I'm sorry for the distress you and your friend are experiencing with the health struggles both of you have. I read and enjoyed your blogs.

I have been diagnosed since April 2001, and I continue to do extremely well for a 71-year old. My neurologist and I decided to stick primarily with sinemet from day one, with amantadine added a little later. He and I are both pretty skeptical about the dopamine agonists, and have settled on a judicious combination of sinemet CR and a little regular sinemet spread out in only two dosings;

25/100 regular sinemet X1 + 50/200 sinemet CR upon rising at 7 AM.

After 30 min., and a low protein breakfast (oatmeal), I take a big handfull of -
100mg amantadine X1, low-dose aspirin X2, Herb-lax tabs X4 (you can guess the function), slow-release Welbutrin and Cymbalta, and a super-duper vitamin-mineral-probiotic combination, Vitalizer.

I also take 1 tsp of VIVIX, a mixture of polyphenols which includes 100mg of resveratrol. Herb-lax, Vitalizer and VIVIX are Shaklee products.

In addition, I take a 400mg capsule of coenzyme Q10 with meals (3X for a daily total of 1200mg).

At around 3 PM, I take 50/200 sinemet CR X1 and 25/100 sinemet CR X1.

This regimen keeps me out of shuffle-mode until about 8 or 9 PM. With another 25/100 sinemet CR at around 8 PM I can be shuffle-free 'til midnight.

My Parkinson's symptoms have always been bradykinesia, rigidity and postural instability, all of which are well controlled so far. Tremor has never been one of my symptoms.

A drug I have been taking for about 5 years, and to which I attribute much of my slow symptom progression is dextromethorphan, an over-the-counter preparation intended for pediatric cough suppression. This drug is one of a class called morphinans, which includes the prescription drug naltrexone. This is an old drug, approved by the FDA in the 1980s for treating individuals who are addicted to opiates, particularly heroin. Naltrexone, taken at very low doses, has been found to be effective in slowing or arresting progression of several chronic diseases, especially multiple sclerosis. Because of its non-patentability, no pharmaceutical companies are interested in persuing clinical testing in MS or other diseases for which it has been found beneficial. Not surprisingly, many physicians are reluctant to prescribe naltrexone for such off-label uses. My own neurologist has been supportive in my use of dextromethorphan at low doses.

If you are interested in learning more about dextromethorphan, do a search for my previous posts on this forum. Extensive information on the uses of low-dose-naltrexone is available on posts on this forum by Ashleyk and on the web site lowdosenaltrexone, or LDN. I think there is some information on the LDN website on efficacy of the drug in treating lupus also.

I hope that some of the above may be helpful to you, and I would be happy to clarify anything that is unclear or confusing.

Robert