[Muireann]

http://www.blogtalkradio.com/parkins...akin-to-awaken

[Sasha]

I'm never too sure about recovey, but I don't rule it out. The exercise and meditation I'm going to look into. I need something new to try after recent setbacks...

[xaxa]

I don't get it. All I have to do to cure myself of PD is to think positive??? Sweet!

[villiers]

not only positive thinking but 3 hours per day of QuiGong practice......
Howard Schifke recovered from PD through QuiGpng also:

http://www.fightingparkinsonsdrugfre...-for-recovery/

[lurkingforacure]

Originally Posted by villiers

not only positive thinking but 3 hours per day of QuiGong practice......
Howard Schifke recovered from PD through QuiGpng also:

http://www.fightingparkinsonsdrugfre...-for-recovery/

I am thrilled he feels better and totally believe his program helps, BUT I couldn't help but notice his fingers still tremor at the beginning of the videos, when he puts his hands at rest, either hanging down at this side when standing or on his knees when sitting, the fingers are moving and it does not look like it is on purpose. Also, he was only dx'd in 2009, barely two years ago. I wonder about the time frame.

I just don't know if you can really say he is 100% symptom free, because of those finger movements in the videos, they sure look like PD tremors to me.

The bottom line, though, I guess, is that if he feels better, then who cares? And if his program helps others and they are willing to pay for his coaching services offered on his website, fine. It's not like we have so many other choices out there.

[moondaughter]

The bottom line, though, I guess, is that if he feels better, then who cares? And if his program helps others and they are willing to pay for his coaching services offered on his website, fine. It's not like we have so many other choices out there.[/QUOTE]

Yes. Long time ago I did a search on the internet for pd and the etheric template and came up with RRogers website(i don't even remember the url but this was long before the birth of RR "Parkinsons Recovery" and was a website focused on other work). There was channelled information on pd that made sense...basically what it said was that pd is first and foremost a first chakra issue - that we are like an electrical chord that is unplugged..no ground. At the time I had a friend who led a pd support group in Portland who was interested inthis info i found so he contacted Robert Rogers and eventually the "Parkinsons Energy Project" was born. Robert and two other practitioners of cranial sacral therapists also trained at Barbara Brennans school gave 3 on one cranial treatments to everyone in our group for free once/month for 6 (?) months. They were awesome treatments-6 hands working on you at once is a wonderful experience. I think most everyone benefited however i will say that Robert in his enthusiasm did tend to assume "recovery". Through time I have come to think that "recovery" to him means healing in a broader perspective where possibly physical pd sx are the last to disappear and healing is a day to day process where we learn to love and be loved a little more each day. its a different paradigm to be process rather than outcome referenced. I was suprised that no mention was ever made of the original channelled info which was what drew me to him in the first place.

so i think he is a tireless researcher who truly has very good intentions - but keep in mind that recovery engenders much more than a tremor that has stopped and all other physical sx.

so now you know ....some more of the story.

md

[d0gma]

As I suspect many are. I can't be the only one. Dystonia is the third most common movement disorder. It is a primary symptom of over 50 disorders. Bradykinesia is a primary symptom of some 40 disorders or drug reactions, tremors have as many causes and types as there are imaginations to fill them it seems. Yet it seems the rubber stamp of PD diagnosis and the first rx for sinemet are written awfully fast for a disease (PD) with no definitive means of diagnosis (except after death). Even scans of any type only show areas of activity during certain stimuli-these are not uniquely diagnostic for PD. The resolution isn't there to see any physical abnormality-only the ability to say it looks like this scan from another person with this problem and has the same active areas during these stimuli.

Reading this forum leads me to believe there are many types of PD and many reactions to PD meds that make us all very unique. So again the rubber stamp treatment, application of scans, and diagnosis is inappropriate.

I do believe people can recover from being misdiagnosed. That is what I am currently trying to do and I am more disabled than when I had PD. The good news is that this is temporary. At least I hope, and think my brain is rediscovering how to make dopamine given some dyskinesias on much lower doses. That's part of how I judge timing to further reduce. One doc tells me a year or more to get off and another swears 1 week will do it. Recovery implies some kind of magic and serves to make many people dismiss it out of hand.

I'm a numbers kinda person though and I can't believe all those docs are right and never change diagnoses...I just don't BUY IT! That and I can't find a single doc with ANY experience getting people off sinemet. Not a single one of all the calls and contacts has returned a call or said yes yet. I'm in some kind of purgatory waiting for something to help.

The main reason I was told I had PD was my response to the drugs. That is the supposed big diagnostic tool. If that method takes a person w/o PD and makes them have either drug inflicted PD or mimic PD then the process is wrong. ALL of my symptoms were caused by sinemet including dystonia which I never had before L-dopa. So do I believe PD can be cured spontaneously? I'm not sure, I've seen my brother's RA go into remission and seen friends survive cancer. I beat cancer they said would have killed me; my dad beat cancer they said was incurable so I don't doubt the body and brain are capable of incredible things. Sometimes the right doc is all we need.

I think more people should be seen off meds (IF AND ONLY IF deemed safe by their doctor) to see if like me they don't show PD symptoms and have not progressed. I think we might have more "cures." I have a family friend also going thru a divorce that was "cured" of MS after her divorce. She never had it either. Stress is a very powerful demon.

I believe that statistically based only on the numbers above that 75% or more may be misdiagnosed and addicted to sinemet and/or inappropriately prescribed or prescribed too soon. It is a drug of last resort since it has a very short effective life span. The side effects are not L-dopa responsive and become permanent.

I have a big problem with docs prescribing it to younger and younger people. My dystonia from sinemet was so severe I couldn't move and was in more pain than I thought possible at a whopping dosage of 2300-2500 mg per day (which was by ALL my docs accounts grossly over prescribed for someone on it for only 5 years) for someone that could pass for normal most of the time. Now I'm on 600 a day and still decreasing and the dystonia is gone.

This is **** to get off of and very dangerous. I would much rather be comfortable than suffering for 7 months now of agonizing cramps, muscle tears, exacerbated tremor, chronic fatigue, confusion, inability to concentrate or carry through with even simple logic. You have to be VERY motivated to go through this. I don't know how much longer. One doc says 1-2 years and another says a week. I think somewhere in between is a better answer.

[soccertese]

DOGMA,
What's your point? my guess is 99% of the people reading this board are taking sinemet within the recommended guidelines and most were not started with sinemet.
you criticize sinemet and it seems pd healthcare in general but that says to me pd is a complicated/difficult disease to treat as are all neurological diseases. you have the right to state your opinion of course. i disagree with your conclusions and after seeing you repeatedly repeat them felt the need to say so.

i can understand how unhappy you are with your doctor who overprescribed/misdiagnosed your pd but aren't you basically saying get a 2nd/3rd opinion? for someone as well informed as you are, you are a wealth of statistics, how in the world did you go along with taking those overdosages? have you reported this doctor to the state medical board?

[d0gma]

I'm not criticizing sinemet at all I'm not sure where you got that idea. I didn't say anything bad about it. You're guessing that most people here didn't start with sinemet is wrong. Historic posts I read indicate many of us did start right away. I received great pressure to start immediately at age 41. http://neurotalk.psychcentral.com/sh...highlight=wait

As I explained I went a long with a lot due to an abusive marriage I tried too long to save. The incredible stress made a few pills here or there secondary to trying to get a separation and keep my insurance since I'm also disabled due to spinal injuries. I wasn't looking for sympathy so I didn't elaborate. I had to function to get out and I lost my primary caretaker.

I wasn't started with sinemet either so I don't see the relevance. I waited 6 years. Had a diminished sense of smell, micrographia, and very small adrenaline based tremor later (treated very well with inderal). I was taking sinemet within more than one doctor's guidelines. I was pressured to start sinemet and have DBS within a month to "protect" me. I declined sinemet until I got scared and beaten by ex and had to get out immed.

MJFFPD agrees with my conclusion. The Michael J Fox Foundation for PD Reasearch says that about 25% of PD diagnoses are WRONG. http://www.fountia.com/conditions-mi...insons-disease. That's 200,000 people in the US with possibly no or benign disorders and many with dangerous orders better treated other ways. UK data supports this with up to half the 25% having essential tremor (NOT PD) and 16% having Alzheimer's. Then there are TIA's, MS, Strokes, toxin exposure all treated with very different meds and very possibly recoverable if treated correctly or fatal if not treated correctly. http://www.livestrong.com/article/20...as-parkinsons/

Then there is NPH
SYMPTOMS: The symptoms of NPH include gait disturbances ranging from a mild imbalance to an inability to walk or stand; mild dementia that includes loss of interest in daily activities and forgetfulness; and impairment in bladder control, ranging from urinary frequency and urgency to total loss of bladder control. (SOURCE: Barrow Neurological Institute).

Also Fragile X, Lyme www.endowmentmed.org/pdf/updatelyme.pdf, Alzheimer's and Lewy Body http://www.ncbi.nlm.nih.gov/pubmed/20963199, Post here from Stitcher http://neurotalk.psychcentral.com/thread16915.html,

The American Academy of Neurology says agrees with the MJFFPR, 200,000 of the 1million PD suffers are mis-diagnosed. http://legacy.signonsandiego.com/new...1n3parkin.html

My criticism is that the philosophy for prescribing is flawed since the medical community admits this is a disease of exclusion (as discussed here on forum) yet it is rarely excluded. People aren't seen by their docs off meds. Once I was diagnosed I never saw a single doc off meds until the one that said I didn't have PD. Five more docs now back him up. I can't find a single doctor that knows how to get people off sinemet despite and extensive search.

The Cleveland Clinic which you discuss and Wilfrid Laurier University studies indicate sinemet and agonists are being prescribed too early since exercise works. You agree according to your post. See posts here about PD being a disease of exclusion http://neurotalk.psychcentral.com/thread114303.html Is anyone in a hurry to develop non-l-dopa responsive side effects like diskinesia, tardive dystonia, tardive dyskinesia (most of which become permanent).

John's Hopkins says Parkinson's Diagnosed:
"Persons are diagnosed based on the symptoms they have and the physical examination. There are no standard laboratory tests available although testing is often done to exclude other similar diseases. A significant improvement in symptoms related to taking the medication carbidopa/levodopa is helpful in making the diagnosis since all patients with Parkinson's Disease respond to this medication." A self-fulfilling PD diagnosis prophecy with no exclusionary process. Has anyone seen a doc off meds regularly to evaluate their progression or lack of?

EVERYBODY responds to l-dopa. It is compared in many ways to alcohol addiction or taking ecstasy in the way in which it alters the dopamine receptors in the brain. Studies on ecstasy and alcohol show permanent damage, I doubt many people would choose this when taking l-dopa if they didn't need to be. My criticism is for the process of diagnosis and that doctors still don't know how l-dopa works. The diagnostic protocol is 20% wrong agreed by all major sources including the NIH, MJFF, and AAN and other countries. I resent being potentially being brain damaged because only 1 of 13 doctors followed protocol.

I criticize leaving the patient out of the process as in the video "From God to Guide" paula_w posted http://www.youtube.com/watch?v=LnDWt10Maf8 I did get a 2nd 3rd 4th... 12th opinion but only one doctor asked to see me off meds in 10 years and figured it out. Most of the questions I asked about "coincidences" in my own diagnosis were dismissed by my doctors and it turns out I was right.

You asked my point:
1. Symptoms for PD are hallmarks of over 100+ other disorders yet I can't find anyone save for one friend who was dx'd with MS and another diagnosed with Alzheimer's who didn't have it. Both of whom were medicated into having the symptoms of the diseases. Also illustrated in the video I mentioned to paula_w called Under Our Skins where Lyme is being diagnosed as PD and MS and is curable with antibiotics.
2. I count 39 drugs on one web site that cause PD. My medical history can add sinemet to that list.
3. The possible diagnoses are almost uncountable yet PD seems to be what is diagnosed most of the time for any tremor or slowness. 10% of dystonia is thought to be correctly diagnosed http://abcnews.go.com/2020/story?id=124044&page=1,
4. I don't think patients are educated properly about its dangers (NMS can occur spontaneously and it is addictive) and has short effective life 3-5 years, causes harder offs and Dystonia. Evidence in many posts here.
5. Doctors should be looking to patients not the other way around to find a cause/cure.
6. Maybe PD recovery is onto something-there is a cure if you don't have it.
7. Too many patients are married to their diagnosis.
8. Excessive stress can lead to or mimic PD, MS, Alzheimer's etc.
9. Sinemet caused all of my symptoms - should that be ignored?
10. Since finding this out I learned of many people over medicated for Alzheimer’s and many other diseases when they had Lyme, Dystonia, meningitis, stress, and other things http://neurotalk.psychcentral.com/thread151385.html

I hope people play a more active role in their treatment. If only one person finds they are misdiagnosed then I consider that a success. If this is a disease of exclusion why aren't there any exclusions documented?

Sorry I offended you. In my excitement to help what statistically has to be a large number of people I just think patients should play a more central role. This God-like doctor role seems backward to me. I see no need to get mad at someone trying to help. We are all entitled to an opinion without being attacked. I am well aware what living with PD is like. I did it for 10 years. I am also living proof some people should not have to do so. How is anyone able to judge or find wrong anyone else's feelings especially if they are trying to help.

I also still have the side effect of being manic from sinemet and tend to say too much without intending to. I don't like that but right now can't help it. If nothing else offering hope and alternatives seems a productive thing to do. I would rather know if there was a chance in this disease of exclusion for which I can find no docs with any experience taking people off sinemet. (hence no real exclusionary process) Does anyone know anybody that has been excluded?

I am darn lucky I can now take care of my parents when they need it instead of the other way around. My criticism is toward the provably flawed process that statistically 1 in 4 of you is reading has nothing wrong with you and is suffering as I was. Your families also suffer which is what I take greater exception to. I don't like my family suffering.

[soccertese]

if you didn't check the source of the OPINION from the MJFF that 25% of pd cases are misdiagnosed, then you have zero credibility.

so anyone disagreeing with you is "angry"?

i basically don't believe you. why should i, your're totally anonymous and i don't believe a neuro would prescribe that doseage of sinemet, that could be career ending, why take the risk? plus i don't buy that stress somehow kept an intelligent/well informed/internet savvy person like yurself from reading up on any med you might take.

there would be congressional investigations if there was that level of misdiagnosis.
you think MJF would be silent if that were true? it would escape the news services? i don't think so.

did you report this neuroto the state medical board?