Doctor visit

This past Thursday was my visit at Dr Jog's office. I mentioned that the Sinemet isn't lasting long enough or kicking in fast enough. We're adding Pramipexole (aka Mirapex). I haven't started it yet. Probably the most concerning side effect is drowsiness - especially while driving.

My Sinemet schedule is; 1.5 at 4:30, 6:35, 9:10, 11:45, 14:20, and 16:55.

I hope to participate in a study that will try to more objectively evaluate symptom levels using motion capture. There is an article on the hospital website.

We went on a Caribbean cruise, which was very nice, and I did 'try' to do some exercise. When we got back winter and that constant feeling of having a cold coming on was my excuse. I need to get back on the exercise bike. If I can force myself to get up in the morning, maybe I can delay adding the Mirapex to the medication mix.

Sinemet doseage

From a post I made in the forum on plm (patientslikeme.com);

05/30

I'm taking 8 25/100 per day now, on an uneven schedule. 5am (2), get up at 5:30,  8-8:30 (1) 11 (2) 2-2:30 (1) 5 (2). Then I go all night without. I go to bed about 9. I actually notice the 1 pill at 8 and 2 brings me back to 'on' for a while and I can then wait for the 11 and 5 dose. This is all to try to schedule around eating and driving.

Update 06/12 - I had been too lazy to cut pills in half, but in the interest of trying to smooth out highs and lows I decided to adjust again. So now it's two pills at 5, then 1-1/2 at 8, 11, 2, and 5. Same amount of pills per day. Interesting side effect though - dyskenesia has started in my foot. I sure was hoping I could put that one off for a lot longer. I think I'm going to try actually reducing the amount of Sinemet I take by a little bit, and see how that works out.

Swinging

It feels great to be 'on'. Judi and I went for a walk after supper tonight, and my arm was swinging - just like a regular person.

The times when my right side feels normal are so appreciated. I remember a PWP in Windsor saying to me; "thank God for Sinemet". I guess now I know what he meant.

I don't know when I last updated about my dosage. I had made my way to two pills, three times per day. Then I found that I was going 'off', and thought I'd just shorten the time between doses. I soon found that I was changing my schedule such that it didn't match up to lunch, and especially with my drive home. So - I tried a different approach; I take two pills at 5am, eat breakfast at 6, take one pill at about 9am, then two pills at 11am, eat lunch at noon, take one pill at about 3pm, then finally two pills at 5pm, and get ready to go home about 5:30.
I wonder if anyone else takes uneven doses like this. I'm going to ask on plm.

More than one year later

It's good to be back here and see how long it's been since I made an update. I'm typing this post with both hands (which is amazing) and it's 8:30pm Sunday evening. Last pills were at 4pm.
I'm taking two pills three times per day now (5am, 10:30am, and 4pm).
Although I feel like I'm progressing too fast, the history here shows me that's not true. It must just be that I'm not happy to be where I am, regardless of how long it took to get here.
I do have definite on and off feelings, and can notice much more how the pills help.

Dose reduction - perhaps not

On my last visit with my MDS I mentioned that I was only taking three pills per day. He suggested that I might want to try 1.5 pills 3x per day. I haven't tried it yet.

A few weeks ago I was in a large crowd in the evening, and I felt like I could really have used that 4th pill. That was a new feeling, as I haven't had any kind of off/on feeling until then (or since).

Dose reduction

My MDS started me on 4 25-100 Sinemet per day. They can cause nausea, so my day is filled with soda cracker snacks. I decided to stop taking the evening pill, and I think I feel about the same (I changed the dose over a week ago).
One day, I may cut it down to two pills per day.