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

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.

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

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.

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.