john coleman interview
 

Worth a listen, set aside an hour:

http://www.blogtalkradio.com/parkins...ull-recovery-f

so whadya think???
 

49 bucks a month for his secret. Hmmm, I don't know, I smell a rat!

I smell a rat when I hand over 150 euro to a neurologist for fifteen minutes of disinterested 'attention', and the dispensing of pure poison, with little follow through.

You can listen to the interview for free and there is a lot of valuable information in it. Why shouldn't he charge for his time, anymore than a bio-medical practitioner, not one of whom can claim to have assisted anyone into a state of being symptom free. Coleman has knowledge and he could not possibly respond to all requests for it, given the volume of demand, without charging for it. There is no one-size-fits-all remedy and dealing with individual cases is effortful, if done well.

Yes but....
 

Muireann,
He's a known charlatan here in Australia and INMO a complete wanker who tries to rip PWP with his pathway recovery from PD. Fortunately with little success here.
The parkinsons association and community here have been complaining about his ludicrous claims for many years now.
Previously he claims to have recovered from not just PD but a Parkinsons Plus syndrome which makes it even more untruthful.
I'm not having a go at you Muireann I'm just very annoyed that he has the gall to tell us like it's fact and vulnerable people newly diagnosed or those further down the track might stop taking the levodopa their MDS recommends or prescribes which would otherwise give them a greater degree of relief from the rigidity and bradykinesia they would otherwise suffer with.
Apologies for offending anyone who took much notice of him but on behalf of many parkies here I find this man "deeply offensive."

Could you elaborate on what, in your opinion, makes him a "known wanker" or a "complete charlatan". On what do you base your opinion? I am genuine interested to know. It's a substantial claim and you must have your reasons?

For sure!
 

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.

And furthermore, to address your comment about Coleman claiming a dx without medical evidence, here is the transcript of the interview, please see page 14 onwards where he discusses how he was diagnosed.

http://www.aquahydration.co.uk/docs/interview.pdf

have to agree with madeitup...Mr Coleman has been touting his" pd recovery cure" for many years in Australia - and to date I have not heard of one person who has been cured- except the said Mr Coleman. The parkinson's organisations at both state and federal levels in Australia have refused to endorse him or his product, these organisations are run by pwp for pwp and would be only too happy to ease the suffering of any one of the 80000+ pwp in Australia.

The old adage "caveat emptor " (let the buyer beware) should be applied to dealings with Mr Coleman

Cate

Cate,

In this interview, he actually states very clearly that he does not 'cure' PD, or any other disease for that matter, merely that he can help people bring about an improvement in their health, hopefully to the point of being 'symptom free'. This is not simply splitting hairs. Many people recover from cancer, only to die eventually of something else. Were they cured of cancer or were they in remission at time of death? Aiming to recover one's health is a good goal and requires that one be pro-active in medical matters, and crucially, in non-medical areas of one's life; that is why it makes no sense to be talking of a cure. Such talk I would consider unethical.

I am not surprised that the four people he has helped to become symptom free are keeping quiet about it. I am getting enough flak here for just opening up a discussion about the possibility of recovery. Part of what you need to do to maintain well being is to forget you ever had PD, dis-identify with it, and remember how it felt before you became sick. For a lot of people, healing would require that they focus on what brings about well-being but stop thinking and talking about the original diagnosis. Being in the public limelight would not further that goal. Coleman has the strength to bear it.

Lots of people recover from 'incurable' diseases. Take a look at The Spontaneous Remission Project, though I suspect recovery is anything but spontaneous:

http://www.noetic.org/research/proje...raphy-project/

My two adult children have been following this thread. The youngest told me she was initially skeptical of Coleman until she listened to the interview. Then she pointed out that it is easier for her and me to believe in Coleman because we have seen what it is like to spend years on meds but also know what it is like to now be med-free. Most people on this forum can only compare pre-medicated and medicated states. She added that it must be "horrible" to be told you could have recovered after years of committing yourself to drug therapy.

My older daughter commented that the moment people are told they could recover, when they 'know' they can't, it probably makes them feel that their claim to a dx is not being taken seriously in the first place. She also feels that falling into the neurologist's trap of going for L-dopa pre-empts an opportunity of recovery.

The buyer of any service must beware; I don't think that applies to Coleman over anyone else. The fact that he hasn't been endorsed by the Australian PD Association would not discourage me one bit. Such associations have to work closely with the neurological and pharmaceutical communities.

When a critical mass of people recover their health and some courageous neurologist publishes a journal article about the scale and quality of the iatrogenic effects of PD meds, then there will be a flood of law suits. That, and the observations of my children above, are the reasons you will not see PD associations rush to advocate for the kind of approach Coleman is outlining. Very often they depend on the support, financial and otherwise, of neurology departments and pharmaceutical companies, to endorse and fund their out-reach services, conferences, training of personnel, online Q & A services, privileging access to DBS programmes and so on. They are not going to rock that boat.

At 14 years after tremors and rigidity and loss of strength started my unmedicated symptoms started looking very much like MSA and were escalating much faster then progression of the initial sx . I had an extreme frozen shoullder and couldn't drive, or barely feed myself. Whhen I decided that I hhad little left to lose I started low dose of sinemet which i am still experiencing new improvements on 2 years later however i cut back my dosage at every opportunity from a max of 4 tabs per/day down to 1 or 2 on really good days . The med has given me back my life.

i thank god for the people who have recovered and i have met onne myself-these folks are bridge builders nno matter what brrand of pdism they recoverred from. i have heard that coleman worked at a copper mine but this is herresay hhowever i wouldd think acute manganese poisoning or lymes disease may be less complicated than idiopathic parkinsons. never underestimate the power of beliefs...positive and negative. one that i am reflecting on now is my belief that there are no easy fixes for me. iis tthat true? NO one can actually KNOW %100 that it iss true! yet my subconscious seems to hang onto it. so now the work is exploring the fears that feed the belief and surrendering those fears to a higher power because like poseidon told odysseus ...we are NOTHING without grace. sorry the typos

Moondaughter,

You are putting up a heroic battle and I applaud you. I send you my very best wishes for symptom relief and recovery. Belief has so much to do with how we become ill and the extent to which we recover. And negative beliefs are very difficult to manipulate.

Would it be possible to speak a little more of what you know of the person you met who has recovered, without breach of confidentiality of course.

what's the connection?
 

jinglebelle sent me a 3 word poem and i was to try to figure it out. i had company from texas and was going to think about it after she left this morning because i couldn't see it at first.

it was a thoughtful "stump".

jinglebelle emailed her thoughts and they are applicable in this thread i think. i'll give you an hour and then share what it means to jinglebelle. if you come up with something don't be shy - post it. and remember, it does have a connection to this thread.

how are these connected?

scientific

placebo

bumblebee

answer [april's view, there could be different ones] will be posted at 6:30 pm if i remember. i'd say there is a 50/50 chance i will remember to do it on time. it's actually a brilliant connection.

I'll take a stab
 

Scientific - a supposed truth that may not be
Placebo - a deliberate falsehood told as truth
Bumblebee - an observable truth that cannot be.


Which is Mr. Coleman? Probably a placebo

Am I close?

close to jinglebelle
 

Pam,

you are not incorrect. i should have said she wrote this before I read the thread. But i didn't ask her if she had based it on this thread or even if she read the thread. jinglebell will probably answer that. So Mr. Coleman may not be involved. i looked at it as a coincidence - a good one. i asked her permission to use it because it seemed so appropro.

Can you explain what you mean by the bumblebee being an observable truth that cannot be?

that sounds close to jinglebelles thoughts. [bumblebee]

let me add
 

that this is about the entire situation , not the coleman interview in particular, altho i did not ask jinglebelle if the interview inspired it. so think in terms of the whole treatment dev. situation.

i'm sure you will see it once explained but you have to be acquainted a little with bumblebees. there is no wrong answer. you were close tho if i understood you about bumblebees Pam.

I have always heard that aerodynamically a bumblebee is incapable of flight and yet….

I don’t even know if it’s actually true. When I was a child they told us that running water would purify itself in 100 feet. Hmmm.

that's right pam now link it all ?
 

source for pam's response and last hint:

http://www.bumblebee.org/faq.htm#Cantfly

http://www.maa.org/mathland/mathtrek_09_13_04.html

Science is what we get when we prove the answer
Placebo is what we get when we take someone else's word for the answer
Bumblebee is what we get when we're too dumb to figure out the answer

Now you have to tell. i've got nothing else.

ok here is jinglebelle's intent
 

Reality?

scientific
placebo
bumblebee

incidentally - scientifically - bumblebees can't fly. but they do.
scientifically placebos don't prove whether a drug works or not
they just prove that some people have within themselves to make
healing take place. Placebos can't heal. but they do.
and science? what is it? proof? maybe? but proof can be
manipulated for monitary gain and still be blanketed in an
official mumbojumbo "doctor speak" stated as scientific proof.
great, when it works, destroying, when it hurts, "evil, when it could heal
but instead, watches the caged - trade pain for addiction."


=====
i think we are all on the same path. i didn't know about the bumblebees so i would not have figured it out. i see many variations on this same theme but mostly i see that none of them are what they are designed to be. so anything is possible. scientific is designed to prove but it doesn't/placebo is not supposed to work but it does.

We are very open minded and tolerant of alternative treatments but this forum would not tolerate it 10 yrs. ago. i've learned to be open to whatever is reported and will say i feel better than i have in a while. people say i look calm and they can't tell. But just spend 5 min and you know something is off.

Point is, it's not over till the last lady sings...don't know where they got that original saying but it isn't very nice. i don't know how to be on one side or another in this unknown situation but looking at the history should help. if mr. coleman won't share his information, he needs to provide proof that it has worked somehow. i can't help but wonder where these people are. it's understandable that curing pd isn't happening with most of us.

But who am i to say it isn't true? i think a cure will be announced in a big way and was disappointed to hear that some pretty big claims have been proven to be inconclusive and downright untrue, like global warning being our fault or even that it is happening and bad data about vaccines that has led to the appearance of measles in the UK. ..lindy is that true?

ok it went together and i find jingle's poetry to be a challenge but don't get it very often without her help. Thanks for going along with it Pam.

We should do this more often.
:grouphug:

reply from jingle
 

Very interesting! I really enjoyed reading the discussion, Paula's posts
the responses to them and her wrap up about it. I have had PD for
as long as Paula and am experiencing severe symptoms so, I think
about it a lot. But I hadn't read this thread at all when I wrote the
3 word "poem" to enter in to a poetry contest with the prompt
brevity. My enthusiasm about it prompted my sending it to Paula
because I thought she would like it and could relate. A written
response to my poem by the contest originator prompted my "explanation
discussion of it which I posted there & sent to Paula. I agree
with Paula. Maybe my "poem" was a bit sharp around the edges and cryptic but
there are always lots of ways to look at things.
We each have our own.

jingle belle

One thought on Mr. Coleman
 

Who knows if he is a genius or a goat, I think the cure, when it's found, will come about by accident like Viagra. Maybe he has stumbled on to it. I can only imagine the kind of resistance one would encounter making that claim. But if he is indeed a charlatan then for giving desperate people false hope, for promising what he knows is not possible to deliver he should have a special place in hell. That is the kind of despicable act for which there is no excuse. So,l hope for his sake he is the genuine article and we will all soon be benefiting from his discovery.

Murieann,

The Parkinson's organisations do not endorse Mr Coleman and his "pd recovery" on the basis that he has not substantiated nor corroborated the claims.

People with pd know that if they eat a healthy diet, get plenty of good rest and sleep, exercise sensibly and reduce stress levels - they are going to feel a whole lot better - they do not need to pay Mr Coleman for the "secret"

Cate

I've already addressed the issue that Coleman is claiming he can 'cure' anything, so you can let go of that 'special place in hell' for him and reserve it instead for whatever *** invented Mirapexin, cos that guy [I'll take a chance here on it being a guy] has caused more harm than a dozen Colemans ever could.

I don't anticipate a big breakthrough cure in the sense that people are envisaging here. Coleman talks of the 'slow fading away' of symptoms when one radically alters lifestyle and sorts out whatever relational issues one has with oneself, others and the environment. Noone alters their lifestyle overnight, it takes years. Many daily contingencies and pressures on people get in the way of doing so. If your physical capacity is already diminished, then it is a major challenge, as we all know, to consistently shop for, prepare and eat good food. If you can't easily drive because of meds or disability, if you can't carry a family's worth of groceries while you walk home; these things mitigate against lifestyle alteration.

I weighed just under 6 stone [84 lbs?] on meds, suffered severe pain and cold intolerance and found it extremely challenging to nourish myself. It took quite some innovation to get to the point where I am now, off all meds and a healthy 9 stone just 1.5 yrs later. That's the kind of 'path' people need help in establishing. It's not a gee whiz 'cure'. It's not 'replicable' in the scientific sense people understand. It came about as a result of figuring out in my *particular* situation, given all the contingencies of my own unique circumstances, how to order my priorities on a day by day, moment by moment basis, taking account of the needs too of everyone else in my household.

Much more boring stuff than a 'cure'. No-one is going to come and rescue me or anyone else here. But you can be wise in how you elicit support and decide what tasks you choose to put your energy into. It is a matter of constantly making choices and often it is very difficult to know if the ones you are making, about mundane everyday things, are going to further that goal of getting off PD meds or quitting drugs to make you sleep, gaining weight, etc.

Right now it's 8.30 am here. I feel like staying snug under the covers. But I'm going to get up and cook some porridge made from oats. Not my favourite food but I find that if I eat it consistently first thing in the morning I feel a lot better. Then I'm going to do a lot of reading, for a term paper I'm writing. Don't fancy that either. But I know I'll feel a lot better when it's done. I'll enjoy my course, get a qualification, and see my friends in class next week. They're a whole lot of fun. They don't give a damn that I need their help to walk on ice to the classroom or to help me put my coat on. And if I didn't have them, I'd be climbing the walls at home with depression. So, a big thank you to friends, at home and in cyberspace.

I'll leave you with two items pertinent to Paula's post, one on climate-gate and the other on the crooked science of vaccines and autism:

http://www.foxnews.com/scitech/2010/...lobal-warming/

http://www.dailyfinance.com/story/au...aths/19793484/

My encounter with this person began when I had contacted the Parkinsons Recovery Program to find a practitioner of their program. An acupuncturist in my state was referred to me and when I called her she gave me the name of this guy with whom she had worked with. Its been many years since I have spoken with this person so my memory of his symptoms has faded a bit however I remember him telling me how he recalled to me that he would only drive to his treatment (Janice Walton-Hadlocks ' protocol) on back roads. That he drooled so profusely when he would go outside to mow t he lawn (guess he could walk...) he'd wear a towel around his neck. He was taking meds (later JWH renounced using her methods to treat anyone on meds), but he went off of them.

Later I met him at the acupuncturist office where i was getting treatment (and doing quite well ) , At that time he still had a tremor in his right(?) hand but the rest of his sx were gone. Last I heard from him he just bought a motorcycle and new home! He said he had a ways to go on the tremor but everything else was gone.

I only talked with him on the phone a few times and met in person once but i w ent to the same acupuncturist whom i have a deep and abiding respect for. He had no agenda to prove anything to anyone and at first was willing to share his story buut after being deluged with requests he felt inclined to just move forward - why set himself up for an onslaught...and it was an onslaught including hundreds of emails - i think he believed healing is an individual journey and unique to each individual. i remember him telling me that financial well being was possible too - he had a glint in his eye -i assumed that he was suggesting that welll being (of all kinds) is first and foremost an emotional journey....this is why healing is so individual because how we manage our thoughts and reactions in our life cocreates the template from which we experience our world. not to say that we are in control - this is a discussion about fate and destiny - how we are and are not in control!

Our acupuncturist treated many many pders without achieving desired results. I remember my impression of howhe had recounted to me that his symptoms progressed really fast after onset and i wonder if this could be an indicator of a more acute pd condition - acute conditions may be more lethal but also may reverse more quickly(with the bullseye treatment) is my theory.

I called him over a span of maybe 3 years....he was continuing to improve last i spoke with him...8 years ago(?).

I have had my "go'" with some pretty unconventional treatment. I worked with this one guy who in most peoples eyes would have invented charlatanism! but, ya know....to this day I wonder what theimpact of his treatment was if any....(were my improvements placebo?)I was DRIVEN - looking for new and old science (raised in a family where keeping an open mind was encouraged). the pd sx were quite malleable for me for a long time - why take a powerful drug for a tremor, some bradykinesia and cogwheeling arm?

for the first decade and a couple years more I travelled tens of thousands of miles for various treatments. And they helped - my condition plummeted after my husband suffered a stroke and req uired intense full time caregiving which I am still doing however he has improved a LOT. and I can attest to how after his stroke he almost died from taking a huge cocktail of drugs and slowly through time has regained his health after going off all but a blood thinner and muscle relaxant.

so thats my story and I'm stickin to it....:)

I just wanted to add my "two cents" to this:

I keep hearing and repeating myself, that we want a cure, we want
not to have to deal with these horrible side effects, and symptoms.

And the things that seem to help th most with all this are most
consistantly for the most number of people are very basic.

laugh a lot, love a lot, pursue your curiosity by growing as an
individual and being a better person. learn something new daily.
eat healthy, get as much exercise as you can. drink lots of water.
breathe fresh air deeply. grow in your faith, forgive others and
yourself, find some way to connect, touch or observe children
to renew your spirit, push your limits to create something
uniquely yours such as sculpture, pottery, painting, gardening,
writing, whatever your talent is or find your talent & explore it.
take charge of you own health. Keep learning about clinical
trials, others experiences who were successful, other doctors,
you are your own best advocate, so be it. and Never GIve Up.

Moondaughter,

That's an incredible story and thank you for coming back with a reply to my question. It sounds like you were making a lot of progress in your own recovery when the competing needs of your partner in an extreme situation mitigated against the self-care you required. What a sacrifice to be called upon to make. And yet we are all in this dilemma to a greater or lesser extent, struggling to balance self-care with the care of others. That's the crux of the matter, as far as I am concerned. Resources and capacities are always limited. More than one family member may be ill. Two breadwinners may be felled at the same time. Children have to be put through education. Mortgages have to be serviced. Elderly parents looked after.

The story of your friend who recovered, seems to bear out my point about the need to get off the PD radar if you want to stay well. Another thing that occurs to me is that the level of self-care involved in order to recover, requires a diversion of energy away from the pursuit of holding down a job in order to pursue dietary, exercise and physio regimes. Many people get caught up in the bind and circular logic of going on PD meds in order to keep a job so that one can hold onto job-related health insurance in order to pay for those same meds, not to mention simply needing to earn a living and be part of public life.

People often argue that alternative remedies to drugs don't work, but this is an unfair comparison. Health insurance rarely covers non-drug remedies to the same extent as drug remedies. I find a once a week massage hugely beneficial. What might I be like if I could have it 3 times a week, 52 weeks a year? We will never know, because a clinical trial for such would never be funded and my health insurance covers half the cost of ten physio appts per year. My national health system will cover 100% of the cost of the drugs I don't want to take. I spoke to a GP with PD once who said the real cost of his drugs to the State came to 186,000 euro just for the year before his DBS which then cost about 50,000. I think the State should risk some money on alternative paths to recovery.

It is quite possible that some of Coleman's people who have recovered, or others around the world, retain a low profile because the time, effort and expense they had to invest in repairing themselves, meant they had to give up jobs and go on Disability. Once recovered, they may not want to be undiagnosed for fear that their symptoms will return and then they are viewed as disingenuous malingerers by social welfare systems that do not comprehend such a trajectory. You cannot go on and off Disability, willy nilly, for 'incurable' diseases. Coleman might love to put his recovered patients on display, but maybe this would not be in their interests?

All journeys to recovery are individual, as Moondaughter's stories about herself, her partner and her friend with PD so beautifully illustrate. Yet it seems that there is one big fork in the road to recovery for a lot of people:

a) strive to maintain a job or career [usually requires the taking of meds], but only buys a few more years of employment at best, or,

b) take time out, get off the treadmill, suffer financial impoverishment, but retain some autonomy over the decision to medicate and hopefully buy time to bootstrap oneself out of the PD state before one is forced to go down the drug route - but you better make very good use of this time to sort out your problems.

One size does not fit all.........
 

This is such an interesting thread, and it does reveal some of the complexities of why people make the decisions that they take. And how and why they are influenced in one direction or another.

I too would ascribe a lot of 'health' to the advice of Jinglebelle, the things she describes are our protection, mentally and emotionally, from dis-ease, and possibly in some cases physically too, many of us can override PD when we are absorbed in doing things we love.

On the other hand there is the very real issue posed by Muireann, that means that there is a small window for some us to regain a good measure of health, but to do that we may have to opt out of jobs, homes etc or hide how we have achieved it by not being able to appear to be well.

On meds or off the dilemmas are still there. If you attain an optimal wellness, using whatever means you have at your disposal, it does not means you do not have PD, just that you have worked very hard to achieve that wellness, and it comes at the price of other things, perhaps your job, or maybe the type of work you once did and were an expert in, or perhaps even you might need to leave a destructive relationship, that creates a situation where you are unable to make changes that will give you that wellness.

But to do any of those things they have to be possible for you.... Mostly the biggest barrier for ANYONE, not just those with PD, to making lifestyle changes for health reasons, is the economics. An example of this is the person who has a desk job, and a long term condition, he/she knows that the work they are doing brings a stasis to their life that is damaging and not heath giving. To pursue a life that is more healthy is also not an option, or not while in work, because to turn over the amount of work needed to support oneself is not possible.

In any country with health/disability provision, this is a dilemma, because going onto any form of disability means that you have to be more disabled, not less. And you still have the condition, and you are still less functional than you should be...... In those countries where there is no provision, either family becomes responsible for you, or you are wealthy enough to manage, or you are quite literally on the scrapheap....

I do not hear in this thread of people being 'cured'. It seems they are simply less un-well than they would have been. And it has been hard work doing it, and requires a dedication to 'self-ish' decision making as opposed to 'self-less'........ and I mean no opprobium at all in that statement.

How many people can actually do this, within their families, their social situations, their economic needs..... I suspect, very few.

But over and above this, making these changes will perhaps work only for some. How many people are there who have tried very hard for a long period of time to do without medication, or even actually without seeking medical help, saying I can deal with this, it's only a shake, or only a fall, or only me being stiff every day, I can manage that. But what about when one side of you makes you fall, is so painful that you cannot focus on the work you do, you cannot raise your arms above your head, or your neck and shoulders are so painful from rigidity and no painkillers even touch it, or you drop things constantly, or drag a leg so badly...... or as in one person I know of, your stoop becomes so pronounced that your upper body is almost parallel to the ground, and it has been a long time since you could see the sky...... PD is no picnic. And it is no pushover.

I met a very young onset person at WPC, who recounted how he had stayed of meds for several years, made that his choice, but said 'in the end you do go onto them, because otherwise you stop functioning in the real world'.

I can only applaud those who have been able to make the transition to not taking meds, and whose lives are better for it. Having looked at what I am like without them, and remembering what I was like prior to taking them, I know that without l-dopa I do not function in the real world. That is my criteria for taking it. And I suspect that many of us have tried doing without, because of side effects, or not feeling 'like myself'. I have seen unmedicated PD, it is not nice.

At the end of the day it is not just a choice that doctors impose on you. It is a personal decision. I would hope that no-one is encouraged to take the potent meds we have to live with when in the very early stages. And that they be encouraged to try anything that helps, and to find out everything they can about improving their self in their own way.... for absolutely as long as possible. And that everyone is told that the drugs are potent, have many side-effects, and are not just told, as I was that it is a wholly treatable disease....

I am sure about this though, one size does not fit all, and what works for one may not be helpful at all to another.... all our stories are useful in helping those new to the uncertainties of PD in making decisions that are right for them. There are millions of people with PD, many of them do not have a choice of even getting NEAR medication. They have no way of changing their lives.... that is the real dilemma

a wolf story....
 

Yes, and yes and yes! We can't just isolate our physical well being to our body. The whole of our life is a reflection of our health. thank you so much Muireanne...you .....see me.

I too have been thinking how rich it would be if even a small part of funds spent on research for a cure be funneled towards complimentary and integrative treatments. Just think about how if the focus of the research community became process rather than outcome oriented would create a paradigm shift in health care. We would become infinitely more humane and human.


Edgar Cayce suggested to the PWP that he saw to get massage (amongst other things) daily! He viewed this condition as an imbalance in circulation between the parasympathetic and sympathetic nervous system. Anything that gets us out of a reactive mode.


http://www.youtube.com/watch?v=4GC1Sw__ooE

Thanks Muiranne for your thoughtful insights.
:winky:

My two cents
 

What happens when a system is stressed beyond its ability to right itself? When the wobble becomes a crash? The stretch becomes a rip? The bend a break?

What happens when a lifetime of striving becomes a clear miscalculation of our abilities? When an unexpected stress on a life already stretched too taughtly snaps a string?

If I may paraphrase, civilizations don't end with a great crash but rather with a quiet whimper. I don't know if that is true or not, but it is often the way for individuals. Take a minute and look at us with new eyes. We are different in subtle ways. We have talked about the Parkinson's personality. We have discussed how often we have been the ones that carried the other. That got things done. That sacrificed self for other.

What happens when we finally hit that wall? When the rubber band finally snaps? When we realize that there is no one to save us as we saved others? Not because they don't want to (although sometimes so), but because we can't be saved from our own selves? You save me today and I guarantee you that I will take your investment and "waste" it saving someone else. Hell, I can't even type it without quotes.

We are, each in our own way, pathological Saviors. We carry our weight and always some extra. If the train runs on time, you can bet that one of us saw to it that the clock was set correctly.

That is all very admirable and I am proud to be in your company. I can't imagine any other way to be. But this way of being has a cost. We hit that wall and then try to clean up the mess, for crying out loud. But we don't cry out. Except maybe here among our own kind.

I think Coleman recognizes this. It has been awhile since I looked in, but as I remember the people on his site had an upbeat vibe. If it turns out that the box he offered proved empty, he isn't going any deeper into hell than the guys making Sinemet.

He just might be onto something. He may not even know it. But to "cure" ourselves, one of the first steps has to be to reinvent ourselves. To learn that it is OK to be a little selfish. PD is not a disease, but rather a state of being that has taxed us beyond the limits of our powers to right ourselves.

pd cure pronounced a miracle
 

Carey posted about the beautification of Pope John Paul for curing a nun with early onset. She was well for a few years [i think -have link] and then is rumored to be ill again. So they prayed for the deceased John Paul to intervene and is now well again.

I"m not saying it didn't happen.
I'm saying it isn't proven until she never gets ill again.
I do wonder how knowledgeable the nun is about her own illlness.
There is no remission in parkinson's that i know of - but there is a strong placebo effect.
This could be a placebo altho it took a couple of months post praying for her to be healed......again.

A point that is emerging from this is you need a miracle to cure Parkinson's.

http://www.guardian.co.uk/world/2010...parkinsons-ill

http://www.dailymail.co.uk/news/arti...s-miracle.html

i guess i'm saying
 

...that i don't quite know how much i should trust the pope. oh dear. we need many more details.

Lindy,

I totally agree with your comment on economics being the bottom line for most people in deciding on how they tackle this problem of recovery, both in terms of sourcing their preferred choice of treatment and eliminating stressors in their lives. But it is also very much a case of recognising, very early on, when you need to take drastic action in order to save your life.

In this vein, sometimes I get inspiration in odd places. Here is a link to an interview with Aron Ralston, the climber who is the subject of the movie '127 Hours'. He had a climbing accident in a remote place and his arm became trapped under a boulder. He says he realised early on that in order to break free and save his life, he would have to amputate his own arm. It took him 127 hours to work up the courage to do so and an hour to carry out the necessary deed. See discussion:

http://www.wideworldmag.com/features...f-aron-ralston

In fact, it was at the point of reading a similar survival story, of the survivors of the plane crash in the Andes many years ago, the plane carrying the Uruguyan football team, that I located my own sense of determination, to make it a goal to achieve the impossible. I was in despair when I happened to turn on the radio and there was Nando Parrado speaking about what happened to him. See link:

http://en.wikipedia.org/wiki/Miracle...Long_Trek_Home

These two accounts are not just of surviving, but of going on to thrive and flourish. I think that's what you have to aim for. There are many little details in both stories that can provide pointers as to how to maintain motivation towards action.

They illustrate the difference, for me, between 'belief' and 'wishful thinking'. There's no point in praying to God that you'll win the lotto, if you haven't even bought a lottery ticket. Even God likes to appear rational. Beliefs are relevant, to the extent that they motivate and propel us towards action, hopefully in a positively productive manner.

Muireann posted:

a) strive to maintain a job or career [usually requires the taking of meds], but only buys a few more years of employment at best, or,

b) take time out, get off the treadmill, suffer financial impoverishment, but retain some autonomy over the decision to medicate and hopefully buy time to bootstrap oneself out of the PD state before one is forced to go down the drug route - but you better make very good use of this time to sort out your problems.

Just wanted to say that I think that is a very good statement of the basic dilemma many of us face. I know I did. I am happy to find myself in slot B. Life is a struggle physically and financially, but I feel more in control and free to take care of myself without the pressure of work.

Paula - who knows what miracle was wrought with the Pope and the nun - clearly something happened. I think we should plan a pilgrimage to France and find out!

Accept or fight, same coin different sides....
 

That 'struggle more physically and financially' is also one of the things that limits choice for different forms of treatment - unless you have invested wisely in good friendships and are able to trade 'skills' it may be an impossibility to access daily massage, or physical therapy, or things like classes in yoga, tai chi etc. the wherewithal may simply not be there......

There are aspects taking charge of one's condition, or rather, being encouraged to do so that can make me uncomfortable. The notion that dis-ease is about an individual having not done the right things in their life, and being able to 'cure' their self is great when it works, and perhaps some do keep the faith, and find they are improved beyond belief, but that is not always so.

A dear friend, in her last two years of cancer which she had fought valiantly, was persuaded that she could 'cure' herself if she did the right things; a mother of young children she was desperate for a cure, and went a very long way down this route. With a lot of effort, hope, and help from family and friends. Following a visit to her therapist she was injured badly when a car collided with hers on his driveway. He neither came out to see how she was, or contacted her to enquire how she was, and in the weeks that followed distanced himself from her completely. She was found on x-ray to have developed metastases in her bones, and the ones that were broken quickly became a focus of the cancer, she never recovered.

It made me think a heck of a lot about the complexities of health, wellness, and disease. Some who had faith in the therapies and the therapist said perhaps she did not have enough faith...... I thought she had bucket loads, she fought all the way.... Did it give her hope for a while, yes, did it cure her, no.

We are not always the authors of our fate. There would be no such thing as doctors if it were not so......

whatever works
 

Lindy - so true. We all have our individual stories. I have given up and abandoned a lot to achieve a place of relative peace. But -- I still turn towards doctors. For the first time in more than a decade I had a complete medical exam with a primary care physician, not a neuro - just this week. Turns out my vitamin D level is 7 - incredible! - the usual "low" is 10-12 - so I'm off the charts low. I am so excited to start building my supply, to see if it will improve, well, everything! So while I believe that attitude, open mind, experimentation are a huge part of living with PD, I also have faith in the science. Not mutually exclusive; just well rounded. I want to be better - I BELIEVE I can be better - I will listen to everyone; exclude what sounds wrong; include what seems right - after all, we are only trying to feel better - and, right now, our docs can do no better. I am ready to pray at the shrine of the French nun and endure the exercise while keeping my sinemet, requip and amantadine at a minimum - but not giving up on them altogether.

No one - NO ONE - truly understands PD. Not your doctor, nor any scientist. They are working hard to do so - I have absolute faith in that - but until then (the Fox PPMI biomarker study is crucial), I have just as much faith in myself.

pilgrimage
 

my husband is making his second frip to Israel at the end of the month. Prayer requests are accepted. He takes a backpack and lives on dates and almonds, Last year he didn't even take a jacket but this year he is staying in a hotel and renting a car. he prays at the wall. i pray he comes back alive.

a trek to france would be fantastic. i can get companion passes on delta that would be cheap but we have to fly standby.

I think the placebo effect is the tip of the iceberg of what we can do with faith and obedience. believe it and receive it. i do not like to be judged and am very disgusted when people are made to feel responsible for their misfortunes with health.

nevetheless, miracles are hard to believe unless you are involved in some way.

Dear Paula
 

I believe miracles happen all the time. scr.. the science which claims all the truth while in fact it only scratches the mountain of knowledge.
In reality we come and pass our life on earth not knowing why and we should be content that we are part of this mysterious miracle. :)
cheers
Imad

Sister Marie Simon-Pierre
 

So, let's head for Aix en Provence

http://www.catholicnewsagency.com/ne...ss_conference/

imad
 

We could possibly create the positive vibes that can help us to feel better and accept each other's spiritual inner being. where 2 or more are gathered....is all it takes. when i read encouraging posts like yours it just about overflows. we have power to self heal.

But you have to be exercising...it's part of the whole thing, whatever that thing is. it just makes us energetic enough to pusure other positive directions.

i have heard people say that when you are having misfortune, which some would define living life with pd is a lifetime of misfortune, you are being tested because u are at a high point. PD hasn't defeated our spirits.... we must never let that happen.

Right now we have several posters who are exploring other paths. This energy needs to be harnassed and made to work for us all.

I will stop there but i like your attitude Imad, you are open minded to anything - i believe we have to be tolerant. most religions have a similar scenario for the future, and none of them say it's not far off. Including the Hopi, the Mayans, the Koran, and the Bible....it's the age of miracles. See Brad Meltzer on the History channel. Or is it Brad Metzer.

I am pretty sure there needs to be an abundance of love, not the mushy kind, the kind that has power beause it doesn't give up.

overflowing so i'll stop. you have really encouraged me Imad and others.

adding;

i have a repeating number, it pops up to the point that i noticed it. For example, i was on a plane that was named a 319, not the flight number but plane type. Jaye's spritual advisor years ago told me just to pay attention when it happens. it was british airways from glasgow to London and they had just raised the terror alert color and said an attack was eminent. It was a smooth flight and heathrow was grumpy and hard to get through; but they took out 7 germans with a drone that day who were involved. so i am going to post pertinent 3:19s in the bible and see if any strike a chord. I hope others can post for encouragemnet, not proselytizing, just for wisdom and good quotes from where you get encouragement. let's see what positve energy can do.

I'm pretty hopeless. give me a thought and i have to offer action.

Zephaniah 3:19
"behold at that time I will undo all that afflict thee:and i will save her that halteth, and gather her that was driven out; and I will get them praise and fame in every land where they have been put to shame."
===

we shall overcome...p