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  • #16
    Scary stuff. A friend of mine's father was recently diagnosed with ALS. Talk about feeling helpless, well, I know the feeling.

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    • #17
      Originally posted by Catharsis View Post
      Scary stuff. A friend of mine's father was recently diagnosed with ALS. Talk about feeling helpless, well, I know the feeling.
      He should also get on LDN!!! There is absolutely nothing to lose! LDN may be good for ALS. Lithium might also help Lithium in the right amount is good for all of us

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      • #18
        My 80 y/o mother who has Parkinsons had some blood work done some months ago that showed she was also pre-diabetic according to the A1c Test (5.7%) and sensitivity to sugar from a GTT Test Result. Her glucose levels do seem high too. At the time the low-carb doctor she was seeking told her to make some dietary changes, basically following a paleo/primal diet and avoiding sweets. He also showed her results of an Allergies Blood Test (IgE) and noted some additional foods to avoid and treat with Sublingual Immunotherapy. He also gave her some additional supplements, and upped her daily synthroid dosage she was taking for thyroid to optimize those TSH levels. He did not change her Levodopa dosage. He also discounted that CoQ10 would effect Syntrhoid. He said some of his patients have anecdotal results with Glutathione though he left it to us to decide on that, which we have not tried.

        Anyway since she has been following these recommendations, perhaps coincidentally she has had extremely low energy levels. She has also lost about 10 lbs, which is significant for her 120lbs weight. The doctor suspects the energy levels may be tied to allergies (which are very strong this year in our area due to a mild winter). It may also be an increased symptom from her Parkinsons. She also has lots of problems sleeping, which again may be a PD symptom. Maybe this (lower energy) also goes hand in hand with weight loss at least temporarily?

        Most recently her other (CW) doctor was alarmed at her weight loss and told her to eat more sugar to put on weight, particularly by drinking more Ensure. This is all very confusing for my mother of course. She is trying to walk a middle line. She maybe eats one piece of bread a day, some eggs frequently, fruit and a little meat and veg. She is not eating much so this may contribute to low energy, as she is usually too low energy to prep food. Was ordering from a local crossfit food delivery but their menu does not offer many choices, they are hard to order from and a bit pricey for quantity.

        Would appreciate any advice/thoughts.
        Last edited by abexman; 06-13-2012, 10:38 AM.

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        • #19
          Well I was reading through this book on PD and now I'm confused. It says that too much protein in a diet can interfere with levodopa uptake (the main PD medicine my mom is on). It talks about eating 7 parts carbs to 1 protein. Presumably this does not necessarily mean "grains" but still, this is the first I had seen this discussed.

          Amazon.com: What Your Doctor May Not Tell You About Parkinson's Disease: A Holistic Program for Optimal Wellness (9780446678902): Jill Marjama-Lyons, Mary J. Shomon: Books

          Here's the pages:
          IMAG0117.jpgIMAG0116.jpg

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          • #20
            Here's the book recommended:
            http://www.amazon.com/Eat-Well-Stay-...well+stay+well

            Eat well, stay well with Parkinson's disease is designed for people with Parkinson's, caregivers, and health professionals. Written by a registered dietitian who specializes in the nutrition needs unique to Parkinson's, this book features large type, lie-flat binding, and spaces for notes. Also included are recipes and menus designed to provide a 7:1 ratio of carbohydrates to protein, for better absorption of levodopa (Sinemet).
            Information includes: Timing of medications and dealing with nausea Controlling constipation safely, preventing bowel impaction Fluid needs and dehydration Parkinson's and bone health B vitamin needs, B6 and levodopa Dealing with heartburn / reflux / ulcers / hiatal hernia Why unplanned weight loss can be a problem Chewing & swallowing difficulties Protein and levodopa Menus and recipes in the 7:1 ratio
            An excerpt from the book:
            Get at least six servings of complex carbohydrates
            daily. This means whole-grain cereals, bread, pasta, rice,
            bagels, crackers or English muffins. Use butter and
            margarine sparingly, as well as fatty sauces and spreads.
            Eat moderate portions of protein--two to three servings
            a day. Too much protein increases alertness rather promoting
            relaxation and calmness. Try to make at least one protein
            serving cooked dried beans, soy products, nuts, or an egg --
            these contain lecithin, which can improve mental state, and
            memory. (In “Menus--7:1 ratio” and “Recipes” you’ll find
            snacks, meals, and recipes that use some of these foods.)
            I should add I have an electronic copy of this book that I'd be happy to share with someone to get their expert opinion.
            Last edited by abexman; 07-10-2012, 06:07 AM.

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            • #21
              Another important excerpt from Holden's book:
              The combination of levodopa and carbidopa, called
              Sinemet, is an important medication used in treating
              Parkinson’s disease. However, there are some barriers to
              absorption of Sinemet by the body.
              1) If you take your Sinemet with a meal, or just
              after a meal, it may take a very long time for the
              Sinemet to be absorbed. This is because the
              stomach takes about one to three hours to empty
              food. The Sinemet is mixed with the food, so it
              takes the same amount of time to clear the
              stomach as the food does.
              2) A high-fat meal takes even longer to clear the
              stomach. Fat is digested very slowly compared
              to carbohydrate and protein. If Sinemet is mixed
              with the fat, it will clear the stomach at the same
              time as the fat.
              3) Protein in the meal is broken down in the
              intestine into amino acids. These aminos must
              travel across the intestinal wall to get into the
              blood. Once in the blood, they must cross the
              blood-brain barrier to get into the brain. Sinemet
              also must cross the intestine and the blood-brain
              barrier. And the aminos and Sinemet use exactly the
              same carrier system to get across.
              Most meals contain a large amount of protein,
              and so the aminos use up all the “carriers.” The
              Sinemet must wait until the carriers are free
              again, in order to cross over into the
              bloodstream. The same thing happens when
              Sinemet tries to get to the brain, where it does its
              work. Once more, aminos clog up all the
              “carriers” and Sinemet can’t get through to the
              brain.

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              • #22
                Well, very interesting. So on further examination it turns out at the same time my mother started having new symptoms (about a month after starting paleo), her doctor, unknown to me at the time, increased her Sinemet from 2 to 3 pills a day (about 2 weeks after starting paleo). In my reading I am now beginning to think the problem may be the Sinement itself. The timing correlation is clear. The rapid onset of new symptoms does not seem to conform to what PD is supposed to do. The neuro of course thought it was the diet initially. No diff off paleo. Then she prescribed amantadine and my mother instantly reacted very badly to it. Now, based on me prodding she is suggesting my mom reduce Sinemet. However I fear this is a harder path than the neuro is leading on.

                Please take a look at this book, about a CA acupuncturist who conducted her own studies of reducing medication in PD patients who later had "complete" recoveries and the failures in those that did not. I am part way through, would be interested to hear your thoughts:
                Download Once Upon A Pill

                The research continues.

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                • #23
                  I have gotten so cynical about the nutritional advice handed out by those with "degrees", that I automatically discount over 50% of said advice. A sure way to get confused is to try to marry their recommendations (by the book) with anything smacking of paleo/primal or even low carb. And I definitely am averse to taking medications that doctors hope will "cure" me before it kills me. Not that this helps your mother in the slightest. Keep researching, and possibly something will click. She could do worse than following a dairy-free, gluten-free, sugar-free primal diet.

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                  • #24
                    I am still sorting through all the resources but this site seems to have a lot of info on alternative treatments for PD. Some of which I am skeptical and some of which I wonder might actually work. There is also a podcast and an annual summit. Am thinking to read Dr. Rodgers book that is also available.

                    Mission of Parkinsons Recovery | Parkinsons RecoveryParkinsons Recovery

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