Parkinson's Disease Tulip


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Old 05-18-2007, 10:50 AM #31
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Quote:
Originally Posted by therese View Post
Steff...so glad to have given you a giggle/chuckle just as you gave me. Now, as for "swinger"....hmmmm...I just may have "put my foot in it" with that term. I think your definition of that term takes it just a "step further" than what I intended when I used it...you know...just someone who really enjoys a good time and enjoys providing a good time for others. I think I'm getting in "deeper" with my explanation...so...just take it that I mean you're a "good time"...good fun person. How's that for an attempt to "get out of hot water!!! ...and all this evolving from your explanation to me that you SWIG Metatone!!!!! LOL Thanks for the laughs, Steff...the "best medicine".
Therese

Steff is not exaggerating. Whilst her explanation of "swingers" is very entertaining it is also exactly how the word is now used in the UK.
Sad misuse of a lovely word but also sadly true.

So the "Metatone Swiggers" is probably better than the "Metatone Swingers".

However Steff is yours a large bunch of keys?? lol

Chris
(UK)
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Old 05-18-2007, 01:13 PM #32
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Default Steffi and Metatone

From http://emc.medicines.org.uk/emc/asse...cumentID=16047

METATONE contains Vitamin B1 (Thiamine hydrochloride Ph Eur) 500 micrograms, Calcium glycerophosphate Ph Eur 45.6 mg, Potassium glycerophosphate 45.6 mg, Sodium glycerophosphate 22.8 mg and Manganese glycerophosphate NFX 697 micrograms in each 5 ml.

Vitamin B1 is self-explantory. The other four are minerals called electrolytes. They are vital to life. Let levels get too low and you die. Poor diet, heavy sweating, dysentery, etc are all ways you can lose them. Athletes are vulnerable which is why "sports drinks" are popular. As for PD, there are tons of references to them as gatekeepers that let things in and out of the cell wall. Ion channels.

From the same source:

Vitamin B1

Vitamin B1 is essential for proper carbohydrate metabolism and plays an essential role in the decarboxylation of alpha keto acids. Vitamin B1 deficiency may lead to the clinical condition known as Beri-Beri.

Glycerophosphates

Glycerophosphates were introduced on the grounds that lecithin contains phosphorus in the form of the glycerophosphate radical and that glycerophosphates would therefore be a source of phosphorus that would be more easily assimilated by the tissues, particularly by the brain. Phosphorus is essential for most metabolic processes. As calcium phosphate, phosphorus is a major constituent of bones and teeth. In addition phosphates are a major constituent of all oils and as adenosine phosphates, play an essential role in energy liberation and utilisation.

Calcium

Calcium is a major component of bones and teeth and is necessary for the clotting of blood, the integrity of many cells, especially those of the neuromuscular system and for cardiac function. The consequence of decreased calcium levels in its extreme includes convulsions, tetany, behavour and personality disorders, mental growth retardation and bone deformities, the most common being rickets in children and osteomalacia in adults.

Manganese

Manganese is required for the synthesis of the mucopolysaccharides of cartilage, glucose utilisation, steroid biosynthesis and for the activity of pyruvate carboxylase.

Sodium and Potassium

Sodium is present as the sodium ion in all body fluids and in particular in extracellular fluids, whilst potassium as the potassium ion is largely present intracellulary. Together, sodium and potassium control many cellular events, with a critical role in maintaining fluid balance and in muscle and nerve activity

So were you serious about how a bottle would last under your present methods?

BTW, in general this seems to be fairly safe stuff.
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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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Old 05-18-2007, 03:18 PM #33
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I meant to ask this question yesterday, but time got away from me. Have any of you seen Andrew Lessman on HSN? He sells his own line of supplements and he has a few that look interesting. One is called Urgent Energy and sells for $10.90 for 30. It contains royal jelly , green tea, Guarana extract, ashwagandha (an herb commonly used in Ayurveda, holistic health system of India) as well as high levels of B-complex vitamins. It also provides standardized extracts of several herbs traditionally used throughout the world to help maintain energy, combat fatigue and provide a balanced sense of well-being. (I am quoting that part).
He has another supplement called CoEnzymeQ-10 Plus - 90 Mg. which sells for $249.90 for 360ct. This formula is supposed to include 400 mg. Vitamin C and high levels of B-Complex vitamins.
One more is called Andrew's Five Favorites $24.90 for 30 capsules. This one contains Coenzyme Q-10, alpha lipoic acid and N-Acetyl Cysteine. Also included are molecules from green tea and red wine: EGCG from green tea and resveratrol from red wine. They have customer reviews and the reviews were all very good from the people who tried the supplements and said they definitely had more energy. I have seen some of you mention the alpha lipoic acid as being beneficial to you. My husband had been to a doctor in NYC who practiced both Ayurvedic and Western medicine. She gave Rich the Ashwagandha to start out with for his Parkinson's. However, there have been so many mental issues with him that we ended up needing a psychiatrist so we did not have much time to give ashwaganda the chance it may deserve. Sorry for the long post, when you get a chance, maybe check out the HSN website or Andrew Lessman's website. Probably there are products equally if not better that may be less expensive. Just wondering what you guys think.
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Old 05-18-2007, 05:05 PM #34
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Default Therese and Jackmana

Therese..yes it was little ol` me who said I would try to find out the make.It will have to be next week now as the pharmacist is not available til Monday but will attempt to remember.Glad you are enjoying this chat!!! It pays to let your hair down and go "off the rails " from time to time.Well that`s my excuse...lol
If you really want a laugh at my expense read my thread on the Hopi Ear Candles. Now that was some evening.

Jackmana...apparently this tonic has been around for some time,yes...so it could be the same one but the taste isn`t so bad .
You might also have taken Minadex in the past.
My sister and I used to have to line up for Minadex...Haliborange...Halibut oil capsules and Syrup of figs every morning before school.
And my mum always cooked fish on a Friday and delighted in telling me that it was BRAIN FOOD.
Well er mum....I have something to tell you.
It didn`t do MY brain a fat lot of good. lolol
xxx
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Old 05-18-2007, 09:07 PM #35
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Default CoQ -10

Steff...I remember, well, reading your post about Hopi Ear Candles. I was new to the forum at the time, but I was immediately "cued into" you as a person who has the unique distinction and ability to inject humor into a very serious area we all know as Parkinson's Disease. You may or may not remember that I am NOT the one with pwp but rather, I am the carepartner of a one...and I just find that being here with those who are pwp's has given me what I had hoped it would...a better insight and understanding of the disease and of those who suffer with it, and I'm so grateful to have found this place.

...oh, and Steff...I think your brain is "fattingly" good!!!

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Old 05-18-2007, 09:47 PM #36
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Default Vitaline Defends CoQ10

Well, what do you expect? Makes sense....As a Vitaline customer (when I can afford it - a rather irregular occurance), I received this in my email today:

Closer Look at a New Study on CoQ10 for Parkinson’s Disease Reveals Faults with Study Design

GREEN BAY, WI, May 21, 2007—A new study reported in the Archives of Neurology published online (May, 14, 2007) suggests that CoQ10 may not provide benefits to individuals with Parkinson’s disease. These findings contradict results from earlier studies involving a high purity CoQ10 supplement, Vitaline® CoQ10.1,2 Richard M. Delany, M.D., FACC, and founder of Personalized Preventive Medicine, finds that a closer review of this latest study design reveals several important weaknesses, including the use of a short study duration (3 months) and a low daily dosage (300 mg).

One earlier 16-month multi-center, randomized, parallel-group, placebo-controlled, double-blind study, published in the Archives of Neurology, found CoQ10 supplementation reduced the progression of Parkinson’s Disease as measured by the Unified Parkinson’s Disease Rating Scale (UPDRS) – a scale that evaluates severity of the disease. The most dramatic results were seen in the group taking 1200 mg/day (the highest dosage), who experienced a 44% less functional decline compared to individuals receiving placebo.1 Another study, published in 2004, examined the safety and tolerability of escalating dosages of Vitaline CoQ10 (up to 3,000 mg daily). This study discovered that blood levels of CoQ10 reached their peak at 2,400 mg dosage, thereby suggesting increased potential clinical benefit at this higher dose.2

“Although this new study utilized a nanoparticular CoQ10, there has been no correlation between a nanoparticular dose and a traditional CoQ10 dose. The 300 mg dose utilized in this study might be ineffective simply because it is a very low regimen for PD.”, states Dr. Delany.

The second point to consider is the study duration of only 3 months. According to Dr. Delany, “Neurodegenerative disease studies typically span between 6 months to several years. Six months may allow researchers to establish a trend or to evaluate the safety of a product, but three months will not be sufficient to establish benefit.”

Although the clinical findings were not positive, the results may be attributed to poor study design. Further analysis using a more effective dosage level and duration may confirm efficacy.

1. Shults CW, Oakes D, Kieburtz K, et al. Effects of Coenzyme Q10 in Early Parkinson Disease. Arch Neurol. 2002:59:1541-1550.
2. Shults CW, Flint Beal M, Song D, Fontaine D. Pilot trial of high dosages of coenzyme Q10 in patients with Parkinson's disease. Exp Neurol. 2004 Aug;188(2):491-4.

Dean Draznin Communications, Inc.
Dean Draznin
641-472-2257
dean@drazninpr.com
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Old 05-19-2007, 05:37 AM #37
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Steffi,
Thanks for that. It was definitely Metatone. Was Virol part of your regime? It was a malty syrup & by far the best health supplement of the time. Fish on Fridays, roast on Sundays, left-overs Mondays (bubble & squeak, shepherds/cottage pie, rissoles). Happy, healthy days!!!!!!
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Old 05-19-2007, 10:55 AM #38
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Default Oh how lovely....this debate...

...and so lively too.I have to reply to so many people so I pray I don`t miss anyone out.
Therese...Yes I do remember you and I am so very glad you are finding some support here.You must be a wonderful carer to invest all this time into finding out how you can best help your PWP.I am afraid I am rather a butterfly brain....so I find that what I lack in intellect,I can hopefully compensate for by my quirky "take" on life.I don`t get down too often and I have to say this disease has taught me a whole heap of things on how to tackle the not so good times....and humour wins hands down.
I am tempted to recount my escapade with an industrial floor polisher..even more bizarre than the ear candles...but may just give you a laugh.So keep a lookout.

Reverett...thanks for the information. I will spend some time absorbing what you have written but for now...no...I wasn`t serious about how long a bottle would last me but still don`t use a spoon. I will tell you when I have finished my present supply and maybe you can get a better picture.I have to say though..it is really making a difference.

Jackmana. VIROL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!
OMG!!! I remember that stuff but wouldn`t take it.Mums used to dip dummies into it didn`t they but I never had a dummy [soother/pacifier for you American folk]
but my mum put it on a spoon.YUKKY STUFF.
As for the meals...oh how true your list is.My mum could make a chicken last a lifetime!!! And she made Oxtail soup too...I believe you can`t buy oxtail now.And braising steak cooked in a pressure cooker with homegrown carrots and onions.She was so clever at making cheap cuts of meat taste divine. Oh you have sent me down memory lane. Lovely.

Chris????????????? Steff the Swigger is a great alternative to Steff the Swinger.And do I have a large bunch of keys?
Someone as witty and sharp as yourself...well....
You can have my keys anyday.
lolol

ps What would you like to unlock

Whoops..I`m just in a mischievious mood.

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Old 05-19-2007, 11:57 AM #39
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Steffi...Here's what I think about whose who possess the "art of humor", e.g., "butterfly brains" as you described yourself. I firmly believe that humorous people have to possess a very keen intellect and that humor is not so much a compensation for what one lacks in intellect but rather another aspect of intelligence. Therefore, do no underestimate your own intellect, Steffi. Of course, who am I, you might ask, that what I say holds any credence??? Suffice it to say that I have been on this planet long enough to have been able to determine what I've said, here, to be a reality. I am a former teacher who has known some very humorous students whose intellect was superior...and I always felt that it was as a "result of their superior intellect that they were so witty...very quick-witted that just came spontaneously. My pwp is one who tends to do as you do, Steff...puts herself down as to her intellect (which, I might add, is quite good) and feels that she has to overcome her lack of intelligence with her wonderful sense of humor. I have tried to convince her that her very quick-witted sense of humor is only made possible by her very high-level intellect...and so it is that I'm attempting to do the same for you. I know...who asked me to go on this "tirade"...but, I have noticed that you tend to downplay your intelligence and I just wanted to "put you straight" on this!!! LOL

I am eagerly awaiting the "tale" of your experience with the industrial floor polisher, "butterfly brain"!
I just realize how strange it is that I keep writing things not really related to the topic of CoQ-10 as was my original intent. I should apologize to all of you for having gotten so sidetracked...but, I have an idea that you would agree with me about Steffi so that you may not mind that I have written to and about her as I have. While I have the opportunity, I want to thank all of you for helping me to fulfill my original goal for being here at this place, i.e., to gain more knowledge and insight into PD so that I will be a better carepartner to my pwp...thank you.

Therese
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Old 05-21-2007, 02:36 PM #40
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Default Closer Look at a New Study on CoQ10 for Parkinson's Disease Reveals Faults with Study

Closer Look at a New Study on CoQ10 for Parkinson's Disease Reveals Faults with Study Design, According to VitalineFormulas.com

Monday May 21, 8:15 am ET
http://biz.yahoo.com/prnews/070521/aqm058.html?.v=10

GREEN BAY, Wis., May 21 /PRNewswire/ -- A new study reported in the Archives of Neurology published online (May, 14, 2007) suggests that CoQ10 may not provide benefits to individuals with Parkinson's disease. These findings contradict results from earlier studies involving a high purity CoQ10 supplement, Vitaline® CoQ10.(1)(2) Richard M. Delany, M.D., FACC, and founder of Personalized Preventive Medicine, finds that a closer review of this latest study design reveals important weaknesses, including the use of a short study duration (3 months) and a low daily dosage (300 mg), and failure to use the clinically proven CoQ10 product, Vitaline CoQ10.

One earlier 16-month multi-center, randomized, parallel-group, placebo- controlled, double-blind study, published in the Archives of Neurology, found CoQ10 supplementation reduced the progression of Parkinson's Disease as measured by the Unified Parkinson's Disease Rating Scale (UPDRS) -- which evaluates severity of PD. The most dramatic results were seen in the 1200 mg/day group (the highest dosage), who experienced a 44% less functional decline compared to individuals receiving placebo.(1) Another study, published in 2004, examined the safety and tolerability of escalating dosages of Vitaline CoQ10 (up to 3,000 mg daily). This study discovered that blood levels of CoQ10 reached their peak at 2,400 mg dosage, thereby suggesting increased benefit at this higher dose.(2)

"Although this new study utilized nanoparticular CoQ10, there has been no correlation between nanoparticular dose and a traditional CoQ10 dose. The 300 mg dose utilized in this study might be ineffective simply because it is a very low regimen for Parkinson's Disease," states Dr. Delany.

The second point to consider is the study duration of only 3 months. According to Dr. Delany, "Neurodegenerative disease studies typically span between 6 months to several years. Six months may allow researchers to establish a trend or to evaluate the safety of a product, but three months will not be sufficient to establish benefit."

Although the clinical findings were not positive, the results may be attributed to poor study design. Further analysis using a more effective dosage level and duration may confirm efficacy.

(1) Shults CW, Oakes D, Kieburtz K, et al. Effects of Coenzyme Q10 in
Early Parkinson Disease. Arch Neurol. 2002:59:1541-1550.
(2) Shults CW, Flint Beal M, Song D, Fontaine D. Pilot trial of high
dosages of coenzyme Q10 in patients with Parkinson's disease. Exp
Neurol. 2004 Aug;188(2):491-4.



Vol. 59 No. 10, October 2002
Effects of Coenzyme Q10 in Early Parkinson Disease
Full-

Evidence of Slowing of the Functional Decline

Clifford W. Shults, MD; David Oakes, PhD; Karl Kieburtz, MD; M. Flint Beal, MD; Richard Haas, MB Chir; Sandy Plumb, BS; Jorge L. Juncos, MD; John Nutt, MD; Ira Shoulson, MD; Julie Carter, RN, MS, ANP; Katie Kompoliti, MD; Joel S Perlmutter, MD; Stephen Reich, MD; Matthew Stern, MD; Ray L. Watts, MD; Roger Kurlan, MD; Eric Molho, MD; Madaline Harrison, MD; Mark Lew, MD; and the Parkinson Study Group

Arch Neurol. 2002;59:1541-1550.

Background Parkinson disease (PD) is a degenerative neurological disorder for which no treatment has been shown to slow the progression.

Objective To determine whether a range of dosages of coenzyme Q10 is safe and well tolerated and could slow the functional decline in PD.

Design Multicenter, randomized, parallel-group, placebo-controlled, double-blind, dosage-ranging trial.

Setting Academic movement disorders clinics.

Patients Eighty subjects with early PD who did not require treatment for their disability.

Interventions Random assignment to placebo or coenzyme Q10 at dosages of 300, 600, or 1200 mg/d.

Main Outcome Measure The subjects underwent evaluation with the Unified Parkinson Disease Rating Scale (UPDRS) at the screening, baseline, and 1-, 4-, 8-, 12-, and 16-month visits. They were followed up for 16 months or until disability requiring treatment with levodopa had developed. The primary response variable was the change in the total score on the UPDRS from baseline to the last visit.

Results The adjusted mean total UPDRS changes were +11.99 for the placebo group, +8.81 for the 300-mg/d group, +10.82 for the 600-mg/d group, and +6.69 for the 1200-mg/d group. The P value for the primary analysis, a test for a linear trend between the dosage and the mean change in the total UPDRS score, was .09, which met our prespecified criteria for a positive trend for the trial. A prespecified, secondary analysis was the comparison of each treatment group with the placebo group, and the difference between the 1200-mg/d and placebo groups was significant (P = .04).

Conclusions Coenzyme Q10 was safe and well tolerated at dosages of up to 1200 mg/d. Less disability developed in subjects assigned to coenzyme Q10 than in those assigned to placebo, and the benefit was greatest in subjects receiving the highest dosage. Coenzyme Q10 appears to slow the progressive deterioration of function in PD, but these results need to be confirmed in a larger study.

From the Department of Neurosciences, University of California–San Diego, La Jolla (Drs Shults and Haas); Veterans Affairs San Diego Healthcare System, San Diego (Dr Shults); Departments of Biostatistics (Dr Oakes) and Neurology (Drs Kieburtz, Shoulson, and Kurlan and Ms Plumb), University of Rochester School of Medicine and Dentistry, Rochester, NY; Department of Neurology and Neuroscience, Weill Medical College of Cornell University, New York, NY (Dr Beal); Department of Neurology and Wesley Woods Center, Emory University, Atlanta, Ga (Drs Juncos and Watts); Parkinson's Disease Research, Education and Clinical Center–Veterans Affairs Medical Center (Dr Nutt) and Oregon Health and Science University (Dr Nutt and Ms Carter), Portland; and the Departments of Neurology, Rush Presbyterian/St. Luke's Medical Center, Chicago, Ill (Dr Kompoliti), Washington University, St. Louis, Mo (Dr Perlmutter), The Johns Hopkins University, Baltimore, Md (Dr Reich), University of Pennsylvania and Parkinson's Disease Research, Education and Clinical Center–Veterans Affairs Medical Center, Philadelphia (Dr Stern), Albany Medical College, Albany, NY (Dr Molho), University of Virginia, Charlottesville (Dr Harrison), and University of Southern California, Los Angeles (Dr Lew). Dr Shults and Mr Meese are coinventors in a pending patent application. The application is jointly owned by Enzymatic Therapy, Inc, Green Bay, Wis (owner of Vitaline Corp, Ashland, Ore), and The Regents of the University of California.

RELATED ARTICLES

This Month in Archives of Neurology
Arch Neurol. 2002;59:1517-1518.
FULL TEXT

Mitochondrial Therapy for Parkinson Disease
Roger N. Rosenberg
Arch Neurol. 2002;59:1523.
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