Hi, I may be bored with the questions... - Parkinson's Movement

Parkinson's Movement

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Hi, I may be bored with the questions but I know I will get the answers here.

delboy381
delboy381

I was diagnosed with Pd in 2017 and have been without medication ever since. I tried to reverse the symptoms through Janice Hadlock’s program.

It is very painful emotionally, I did not succeed physically ... I will not write much now, I have two questions, I hope I will get answers.

What do you think of her program, she says many people have recovered through her program?

When do tablets (Madopar 125mg) work better before meals or after meals?

I'm new to medication if you can advise.

Thanks in advance.

72 Replies
oldestnewest

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.

ChrisWF
ChrisWF in reply to Juliegrace

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.

ChrisWF
ChrisWF in reply to lenamm

"she told him he was disease free after her treatment but he wasn't and his disease has continued to progress."

The pieces of the puzzle are starting to fall into place.

lenamm
lenamm in reply to ChrisWF

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.

ChrisWF
ChrisWF in reply to lenamm

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.

lenamm
lenamm in reply to ChrisWF

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.

park_bear
park_bear in reply to ChrisWF

The other part of the Hadlock explanation:

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.

lenamm
lenamm in reply to park_bear

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

Godiv
Godiv in reply to lenamm

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.

delboy381
delboy381 in reply to park_bear

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.

pdpatient
pdpatient in reply to ChrisWF

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.

ChrisWF
ChrisWF in reply to pdpatient

Lol. Spot on.

delboy381
delboy381 in reply to lenamm

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.

lenamm
lenamm in reply to delboy381

I think when you start meds makes no difference in progression. So beyond maybe giving you more relief earlier - no harm done.

delboy381
delboy381 in reply to lenamm

Thank you

Godiv
Godiv in reply to delboy381

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!

delboy381
delboy381 in reply to Godiv

Thank you for your comment.

pdpatient
pdpatient in reply to lenamm

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.

lenamm
lenamm in reply to pdpatient

I never tried

Re meds - take 30 minutes before food or two hours after (especially when eating protein)

delboy381
delboy381 in reply to lenamm

Thank you, have a good one.

Buckholt
Buckholt in reply to delboy381

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

delboy381
delboy381 in reply to Buckholt

Thank you.

laglag
laglag in reply to lenamm

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.

Grumpy77
Grumpy77 in reply to laglag

Was there water in the cup AND how long (how many minutes) did the cup remain balanced on the back of his hand?

laglag
laglag in reply to Grumpy77

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.

Smittybear7
Smittybear7 in reply to laglag

What medication is he on?

laglag
laglag in reply to Smittybear7

He just went on C/L about 3 or 4 weeks ago. I believe he was diagnosed about a year ago.

Thanks to everyone for the reply

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.

ParlePark
ParlePark in reply to MBAnderson

Marc s giving you Good advice.

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.

lenamm
lenamm in reply to JohnPepper

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.

JohnPepper
JohnPepper in reply to lenamm

Thanks! I would highly recommend that you do not do fast walking for more than 1 hour, three times a week.

I wish you lots of good luck with your treatment.

lenamm
lenamm in reply to JohnPepper

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.

JohnPepper
JohnPepper in reply to lenamm

Thanks lenamm. I assume that some of your symptoms have improved. Would that be correct? If not, have they stayed the same?

My experience was that after 4 months most of my movement symptoms started to get better! Patience!

lenamm
lenamm in reply to JohnPepper

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.

delboy381
delboy381 in reply to lenamm

How long do you have pd?

lenamm
lenamm in reply to delboy381

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.

delboy381
delboy381 in reply to lenamm

Thanks, stay positive.

lenamm
lenamm in reply to delboy381

I am for sure. Knowing in 4 weeks I get to get rid of most of my symptoms on my right side is very helpful!

delboy381
delboy381 in reply to lenamm

Since I just started with madopar 125 mg will it help me with leg pain or what is good for leg pain do you know, thanks in advance.

lenamm
lenamm in reply to delboy381

Depends if the pain is from PD or something else. Also if from PD it may or may not help. Give it time.

delboy381
delboy381 in reply to lenamm

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.

lenamm
lenamm in reply to delboy381

It doesn't repair nerve pain but if rigidity is causing pressure on the nerve it should help.

delboy381
delboy381 in reply to lenamm

I have rigidity in my legs obviously rigidity causing this pain.

ParlePark
ParlePark in reply to delboy381

Could possibly be your back. Leg pain is often an indication of that. Recommend getting it checked out.

delboy381
delboy381 in reply to ParlePark

I don't have pain in my back. What supposed need to check with my Dr?

ParlePark
ParlePark in reply to delboy381

Could be sciatica or other.

delboy381
delboy381 in reply to ParlePark

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.

ParlePark
ParlePark in reply to delboy381

Lenamm’s comment Makes sense to me!

MBAnderson
MBAnderson in reply to lenamm

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?

lenamm
lenamm in reply to MBAnderson

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.

MBAnderson
MBAnderson in reply to lenamm

I've never heard of such a thing, plus "... dystonia PD hybrid..."You are one for the record books.

Are you loving Solothurn or do you feel you're there for so long it's boring?

lenamm
lenamm in reply to MBAnderson

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.

JohnPepper
JohnPepper in reply to lenamm

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.

lenamm
lenamm in reply to JohnPepper

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 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:

theparkinsonsblueprint.com

delboy381
delboy381 in reply to Mimer

Thank you for your comments.

MBAnderson
MBAnderson in reply to Mimer

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.

Mimer
Mimer in reply to MBAnderson

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.

pdpatient
pdpatient in reply to Mimer

Mimer, have you been able and contact her?

MBAnderson
MBAnderson in reply to Mimer

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.

Mimer
Mimer in reply to MBAnderson

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.

MBAnderson
MBAnderson in reply to Mimer

Thank you for the thorough explanation

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)

delboy381
delboy381 in reply to Somic67

Thank you for your comment and suggestion. Believe me, I try everything to stay off the med 3 years but the symptoms progress.

Somic67
Somic67 in reply to delboy381

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.

delboy381
delboy381 in reply to Somic67

Thank you for your suggestions.

Cagey84
Cagey84 in reply to Somic67

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?” ?

Somic67
Somic67 in reply to Cagey84

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

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