TREATING PARKINSON'S WITH CARBODOPA/LEVODOPA,

                  THE MOST IMPORTANT VARIABLE  

The neurologists do not know the importance of timing between doses in the use of Sinemet to treat Parkinson's Disease (PD).  It turns out to be the easiest way to fine tune the treatment to the needs of the individual.   I have struggled with adjusting my dose for about two years.  I am now getting a handle on it.  

The Motor Disorder Specialist, I was seeing, two years ago, started me with the prescription of one-half  tablet of carbodopa/levodopa, 25/100, taken three times daily.  His instructions were “take at least one hour before a meal and approximately the same time every day.”

I did fine on this protocol , so he increased it to one tablet, then one and one-half tablets.  No problems.  When I went to two tablets, dyskinesia set in hard.  I tried to back off on my on.   Big mistake.  Dyskinesia got worse instead of better.  After an emergency room visit, one week in the hospital,  and a couple of weeks in rehab, I returned to the doctor.  I later determined that dyskinesia had messed with my diaphragm simulating a heart attack.   The doctor convinced me to go back to two tablets and maintain that for a while. I did and the dyskinesia became tolerable.  Still a problem but tolerable.  The goal of this doctor was to get me to two tablets four times daily.  

At this time I made a big move, Texas to California.  Then insurance changes, with associated doctor changes. By December, 2015, I was struggling with two tablets four times a day.  At this time I decided to look into the medications and the disease.  I started by searching the internet.  

I noticed the medication had definite parameters that could lead to predicting the amount of medication in the bloodstream during the treatment period.  With the tool of “Paint”, I manually traced out the expected bloodstream levodopa level.  I called this a “DOSE PROFILE”. Lots of trial and error.  It’s amazing how your skills deteriorate after 20+ years of retirement.

By graphing out my medication protocol, and relating the plot to my symptoms, I soon saw the importance of precisely timing the doses. I discovered that it is impossible for me to time my doses without a timer.

I found a dose timer at Walgreens.  It operates in 1 hr. increments.  When I started using it, I found my symptoms much more predictable. 

After doing a number of graphs with “Paint” I developed an algorithm that I put on a spreadsheet and let the computer do the grunt work.  It used straight line approximations instead of logarithmic lines. I then went one step further and developed a mathematical model for my spreadsheet which I believe is adequate for my purpose.

My last visit to the neurologist he added a 4mg Neu Pro patch to my protocol.  I tried to interest my neurologist in my ideas.  He walked out of the room while I was still talking.  I am looking for another doctor.

A few days after adding the patch I started having more Dyskinesia, insomnia, nausea, and heart palpitations.  I changed the timing of my doses and dropped one tablet.  Boy what a difference.  After a few days, I feel better than I have in years. 

Currently I am using a countdown timer on my android phone on a modified protocol.  The attached figure is the output from my plotter on a protocol that is working well for me.