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Join Date: Apr 2008
Location: Nanaimo, BC Canada
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Interesting reading
I am sorry I could not send link (cost $14.95) so I copied it.
Parkinson's Disease Collection | Parkinson's Center
An Improved Parkinson's Therapy
by Steven Wm. Fowkes
For years, we have been discussing the use of deprenyl in the treatment of Parkinson's disease and the use of antioxidants for the treatment of free-radical pathologies and aging. Now, Annetta Freeman, a 58-year-old housewife from Beverly Hills, California has put the two together with phenomenal results. In 1992, she was almost completely disabled by Parkinson's disease, today she is largely recovered. She says “When I walk into a room today, no one would guess that I had Parkinson's disease.”
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Will you describe the circumstances of your diagnosis of Parkinson's disease?
I was formally diagnosed in late `87, but I knew I had Parkinson's disease some time before that. My husband's aunt had severe Parkinson's and I had been taking care of her since `79, so I recognized the symptoms in myself.
What were the issues with your doctors not recognizing it? Did they think your symptoms were psychologically based and refer you to a psychiatrist?
Yes, that's exactly what they did. I was having subtle symptoms at the time and I didn't quite put it together that it was Parkinson's. One of the symptoms I was experiencing was weakness in my voice. All of a sudden my voice would become very scratchy and hoarse. As I talked, I would get breathless and my voice would get weaker and weaker. Then in 1979, my husband had throat cancer. During this period, I lost my voice. My doctor said it was a psychosomatic reaction. I knew that it wasn't because it had happened before. I think the stress made the Parkinson's symptoms a little stronger. The voice problem persisted until 1992 when I started on the liquid deprenyl citrate.
How bad did your symptoms get?
By the end of October 1992, I was having trouble getting out of a chair. I had to move forward in the chair and pull myself up by holding onto something else. I had no energy. My medicine wasn't working well; when it finally took hold, I got a good two hours a day in which I could function at a high level. It just didn't last very long.
When you were finally diagnosed with Parkinson's disease, was that by just one doctor or did you see other doctors about your condition?
First I saw only one doctor. The reason is that I knew without a doubt that I had Parkinson's and was very frightened. I didn't want to tell anybody, including my husband. However, one evening we were at dinner with a very close friend who happened to be a neurosurgeon and my entire right side went into spasms. I shook very hard, trembling for quite some time. It had never happened in public before, and this particular night it happened in front of this doctor. He was horrified. He immediately said that he would pick me up at 7 o'clock the next morning to go see a neurologist at UCLA.
The neurologist diagnosed Parkinson's disease. But he didn't want to medicate me. He felt that if I had been going along that well I shouldn't really be medicated, and my response was "of course I want to have medication." I wanted to be as goodright now as I can and didn't want this to happen again. It's very embarrassing. Since he wasn't interested in giving me medication, I found another doctor at Cedars Sinai Medical Center who became my primary care physician. I strong armed him into giving me medication.
Starting with Sinemet?
Yes. I also tried amantadine, Parlodel, and a number of other drugs trying to get all the symptoms under control. We finally hit on Sinemet and Inderal as the primary therapy and it wasn't until some time later that Eldepryl became available. I think I was one of the first people to get it after it was approved by the FDA - somewhere around 1990.
Did you get any added benefit from Eldepryl that you didn't get from Sinemet and Inderal?
Yes, I did. The first 5 or 6 months were fantastic, but as time went on I got worse, and worse. The medication wasn't working and I started to get a lot of bad side effects. One of the worst was severe stomach pains that would double me over. I thought I had a major ulcer. At the time I didn't recognize that it was coming from the Eldepryl. Later I started reading about all the symptoms that you can experience from taking Eldepryl and realized the source of the pains. After stopping Eldepryl, the pains stopped immediately and have never returned.
During this time, the Cedars Sinai neurologist was your primary care physician?
Yes, but he passed away shortly thereafter, and his partner became my primary care physician.
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 deprenyl 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 your transformation?
That's correct.
What's his current opinion about your approach?
He thinks I'm an enigma; 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 neurologist at USC for complete evaluation. And I also saw a top neurologist at Barrows Institute, which was sort of an evaluation, but I really went there trying to get him to study what I'm doing.
Was he receptive at all?
Yes and no. He was receptive to the fact that I had gotten better but he was not receptive to doing anything about it. It was too big a project for him to consider.
So, how many visits did you have with the neurologists at Cedars Sinai Medical Center before you decided you needed to take matters into your own hands?
Maybe 15.
15! Over what period of time?
At first, I was going every month, then every 3 months, then I decided they were doing nothing for me. It was costing me money to go in, have them look at me, and send me back out the door with nothing changed. In 1989, I decided once a year was sufficient for that kind of care.
My visit in the Fall of 1992 was when I was really starting to go downhill. Even during my best two hours of the day I wasn't functioning that well. My neurologist told me they had done all they could, that 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 and keep giving you Sinemet, but when you start downhill to that degree, that's it. They really don't know what else to do for you, except to experiment with your medications.
In October 1992, I started the liquid deprenyl citrate and began my recovery. I continued to be evaluated by the neurologist through June of 1993. By that time I was doing remarkably well.
Will you describe which therapies you tried on your own and which were effective?
The first one that I tried was the liquid deprenyl citrate. It worked like a miracle. Within 3 weeks, the stiffness in my right side had really gone. I don't mean that it was normal but the debilitating part of it was gone. 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 that I tried was a raw tree sap called dragon's blood. A friend of mine brought it from Ecuador. It had tremendous dopamine-enhancing and antioxidant qualities. I was on it for about six months and progressed quite quickly. We had it tested locally - I think I even gave a sample to the neurologist at Barrows who tested it - and they said that it had tremendous dopamine-producing influence in the brain. But there was one huge problem: there aren't enough trees to produce the substance, and you can't get it out of Ecuador. It became too difficult to get. So I had to give it up.
Has that situation changed?
No, it has not.
Nobody's bothered to try to figure out what's in it and extract or manufacture it?
No. We've been unable to get sufficient material.
Too bad. Please continue with the therapies you've tried.
The next thing I tried was a product called Pycnogenol. Before I started taking any vitamins or antioxidants, I managed to get all the research studies that were done on Pycnogenol and found out that they had done the trials using 8 tablets, not the 1 or 2 listed on the label. So I started out taking 8 tablets a day, or 400 mg total dosage. Amazingly, it stopped the side effects of Sinemet.
Which side effects?
Oh, boy. There are 79 different side effects from Sinemet.
But which ones were you experiencing?
I think I was experiencing almost all of them. I'd have to go back and look at my records. Our brains are a wonderful thing, Steve. They delete from memory things that are bad, painful, unpleasant, that you don't want to remember.
Some of the things I remember most are: drooling, that stopped; irregular breathing (where I would breathe very deeply and then hold my breath until I was blue in the face (without realizing that's what I was doing), that stopped; and leg cramps at night where my foot would be pulled in, that stopped.
Did these symptoms disappear in hours, days or weeks?
The fortunate thing about Parkinson's is that many of the symptoms are intermittent. Other than the stiffness, tremors and swallowing difficulties, and some of the breathing difficulties, some of these extra symptoms seem to hit and go away and hit and go away. They're not constant. If they were, I don't think you'd be able to survive.
So basically you're saying that it takes several days to recognize a significant trend with all the daily fluctuations?
That's correct.
What specific changes did you notice when you switched from Eldepryl to liquid deprenyl?
I'd been given my life back. My extreme tiredness began to go away. One big thing: I was able to navigate and my balance improved dramatically. Within six weeks I had my balance back completely. I no longer had problems walking down steps. It was easy again. It was simply amazing.
These improvements have been long lasting, too. Nine months later I saw my gynecologist who had not seen me since I had started the liquid deprenyl. He almost fell on the floor. I walked in like a normal person and I had lost the facial mask by then. He kept saying, "Your eyes are wide open." again and again. My eyes were half shut before I started with the liquid deprenyl.
Did your results from the liquid deprenyl remind you of the initial results of Eldepryl?
No. There's really no comparison to make. The Eldepryl did give me energy in the beginning, but it gradually wore off.
Earlier, you sounded like you were fairly impressed with the results from Eldepryl in the initial weeks or months.
In the beginning, Eldepryl gave me more energy. I had more ability to get up and go out, but as time went on I ended up back in bed. I spent most of `91 and `92 in bed. I went out only rarely, maybe once a month. When I went out to dinner, 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 Sinemet? And why?
The liquid deprenyl citrate literature says to lower your usage of Sinemet. The more I withdrew from Sinemet, the better I got. This led me to believe that the drug had been poisoning me. I thought that if this helped that much maybe I should lower it a little more, but I lowered it too much and got into trouble. Then I noticed that the better I got, the more I needed to lower the Sinemet.
One of the amazing things I discovered is you cannot tell the difference between too much Sinemet and too little. The symptoms are exactly the same. So when I started to feel like I were getting worse, I took that as a sign my body wanted me to reduce the Sinemet. Lo and behold, it worked.
Did you ever make a mistake and lower it when you should have raised it or raise it when you should have lowered it?
Many times. I got bad symptoms for days at a time, and sometimes weeks. It was a hit-and-miss strategy. I had nobody to guide me. I didn't know what I was doing.
How long did it take?
It took me 14 months to withdraw from Sinemet.
How did you discover antioxidants?
I became very interested in antioxidants because of the dragon's blood. That had been such a beneficial product for me. I began to wonder whether something missing in my body, whether my body needed antioxidants. Just after I started the Pycnogenol with such fabulous results, I saw an article inUSA Today. Dr. Tipi Siddique from Northwestern University had written an article about a gene that he had discovered that was faulty in ALS and Parkinson patients. It was a gene that produces antioxidants.
Which did you try and which ones do you consider were most helpful?
I don't think that there's one product I can single out. The Pycnogenol has been a godsend and I cannot lower my dose, even today. Also, the Cell Guard must be considered 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've tried that and I did not do well. So I think the benefits I am getting are from the combination of the ones that I'm taking. I think the most important ones are vitamin C, vitamin E, the Cell Guard (which increases the SOD level in the body), the Pycnogenol (which magnifies the C and E), the glutathione (which everybody tells me can't do a thing but it does), and a product that I never thought could help, Sun Chlorella.
That's the green algae.
The green, small-cell algae, yes. It must have something that Parkinson's patients are missing. I'm not the only one taking it either.
For a few months I decided to stop the Sun Chlorella. I was taking so many tablets a day, I wanted to simplify my program. After stopping, I began to get tremors again - on my right side. I became quite concerned that they were getting progressively worse.
What was the timing relative to stopping the Sun Chlorella?
It started about 4 weeks after I stopped the Sun Chlorella. At the time the symptoms started returning, I had forgotten that I had stopped the Sun Chlorella. Then a man over in Marina Del Rey started having the same symptoms I was having. I kept asking him if there anything he had changed. He kept saying no. Then we sat down and went over each of our lists, and realized that Sun Chlorella was the only thing missing from both our lists. I started taking it again and within 24 hours the tremors stopped. After hearing my results, he started the Sun Chlorella and slept through the night without a tremor. It's that quick.
What about other people? Are they getting the same results?
Yes.
Are you seeing differences in how different people respond to the numerous aspects of the therapy?
Some people respond very rapidly, others take longer, but everyone has had their symptoms stabilize. That's an absolute 100%. From there, different people react differently. The length of time they've had Parkinson's disease, the length of time they've been taking Sinemet, their age, and their general health also influences how long it takes them to get better. Every single person has gotten better to some degree. But remember, this is not an instant bullet. It is a long, slow recovery consisting of many small improvements that are easy to miss if you don't keep a journal.
How many of them have switched from Eldepryl to the liquid deprenyl?
They all have.
So the liquid deprenyl is pretty much the first step in the entire process.
The liquid deprenyl citrate is the foundation of this recovery program - an absolutely necessary first step. In fact, I just heard from a man this morning who was really quite out of it when he started the program. His wife told me that she cannot believe how creative he is. She said that seven years ago he could not have done what he's doing now. She was absolutely overwhelmed with joy at his improvement.
How many of these people have withdrawn from Sinemet?
Completely?
Yes.
Not many. Every single person who is trying to withdraw from Sinemet has cut down dramatically. As far as I know, I'm the first person to completely withdraw from Sinemet. And I started withdrawing from Sinemet at least a year before anybody else started trying it.
So that was `92, or `93?
I started in `92. I think the next person started in late `93. Some have succeeded, most are still trying. One of the big issues is how long they've been taking Sinemet. Those taking it for only a short period of time find it easier to withdraw. Those taking it for a long time find it very difficult.
But long-term users are still reducing slowly?
Yes.
What do you consider long-term use?
Anything over 5 to 6 years.
And how long were you on Sinemet?
Since 1989.
Three years, four years?
Four years, yes that's right. And I was taking quite a bit at the time when my symptoms were getting so bad. Basically, the bigger the Sinemet dose you're taking, the longer it's going to take to get off and the worse your withdrawal symptoms are going to be.
How many people are taking Pycnogenol?
There are about 300 people on the program. They are all doing exactly what I'm doing.
What about the Enada [a brand of reduced nicotinamide adenine dinucleotide (NADH)]?
Enada is something new that I have been trying, but I have stopped taking it because I thought it might be causing tremors. I have not gone back to it yet.
So how many months were you taking it?
I took Enada for 2 months and it did one thing for me. It removed the residual stiffness in my fingers on my right hand. Even though I've stopped taking it, the stiffness has not returned.
How many other people have tried Enada?
To my knowledge only 1 other, and he is still on it. He likes it very much. It helps him to get on in the morning.
Have you had much support for your approach from the medical profession?
None. Absolutely none. Even from doctors who see me everyday.
What about from Parkinson patients and their family members? How much support are you getting from them?
The patients all send me incredible letters. They're all overwhelmed that they're getting better.
The liquid deprenyl does one other thing that just bowls me over every time I hear about it; it clears up senility within days. I know an elderly actress who had Parkinson's and was also getting quite senile. Within 3 days of starting liquid deprenyl citrate, her senility totally lifted. She went out and read for a part and got it. She's been on liquid deprenyl for about a year. In that year, she has traveled all over the country and has even been to England. She's making movies again.
When she started to travel, she was worried about refrigerating the liquid deprenyl. I sent her to my neurologist who took her off the liquid deprenyl and put her back on Eldepryl because the tablets were easier for her to carry around. Well, all her problems returned. She was quite upset. When she went back on the liquid deprenyl citrate, her mind cleared up again.
How many other people do you know of who have switched or been switched from the liquid back to Eldepryl?
I don't know how many have actually switched. I've had a lot of calls from doctors who said they have suggested their patients switch back to Eldepryl because there was no difference. But I can assure you that there is a tremendous difference in the way our body uses it.
So the doctors routinely advise their patients to switch, but the patients won’t do it?
Very few have switched.
What about Parkinson-oriented groups? Are there any patient groups or societies?
I have only spoken twice at groups, both times to Children of Parkinsonians. The reason I don't like to do it is I'm overwhelmed with telephone calls for weeks afterwards. It's more than I can handle.
What about media attention on this issue?
None whatsoever.
Are you afraid that doing interviews and publicity will bury you in phone calls again? [more laughter]
No, there is a real possibility that I will be doing something for the media because the word needs to get out. The second problem is the availability of the liquid deprenyl citrate. Because the FDA is blocking its approval and preventing its availability in the US, patients have to get it and bring it in through Mexico. This is a problem. A lot of doctors are very worried about that. Some patients are worried about it too.
Do you advise them to stock up and stick it in their freezer?
Actually I don't advise anyone to do anything. When people ask me, I tell them to send me a self-addressed, stamped envelope and I will send them the list of supplements that I take. That list features a prominent disclaimer that I'm not trying to get them to try my program. I tell them to do it only under their doctor's supervision. I tell them that I'm just a housewife and that this is what I've done to get better. If they want to follow it, it's up to them.
Have you tried any political activism in terms of talking to governmental administrators or politicians?
I would like to read you 2 letters from Senators. I've sent about 15 letters to Senators across the country who are actively working on various health bills. To a man, they forwarded my letters to Diane Feinstein.
Oh no, not Feinstein.
Yes. Every single one. And she in turn went to the FDA legal counsel. [more laughter]
That's ludicrous.
The last response was from Henry Waxman who chastised me for going to other state Senators when the protocol is to go to your California Senator first. But he has taken this under advisement and has written to David Kessler personally.
You might be interested to know that the reply I got from Diane Feinstein included a copy of a letter sent to her from the FDA. The FDA letter to Feinstein doesn't ever mention Discovery [Discovery Experimental Development, Inc., the developers of the high-purity liquid deprenyl citrate], but the FDA went out of their way to talk about a product that is contaminated with 50% methamphetamine. Then the FDA appended copies of letters from Discovery asking for ID numbers so that it appears like Discovery is the one responsible for the contamination. It's really sleazy. I was absolutely outraged when I got it.
I have not answered the letter yet because when I start putting it on paper my blood pressure goes up about 100 points. I'm afraid I'll say something that would be... inappropriate.
What you need to do is write two letters, the first where you say everything that you really think and feel, the second where you remain somewhat detached. The first you crumple up for the wastebasket, the second you send.
I've done this 3 times so far, and I can't get all the animosity out of my voice. [laughter]
Well, back to you for a minute. How effective has this program been on an ongoing, continuous basis? Do you ever have times when your symptoms return to such an extent that you are bothered enough to try to redesign your program?
Oh yes. Small problems continue to crop up here and there. But overall, my condition continually improves. I am better now than I was 6 months ago, and better than 6 months before that, and so on. It's a very, very slow program.
I think that brain cells are being revived. The makers of liquid deprenyl citrate say it's not possible, but it must be. I do believe with all my heart that it is either reviving dormant brain cells or growing new ones. I also think that Parkinson's disease is not strictly a brain problem; I believe that the entire body is affected. And that's one reason why you have to treat the entire body with antioxidants.
You might also be interested in knowing that a UCLA study found that Sinemet actually causes the dopamine-producing brain cells to become toxic and die. They may tell you that Sinemet lasts for about 5 years and then stops working, but that's not what's happening. What's happening is that Sinemet is killing off dopamine-producing cells in the brain.
The researchers that developed the NADH-based Parkinson therapy [Birkmayer,et al.] state quite clearly in the Enada literature that Sinemet does damage brain cells. When I show this to doctors, their only comment is that it helps and that they don't have anything else to give their patients.
Is there something else that you'd like to add about anything that's going on or any messages you want to get to the people who may read this?
The only thing I can say is if you want to try this, you have to stick to it. You can't take it on a hodgepodge basis and expect it to work. It's a really diligent program. It takes a lot of time. There are a lot of tablets you have to take and you have to count them out in the morning and stick to it. So far, everybody whose following the program is getting better. It has stopped the progression of the disease and has even reversed it. I'm following hundreds of people who call me everyday and they are all getting better. If we can just influence the political apparatus to do something about this, and get the FDA to approve the liquid deprenyl so that we can get it without problems, we will all be in great shape. I think doctors will be thrilled to switch their patients to a program that works.
Well, we'll see about doing all that.
That would be sensational because this program does work. There's no question that the program works. I'm living proof and I can certainly give you affidavits from other people who also are living proof. When I walk into a room today, my head is high, my back is straight, my step is firm and brisk, my arms swing, and best of all, I smile.
Annetta, thank you.
Note: Discovery Brand Liquid Deprenyl Citrate has been removed from the market by the FDA.
For Annetta's personal regimen, additional updates, new articles, research and more, please see our Parkinson's Disease Collection, found in the Parkinson's Center at Smart Life News.
Parkinson's Disease Collection | Parkinson's Center
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"Trust your nervous system" - Timothy Leary
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So I'm on the prowl again. Currently working on chiro/massage team ideas. Good luck w/ all the help and keep me posted please. Ibby
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