Hi, Jim

Rick and I are friends, and I respect his views and strategies, but we are just about opposite when it comes to our views on traditional medical care.

I tend to trust medicine while keeping control over my own care and watching for their mistakes, so I can work things out when I consult my docs.

Doctors are a little jumpy about drug dependence or abuse. I have known one PWP who abused Sinemet, and I can see why they're careful.

Even an MDS may have only 15 minutes allowed by the hospital or clilnic to see you. The more concise and scientifically you use the time, the better chance the doc has to make the visit fruitful. (This is for general knowledge for anyone reading, not just you, Jim.)

You are the person who is ultimately responsible for your care, so if I may, I'll describe what I have had to learn that you might find useful. I've had to:

• Find a schedule and stick to it.
• Get tough about the schedule. I have nine alarms set on my iPhone for doses of different meds throughout the day, and keep the meds with the phone.
• Write down when and what I take for a week whenever I have a new med or a change in dosage or--most challenging--any of my docs are having a hard time picturing what I'm going through. Adding a note about how I feel and what my mood is at those times gives me a nice little chart that helps docs focus.
• Count out the pills ahead of time. I got one of those crafts trays with 14 compartments, but I used to use jar lids that I saved, and I count out the meds for each day and put them in small plastic boxes that I bought for the purpose. I only have to do it once every two weeks, but if I forget what I've taken (not unusual after about 10,000 pills), all I have to do is glance in today's meds box and see what's left.
• Wait an hour for Sinemet to work. Sometimes an extra half glass of water after 15 minutes will speed up the process. Sometimes an empty stomach is too empty, so I'll take a bit of a cracker to get the digestion going and send the meds along to the gut, where they are absorbed.
• Stay well hydrated. Seriously, 6-8 glasses of water a day works for me.
• Move. A little gentle walking around or a few seated biceps curls will do wonders for my absorption.
• Get warm. A warm bath or a warm cup of tea will often kick in that morning dose for me.

I'm wondering, if you've had a DBS, why are your motor fluctuations so severe? Has anyone x-rayed or MRI'd to see if your leads are in the right place? I ask this because some of my friends have discovered that problem recently. And I don't know much about DBS.
As Rick said, everybody's different--it's a designer disease
...with off-the-rack treatments (and I said that).
Best of luck. Keep us informed, okay?

Jaye