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Old 01-13-2011, 06:20 AM
Muireann Muireann is offline
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Join Date: Mar 2008
Location: Ireland
Posts: 263
15 yr Member
Muireann Muireann is offline
Member
 
Join Date: Mar 2008
Location: Ireland
Posts: 263
15 yr Member
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Quote:
Originally Posted by made it up View Post
Hi Muireann,
When you first posted about him I thought I'd let it slide down the list without commenting and it'd die a natural death but when you defended him it got my blood pressure rising.
He claims like I said in my previous posting to have had a Parkinsons Plus syndrome (MSA) which as you probably know has a much poorer prognosis than the PD that most of here us are diagnosed formally by an MDS with.
He hasn't got or ever suffered from any form of PD and tried advertising in our Parkinsons magazine, without any success as his claims were proven to be ridiculous, and without any real medical proof.
Unfortunately he advertised his pathways program in other places and may have pulled it off for a while but listening to his interview brought back that sickening feeling that he's still cashing in on PWP's vulnerability.
It would be impossible to 'prove' that he never had PD, if he has recovered. How exactly could it be proven? When I was first diagnosed, the neuro was suggesting PD+ and eventually they settled on Atypical PD. These things aren't nearly as definable as you seem to think. One neuro i attended says he prefers to call all these diseases 'basal ganglia disease', as you never know how they will play out. When i was first dx'd [2003] i asked a neuro, "Is it possible that someone could just dip into a low dopamine state for a time, be symptomatic and pull out of it again, but never get dx'd with PD, just not get caught in the diagnostic net?". He said, "Of course, yes we know that happens".

If they know that happens, clearly they should be a lot more reticent about wading in with what we all know damn well here by now are very harmful drugs. It's not like if you delay dx, the person is missing out on the chance of a drug cure. It's not like withholding treatment for a tumour.

Because it is labeled as 'incurable', there is a profound negative psychological impact upon diagnosis, that actually contributes to the decline of the diagnosed person, pretty much as they walk out the door of the clinic.

I have had two DaTScans, positive for PD, three yrs apart, showing progression to the other side. They said they won't be sending me for any more. They said I "take too much in". Of what? The radio active isotope they pump you full of - into the very part of your brain they're supposed to be protecting from 'toxins'? I got really bad tremor, over night, after that first scan. Won't expose myself to that again, regardless of what anyone would like to prove.

I took PD medication for many years, up to and including l-dopa. I am off all medication now for 1.5 years. I still have PD, some things are worse, some are better, but my overall quality of life is vastly improved. It has been a long, hard and painful journey. There is no cure in a pill or surgery. There are improvements that can come about through very concerted effort but this involves addressing every area of your life. I have no doubt that I would be doing even better today if i had never gone on PD medication.

The problem is not that Coleman is a charlaton. The problem is that in doing the very things that are necessary to recover - avoiding PD meds and distancing oneself from neurologists and their negative assessments and toxic invasive procedures, one is left with no way of proving a means of recovery other than staying healthy and trying to pass that knowledge on to others. You're not going to make it into a randomized, blind, controlled clinical trial, are you?

I have never been in contact with Coleman. I don't know if his Aquas homeopathy, Bowen therapy, no wheat, dairy, high protein diet would benefit me or not. But I apply a general principle of constantly re-ordering my priorities in daily life to align them with my goals of eating a very specific diet, exercising appropriately, taking supplements, sleeping well, having good relationships, raising a family, managing family finance, learning new things, having a fulfilling social life and fulfilling my obligations to others. Given the extremely limited resources available to me in a state of very compromised health, that's quite an art to cultivate. I would like a 'mentor' who has succeeded in so doing, to guide me. Seems like that person would be a lot less of a charlaton than the neurologists who did me nothing but harm and cost me a hell of a lot more money than fifty bucks/dollars/euros a month.

If you summarily dismiss everyone who escapes PD as never having had it in
the first place, how are you ever going to recover? If I eventually reach a state of being symptom free, I would be expected to undergo another DaTScan to prove i am rid of the disease. But there is no way i am going to undergo another of those tests having seen the impact it had on my symptoms already. Plus you risk damaging your thyroid with it. Why aren't the men of science publishing journal articles about "dipping into low dopamine states" and recovering from them, and trying to discover the means by which one does so?

I deliberately posted a link to the audio link rather than the transcript. You can detect a lot of truth in the voicing.
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