical and speech therapy department. On the 14th of December my mother has a 9:00 AM appointment with the doctor, then at 10:30, 11:30, and 1:30, she has physical and speech therapy on the first floor of the building, just to try it out and see how it goes.

I have been reading about the differences between atypical PS versus PD and what I have been reading does not seem pleasant. It seems as if atypical PS is harder to diagnose than PD because of the patients' lack of response to ldopa therapy.

That is where we stand now. I am hoping that the manipulations in medication end up working for the better, but I was curious to know everyone's thoughts and if you have any experience with atypical PS?

Best Regards.

Matthew R. Smith