 |
 |
THANK YOU! That was the most beautiful & encouraging letter I have read in a long time & the perfect answer to the skeptics. I have hesitated in responding to these letters going back & forth since your first letter because I didn't want to add fuel to the fire, but now I have to comment! I agree 100% with what you said about knowing your own body, or in my case my husband's. Briefly I'll tell you "our" story. He was diagnosed with PD in 3/92 at 58. It was a hard diagnoses as the tremors were more symptomatic of Essential Tremors than PD so that's what his doctor treated him for. Nothing worked he became violent, hallucinating all the time, not as bad as your brother thank God but very violent. We had/have still a wonderful doctor who I would call every day or every other day to tell him how bad Rich was reacting, he would squeeze us in the next day to try something else. It was the worst 4 months of my & his life believe me. They tried to tell us he was mentally deranged, that it was all in his head & I went ballistic at that & from that day on I was of the same attitude as you are now, I took control of the situation & carefully over the following 11 years have watched how my husband reacts to the various medicines & will not, I repeat, WILL NOT leave him on anything that seems to be doing more harm than good. He has been on ALL the new drugs which are supposed to help the Sinemet work, ALL of them made his hallucinations & delusions worse. I have recently installed an alarm system so now I know he can't slip out at night, his too are ALWAYS worse at night. He doesn't shake much anymore, not outwardly at least, but often complains that he is shaky so it's throughout the inside of his system for the most part. He too suffers from leg cramps & muscle pain, thanks to one of our list persons I've put him on Magnesium at night & that has helped immensely. He is probably in the later part of stage 3 now, the hallucinations are no longer violent thank God, & I can usually keep them fairly under control as I now KNOW it IS the Sinemet now causing the problems so we are still playing the medicine game to try & find the right dosage. I can predict within the day of when he will react to a given medication, it's always 2 1/2 to 3 days & the minute he starts acting strange I take him off everything. His neurologist did that one time, cold turkey for a week to get everything out of his system & then start out again slowly trying to figure out which was the culprit. I learned then that you don't try 2 new things at one time or even combine 2 old things, one at a time until you're positive that that particular drug doesn't give your PD person side effects. His doctor's don't question me anymore as his neurologist said "you're the one who lives with him day after day" I know him, I know his body & how the PD effects him & so I control what medicines he takes & when. Having said all that to you I now ask for your prayers as we leave tomorrow for a long drive from FL to OK to spend a few days with our son. Our daughter is driving out with us to help me drive as of course Rich doesn't drive anymore. He is in constant pain from 3 compressed vertebra & a right hip that is bone on bone so he can't sit for more than 3 or 4 hours without being in terrible pain so we have a converted van with a high ceiling so he can stand & stretch as needed & he spends most of the trips laying down on the back seat. However he had another reaction to the dose of Sinemet he was on so has been hallucinating for the past 2 days, these episodes I might add always last 3 days, so I have stopped the Sinemet for the past 2 days & will start it again at a lower dose tomorrow, so again I ask please pray he's ok for the trip. Thanks in advance, there's nothing greater we can do for each other than prayer! I have a feeling we will hear from a few doctors on this subject but hey, I do what I know is best in the LONG RUN for my husband, hallucinating is VERY dangerous for a PD person. Merry Christmas & Happy New Year to one & all! Nancy cg for Rich 69 on Jan. 1st/58/57 > Please bear with me. Let me tell you about my background. I believe it will be > helpful in putting my present improvement in context. I have noticed there are > some folks on the list who are suspicious of everyone and everything. It's great > to be skeptical, especially about your health. I find that a healthy skepticism > is an important asset, maybe even a necessity when you suffer from a > degenerative disease like Parkinson's where the good news is sometimes no news > at all. > > In 1986, my favorite brother, a professor of French at Howard University in > Washington, D.C., and one of the most intelligent persons I have ever known, > called me at my law office and told me that there was something wrong with his > hands. He said that he was having difficulty typing on his laptop, writing > with a pen and even tying his shoelaces. He said he was resigning from his job > and returning to the Caribbean. He believed somehow the stressful demands of > his job were part of the problem, and that a less harried environment would > help. He was then 34. Being a French citizen, (read access to socialized > medicine) he first went to France to visit his doctors. They immediately > diagnosed him as having Parkinson's. I am four years older, and that same year > I found out that I was suffering from diabetes mellitus type 2. > > My brother's specialists thought 34 was very young to suffer from Parkinson's, > and they tried to find out if he had been exposed to chemicals or other > pollutants. We could not identify anything specific, except perhaps DDT. My > brother was devastated. He went to specialists in England and they also > confirmed the diagnosis. We thought it odd for him to have a disease we had > never even been acquainted with before, or so we thought. Raised in a strict > religious (Adventist) background, he had always been careful about his diet, > never smoked, nor did he drink coffee, colas or any type of alcoholic beverage. > He was not overweight, nor had he had any serious illness before that. > > He was placed by doctors on a regimen of various Parkinson medications, actually > he was taking a handful of pills three times a day. I do not recall all of > them, but they were standard medications at the time. He trusted his doctors > completely and for a while his symptoms (tremors, clinical depression, dragging > left leg) were not obvious. But his disease progressed rapidly and his > medications had to be adjusted to control the symptoms on an as necessary basis. > > In 1990 he took a group of students to Paris as part of an Alliance Francaise > exchange program. While there he began to hallucinate, and had to be > hospitalized. His meds were changed, but he was still taking a handful three > times a day. Because he had always been a calm and collected individual, most > of his behavior seemed reasonable to the family when he returned home. After > his return, he seemed more picky about things, but not excessively so. He went > back to his job as a french teacher at the high school and seemed to be okay > during the day. After a few weeks we observed that at night he would become > apprehensive. He didn't want to sleep in his room. He hallucinated that > someone was pouring acid from the ceiling onto his body. He would call 911 to > report that he was being attacked. During the day he would go to work and be > okay. At night it was a different story. He would hide in the closets from > imaginary attackers. My mother with whom he lived was unable to reason with > him. > > He had to be admitted to the hospital. As usual during the day he was fine. At > night the hallucinations became impossible to control. He had always been > afraid of heights, but at night he would climb unto the roof of our two story > house saying he had to escape from attackers. It was distressing to see him in > this condition. He was re-admitted to the hospital. The doctors kept on > adjusting his meds. In mid May 1991 while hospitalized, he went into a coma > from which he never awoke. In three short weeks he died, a victim of over > medication, drug interaction and negligence. He was only 39 years. He had had > Parkinson's 5 years. > > Imagine my shock to discover just five years later that I had Parkinson's. It > began with weakness on my left side. I fell down many times before I realized > something was wrong. I started to become timid and apprehensive in court. I > would tire easily. I could not sleep through the night. I had leg cramps and > dyskinesia. I experienced vivid dreams and nightmares when I slept. I suffered > from severe depression, my expression was mask like. I suffered from confusion. > I could not read a book or concentrate on written material. My normally clear > handwriting turned to a scrawl. I became forgetful, this was especially > significant to me, because I had always had a photographic memory. I could not > follow a simple recipe. My normally loud voice became a whisper. I lost my > sense of smell. I had tremor on my left side. At first I refused to accept my > neuro's diagnosis, however he prescribed and I began to take 1-Sinemet 25/100 > and 1-Sinemet CR 25/100, three times daily. That helped me. My brother in law, > a neurosurgeon in Washington. D.C., arranged a consultation with neurologists at > Johns Hopkins, who confirmed the diagnosis. After the initial shock wore off, I > made one very critical and important decision. I was going to manage the > monster called Parkinson's. It would not get the upper hand. I was going to > fight it. I would not take more than one medication at the outset, no matter > what, and I would decide whether I would take more than one, not my doctors. I > would learn everything I could about the disease, treatments, and alternative > therapies. I would research my family tree to determine if there was anyone who > had it before my brother. I would make all adjustments necessary to prolong my > productive life, and keep the disease at bay. > > I had enjoyed a very successful and profitable private law practice. I was > forced to lay off most of my employees, and streamline my practice. I began to > retool to change my practice from trial/litigation to mediation. I eventually > decided to semi retire. I now pursue an interest in photography, and in the > last five years I have traveled extensively. I also have a photography web > site. I write poetry, and one of my poems, "Parkinson's Monster" recently won > two awards. I have been able to enjoy the re-mastery of my life by relentlessly > pursuing alternative therapies and by researching ways to improve and live with > this monster. Everywhere I go I try to discover ideas and facts which will help > me in my fight. I mentioned the Isotonix products which I came in contact with > by chance. Well, that's incorrect. I believe in the power of prayer, and all > of my discoveries, I believe come as answers to fervent prayer. > > I also changed my diet to one highly weighted towards vegetables and fruits, > grains and legumes. which allowed me to stop taking medication for my diabetes. > I control it now through diet and exercise. This was achieved after taking a > course with Weimar Institute in California called "Reversing Diabetes." They > can be found at their web site, and they present this seminar all over the US > and Canada, and overseas regularly. > > Researching the maternal side of my family tree I discovered that several > cousins have suffered from Parkinson's during the last 100 years, but that's > another story. > > Besides the products I mentioned, I also take a product known as "Seasilver." I > went to Port Townsend, WA, located on the Olympic Peninsula to participate in a > photography workshop, and while there I learned about this product. It has > resulted in dramatic improvement, taking my improvement to the next level. I > also have a web site where I sell Seasilver. I am a great believer in sharing > my discoveries with others. I believe in divine intervention and revelation in > response to prayer. Let me venture to say, all the manufacturers of products do > so for gain. In the real world that's the way it is. Whether its a drug > manufacturer (Schering, Upjohn, etc.) they do it for gain, not for altruism. Of > course the inventor may have had additional goals, such as improving health, but > usually the manufacturer does not have that goal uppermost. Let's not kid > ourselves gain is the goal for the drugstores who market the products also. But > that's why we the consumers have a brain, to figure things out and choose what > direction we will take in our lives. I believe knowledge is God given and > powerful when used correctly. So doctors and traditional medicine has an > important place, and a part to play in protecting our health and well being. > > Most drugs are poisons, most have side effects. In fact sometimes the side > effects are worse than the disease the drug is treating. I believe we have to > be judicious in using drugs, even the helpful ones. I believe that if you > decide to take any drug, you should consider all available knowledge pertaining > to it. Your doctor may prescribe, however, it's your body and you have the last > word. If my brother had questioned some of his prescriptions he would be alive > today. Instead he trusted his doctors implicitly, to his detriment. It is my > belief that all factors should be considered. Medication is great if that's all > you can do. But nutritional supplements have helped me in addition to exercise > and dietary and lifestyle changes. These nutritional supplements are not > medicines, but food substances. In reconstituted form they become more > bio-available than vitamin tablets. Sometimes Parkinson's results in swallowing > difficulties, these supplements solve that problem. > > I am outlining my regimen below in response to queries, however each person is > different. I have no medical training. Do not, and I emphasize do not take > this as professional advice. This is simply the regimen that helped me. > > The following powdered Isotonix products must be reconstituted in liquid > preferably distilled or purified water. When I began my regimen I included only > 2 capfuls of CoQ10 each time. I felt that because these products are more > bio-available, I would build up the amount depending on my results. I went up to > 4 capfuls only when the recent research news came out. I combine all of the > doses in the appropriate amount of liquid, resulting in a fizzy pleasant tasting > cocktail. I drink the first serving first thing in the morning on an empty > stomach, with breakfast 20-30 minutes later. The other two servings are taken > twenty minutes before meals.: > > 3 times daily: (Isotonix Products) > capfuls Aloe Plus aloe vera juice > capfuls OPC-3 > capful Antioxidant > capfuls CoQ10 > capful B-12 (every other day only in the morning) > > > This regimen provided dramatic improvement. Information on Isotonix products may > be accessed at:http://www.bonafidehealthsolutions.com > > Click on Health & Nutrition. Each product is described at the web site. > > I have now modified my regimen to include Seasilver. > Information on Seasilver may be accessed at: > http://www.myseasilver.net/bonafidesolutions > > I hope this information is of benefit to those interested. > > > > Phyllis wrote: > > > I am very grateful for your input. I too have relentlessly pursued an > > alternative medicine approach to my PD and have been extremely pleased with > > reversal of almost all of my problems. I have always felt the "proof is in > > the pudding" and I am willing to test the waters everywhere, particularly > > when alternative approaches are generally not as toxic as meds. > > > > Thanks again for sharing, Phyllis > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn