seeing my neurologist Feb 24, a 50% chance I do not have Parkinson's
Myth #5: The diagnosis of Parkinson’s is always accurate. Unfortunately, the initial diagnosis of Parkinson’s is accurate only 25% of the time; after having the disease for five years, there is still a 50% chance that the diagnosis is wrong; the accuracy approaches 85% only beyond five years.
The more people I meet with Parkinson's the more I realise that 'Parkinson's Disease' can be thought of as a set of symptoms and signs. Everybody seems to have such different presentations. That is why I get concerned by people who advocate a single method for reversing the disease progression. Which disease or condition are we talking about?
Currently there is no diagnostic test. However, if it walks like a duck and quacks like a duck, calling it a duck is not a bad idea. At least other people have an understanding of what that means.
LOL...I agree completely! No diagnostic test etc,,,Every person has 'sympoms' of something or other from the time they are born until the time w have no more use of their earthly body, but what are they all representative of? A whole stream of the same set of 'symptoms' can be equally applied to many different diseases , and often are... Mistaken diagnoses are rife .
Perfect trust needs to be placed in the hands of He who created us.
The VERY best one can do for your health life education and that of your loved ones is to sign up to Green Life Info. and scrutinise with intelligence. You will NOT be sorry!
I had a DATscan it doesn't reveal PD but it is a very useful tool in supporting a diagnosis. Sending all good wishes. CHH
Best wishes for the 24th Feb.
My old consultant didn't rush into an early diagnosis of Parkinson's. I underwent a number of tests and scans, ruling out commonplace causes and rare or obscure causes. These came back negative, thus ending my hopes of having a new disease named after me!
At that point we agreed that I should try some Parkinson's medication. My symptoms improved. As the consultant put it (and i am paraphrasing here not quoting directly) if your symptoms improve when you take Parkinson's medication then it is likely you have Parkinson's.
A 2014 study by the American Academy of Neurology found these results, which back this up.
82% of patients who were responsive to Parkinson's medication did have Parkinson's. When the patient had been treated for 5 years or more this figure rose to 88%.
I agree with the point that there is a clear need for a reliable diagnostic test.
I shall be very interested to know how you get on.
So have you had a DaT scan?
Surely a DaT scan when taken with other physical symptoms gives the answer.
I've read a number of posts by people who are worried or think they have/don't have it but haven't had the scan.
Whilst the scan can't say you definitely have PD it does show whether the brain has been affected in the area that has the dopamine transmitters and this is regarded as supporting a neurologist's diagnosis based on the usual movement disorder symptoms.
In other words if you have the symptoms and a supporting scan you have PD - as I understand it - and I'm a new boy to all this having been initially diagnosed in December after appointment with neurologist and then having had a DaT scan in Jan this year which showed the tails of my tadpoles gone! Whoopee...
Marc
I know 2 people who've had a Parkinson's diagnosis who declined the "Standard Treatment" and instead went for a healthier lifestyle including regular excercise, organic foods, less animal protein and mineral supplements like Magnesium, Lithium Orotate and Boron. One of them was about 15 years ago (he's 75 today) and the other was diagnosed about 10 years ago (he's 68 today) and both are fine with no symptoms. If you ask if both were misdiagnosed, I don't know. I do believe that with proper nutrition, it's possible for the body to heal itself. All you have to do is look at the people of Okinawa Japan. They live MUCH longer than us, yet have around half the level of PD as we do here in the States. The same goes for a pocket of 7th day Adventists who live in Northern California. Due to their healthy lifestyle, they rarely have things like Cancer, PD, Diabetes and many other chronic diseases.
WELL SAID I cannot agree more! When we were born we did not arrive with a medicine kit full of obscene chemicals! There must is a clear message here
Lol, I'm seventh day Adventist & I get critisized a lot because I do not eat pork, or shellfish. In all honesty, I don't eat it because of two reasons, one because when I have I broke out into hives,so I believe I'm allergic & two because as per the bible, it explains the clean & unclean foods. I get a lot of " she doesn't eat pork because of her religion" there is a lot of ignorance going on...
Research the neuro toxin BMAA and how it's biomagnified up the food chain (shellfish) starting at toxic algae.
ethnomedicine.org/neurodege...
They are talking about l-serine slowing the progress but I have since read not to take serine. My dad has Psp. In their tests l-serine taken alongside BMAA resulted in plaques and tangles that were less dense. They didn't test out if l-serine alone is a good idea. Trials with ALS sufferers are underway.
clinicaltrials.gov/ct2/show...
What they think happens is when the amino acid chain is formed the BMAA replaces the serine because they have a similar structure. The first part of the process of making the membranes in the brain/muscles/nerves switches off apoptosis, which is ok if its serine but not if its BMAA.
They are also talking about how BMAA removes zinc from the body and in so doing removes the BMAA also. However zinc toxicity affects the brain badly. They have linked the BMAA to ALS, Psp, ad, PD.
Here's the study.
rspb.royalsocietypublishing...
If anyone is interested in sharing information plz message me.
I would love to see what you guys are finding.
Peace
*I am not a doctor, do your own research and come to your own conclusions*
100% re the last sentence and while you are at it join up with GreenMed Info and learn the trruth you will be SO glad you did!
Thank you and as usual great post I appreciate your information
Mathsman says ''5 years or more, this figure rose to 88%'' but after 5 years, this is when the side effects of the drugs start to appear, dyskinesia for example, which many doctors still see as evidence of worsening P.D. rather than parkinsonism caused by the anti PD meds.
From Senigl
I believe that the 88% figure was based on neuropathological tests after death, rather than the doctors opinions, but i don't disagree with your general point that with PD its hard to see the symptom 'woods' for the side effect 'trees'.
5 years then death? I hope not.
Err?
I wrote " When the patient had been treated for 5 years or more this figure rose to 88%" in one post and then talked about the method by which this figure was confirmed. Nowhere did I say "5 years then death"
Indeed if that were the case my posts would be proof of broadband after death!
I was diagonsed with PD about 13 years ago. I was put on medication 3 times a day.
I had no tremor and didnt feel or look like I had it. My brother and sister both had it and died from complications of PD. I finally went to another Dr. at a bif hospital in Nashville Tn , He had me under go a 3 hour Ct which almost about killed me I thought as I could not stand to be shut in there for 3 hours. His findings was that if I had PD it was very minute. This summer I went to Baltimore to NIH and the specalist there said I did not have PD at all ./ I am off all that medicine as I had begun to imagine things that wasn't true. The medicine also caused me to have impulsive behavior , I had became a shop alcholic. I had no idea why I bought so much things then I read where this medicine cando that to you, This finding was one tha the Dr. said was true.,
NIH thought I t had as slight case of PD but when I went back for the 3rd time they said I did not have one sign of PD. My siblings died from it.I was on the medicine MiRAPEX.
I am completely dumbfounded by all this because the medcing I was given made me so crazy. I feel so much better no that I am of it,
let that be a lesson to you all
There's actually a couple of NIH studies that point out how using the natural herb that they extract L-Dopa from (Mercuna Puriens ... I think) is actually far better with less complications and less side effects than using prescription meds. The problem however is that most doctors will ONLY prescribe synthetic medications. The reason for this isn't because they're better, but only because natural medications cannot be patented. If you can't patent something then you can't have a 7 year monopoly and if you can't have a 7 year monopoly then you can't afford the hundreds of millions it costs to get FDA Approval. In the end, doctors will only prescribe FDA Approved medications.
So what's your diagnosis? What are your symptoms? And what makes your symptoms subside or go away ... How old are you ?
I'm 49 but My Father in Law lives with me, he's 78 years old and was diagnosed with PD about 12 years ago. At first he did as the doctors said taking a bunch of different meds that caused all kinds of side effects and eventually he degenerated to the point to where he had to move in with us about 5 years ago. When he first moved in he was bedridden. Today, he goes jogging with me every morning and goes to the Gym with me every other day. He's stronger than he's been in quite some time and his tremors are very minimal.
We accomplished this be removing all processed foods from his diet, everything is Organic, which means there's no pesticides in our foods. We have a friend who even provides us with raw unpasteurized milk and fresh eggs every few days.
About 2 years ago, he stopped taking all the medications his doctor was prescribing and instead continued giving him daily supplements including Mucuna Pruriens Powder, 5000IU of vitamin D & Ultimate Probiotics (by True Health), Caffeine Free Creatine & Liquid L-Carnitine (by Earth's Creation), Potassium Iodate, Lithium Orotate & Opti-mag (by Vitamin Research), Effervescent NAC and Fermented Cod Liver Oil and finally 20 Raw Bitter Almond seeds spread throughout the day (imported from Eastern Europe)
Personally, I think what has helped him the most is the Mucuna Pruriens and Potassium Iodate, but I also believe that every part of your body needs to be functioning properly in order for you to be healthy, so we try to make sure he gets ALL his supplements every single day.
Hi Royprop. Having read right through this interesting article at 3 o'clock this morning I have the following comments:
I have been accused of many things, including not having idiopathic Pd, having Parkinsonism, claiming to be cured, being against taking medication and generally being a pain in the backside.
I was diagnosed with Pd in 1992, in 1995, in 2005 and most recently in 2015. Every time there was no doubt whatsoever that I do have Pd. So I am well into the 85% range for accuracy.
However, I don't give a dam whether I have idiopathic Pd or Parkinsonism. All I know is that I have been able to show hundreds of PwP's how to walk properly, how to bring a glass to their mouth without spilling anythng and one or two other 'miracles'.
I am going through Austraiia right now, having been to Adelaide, Sydney and now Brisbane. I am off to Hobart, Devonport and Launceston in Tasmania next and will finish up in Melbourne at the end of the month before going to New Zealand in March.
In all these places I have been able to show perfect strangers, whom I have never met, how to overcome many of their Pd problems. Now, either none of us has Pd or some other form of Parkinsonism, about which I could not care a toss. All I know is that I am able to help everybody with Pd who cannot walk properly!
The funny thing is that I don't get paid to do this, and I don't sell snake oil. Yes I have to charge a minimum price for my book, which explains what I do and why. I am unable to find a printer to print it for nothing or courier it or a post office who will deliver it for nothing or some computer geeks who will help me overcome many problems a man of 81 has negotiating this electronic age for no reward. In fact, I can't find anybody to help me show thousands of PwP's how to help themselves overome many common problems encountered wth Pd.
If you had seen a frail little old lady yesterday, who came into the hall shuffling along on the arm of her weary middle aged daughter, and unable to get to a seat without enormous difficulties. She asked me to show her how to walk and even I was reluctant to take this one on. But it has never failed yet and what had I got to lose? So I asked her to show me how far she was able to lift her legs up in front of her, which she was able to do much better than I can, and I asked het to stand up on her toes, which she did very well, and finally I asked her if she were still able to swing her arms as high as possible in front of her, which she did very commendably. Then I asked her why she did not do any of these things when she walked? She could not answer that easy question.
The reason is, because her subconscious brain is unable to communicate with her legs and arms properly. I know that people who have studied the brain will dispute this statement but as a layman, that is the only way I can explain it.
The next thing I did was to ask her to concentrate on placing her weight onto her left leg and then lift her right foot up off the ground and stick it out in front of her as far as she coudand place it firmly on the ground with her toes pointing up in the air. She was able to do this and we then started to walk, just concentrating on placing each foot on the ground with the toes pointing up in the air. Do you know, that she walked up and down that hall with no freezing or faultering. She later walked all the way around my hosts front lawn later yesterday afternoon with noproblems whatsoever. Her middle aged daughter sat crying indoors, out of the Brisbane heat. She could not believe what her mother was doing.
Now if that is snake oil or Scotch mist or any other epithet you can come up with, then you really are bigotted. What I claim is REAL. It may not sit well with people who, for some unknown reason, don't want PwP's to get better and insist that I do not have Pd and don't know what I am talking about, then I am really wasting my time, effort and money. In fact they should lock me up and throw the keys away as I am a danger to shipping.
Instead of criticising what I do, and what I claim to do, why don't you make sure of your facts and come and talk to me?
John.
John, do you keep in contact with those people who recover so quickly?
Hi soup. Yes I do keep regular contact with them, otherwise I would not know how well they are doing. What makes you think they did it "quickly"?
John
You said that you taught a woman to walk at your talk and then again on you hosts lawn.
Hi soup.Yes, she came for a private one-on-one talk.
John
And what about the people who have had a chance to put into action your walking programme from earlier in the tour? Have you been able to follow them up?
Hi Soup. It took me eight years to learn how to reprogram my brain. Maybe other people are cleverer than I, but it would take quite a while to learn howconsciously to control the walking action, and then to get up speed to produce the GDNF, or at least a reasonable quantity of it.
I am not a doctor but I would hazard a guess that whil while they are learning to do all this, they are not continuing to get worse, as they would if they were merely taking paliatiive medication.
Soup, you sound like someone who would do anythng rathe than exercise. I hope you are not. If you just don't believe me, that is your prerogative. What do you stand to gain by putting others off? If they try and fail, what have they lost? It has not cost them anything.. I have not gained anything. What is your problem?
John
Dear John, you know very little about me from my posts.
I am trying to ascertain how you know that your method suits all people. It's not complicated, it's not derogatory, it is an enquiry.
You have been telling people on here about your method for the years that I have been on this forum, you have publicised your writing for that time at least and now you are on a 'grand tour'.
How do you know your method works for everybody that uses it with conviction unless you follow people up - stay in contact with them?
I am seriously pleased it has worked for your condition and would love nothing better than to be able to stop writing on PD forums because you have the answer of how to reverse Parkinson's for all and everybody can be functionally cured. But please, sweeping statements such as this need comprehensive evidence.
Hi Soup. I'm sorry if you read my response as "helping everybody"n fact I say. "Everybody was able to do the walking". That means everybody whom I have shown how to walk, not implying that everybody can do it. I have shown hundreds of people how to walk this way and only one person was unable to do it, because he could not stand on his own two feet. From this, I would have to assume that virtually everybody is able to do this, providing that they are able to stand on their own two feet.
John.
John I believe you have been demonstrating walking technique and how to reverse symptoms for many years now. I wonder if I am right.
so did jesus don't believe you john'
When are you in nz & where are you going to be?
Hi maieboyd. We are going to start in Dunedin and work our way up to Nelson and over to North Island and all the way up to Auckland. We will be in the following places: Dunedin, Timaru, Christchurch, Nelson, Wellington, Kapiti, Hammilton, New Plymouth, Tauranga and Aukland. I hope you can come and listen at one f those places.
John
Do you post vids on YouTube? I would love to see this.
Hi Mndovrmnky. Towards the end of last year Dr Norman Doidge came over to South Africa and together we made a documentary movie on the way I am able to show people how to use their "Conscious Brain" to control their movements. Until this movie has been released for general use, I am not in a position to make one of my own. So when Penguin Books release the movie later this year, I hope, I am under an obligation not to do anything else.
Have you read my book, "Reverse Parkinson's Disease"? It does tell you all about what I have done to successfully reverse most of my movement symptoms and to deal with other non-motor symptoms
.
You can get hold of my book on my website - reverseparkinsons.net. On that website you can also read over 400 articles on dealing with Pd, and what medication I took to help me do that.
John
John, it is good to learn that you are spreading your understanding of increasing mobility internationally. Thanks for never giving up.
It is my understanding that what we used to do unconsiously/automatically and now find difficult because of PD can be re-learned by concentrating on each movement. Correct? Does that mean that it is necessary to always concentrate on the movements? What happens if someone is distracted and breaks concentration?
When I am in my "off" periods, (e.g. when I'm up walking around at 3am and don't take my first meds until 5 am, ) I have to concentrate on swinging my arms and taking big steps - otherwise I just shuffle. But once my meds kick in I can walk normally without really thinking about it. How does that fit in to your understanding of neuroplasticity?
Hi Joanne. You are coorect! What I used to do subconsciously, I now have to do consciously. As I undrstand it, although my brain will be committing what I am now doing consciously to my subconscious, my subconscious is still not able to do anything properly, so nothing changes. That does not worry me. I am so used to consciously controlling my walk and bringing food and drink to my mouth that it is old hat now.
When I am indoors and walking around the house I tend to shuffle, unless I consciously walk, which isn't often. It is indoors that I have most of my falls, especially in the bedroom. These accidents are not the same as when I once swerved to avoid a child and fell out of bed!
If I am wearing rubber soles and don't pick up my feet. the soles grip the carpet and I go headfirst into whatever is in front of me.
At a meeting in Brisbane one of the patients said he has stopped medication and is 'off' all the time. He is getting used to it and he does everything consciously, as I have been doing for 14 years now. Why take medication if it does nothing to slow down the progression of the Pd? If he does the fast walking he should soon start to feel the benefit of the GDNF he should be producig in his brain, if he is walking fast enough.
I assume you mean that when you are able to move without the drugs you can still do it consciously? That is not the neuroplasticity he is talking about. He is talking about the Growth Factor, which is produced by the brain to repair the damaged brain cells. That means those brain cells are changing! If they stayed the same, we would soon run out of those brain cells and would be completely rigid. I am far from immobile, after over 52 yaers of having Pd symptoms. Without knowing it, I was producing those 'growth factors' and continually repairing, or replacing, those damaged brain cells. Taking medication has no affect on that.
Keep up the good work!
John
Thanks John. We have so much to learn. I personally would not consider stopping my meds. I'm as stiff as a board when I'm "off" and once they kick in I can move freely and feel like a normal human being again. Of course, who wouldn't appreciate meds that cure? But for now, I fully appreciate the symptomatic relief of the meds... plus the effect of exercise, of course.
Hi Joanne. I am not suggesting that you come off your meds. If you start t get more dopamine in your bran as a result of doing the wlking, then you will require less medication, otherwise you probably would get dyskinesia. Listen to what your body is telling you.
John
I ike you John!
Thanks Pushkin.
John
I have rumbled you friend...masqueraaaaaaaaading as a part-time antipodean, sounds like you are more likely a springbok!
John I am confused by this statement .
I have been accused of many things, including not having idiopathic Pd, ....
How can that be an accusation if you have already said yourself you do not have idiopathic Parkinsons .
Hi Hikoi. I have been told I do not j=have idiopathic Pd, not nby my own neurologists butby others who have not examined me. s you know, idiopathic means, "Of unknown cause". AS there is no known cause for Pd or Parkinsonisms I don't know what this discussion is about? I think it is a medical ploy to put people off listeningto me.
What do you think?
John
This different from what you wrote Seven months ago. you wrote that you were tested by the top neuro who said you did not have idiopathic Parkinsons. I don't know what other type you have but I would say 99.9% of people with PD who post here have idiopathic Parkinsons.
I do think it is important to know the correct diagnosis to understand the disease because your type certainly seems different. For instance you have said before that you don't know anyone who as reversed Parkinsons long term like you. I know you say they are not persistent but it could also be because they have a different type of condition to you.
I know you want the best for us but your diagnosis is always going to be questioned, that's part of the territory being a public figure. , no neurologist has publicly confirm what you have, have they?
"... I recently, towards the beginning of this year, went to see the top neurologist in Cape Town to get his diagnosis of whether I do or don't have Pd.. He did his normal series of tests and he said that he has no doubt that I do still have Pd. He said that my Pd is not idiopathic Pd. What that means I do not know, because idiopathic means cause unknown. That would mean that we know the cause of my Pd, which of course we don't. You get my meaning."rt
I have been told i have the start of Parkinson's,I also have neurofibrotosis for twenty years,sleep apnor,type two diabetes,asmere,high blood pressure,gout,dry eye ,E D.
Back pain,and lots more i care to mention.
That's a lot to deal with mate. My heart goes out to you.
Are you anfipodean?
Only on the weekends.
If that be true my hearty, then you will know what I mean when I say I am from 'across the ditch', neighbours really.
Thanks a lot.nice to get it off my chest
are you on any pd meds if so
If the meds help there is 85% chance your in denial after 5 years
john your a snake oil salesman or jesus which one
How appropriate to find John Pepper continuing to tout his "Reverse Parkinson's Disease" farce under the caption "Snake Oil and Myths". Fast-talking about fast-walking has become his reason-to-be. 
Agreed MC. His raison d'etre is being fed here. Best to not engage.
Hi Hikoi. We seem to be running around in circles. My understanding of Parkinsonism is that it is anything in the same area of the brain that is not 'Idiopathic ' Pd. Many people have claimed that I do not have Pd and that I have parkinsonism. They are all wrong. My Neurologists should know what they are talking about rather than these critics who have never examined me.
John
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