For what it's worth I am not a doctor, a researcher or particularly driven to work hard with respect to my disease. Disease is highly individual. Disease is highly unpredictable, at least Parkinson's is. That's my opinion as is what you are about to read. Please don't do anything I've done or am doing without a great deal of research and advice from your neurologist or other health professionals.



25 years ago I began having symptoms of what turned out to be Parkinson's. To this day I still drive, swim, walk, sleep and do most activities without assistance, although it is getting harder. In retrospect I can see the subtle changes like interest on a bank account that, watched daily seems to move at a snail's pace yet when taken over a given number of years slowly and steadily progresses. Like the slimy snail my disease moves ever forward towards its eventual conclusion. Enough poetry. Let's get started.

Approximately four years ago after taking my levodopa medication for over 10 years I decided to stop and see what would happen. The story is written on this forum, along with all my background information. That experiment lasted almost a year as I recall. For the next several years I and my disease carried on to the point that in mid-2015 and facing severe difficulties with controlling muscles I was sincerely considering DBS. Then came the new drug RYTARY and, after investigation I decided to give it a try. I decided this even though I am convinced that the pharmaceutical companies are a plotting, conniving group of greedy people intent on growing the bottom line without regard to the lives of the people they're affecting. In 2001 when I was diagnosed with Parkinson's the neurologist told me I should take the levodopa medicine even though it had a limited effective life because the pharmaceutical companies would certainly come out with a new pill within five years. That was 15 years ago. And here we are with no magical pill. But we have Rytary.

Benefits of Rytary

1) Smoothness. By this I mean a much more gradual on and notice if you will when the pill is not going to work much longer. That gives me time to get to where I need to be if at all possible. If not it will be more difficult to drive, converse, walk etc. I will still be able to do it but with some difficulty depending on how my emotions have been, what I have eaten and several other factors. Still, all in all it is a smoother transition.
2) Longer lasting medicine. The medicine has less of an upward and downward spike, making it possible to take a higher dosage that lasts a longer time than carbidopa /levodopa. The benefit here is the ability to take the pill at 6 AM, 9 AM, 12, 3 PM and 6 PM and to have the last pill at 9 PM. By carrying the pills on me excepting the last pill of the day it is easier for me to backtrack to discover when my last dosage was. This is a great simplifier for me.

Negatives of Rytary
1) Smoothness. Sometimes the pill is so smooth it never engages or comes on. Because it can come on at any minute and frequently does after about 40 minutes, I sometimes wait all day and it never comes on fully. Because I don't want to engage the fully on and overmedicate, I end up waiting and maybe taking the dosage a half hour earlier. And now, sometimes I substitute a 36.25\145 in the place of my 23.75\95 with varying degrees of success.
2) Food is a disaster. Nothing seems to be consistent. Nothing happens the same. I pretty much have to skip eating anything solid until after my important events are completed.
3) Emotions are a direct influence on this medication. But there doesn't seem to be any rhyme or reason. I have yet to figure out any remedy for my consistent ons and offs.
4) Dosage has been impossible for me due to the above.
5) Right arm tremor is present even when transitioning into and out of an on time. This is interesting because it is present maybe six times more often than with the carbidopa\levodopa. While not a great negative it is somewhat aggravating.
6) Apathy. All initiative is gone unless I am extremely interested in something and focused. Example: I have six months worth of mail sitting in my office in various stages of sorting and yet I can't seem to invest the two hours necessary to accomplish this task. I am capable-- I just don't care to do it.
7) Cardiac issues, constipation, also.

All for now.