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Continuation of Annetta Freeman Interview (While I was typing a thunderstorm rolled in, so I decided to send what I had typed rather than risk losing it if the power went out. By the way, I'm leaving out extraneous info and relaying the core of the interview.) One of the worst side effects (from Eldepryl) was severe stomach pains that would double me over. After reading, I realized the source of the pains and stopped taking Eldepryl. The pains stopped immediately and never returned. DURING THIS TIME, THE CEDARS SINAI NEUROLOGIST WAS YOU PRIMARY CARE PHYSICIAN? Yes, but he passed away shortly thereafter, his partner became my PCP. DID YOUR NEW DOCTOR SEE YOU BEFORE YOU STARTED TAKING THE LIQUID DEPRENYL? Yes. He was my doctor both before and after I started the liquid deprenly citrate. He's the one that put me on the Eldepryl and some of the other things that I was taking and he was my doctor after I started the liquid deprenyl citrate. SO HE WAS THE ONE WHO SAW YOU TRANSFORMATION? That's correct. WHAT'S HIS CURRENT OPINION ABOUT YOUR APPROACH? He thinks I'm an enigman - and that there's no scientific basis for what I'm doing. All the doctors told me not to run from doctor to doctor, because "if there's any medication or anything new, we will all have it." I never bought into that argument. SO DID YOU SEE OTHER DOCTORS? Oh, yes. I saw a neuro at USC for complete evaluation and a top neuro at Bqarrows Institute to study what I'm doing. WAS HE RECEPTIVE AT ALL? Yes and no. He was receptive to the fact I was better but not to doing anything about it. It was too beg a project. SO HOW MANY VISITS DID YOU HAVE WITH THE NEUROS AT CEDARS SINAI BEFORE YOU DECIDED TO TAKE MATTERS INTO YOUR OWN HANDS? Maybe 15. OVER WHAT PERIOD OF TIME? At first, every month; then every 3 months. Then I decided they were doing nothing for me. In 1989 I decided once a year was sufficient. In the Fall of 1992 I really started going downhill. Even at my best I wasn't functioning well. My neuros told me this was as far as science could take me, unless I wanted to consider something like a fetal cell transplant. They can give you Sinemet, but when you start downhill to that degree, that's it. In Oct. 1992 I started the liquid deprenyl citrate and bagan my recovery. I continued to be evaluated through June of 1993. By that time I was doing remarkably well. WHICH THERAPIES DID YOU TRY ON YOUR OWN AND WHICH WERE EFFECTIVE? First was the liquid deprenyl citrate. It worked like a miracle. Within 3 weeks the stiffness in my right side had really gone, at least the debilitating part. I could really move quite well. I could get out of a chair without help. I could turn over in bed again. I had some pretty dramatic results, but I still had lots of Parkinson's problems left. The next thing I tried was a raw tree sap called dragon's blood from Ecuador. It had tremendous dopamine-enhancing and antioxidant qualities. I was on it for 6 months and progressed quickly. It was tested at Barrows and they said it had tremendous dopamine-producing influence in the brain. But there was one huge problem: there aren't enough trees to produce it and you can't get it out of Ecuador. So I had to give it up. HAS THAT SITUATION CHANGED? No. TOO BAD. PLEASE CONTINUE WITH THE THERAPIES YOU'VE TRIED. Next was pycnogenol. I found through research that they had done the trials using 8 tablets, not the 1 or 2 listed on the label. So I started taking 8 tablets a day or 400 mg total. It stopped the side effects of Sinemet. WHICH SIDE EFFECTS? Some I remember most are: drooling, that stopped; irregular breathing, that stopped; and LEG CRAMPS AT NIGHT WHERE MY FOOT WOULD BE PULLED IN, THAT STOPPED. (Note from Pat: Caps are mine because of the interest in that subject on the listserv). DID THESE SYMPTOMS DISAPPEAR IN HOURS, DAYS, OR WEEKS? The fortunat thing about PD is that symptoms are intermittent. Other than stiffness, tremors, and swallowing difficulties, extra symptoms seem to hit hard and go away. SO BASICALLY YOU'RE SAYING IT TAKES SEVERAL DAYS TO RECOGNIZE A SIGNIFICANT TREND? Correct. WHAT SPECIFIC CHANGES DID YOU NOTICE WHEN YOU SWITCHED FROM ELDEPRYL TO LIQUID DEPRENYL? I'd been given my life back. My tiredness began to go away. I was able to navigate and my balance improved dramatically. Within 6 weeks I had my balance back. I no longer had problems walking down steps. It was easy again. These improvements have been long lasting. My gynecologist almost fell on the floor when he saw me nine months later. I walked like a normal person and I had lost the facial mask. My eyes were wide open; they had been half shut before I started the liquid deprenyl. DID YOU RESULTS FROM THE LIQUID REMIND YOU OF THE INITIAL RESULTS OF ELDEPRYL? No. The eldepryl wore off. EARLIER YOU WERE FAIRLY IMPRESSED WITH ELDEPRYL INITIALLY. In the beginning, it gave me more energy, but as time went on I ended up back in bed. I spent most of '91 and'92 in bed. I went out rarely, maybe once a month. I was almost totally out of it mentally. It was like I had a cloud around my head. WHEN DID YOU DECIDE TO WITHDRAW FROM SINEMENT, AND WHY? Literature on liquid deprenyl citrate says to lower dosage of Sinemet. The more I withdrew from Sinemet, the better I got. THIS LED ME TO BELIEVE THAT THE DRUG HAD BEEN POISONING ME. (Caps are mine again. Alan Bonander has been telling us this all along, though I can't get a doctor to admit it.) I thought that if this helped that much maybe I should lower it a little more, but I lowered it too much I got into trouble. Then I noticed that the better I got, the more I needed to lower the Sinemet. I discovered you cannot tell the difference between too much and too little Sinemet. The symptomx afe exactly the same. So when I started getting worse, I reduced the Sinemet. It worked. DID YOU EVER MAKE A MISTAKE AND LOWER IT WHEN YOU SHOULD HAVE RAISED IT OR VICE-VERSA? Many times. It was hit or miss. I had nobody to guide me. HOW LONG DID IT TAKE? 14 months to withdraw from Sinemet. HOW DID YOU DISCOVER ANTIOXIDANTS? I became interested because of the dragon's blood. I saw an article in USA Today about a gene that Dr. Tipi Siddique from Northwestern U. had discovered was faulty in ALS and Parkinson patients. The gene produces antioxidants. WHICH DID YOU TRY AND WHICH ONES WERE MOST HELPFUL? I don't think I can single out one product. The Pycnogel has been a godsend and the Cell Guard is a mainstay of the program. I've had various doctors suggest that I try to eliminate one or more antioxidants and see the result. I did not do well. I think the benefits are from the combination. Most important are Vitamin C, E, Cell Guard, Pycnogel, glutathione, and Sun Chlorella. THAT'S THER GREEN ALGAE. Yes, it must have something PD patients are missing. I'm not the only one taking it. For a few months I stopped the Sun Chlorella. I started to get tre I have to log out