My question about her program is why haven’t the people who have “recovered” gone public in some way? I looked hard to find some independent testimonials but never could. Searching for that brought me here.
If she genuinely faciliated recovery (actual recovery, not i-feel-a-bit-better-after-a-bit-of-yoga recovery) from parkinsons, those that recovered would be lining up to provide testimonials. I know i would. Instead, her advice is to seek these people out (and she isnt willing to help find them). Lol ok.
I tried her program also - dove in deep emotional. It didn't work for me. I had a friend with PD who saw her in person and she told him he was disease free after her treatment but he wasn't and his disease has continued to progress. I also could find no one who claimed to be cured from her program. I was super excited about her program when I found it but I find it tends to just "blame" the patient for not doing enough and struck fear in people who are on meds. My opinion.
I think it comes down to that there are people who are either misdiagnosed or do become cured but they are few and far between. It's ok to share what worked for them but claiming anyone can be cured with that program is problematic.
I dont know how frequently false positives occur in PD dx. I read somewhere that 20% of dx PWP dont have lewy bodies in autopsy. Even if it's only 1 percent, that's enough people with essential tremor (or any of a number of other conditions that can look like PD) to throw people like this a bit of a bone. Between that and your earlier remark - that she considers people healed when they aren't - that might explain it.
Personsally, Im unwilling to accept that she can heal (or help recover or whatever it is) people with PD of a variety that will be proven in autopsy (in other words, PD). I am quite familiar with TCM and whilst it definitely has a nicely mystic vibe about it, they arent regrowing any brain cells.
I'm a western trained veterinarian who practices TCM so was super excited when I first saw her work.
I think a big problem with PD is we don't understand it. Dr. Jeanmonod, my surgeon, told me about an experiment where they destroyed the dopamine cells in rats. If they were not exposed to stress they actually recovered but if exposed to stress they developed PD. And what human does not have stress. So it is so much larger than just dopamine cells. I was rare in that my PD came on over 30 minutes (zero symptoms to full on left sided symptoms). My cells did not suddenly die. To me his theory of the pallidiothalamic tract overfiring as a main part of PD (in some people) makes more sense. Plus experiencing 80-90% of my symptoms melting away post surgery on my treated side (and staying gone over 1.5 years so far). Yet his surgery only works for a smaller subset of people with certain symptoms. I consider myself lucky to be in that subset. This disease is far from a cure until we understand more. More than dopamine cells! Probably PD is multiple diseases we have lumped into one.
She will only accept patients who have ever had, at most, 3 weeks of dopaminergic medication. So as a result she only treats patients who are not routinely taking meds, namely, early stage patients. At this stage of Parkinson's, symptoms are usually light and may be relieved by stress relieving modalities, improved exercise, or placebo effect. So those who do experience relief she pronounces "cured", and per the above report, they may later experience progression.
My opinion of her act: Let me simply say she is not helping.
Plus if you read her info after you had been on meds - it is super scary. No help to scare people with PD. I was so glad I found Dr. Mischley at the same time as I read Janice's book since she believes in early medication
I agree with you. I was frightened and depressed after I read her information, because I have started medication. I felt like it be better if she just didn’t say anything LOL. It’s kind of a stern take on things that I found that very helpful.
I did not use the medication for 3 years after the diagnosis, I tried everything. I may have slowed down a bit, but there was a progression. I am optimistic that all this researches will soon give results and adequate treatment without side effects.
ChrisWF, this we can both agree on🤙. She is a charlatan who has written rambling, woo-woo books on a self publishing website. Not worth discussing. She is looking for easy prey who live nearby.
Do you think I made a mistake by trying to be without medication for as long as possible and reverse the symptoms because the symptoms got worse, thanks in advance ...?
My doctor praised my attempt. He put me on 1/2 madopar 125 mg for a week and then one tablet 3 times a day. I wonder when I should feel improvement because I have had severe leg pain for a while.
I don’t think you did any harm to yourself by waiting. Just echoing what people are saying. But I think when we delay medication it’s just more discomfort than anything. So please don’t feel bad about waiting at all. You tried and that was a great thing and now you’re moving on to other treatments. The medication will definitely help you exercise and get out more too, which is good!
Hi Lenamm, did you actually get to talk to her? I tried to talk to her or her team and despite several phone calls over several weeks, I could never get my calls returned. This was in 2014.
For me, Madopar works best on an empty stomach and particularly the first dose of the day having fasted overnight. Otherwise , I try to time my meals to a time after a dose has kicked and working
I talked to a PwP at the gym last week about not taking your meds too close to eating protein an he's been trying it and this morning he said it was really working for him. His tremors have calmed down. We had to balance a plastic cup on top of the back of our hand and he could do it quite well.
No water in the cup. He held his arm out straight, put the 16 oz cup upside down and held there for about 10 seconds w/o it falling off. A few weeks ago his hand was tremoring pretty bad. He was so thrilled. We also had to balance it on our heads.
Not one person has recovered from Parkinson's because of her program -- because no one has recovered from Parkinson's.
If any of these health gurus ever accidentally stumbled on something that caused a full recovery, it would be the front page of every major Parkinson's organization, the Science of Parkinson's, and the New York Times.
Anytime anyone claims they can produce a full recovery, i.e., cure Parkinson's, ignore them. Not to put too fine a point on it, but she's full of it.
Hi Len hamm. are you aware of Fast Walking as a way to reverse Pd symptoms? Look at John Pepper's profile and see how he has managed to reverse his movement symptoms.
I appreciate your work John and did it for about two years until my dystonia became too bad. I am having my second lesioning surgery on December 9th (I only have dystonia on one side after my first one) and after that should be able to return to it. I 100% believe in what you do and even if people don't get as much relief as you I think it is still very helpful for most! I miss walking distances so much - did 1.5 hours a day before.
Thanks John! In the past I did about 40 minutes of fast by myself and two about 20-30 minute dog walks. If I missed more than two days in a row I definitely got slower/more Parkinson's symptoms.
I definitely had improvement but then severe dystonic dyskinesia hit me that made me housebound. I was on super low dose Sinemet but off it my tremor was too severe for me to stop it completely/ I had surgery in April 2019 (pallidiothalamic tractotomy by FUS on my right brain) which gave me my life back and eliminated close to 90% of my left sided symptoms but I still could not walk distances because of my right leg dystonia. I am having side two in four weeks. Currently parked in Switzerland awaiting. I have what my surgeon's are starting to refer to as "dystonia dominant" Parkinson's.
Almost six years, although I was rare in that mine was sudden onset (full left sided symptoms can on over less than 30 minutes probably to the severity most people have about five years in). Was first diagnosed as dystonia than changed to PD.
It takes time for madopar approximately a few weeks to start feeling the effect of him. I think it repairs nerve pain I don't how to explain anyway thanks for your reply.
I don't think it is sciatica it makes sense to me Lenamm conclusion that could be a pressure of rigidity, cause I have it in both my legs. I will see in the next few weeks because I just started medication, this is my first day with 3 tablets a day because I was on half a tablet for 7 days madopar 125 mg.
Your rapid/30 minute onset is the most amazing thing I've ever heard of re Parkinson's. That would have scared the Be-Jesus out of me. Probably did you too?
Yes especially since it came with some weird non-Parkinson's type issues like my left toes being paralyzed (could move the big one slightly). It presented more like a stroke but with a severe tremor there every waking hour. Confused the neurologist and Dr. Laurie is still convinced I have some weird dystonia/PD hybrid because of the unusual onset and weird rapid onset dystonic dyskinesia last year from low dose meds that looked like cerebral palsy. Either way I've found "my cure" so it really doesn't matter.
Just have to be unique I guess lol. If it was up to me I would have skipped getting it. It’s nice to be out of the US and peaceful here but I miss my clients and those back home. Still very glad he had a cancellation.
Sorry to hear about all these problems. You are lucky they are able to do something about them.
If you are trying to come off any Pd medication, you must do it very slowly, like half a pill every month until you are unable to function properly, then go back that last half and try again in six months.
I found with my dystonia that I can consciously straighten my toes and pt my weight onto them, while standing, and consciously keep them straight when walking, but it is very tiring.
Yep I've learned that the hard way in the past. My surgeon had recommended I don't reduce at all the first three months and then very gradually. Hopefully my dystonia will be a think of the past soon!
I have a question for you John. Would you be able to practice fast walking without medication? And when did you notice that you don't need no more medication and decided to stop using it, thank you in advance.
When I started the fast walking I was on Selegiline, and remained on it for the next eight years. There is no problem doing the fast walking if you don't take medication. It does simplify the problem O deciding if it is the medication or the walking that is making you feel better.My condition after 4 years has improved so much that I was jumping for joy, but I was under the wrong impression that it is not recommended that we come off medication, as it could be dangerous.
I now think that is a load of nonsense. I am sure we can come off any medication If we do it slowly. I could be wrong!
I share most of the opinions here about Hadlock regarding lack of evidence etc. And I don't like the way she kind of tell you that you are totally responsible yourself for your PD.
On the other hand I respect people that chose to try a path without medications that are mostly for symptom relief. (I am on Selegiline monotherapy myself, and have chosen to as long as possible keep the symptoms on a level where it will not affect my exercise regimen).
Her program helps to better manage stress, which could have positive effect on PD symptoms. And if the program gives hope, it could also have effect. There are also some excercises to help to reconnect to affected body parts, which could help for dystonia. So if you have chosen the medication free path, her program could at least help to alleviate some symptoms.
If anyone is on that path, there is one guy that have a blog for his journey with her program at:
My concern is not that some people would not experience some benefit from some of what she says. My problem with her are her claims, like the claims made by the woman who writes the blog in your last link, theparkinsonsblueprint, which are; she can cure Parkinson's.
She cannot cure Parkinson's, nor can Hadlock. They're creating false expectations. They're setting newly diagnosed and otherwise naïve people up for failure and disappointment.
I agree about what you say about Hadlock and I hope it was clear I do not advice anyone to skip medication to be able to follow her program.
Except for some case studies in her book, which you can not know if they are authentic. She provides no evidence or figures of the outcome or effectivness of her program. She is totally open with that and gives an explanation of the reasons for it.
Insread of giving references to people who claims to be cured, she refer to people that volonteraly chosen to go public with it. The only one I found, was the link I provided. He seems to be totally confident on her program and that he is on the path to recovery. He has written notes about his progression in his blog and there are videos as well. To me it is quite clear that he is not symptom free from Parkinsonism. If he is on the path to recovery or not, I leave up to each and everyone to evauate.
For everything you do to manage your situation you need to do a cost/risk/benefit analysis. If a treatment shows none or very little evidence of success. You must take into consideration that the probability that you get the outcome you want is at best very low. Even if you believe in the fact that a small number of persons have been cured, it must be weighted against the total number of people with the decease and the number of people who has tried the treatment without success.
I provided the link and the comment about her program for people that have chosen the medication free path. Because I do not see any risk to use her program if you already are on that path. The probability to be cured is at best very low, but the effort do not have to be waisted if you do not reach all the way, since the probability to alleviate symptoms are considerable higher.
Again, I agree her program probably is of some benefit to some people and probably won't do any harm. When you say the probability of being cured is very low, as opposed to 0, do you think there's anything about her program that stops a/syn from aggregating or precludes mitochondria impairment? If so, what would be the mechanism of action? There is a lot of dysfunction occurring that contributes to progression that would all have to be corrected. I just don't see how one's state of mind can do that.
What I said was that the probability at best is very low. What I mean is that it is somewhere in the span from 0 up to very low. The reason for not being more specific than so was to avoid a detailed discussion of her theories.
It would not add so much value to my point to not have too high expectations of the outcome of her program or any other program only backed up by anecdotal data. But also because I am not qualified enough in the field to bring value into that discussion. I am no expert in either her hypothesis, TCM, PD research, or medicine.
What I could add in general, is that when you have a large number of researchers in one corner and a single person in the other corner with a different hypothesis. The probability is not in favor of the single person´s hypothesis.
Regarding your specific questions, I have to refer to her books. I am not the right person to sort that out.
She introduces the concept of a whole new mode in the autonomous nervous system on top of the TCM acupuncture channel theory to explain her theories of the mechanisms behind idiopathic PD. So I guess the weak link in her theory is not so much about that there are a number of dysfunctions that all need to be corrected to be cured. That is not uncommon in TCM. It is more about the validity of her concepts and TCM in general.
She also states clearly that her program does not cure anyone with Parkinsonian symptoms caused by brain damage made from poisons or drugs. She says that they might manifest in similar symptoms, but do not have the same mechanism behind the cause. Suppose that is correct, what impact would that have on the validity of all kinds of animal research in the PD area? Is there any research made on animals that have got idiopathic PD spontaneously and not from drugs? If you then on top of that add that she says that long term use of dopamine enhancing drugs and medicines are likely to cause brain damage that could manifest as parkinsonian symptoms. If that also is true, what implications will that have on the PD research? How much of the total research is made on PwP that is not on dopamine enhancing medication?
On top of all that, you can not prove that because something is wrong in the theory means that it proves that the program does not work (or vice versa).
So I prefer to stay with my statement that the probability at best is very low and not go further into that discussion.
warm suggestion to try Thiamine High Dose (oral and IM - search in this site) and Gluthatione IM before going for any meds.
When I tried gluthatione at the beginning of my PD I was able to be symptom free for 2 day
another suggestion (not supported by some in this forum), is to talk with your neuro to suspend L/C meds to try mucuna only for up to 3 months or LDN (low dose naltrexone)
there are two ways to use levodopa: std dosage (levodopa with carbidopa) and s.one (including me) believe is that it is far much more than required and in the long term causes the side effects but almost immediate result, versus (very) low dose (mucuna only w/o carbidopa) that takes time to find the right dosage and be effective but is far less "invasive" and may keep side effects far for much longer (virtually for all your life)
Important is that the first exclude the second (ie. if you start with std dosage, you can hardy switch to lower dose) while the second do not exclude the first (obviously)
It is up to you which one you prefer (or need) to start with.
Hi Somic -where is the evidence that mucuna-derived levodopa “is far less “invasive “ and may keep side effects far for much longer (virtually for all your life?” ?
I know that some people will not like what follows.
Quantity makes the poison. Life is homeostasis. If a substance is too much it alters the homeostasis and is considered a poison therefore antagonized.
Defensive actions are: change taste, increase sense of nausea and vomiting, cause diarrea, increase metabolic enzymes in the gut (I.e. decrease absorption in the gut), increase metabolic enzymes in the liver, decrease concentration (liquid retention) or increase excretion (kidneys and skin), decrease sensibility (cells type and receptors), decrease (even zero) the endogenous production (if any) in the target organ initially and everywhere later on, increase metabolism (pressure, breath and heart frequency, agitation), cause unexpected sleepiness (detox neurons during rem sleep), remove from bloodstream and store in body fat.
Some of these measures tend to increase strength with time (es. gut and liver enzymes) and this reduces effectiveness and duration of meds.
Some substances have toxic metabolites that can provide further damage or detox work to liver.
The root cause is that basically the body reacts against a substance because too much.
This doesn’t happen if the dose is much lower, 50/100 times lower, not pure and coming with antioxidants for body/brain. In its natural form a substance comes with its antagonists that help the body to manage it without big problems and without having to increase detox functions.
Levodopa is levodopa: chemical or natural. The difference is in:
- effective quantity (100’s mg vs a few mg)
- cofactors (Carbidopa - Toxic - vs Mucuna antioxidants and levodopa antagonists)
- protocol (high first dose for fast results vs low first dose and slow Increases)
The first approach is the std one. It risks to bring on the long run: addiction, side effects, saturation of detox organs, decreased effectiveness and duration of meds.
The body/brain is considered simple, broken or defective and with parts to be adjusted or replaced.
The second is quite uncommon and unknown (and misunderstood). Main Cons is: long time to reach minimum effective (therapeutic) dose.
The body/brain is considered an intelligent entity (more than his inhabitant) working hard to manage a persistent progressive problem and assure more life to its host
I have been reading your posts and I am appreciating what you are sharing. My mom was just diagnosed with PD and I am trying to help find anything that will be helpful to her. Are you still finding the use of raw goats milk helpful?
Greetings to you. When was mom diagnosed and how old is she? As for goat's milk, I don't use it at the moment. During the cleansing of the body in various ways and goats, milk was part of that regimen. As you can see, the connection between the gut and the brain is often mentioned, and I believe this is the root of PD, at least for me, and that's what I've been working on the most lately.
I also believe that I am the one who caused pd to come into my life. I've been on this forum for a long time and haven't noticed people writing about the cause and how it happened. When we put together the puzzle called pd, I think that is the end of him and that there are no more of us to learn and he will leave us, and until then we put together piece by piece. That is my theory and part of my life story.
Thank you for taking the time to write to me about your experience. Mom keeps saying to me she was not diagnosed. They still have to do more tests. My mom is 78 and the neaurologist said it could either be PD or Parkisonianism. I am still doing my best to gather all the information. I am actually very tired as I have had several nights of lack of sleep so I will write more on another day. Just wanted to thank you for your response to my note!
I'm here for anything if you need it. I forgot to mention fasting on fruit and vegetable juices one period, she can try that. Investigate it.. Have a nice day.
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Question I ask myself at the end of every day
I tried everything else...I would like to know your feelings about that one :
Scheduling meals around taking Carbidopa/Levodopa medication
