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We who explore alternatives to the often coldly conditioned response of mainstream medicine to our pretty frightening disease need not apologise for it, Kathy. There is more and more speculation amongst researchers about the possible environmental causes of brain diseases/tumours. One I heard recently pointed to the fact that many commonly used insecticides are designed specifically to knock-out the central nervous systems of their targets. It takes no great leap of imagination to see where that may take us. Any shift to using/taking/eating products free of contaminants is plain common sense, hardly weird. And it gives us back some power in steering a courssse through this minefield. I would like to ask you to interpret for me some of the terms you use - EDTA, DHEA, NADH etc. I am 52 dx 4 mths (initially as early PD, but second neurologist will not go beyond 'extrapyramidal syndrome'), but symptoms go back much longer. I consulted a naturopath 3 weeks after first diagnosis (didn't tell him about the dx, but everything he ssaid on examination pointed to CNS dysfunction). I commenced a detoxifying diet a week later, combined with calcium, magnesium, multi-B, Vits C and E, zinc, L-tyrosine and a 'herbal brew' containing gingko biloba, hypericum, skullcap, avima (some of these are 'mood elevators' - one is an anti-depressant - there may be more detail that escapes me just now - at home with my pills 'n potions!). I also began adding fresh juices (carrot primarily, beetroot, celery and other leafy greens) to my diet x3 per day - I now call my juicer my 'life support system'. I do not eat meat, wheat, dairy (except for non-fat yoghurt with acidophilus), the nightshades (tomatoes, potatoes, eggplant, peppers), fried foods or take caffeine. I use a lot of soy products (lecithin daily, soy milk, soy cheese, tofu ), eat deepsea oily fish most days, and have as much of my food raw as possible/I can stand. I dress my many salads with flaxseed oil (very high in essential fatty acids) and lemon juice or cider vinegar. Now I know that sounds pretty rigorous. And I felt angry and more than a bit sceptical at first. Protested and ate a lot of meat the weekend before I began. Smarted at what my first shopping trolley cost me. But within days of starting it I noticed at the keyboard that my hands looked strangely 'alive'. Then people began to tell me how well I looked - ironically 'caused' by chronic illness. My face took on colour, the texture of my hair changed, I began to feel energetic, happier. AND my left arm that had begun to flex into my waist began to straighten, lengthen, and occasionally swing of its own accord. But there was NO improvement in movement of my left hand, nor in my altered gait - left leg. There are other real changes too relating to problems I was attributing to menopause. After 6 weeks on this regimen - and I stuck pretty faithfully to it - the naturopath 'talked me through' a one week detoxifying (of the liver) juice fast as well. I still took all my supplements and added 2 tbsp.per day of flaxseed oil to the juice. Tough at first, but I managed it (haven't been able to face green 'gunge' - juice - since tho') and felt almost magnificent for it. Of course I do 'break out' from time to time. Only human after all. There are things I miss and it's hard to refuse hospitality at times especially when those missed foods are offered. But when I do I just up the anti-oxidants (C, E and A - this last in the carrot juice) after each little deviation and just get back into it again. I doubt I will ever return to a 'normal' Western diet again. Why would I want to when I can feel this good? In short, I think I accept there is some irreversible damage. I have no control over that. But I owe it to myself to do what I can to prevent further damage if there is any possibility that environmental factors play a part. I try to buy/eat only pure fresh foods without preservative. There is little in the average supermarket that I can now regard as other than 'poison'. And cooking is now minimal. I am experimenting with non-wheat baking, can buy good non-wheat bread. I had the OK to add some free-range chicken but didn't enjoy it so don't bother now. Eating out is difficult. BUT ... It HAS meant changing my whole life. But PD is a sentence to that anyway. I disagree with Laurie that it's all a matter of 'belief' - but then I suppose we could interpret 'belief' in different ways. I don't think I'm a nut to draw a line at putting into my body substances that I can easily establish are harmful to me while failing to put in those that are known to be beneficial. I believe that the heart campaign based on low-fat diet fails to educate us in the need of the CNS for essential fatty acids. Similarly weightloss campaigns. I am worried about the prospect of becoming reliant on medications that contain toxins with what sound to me like horrendous side-effects (I currently take Selegiline only and feel pretty good on it, with minimal increased mobility on my left side). I would like to think that I can do something to slow the progression of my illness. The signs are that I can. Depression is the real 'killer'. But that only gets real bad every time I go to my GP or neurologist! (In truth, they make me sick! But I know I need them.) I have gone on too long. But I've been sitting here in this list for a couple of weeks now without really 'coming out'. I find it tremendously helpful, especially those times when things are tough and I slump into self-pity. I think you are an inspiring bunch of people who, but for the 'misfortune' of unwillingly joining 'the club' I'd never have 'met'. Thank you for all you have given me so far. I hope my contribution may be of intereeeest (there goees my left hand again!) to some too. Hope you'll let me know what you all think ... ?? Cheers Beth Leslie PS Where ARE all the Aussies? On Thu, 5 Dec 1996, Kathryn Nannery wrote: > Thanks for the e-mails. A couple of people have asked me to expand on my > information on preventive or alternative medicine.and what I've learned > about mercury toxicity and candida/intestional integrity. When I found I > had PD (symptoms- loss of right arm swing, difficulty in writing, voice > volume tapers down- early stages) I learned that maintream neurologists > couldn't offer me anything but periodic check-ups (watching and waiting for > symptoms to worsen so a prescription can be written) > One did recommend joining a gym which is something I have done & recommend. > Also I suggest you have your dental fillings evaluated by a "mercury-free" > dentist. Mercury is more toxic than lead and has been banned in Sweden & > Germany. The American Dental assoc. feels there is no danger from amalgam > fillings. They should last 15 years they say. Mine were put in when I was a > child and I'm 54. I'm sure I'm not the only one who hasn't had their > fillings changed 3 times by now. It's been expensive to get rid of all the > amalgam safely. I required many crowns. Also receiving DMPS chelation to > get rid of the high level of mercury found in my urine. > Another tidbit that I've just > become aware of is a link between Candida that causes a problem in intestinal > integrity or a "leaky gut" and PD. A neurologist by the name of Putterman > gives seminars on the subject. My doctor has his video. He has linked > other ailments besides PD- MS, Lupus, Arthritis. I plan on getting a copy > of the video but I did write down his list of recommended treatments for PD. > Here it is: Bowel detoxification (I start next week, don't know a lot about > it), hepatic upregulation, L-Dopa restriction, EDTA Chelation, DHEA, NADH, > OPC 85, Vit B12, Ginkeobiloba. I don't know what half of the items are. > NADH? OPC 85? Perhaps others on the Internet know. I will ask my doctor > next visit. Doing something to slow PD down keeps me optimistic. Hope I've > inspired you and you will investigate some of these ideas yourself. Share > your experiences with me. I'm not a nut grabbing at weird treatments. I'm a > registered nurse who hasn't been happy with the prescription writing doctors > who treat the symptoms. Regards, Kathy >