Blog about getting off Sinemet
 

This
 

guy lives not far from my place. Soooooo much to read, sooo little time. Thanks Fiona :)

Coleman is a joke
 

Amongst our local parkinsons community.
He should be ashamed of himself but unfortunately he's still touting for business.
He's trying to make money with his "Pathways" program on recovering from P.D. or in his case even better than that, one of the parkinson plus syndromes.
Every now and then his name bobs up and I'm sorry if I come across as rude but the man in my opinion is despicable.

Made it up - thank you and please explain. I'm not saying he's wrong or right - I just don't know...why is he considered a joke and a despicble person? In terms of making money from Parkinson's - face it, everybody else we come in contact with find us a highly lucrative market also, so that alone can't be it...
so is it that people think his methods don't work or wassup?

two-cents worth
 

Welllll...I found the links in this thread interesting and comments were thought provoking. I believe there is a path out of this black hole we have all found ourselves in, and very possibly more than one.

I have yet to meet a person who purposed a solution to any serious/controversial problem who did not come under some criticism or condemnation for what they had to say. Maybe that's why some who do find a non main stream way out don't come back and talk about their experience. Fear of criticism. As for making a few bucks off what you have to offer, we sometimes forget that there are expenses associated with running a website, mailing out info and ones time and energy are also worth something. Sharing for free is a nice concept, but the cost of gas continues to rise.

The closer I look at my PD...the odder everything about me and my life looks. I think we are only incurable if we believe we are incurable.

Hi Fiona and Rosebud,

Coleman has been trying to gain exposure here amongst PWP for a few years now.
When questioned about who made his diagnosis, what medication he took, whether he ever gained relief from it etc he had no comment.
He can't come up with any concrete evidence that he ever had PD let alone (as he claims) a Parkinson Plus syndrome which as we all know has a poorer prognosis than what most of us reading this have.
Anyway just my two cents worth.
I'm normally very cautious about what I print on this site for fear of critiscism but I feel quite strongly about him preying on our diagnosis so if any of you still wish to try his methods go for it.

going off sinemet
 

My strongest advice, is to establish a relationship with your neuro.....where he /she trusts your judgement. i tried with my first neuro of 12 years - he was resistant to that much talk - he was on the clock; then went to one that is always recommended. I come in, he says 'what's new with GDNF?" and we just talk. He trusts me to fine tune my own meds, [modern ones], he doesn't scold me - it's conversational -and he is open to alternatives - especially curcumin at this point in time in his neuro life.

He always says because he is bound to , that i'm the perfect candidate for DBS. At our last appointment, he just pointed both his forefingers to the top of his head and made a funny face.

Anyhow, the point is, it seems to me if one is talking high amounts, a doctor should be available about it.

IMHO, this guy on the blog is charging too much for it to be real, and isn't interested in PD.

paula

managed
 

too squeeze in some research time here. There is nothing from that site we cannot learn about from Neuro Talk, wikapedia, or google. The difference is cost.

Short on specifics. Short on substance. The sugar question....ambiguous....

Short on sound research data neccessary to have me invest in. And I could go on and on. All in all a disapointment.

At the bottom of the page of this URL you will see the cost of his seminars
http://parkinsonsrecovery.com/jumpstart.html

If he had pd would he not want to help others with pd instead of making it into some slick business adventure? Notice the seminar start time at 7 PM the day before. Is that for cocktails? After fighting pd symptoms all day how realistic would this be? I realize what a negative comment I just made...........it is common to have a meet and greet and hand out the agenda the evening prior to the seminar. Send mine to my room please!

How many people with pd can afford this high end stuff. I sent in over $800.00 medical expenses and got reimbursed $242.00. Big whoop. I agree he has valid information but if we dig we can find most his stuff through others and on the Internet.

Thanks for the post Fiona, it is always good to read what is available. If he truly helps even one person with pd that is nothing to be sneered at. The difference between this individual and myself is compassion. If I cured myself of pd I would want to help others by sharing information. The thought of charging for it would not not enter my mind.

Ok, people, finally got a chance to peruse this in a little more detail. I don't know why you guys are so upset. It seems to me that most of the advice is generally in the right direction - true, you could get a lot of it from your own internet research, but a lot of people with PD are totally panicked by their diagnosis, don't have the time or the courage or the knowhow to do that alone, and the encouragment of someone else can be a real support when you're trying to navigate the PD seas. I mean these people offer to research any question you ask them about PD for free - how common is that??

John Coleman - I coulnd't find my way back to the original description about him, but I think he never took PD meds, but people he worked with did, and he seemed to be specific about that. In terms of not revealing whether or not his diagnosis was confirmed, who here has a confirmed diagnosis not just based on ruling other things out and the fact that you respond to PD meds? I never have gotten a firmer answer than that. His book is only $15 or whatever - considering what most of us fork out on CoQ10 alone, hardly very much money.

And the coaching service and seminars - well, yeah, they cost something - but I took a yoga course in the past year in NYC for a few days and that was almost as much. Would you expect your doctor or your masseuse or your trainer at the gym to work for free, assuming one could afford any of these? And none of them are offering to try and guide you towards a recovery from PD. The coaching assistance thing - well, I think that might be very helpful for some people. And the cost - well, if you hired a personal assistant for ten hours weekly at the ridiculous cost of $10 an hour, that would quickly add up, too....which doesn't mean that any of us could afford this. And we can debate the merits of whether or not people should get paid to help others, but can you imagine most of the people you encounter in your doctor's office not getting paid?

I feel that the rage towards this site is a little misplaced. It's not even comparable by any stretch with the profit markup on our medications...and those are keeping us alive but not leading towards a goal of recovery.

I found the advice and thinking on this site rather mild, but acceptable - but perhaps threatening because if people dare talk about recovery, so many of us (and I include myself) are primed to want to see a vivid and sudden transformation, so if it's more long-term and diffuse than that, we say, oh, it doesn't work, and we're angry. But that's because of the shape of our own expectations, and maybe doesn't look at the context in which they offer their perspective. Frankly, I think that ANYONE talking about serious reduction in PD meds is very rare indeed, and that alone makes this interesting. The approach embodied in this website might not be for everybody, but I think they mean very well, and I don't think they're just placating their shareholders in how they have structured their services.