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09-16-2012, 04:59 PM | #1 | |||
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In Remembrance
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OK, OK! A treatment, not a cure. But I'm tickled pink with it whatever you call it. And it has been working for me better and better for two weeks now and is over my Threshold of Disappointment, where many a good ship has been lost. Read on!
For months now I have been battling the steadily increasing weakness of my legs and my lower legs in particular. Walking getting harder by the day. Balance issues promised a fall just around the corner. Freezing becoming more common. Medication on a two-hour cycle totaling 2400 mg of sinemet daily. And that barely kept me together. Not a happy camper. Never one to give up easily, I broke open my emergency files of things that might be of some help. Eye of newt and things like that. I began to read about "Bioenergetics". While the name sounds like a L. Ron Hubbard knockoff, it is the branch of science that studies the movement of energy in a living system. Mitochondria and their function. Each one like a little gas powered generator pouring out energy for your cells to use. Thousands of them in every cell. They are the only energy source that exists for us. The coin of the realm. No spares to fall back on. If they fail so does every organ in our bodies. So as they age or some disease affects them, things begin to slow down and life gets more and more difficult. Mitochondrial dysfunction is one of the core forces at work with PD and it is a wonder that we don't hear more about it. There are things that boost your mitochondria. I have been working with four - Creatine monohydrate, acetyl-L-carnitine, N-Acetyl-Cysteine, and Quercetin. All are available at any health food store. I'm taking all four but intend to sort out the one that does me the most good. The muscle strength that has returned to my legs is extraordinary. Further improvements include almost no freezing, sleeping well, stability of meds, and a shorter time to first "on" in the morning. Make of it what you will.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: |
09-16-2012, 05:08 PM | #2 | |||
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Hi Rick,
very interesting news! Thanks a lot for sharing.
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Sim00 Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016. |
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09-16-2012, 05:30 PM | #3 | ||
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Magnate
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that's interesting rick. thanks.
what qty's? i think you've mentioned them before but i'm too lazy to dig them up. |
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09-16-2012, 11:03 PM | #4 | |||
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Senior Member
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I would recommend reading Dr. Teri Wahl's "Minding Your Mitochondria". Not that you have to go that drastic but it can't hurt to adopt her basic dietary approach with the food rotations and bone broth.
I will be trying a lite version of her diet come Wednesday when I can stock up a at the Farmer's Market. If you do not want to buy PM or email me and I can scan to make PDFs for you. Laura |
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09-17-2012, 06:04 AM | #5 | ||
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Junior Member
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Quote:
Reverette, about two weeks ago i started the creatine and within a day, felt strength in my leg muscles and more ability to lift things. This is notwithstanding the fact I have not yet gotten into the swing of things with a regular exercise program. The only supplements I took were co q ten and fish oil. No meds Of any kind. So, this white rat, reporting from the field, so to speak, will tell you that I, too, can vouch for creatine. As for the other things you mentioned, as of this morning, I have now added liquid l carnitime. The bottom line is, there are no competing theories insofar as me and creatine go because I am on no meds, I have not yet established a faithful exercise program, and I have been on the coq ten and fish oil for a while with no apparent reduction of symptoms (which for me are weakness land one sided tremors. I must point out that the improvement for me is I have gained a noticeable amount of muscular strength back, but I don't think I have any improvement in tremors. Anyway, this is white rat number two, reporting from the field. Last edited by Arsippe; 09-17-2012 at 06:07 AM. Reason: Incomplete |
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"Thanks for this!" says: | TrishaPDX (09-23-2012) |
09-17-2012, 07:30 AM | #6 | ||
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Magnate
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09-17-2012, 08:32 AM | #7 | |||
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In Remembrance
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Glad to see the interest. As to the doses - at this point I am simply going by the label on the theory that that gives some basic safety (althiough these all seem to have good safety profiles used alone). I am looking for a plan that maximizes my ability to function all day. That may mean that instead of taking five grams of creatine each morning that I take two grams four times daily. So there is going to be a lot of trial and error here.
This has me wondering about something else. The official line is that some unknown agent for unknown reasons and by unknown means acts in a way that kills dopamine producing neurons in the substantia nigra. This a slow process that may take 20 years to reach the 80% point which is suposedly when we notice symptoms. There aremany problems with this story. If I am figuring right, I am losing four percent of my neuron population each year. That means that when I hit the 80% mark that in just another five years I should burn through the remaining 20%, at which time I should be dead. Unless for some unknown reason there is a major change in the rate of loss. Then there is the problem of the dead neurons. When they do an autopsy and find dead neurons in the right places, they pronounce it "PD". But if they don't find dead neurons the prouncement is "Misdiagnosis". That part of the game is rigged so they are always right. But not everyone agrees with that theory. One question that comes up is "Are the neurons really dead or are they just in a coma?" and most importantly, "Can we wake them up?" So, I have some questions. If poorly functioning mitochondria are a factor, what is the effect on the neurons of the SN? As thier energy efficiency drops, does their production of dopamine follow? If we supply Ldopa will that deficit be overcome for a time? The waste products from making dopamine are known to be toxic to neurons. When we start on that treadmill, what is the effect on the rate of decline? etc.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | soccertese (09-17-2012) |
09-17-2012, 06:01 PM | #8 | ||
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Member
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Teri Wahl's talks So, on behalf of me, Dr. Terry Wahls of TerryWahls.com and Leanne Ely of SavingDinner.com, we would like to cordially invite you to take part in this groundbreaking 3 part series, Becoming Well. This series is free, but the information is priceless. IMPORTANT: Mark these dates on your calendar; we will fill up, we always do! *Thursday, September 20th * Tuesday, October 30th *Thursday, November 15th All sessions begin promptly at 8 PM EST and are an hour long. Here is your sign up page: http://savingdinner.com/wahlswebinar This three part webinar series: Becoming Well: The Importance of Vitamin D, Minerals, Your Gut and the Nutritional Interventions Necessary for Good Health is full of great information. Here is a taste of what’s ahead: September 20th, Session 1: The Incredible Importance of Vitamin D & Minerals *Your vitamin D levels are critical; which minerals you must have daily for optimal health. Inadequate mineral intake is associated with the top 10 causes of death and disability; 2/3 of Americans are deficient! October 30th, Session 2: Friend or Foe? Who or What is Living in YOUR Gut? *Your gut is a big factor your health or your disease; learn more about how to heal a leaky gut. November 15th, Session 3: It’s Time for an Intervention! *Your food is the basis of health or of chronic disease; nutritional interventions that may save your health! These information-packed teachings will take your health to an all-new level (if applied of course) and will have you looking at your food with all new eyes! I encourage you to take advantage of this amazing opportunity. We will make available the replays of course, but being there live is an experience not to be missed! Here again is the link: http://savingdinner.com/wahlswebinar See you this Thursday! |
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09-18-2012, 06:43 AM | #9 | ||
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Junior Member
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Rick,
On the subject of Mitochondria this might be useful. I was suffering from Chronic Fatigue for several years following a heart bypass surgery. In 2008 I was finally diagnosed with PD and found a UK specialist in CFS called Dr.Sarah Myhill. I recommend everyone with PD should download her file: http://drmyhill.co.uk/drmyhill/image...fs_book_27.pdf Also see: http://www.nature.com/nrneurol/journ...neuro0924.html http://www.ncbi.nlm.nih.gov/pubmed/19476553 http://www.ncbi.nlm.nih.gov/pubmed/18762218 Kenki |
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"Thanks for this!" says: | reverett123 (09-18-2012) |
09-19-2012, 12:22 AM | #10 | |||
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Member
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from book Natural Therapies for Parkinson's Disease Pg 64
(a paraphrased portion of "DOC BOX" ... researchers found that pretreatment with the combined agents of lipoic acid and/ or l-carnitine (ALC) increased mitochondrial biogenesis. The study provides important evidence that combining mitochondrial antioxidant/nutrients at optimal doses might be an effective and safe prevention strategy for PD Quercetin?.....papaya! |
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"Thanks for this!" says: | Arsippe (09-19-2012) |
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