"I’ve had Parkinson’s disease foro over 15 years... but you wouldn’tk know it by looking at me.I Iowe much of my success tot the various things I’ve done to stay healthy. I eat a Paleo diet and try to maintain a modified fasting lifestyle. I exercise regularly and I never skip my stretching and balancing exercises.
And I also take a combination of supplements—including N-acetyl-cysteine, lithium orotate, CPD-choline, plant sterols, and weekly infusions of vitamin C and NAC.
Maintaining this level of health might seem like a lot of work. ButI know it’s worth the effort. Because I’m very fortunate. Every week, I see patients whose Parkinson’s disease is progressing much faster than mine... and some even have severe, life-alterings Symptoms"
Well this is troubling (I'm not sure WHY I find it troubling. I guess I want to fix my gut and fix my REMSBD, and this makes it sound like my problems did not start in my gut):
One of the most recent findings reveals that Parkinson’s can start in either your gut OR your brain.
When Parkinson’s starts in your brain, it’s typically linked to a sleep disorder known as REM sleep behavior disorder. There is also a loss of dopamine uptake in your brain.
This is eventually followed by damage to other neuronal systems, such as your heart and your intestines.
But Danish researchers have discovered another type of Parkinson’s disease, which they are calling “body-first” Parkinson’s (they call the first type “brain-first” Parkinson’s.)
In the body-first type, the damage actually begins in the neurons of your intestinal wall, before any damage appears in your brain!
The illness then spreads to your heart, circulatory system, and eventually to your brainstem. This is supported by the observation (backed up by mouse studies) that GI symptoms including constipation, increased salivation, and trouble swallowing), as well as disorders
of intestinal bacteria and leaky gut are all found in patients YEARS before classic Parkinson’s symptoms show up.
I think it bothers me that I have been working for almost 3 months to move from 6 to 3/4 on the Bristol chart and it may be for nothing (I think it is still worthwhile):
I just started taking diphenoxylate/atropine 2.5 MG. I take one first thing in the morning and one before bedtime. I have gone from a Bristol 7 to a 5 in just a week. I'm authorized to take up to 4 tablets a day but haven't gone that far. With4 tablets I think I could become almost normal.
I have been recommending NAC and CDP choline as I take it and they help. But the plant sterols are for cholesterol. Does anyone take plant sterols for PD? C infusions? Great article. Thank you for posting it.
How much NAC are you taking if I may ask? I saw a story on NAC + Glycine really boosting glutathione so tried taking 600 mg of NAC with 1000 mg of glycine but I got heart palpitations.
CDP-choline has also been shown to be effective as co-therapy for Parkinson's disease. No serious side effects have been found in any of the groups of patients treated with CDP-choline, which demonstrates the safety of the treatment.
As far as brain-first Parkinson’s goes, early signs of oxidative stress on the dopamine system—a group of nerve cells—seem to be a catalyst for developing the disease.
There are now many studies suggesting that n-acetyl-cysteine, a natural antioxidant and the precursor to glutathione (“the master antioxidant”) can REVERSE some of the symptoms of Parkinson’s—such as tremors, balance issues, muscle rigidity and cognitive problems— probably by reversing this oxidative stress.
Unfortunately 600 mg of NAC gave me heart palpitations. Somebody suggested I try 300 mg.
I eat a Paleo diet and try to maintain a modified fasting lifestyle. I exercise regularly and I never skip my stretching and balancing exercises.
And I also take a combination of supplements—including N-acetyl-cysteine, lithium orotate, CPD-choline, plant sterols, and weekly infusions of vitamin C and NAC.
I have had Pd symptoms since 1963. Only diagnosed in 1992. Came off all Pd Medication in 2002 and have been Pd medication free since then. Now 86b and living normal life. I did Fast Walking and a few other lifestyle changes to reach this position.
People who are lucky enough to have a mild or non-progressive type of Parkinson’s, like to think that their particular regime caused their slow progress. This might be true , but for a series one it is not likely , it is interesting but not relevant.To prove the effectiveness of what you do and take, you would need a large group, and to test each of the variables, one at a time. This is not practical .
I am a doctor too, and my PD started 4 years ago, when I was 82. I follow not special diet, I do no special exercises, I take no supplements at all, I follow advice from a Movement Disorder Clinic. They see hundreds of cases a year, more than I ever saw. I am on a high dose of Madopar (Actually Proplopa, which is the Canadian version) with no side effects, I do not waste time nor money on a whole group of things which might, but have never been proved to help.
You and I have been around this before, your do nothing approach vs my feeling the exact opposite, so you'll understand if and why I'll disagree with you again.
Have you watchedany of Dr. Laurie Mischley's videos -- this one, for example, posted recently by rescuema, and if so, what do you think of her data re dietary items, such a dairy?
Toward the end of the video she says 9% of people in her data base have reversed their symptoms thru diet, exercise and lifestyle choices. Can you point out any flaws in her data collection or interpretation?
I do have a question for you. What do you recommend for those PwP for whom the C/L and other PD pharmaceuticals don't work? Are they left to follow your (do nothing) approach too?
However, we 've all heard the old adage, "No one on their death bed says, "I wish I would've spent my time in the office."" I have another one, I bet there is no one in stage 5 PD confined to a wheel chair or a bed who says, "I'm sure glad I didn't do anything about my having Parkinson's for all those years."
I did not express myself very well if I gave the impression of recommending “do nothing” What I recommend is to have a specialized Movement Disorder Clinic and do what they recommend. The clinic I go to, and follow, has hundreds of patients with PD, and Therefore vast experience.When looking at advice, or studies, look at where they came from, if it is the Mayo Clinic, trust them a lot more than trusting me.
Your alternative is to chase claimed cures and treatments, of which there are hundreds to choose from on this site.
Either way, good luck to you. We both have the same aim, we are just going about it in different ways.
( And on their deathbed says, “I am pleased I wasted so much of my limited time chasing bogus cures”)
The most stupid thing we PWP do is consulting doctors and movement disorder specialists. The reason is that they have no clue of the disease. We, the patients better know about the disease. Whenever you consult the doctor, he can't do anything except increasing the sinemet dose
Exactly my feeling! Husband has an appointment with his Vanderbilt MDS next week, almost 2 years from last appointment. I will not ask him for med prescription (that our FP can do), just if he knows of any DISEASE MODIFYING medication. I will also ask him to give us his opinion on the countless "trials" and results plus his opinion on PTT. He is, however, an open-minded, young and very smart doctor who has no problem with supplements or MP! His nurse asks for a list of all supplements and natural remedies my husband is on. She never or MDS dismissed any of that, actually, he was very helpful with instructions on MP.
If you "exactly" share farooqji's feelings, then it seems more than a little odd that you are going to your next MDS appointment. Is there a benefit to going there or not?
I'm sorry you think so, but I still don't understand if you are a caregiver or a doctor or a Pwps? It is curious that I have noticed here the exact same thing about you towards Despe, you can see that the saying among children "whoever says it knows he is" is always valid.
I agree that it is very deceptive to look at an individual and believe what they did was responsible for their improvement. Parkinson’s is so variable that many people are going to progress very slowly. I practiced medicine also 20 years.
On the other hand I constantly am experimenting on myself. I agree with what condor39 said 100 percent, but I still am hardly doing nothing.
I take stories like this to investigate the science behind his suggestions. Sometimes when the antidotal data is compelling I try those things to when the science is not really understandable to me.
I definitely try to find potential harm in what I might find.
If I was working with patients it would be tougher as it would not really be my job to experiment on them like I do on myself. However I would tell them why I think something is likely to work, especially if cheap and does no harm.
Someone tells you there is no cure but someone else tells you remedy X cured him. Even though there's a small corner of my brain telling me it's b******t I can't help myself, I have to try remedy X. 30 years ago I had LASIK, laser surgery to correct myopia. But the surgery ruined my night vision and I've spent 30 years trying every treatment espoused on the internet. I'm still not able to drive at night.
I heard the the FDA might take NAC, N-acetyl-cysteine, off as a supplement. Being a doctor have you heard this and would you please look into it further. It would be awful, to say the least, it they did. Both my husband, who has Parkinson's, and myself have been taking it for years. I believe it has something to do with the fact that it most likely will also protect one against COVID. Supposedly they want to patent it. Sounds like our government today(???) Would appreciate your response, Thanks.
I have found a drug/lifestyle/discipline that has been around a long time, has no side effects, and has shown to be effective against many different diseases including PD. The generic version goes by the name of "Placebo". Whether it is a special blend of herbs and spices or a particular lifestyle or discipline the Placebo effect is a real phenomenon. So if you believe that it works for you and you like a bit of control, then go for it. If you chose to do nothing and let nature or a higher being be in control, that strategy would relieve some stress.... which is also beneficial. So whatever "floats yer boat", but doesn't sink someone elses boat is fine with me.
I agree, the placebo effect is very real, certainly for PWP, and I guess it has the dubious distinction of being the second most effective "treatment" for PWP (and for most people, immensely less effective than the most effective treatment, conventional Parkinson's meds).
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