Hello All,

We had our third neuro appointment this morning so I figured I would write with an update while everything is still fresh in my head.

After today's appointment, my mother will be taking the following

Morning:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR
(1) Requip XP 2 milligram

Afternoon:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR

Evening:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR
(1) Requip XP 2 milligram

As you may notice, the only thing that has changed has been the addition of the 2 mg of Requip XL, administered twice daily.

We had the folllowing points of discussion with the neuro.

First, I expressed my concern that my mother is not the same now that she has been on the IR and the CR, and that I felt there was much more benfit when she was taking IR only. The doctor disagreed with me and feels that she sees drastic improvement in my mother compared to both the first and second times that she has seen my mother. I asked why she seemd to show great benefit from the IR, but not as much benefit (in my opinion) from being on the IR and CR at the same time. The doctor said this was because prior to seeing a neuro, my mother had a dopamine starved brain, and the IR was like a happy pill. After that initial "high" went away, it appeared to us as if she was not doing as well, when in reality she is. After the doctor explained this, I saw her point.

We continued to discuss that my mother's mobility has become more "fluid" than it was prior to starting meds. She does move around a bit quicker, takes on more physical activities such as minor cooking, writing checks to pay bills, etc. The majority of the aforementioned items my mother could not do prior to taking meds.

My mother's physical therapists have commented that she is standing up more straight and continues to show improvement when attending physical therapy.

I asked the doctor to answer why she has my mother on IR and CR at the same time. Her answer was that she is trying to avoid the "nulls" typically realized when taking IR or CR, but not both at the same time. She also mentioned that she does not want too much dopa to be in my mother's system, which I did not understand because techincally my mother takes 600 (mg?) of levodopa a day based on her current prescriptions. The doctor also explained her concern that physicians try to strike a balance in a patient between relief from symptoms and acceptance of certain side effects that can be caused from the dopa.

I asked about the differences between Sinemet and generics. The doctor explained everything that I have learned from this forum thus far, and wants us to pay attention to the fine print on the bottles of the generics to make sure they remain the same throughout all the refills.

I asked about my mother's toe curling and leg swelling. We were told that the toe curling is a side effect of the medication, but I mentioned that her toes curled even before taking medication. The doctor said knowing that the toes curled prior to medication was a key point because it may allow my mother, if required, but not now, to have more dopa in her system because the toe curling may not be being caused my the dopa, but the disease in general. I asked about botox shots being an option for the toe curling, and the doctor said yes they are an option, but that she does not administer them.

I asked if there were any other vitamins and minerals that my mother could be taking that may help with the PD. The doctor said that the general vitamins and minerals my mother currently takes are good enough for now.

The doctor was happy to hear that my mother is no longer taking medication for her incontienence nor her pain medication, although my mother still struggles with incontinence.

We were given, on the spot, 42 pills of the 2-mg Requip XL. The doctor described the Requip as a "helper pill" or "cousin pill" of the carbidopa / levodopa. She said that the Requip XL is supposed to extend the half life or the duration that the dopa does its job.

The doctor said we must pay attention to any odd behaviour that may surface after my mother starts taking the Requip XL, because it is a known side effect.

If the Requip XL seems to help, we need to call the doctor because the 42 pill supply she had laying around the office will only provide for about 20 days of medication. If it continues to work, she said she would write us an Rx for more.

We asked about purchasing a stair-climbing system for my mother, even though my mother refuses to use one at this point in time because she wants to get to a point where she can make the steps without any assistance. The doctor mentioned that if we desire, she can write an Rx for such a system?

Our next appointment is scheduled for the 9th of July.

Overall I was pleased with the appointment. She again spent a lot of time with us and answered all of my questions. I challenged her on my mother's progress and she firmly disagreed with me, and gave her medical explanation. The point she brought up, which I agree with, is that my father and brother see my mother everyday. I see my mother every weekend. The doctor only sees her once every month. The doctor said she sees great improvement in my mother compared to the day we set initial foot in her office back in February. As I mentioned earlier, the doctor said that as family members, our expectations were set by the initial symtpom relief of the IR and IR only medication which was a false expectation based on the fact that my mother's brain experienced a high from the IR.

That's about all for now. Any comments or questions are welcomed.

Thanks for your continued support,

Matthew