CTenaLouise raised a question in another thread that might be interesting. In part she said: "what if we really do not have Parkinson's Disease?
what if we have been categorized poorly, by doctors that never use their brains - they read the diagnosis right out of the book -and their technology is stagnant, they never let it grow into a different category, because
they are boxed in thinkers?

what if what we all have is a certain type of toxicity and the big pharmas
are encouraging the doctors not to think, by bribing their neurons to think
in terms of greed..."


Despite my thread title, I would ask "What if PD is something entirely different than we think?" I have a growing feeling that while there is a basic problem based in our physical self, there is also a major problem with our psyche, for want of a beyyer word.

Stress seems to be key to the latter part. Why are we so vulnerable to it? Is it possible that the basic problem induces a fragility in us? A breakdown similar to adrenal fatigue? Something so profound that allows the least little frustration to send us spiralling out of control?

Perhaps PD is some sort of hybrid disorder or something.

dear rev,

an article:from the National Geographic

it makes you think...

http://news.nationalgeographic.com/n...ll_sounds.html

It would be a great thing!

This thread and the one started by ol'cs "Didn't know" which has diverted from the new patch drug to a general drug impact/side effect discussion raises some massive issues for us.

Firstly look at how many posts "Didn't know" has generated in less than 24 hours!

I am sure there is not one of us here who does not regularly mentally challenge his/her diagnosis.

We all have widely differing combinations of symptoms.
We all take widely differing combinations of PD drugs.
We all have widely differing responses to these drugs.
We all suffer widely differing drug side effects.
We all have widely varying rates and profiles of PD progression.

WHY???

The over simplistic answer is that PD is a complex illness.

Perhaps the more realistic answer is that PD is a generic term in the same way that the term "virus" is used.

There surely is not another disease like it:

Almost impossible to definately diagnose.
Relentless in it's progression.
Indescriminate in its selection of candidates.


It's a pity we all live so far apart and that many of us are so imobile because I am sure reverett123 has a good general point about what we all ought to be able to do together (despite what some of the posts to his thread have said). We are, as he often says, at the mercy of drug companies who primarily exist to generate a financial return for their investors and are also restrained by a mass of other outside factors.

Afterall we do all have one thing in common, we are desperate for a cure or even something to slow the disease progression!!

Not sure if any of that will be of any use to anyone but I feel better to getting it out .........

Chris

"We all have widely differing combinations of symptoms"

How many of us don't suffer from tremor and/or rigidity and/or bradykinesia and/or impaired balance.

Remember pd is wrongly diagnosed many times.

"We all suffer widely differing drug side effects".

These are strong drugs taken by people of differing ages at different levels of health. My Neuro reckons Paracetemol with its side effects would be difficult to clear the authorities nowadays.

"We all have widely varying rates and profiles of PD progression".

What is new here, every disease does this, thats why we don't all die from Cancer. With pd we all end up pretty much the same.

Nice thoughts, nice thread, but I do believe in PD.

Neil.

after fifteen years with PD,
I can on very great days ---- run - can you?
I can jump up and down on a trampoline - can you?
I dare to live outside of what they say - "We can't do"
I can dance - can you?
I can sing?
On all days I try to have peace with all of those I know -do you?
I try anyway - just to see if I can?

somedays - I wonder -if we are dealing with a disease that can be kept in slow mode of progression with certain vitamins and minerals and eating
healthier and not thinking in sick mode all the time?

maybe we are taking bad drugs because some greedy professional goes by the big pharma -book diagnosing rules...

PD does not define me - does it define you dear aftermathman???

25% of people "with" Parkinson's Disease are wrongly diagnosed, due either to having a Parkinsonism : , or toxicity :

Those people that are tremor dominant are frequently wrongly diagnosed. They often have Essential Tremor, which has many causes that are nothing to do with Parkinson's Disease.

Even those people that were correctly diagnosed with Parkinson's Disease would now not be considered as having Parkinson's Disease if it was not for the drugs that were prescribed when they were diagnosed as having Parkinson's Disease.

Parkinson's Disease is basically due to not forming sufficient dopamine. However, the amount of dopamine that somebody produces is changing all the time, which is why symptoms can fluctuate so much. Millions of people that are never diagnosed with Parkinson's Disease will have low dopamine levels at some time, but not for long enough in order to get a diagnosis.

If somebody has low dopamine for just a few months they can be diagnosed with Parkinson's Disease. They will usually end up on L-dopa or a dopamine agonist at some point. However, due to a process called feedback inhibition, no common substance actually lowers somebodys own L-dopa formation than L-dopa itself. Although dopamine agonists initially stimulate dopamine receptors, their long term effect is to make the dopamine receptors progressively less receptive. This is why people tend to need higher and higher dosages, and more and more drugs, until they end up having hardly any effect.

So if somebody has low dopamine for a few months they will get a diagnosis and then be put on drugs which themselves will end up causing Parkinson's Disease, due to how the body reacts against them. Their problem ends up not being Parkinson's Disease at all, but the drugs that they have been given to relieve the Parkinson's Disease.

That's no problem for the pharmaceutical companies. At over a billion dollars a year, a downward spiral in symptoms, due to the drugs that they themselves have produced means that they have customers for years or decades that have ever increasing need for their products.

I read that we need to cut dopa production by 80% to display symptoms of PD. Have you seen such a reduction expressed as a temporary condition from which the patient recovered naturally ??? (the pope's miracle doesn't count ).

If so over what timeframe did this occur ?

Neil.

p.s. Tena, you really don't want to see my dancing.

Somebody will usually get milder Parkinson's Disease if their dopamine formation is persistently down to less than 25%. In severe cases the dopamine levels can drop below 10%.

The average person without Parkinson's Disease does not have high levels of dopamine. I doubt if the average person is above 50%. There must also be tens or hundreds of millions of people that are borderline, with dopamine levels of 30% to 40%.

In the Rotterdam study, over 6000 people without Parkinson's Disease were assessed for Parkinson's Disease symptoms. Large numbers of them reported Parkinson's Disease symptoms (stiffness, tremors, and imbalance).

So these people's dopamine levels must have temporarily been going below the 25% level, but not persistently enough in order to be diagnosed as having Parkinson's Disease. Many never went on to develop Parkinson's Disease. It was a transient problem for them.

The formation of dopamine is dependent upon the activity of the enzymes involved in dopamine formation. Enzymes are substances that the body produces that enable chemical reactions to take place in the body. The activity of all enzymes is changing continuously according to need and capability. So nobody, not even somebody known to have Parkinson's Disease, will be producing the same amount of dopamine all the time. Levels can go down, but they can also go up.

Thinking out loud...

Some aspects of PD are a common element amongst ourselves and even with "normal" folks. The damage to the SN is an example. The conventional wisdom is that we all have it. The CW also is that a normal who develops such damage will develop PD.

Some aspects are a common element with other conditions. There is an element of neuropathy, for example, that we share with diabetics. This neuropathy and other problems worsen with time, as does the movement element. So PD is an ongoing process. It doesn't seem to stop.

When does it begin? There are reports of children with PD. Polls on this forum have shown that half of us remember constipation - a PD related factor - as being a big deal in our childhood.

Our reaction to stress, however, is near unique. Is there any other disease where the simplest of stressors quickly renders one helpless? If this response is indeed unique, isn't it sensible to think there may be a key there?