Parkinson's Disease Tulip


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Old 01-24-2007, 03:51 PM #1
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Default Quackery detection...

...or, if it walks like a duck. (With apologies to daffy )

Another thread made me think about just what sets off my "Quack Detector" and I had to conclude that a part of it is almost unconsious. It also seemed like a good thread since all of us are vulnerable to the little man with the bottles at one time or another. So, do you have a rule of thumb or two that makes you narrow your eyes and say, in your best Bugs Bunny voice, "Wait a minute...." ?

Here's a couple of mine-

1- Does it sound too good to be true?
2- Does it involve me giving someone my money?

Obviously it requires a preponderence of evidence but you gotta start somewhere.
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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 01-25-2007, 12:51 AM #2
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Default Rules of thumb

It seems that for practically every rule there are exceptions.

It seems that for every good thing there are counterfeits.

It seems that for every answered question there arises more questions.

It seems that for every truth there are perversions of that truth.

It seems that for every law there is a breaker of that law.

It seems that surrounding every scientific fact there are fictional embellishments.

It seems that without opposing forces cycles stop, yet by opposing forces motion stops.

It seems that the depth of our knowledge can be contained by the shallowness of our thinking.

It seems that if something sounds too good to be true it usually is, but many things that are true sound too good to be.

My rule of thumb is to investigate, and if it costs me some of my money then so be it.

It seems that most worthwhile things are not free.

michael b.

That's how it seems to me.

On the other hand, I have also lost my share of money and time to quackery.
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Old 01-25-2007, 02:00 AM #3
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I have nothing against experimenting a little but don't have money to try most of the suggestions. Most of it is "quackery" or we'd all be doing a lot better. Is quackery defined by it costing money, not approved, safe? If it helps for awhile is that quackery or placebo?

As much as I challenge the medical community and big pharmas to come into the 21st century regarding how they treat and view patients, the challenge is for them to work with us, not to do their job. The person with the illness is the real expert on the disease, no one else can be. But that doesn't mean you can cure it - you need other expertise to bring that all together. If you have a theory, or find something that works, one way or another to get it on a regular basis, it has to be approved. You can't rely on someone privately providing you with anything on a regular basis.

If something works over the counter, that's fine if checked out for safety or conflicts with other med.

On the other hand, there's nothing I'd like better than to have someone from this forum shout, "Eureka I've found it." I'll be right behind you.

paula
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"Time is not neutral for those who have pd or for those who will get it."
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Old 01-25-2007, 08:18 AM #4
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Default On the other Hand

This seems to be such an individualized disease that it will be practically impossible to cure unless each of us is involved in the process of determining what caused its onset in us. The very fact that this disease is a PROGRESIVE DEGENERATIVE disease indicates to me that whatever caused it to begin with is still there creeping its way through our brains. So far, I have not read any proposed therapies that address this possibility. If this is the case, then time is NOT on our side, and the future does not look pretty. If I am ultimately responsible for my own health, then I must be actively engaged in the attempt to restore that health.

Should I be cautious? Absolutely.

Should I do my homework? Without a doubt.

Should I confer with my doctors? You betcha.

Should I allow my findings to be scrutinized by my peers? Of course.

Should I expect my peers to follow me down my chosen path? NO WAY...NO HOW.

michael b.

Paula, thanks for your response. As usual, it was very well thought out.
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Old 01-25-2007, 03:22 PM #5
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Default michael7773 is right

Time is not on our side. If there is going to be any improvement or, dare I say it, a cure within the time frame that does us some good then it is almost certainly going to have to come from us. The whole White Rat thing is about this. Like Michael, I don't expect anyone to follow me where I go. I do, however, feel an obligation to come back and tell everyone what I saw down that particular road in hopes of giving them some benefit personally and all of us collectively.

I feel certain there is a cure already out there in the published literature waiting to be found. It's something in the way of an herb or supplement (or combination) because otherwise Big Pharma would be all over it. If only we had 1000 PWP in a coordinated effort at self-experimentation..... Hm.....????

You know, the way things are done is seldom the only way to do things and often not the best. And the most advantageous way for Big Pharma with all the money is not going to be the most advantageous way for a Parkie watching his life drip through his fingers. The latter group needs speed even more than it needs caution. It's similar to the way botanists are forced to evaluate medicinal plants in the rain forest as it is vanishing. Down and Dirty.

-Rick
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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.

Last edited by reverett123; 01-25-2007 at 03:25 PM. Reason: typo
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Old 01-25-2007, 03:53 PM #6
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Rick with complete sincerity I say ''GO for it". All areas need to be covered and I appreciate your posts. My neuro thinks I'm crazy because of your wrap posts - I went in looking like a mummy.

paula

Edited to add: also Michael, who has been experimenting and researching for years, along with Ron Hutton and all the White Rat contributors.
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Last edited by paula_w; 01-25-2007 at 04:02 PM.
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