No meds

[Boyce3600]

Having seen the recent posts about the book on nutrition ( written by someone with MS) and as well, reading all the supplements, etc that various of you take, I want to ask if it is dangerous NOT to replace dopamine...will not taking sinemet or the Mucuna equivalent do more harm to the neurotransmitter system?

[Hidden]

No med stops or can I say, slows down progression. A med is prescribed to treat a symptom.

If you are good not treating the symptom, you will not have side effects from med treatment. With side effect, the doc piles on additional meds.

Regardless, you are losing dopamine in the progression and the med is replacing, temp., what you lose if only partially.

[Boyce3600 in reply to Hidden]

But exercise can replace dopamine?

[Bailey_Texas in reply to Boyce3600]

Rigorous exercise will produce Endorphins and Serotonin

Endorphins

Endorphins are released by the pituitary gland in the brain during sustained, vigorous exercise. Thought to be released in response to painful or stressful stimuli, endorphins diminish the pain associated with exercise, allowing you to exercise longer and at higher intensities. Other endorphin effects include decreased stress, euphoric feelings often referred to as a post-exercise high, decreased appetite and improved immune response.

Serotonin

Serotonin is another neurochemical released during exercise. Serotonin is a natural mood enhancer. When levels of serotonin are increased, symptoms of depression can be decreased. Simon N. Young, editor in chief of the "Journal of Psychiatry and Neuroscience," reports that people with lower levels of serotonin may experience negative physical effects in addition to depressed mood, such as increased risk for heart disease.

[Boyce3600 in reply to Bailey_Texas]

So exercise does not help to replace dopamine?

[999---666 in reply to Boyce3600]

good question, think something is blocking dopamine production; is definition of pd....but they just don't know, for all they know acetycholine is suppressing dopamine....although they can and have suppressed acetycholine with drugs in some pd persons....relaxes muscles I think.

[Skymom2008 in reply to Bailey_Texas]

Very good description.

[Hidden in reply to Boyce3600]

Maybee so. Probably not. I accept BT's answer.

[ruthgt in reply to Boyce3600]

Exercises cause production of dopamin some one here on the forum told me he is off medicatin while he is walking fast for an hour .beginning 10 minutes evry second day and adding 5 minutes evry second week

[Bouffere85 in reply to ruthgt]

This fast walking is John Pepper 's theory I met him last Wednesday , here is a link to his site reverseparkinsons.net/index...

Watch his video

order his book on Kindle for $3.99

[999---666 in reply to Hidden]

there are neuroprotective diets (foods rich in antioxidents) you just have to make sure you can digest it first, than hope your system knows how to process them. sometimes a problem, probiotics can help there. if you"Re diabetic then you can encourage brain to switch to ketones from glucose fuel. that's power you can weild over disease state.

[Boyce3600 in reply to 999---666]

Do u follow one? Can you direct me to certain one or should i just bing?

[999---666 in reply to Boyce3600]

don't understand, i'm new untested parky trying to personalize my treatment without meds. i'm using process of elimination...eg. I have a private well which is known to be ferrous...iron is very suspect in pd, besides that iron rich water promotes bacterial growth. (if I soak dirty dishes in sink overnite, water starts to smell very quickly, sign that bacteria count is high.) a local testified that local dairy farmer's raw milk spoiled quickly in fridge. clue no.2.

so, I need to test for iron overload avoid iron in supplements and possibly try medical charcoal...to rid myself of heavy metals....most common is mercury which is found in silver tooth fillings. then I plan to overhaul my diet.

[park_bear in reply to Boyce3600]

NAC - N- acetylcysteine has been shown to reverse Parkinson's, at least partially, and is a readily available supplement..

[Astra7 in reply to park_bear]

I am testing this and after 20 days believe it is working so far. Will give it a bit longer before getting too excited, but the other day my foot just relaxed all on its own!!

[Boyce3600 in reply to park_bear]

Is one company better than another as for as purity of substance? Actually, a company called Purity is well known and I keep hearing radio commercials for Balance of Nature. I need to go back to Silvestrov's posts as I believe he mentioned company names he uses. Miss hearing from him. Hope things are going well.

[park_bear in reply to Boyce3600]

I subscribe to ComsumerLabs which tests supplements - the vast majority of supplements do contain what they say they so.

Any, for NAC I bought 1kg. of bulk power from Powder City. I also bulk powders from Amazon.

[park_bear in reply to park_bear]

do not understand how that got so corrupted. What I intended to post:

I subscribe to ComsumerLabs which tests supplements - the vast majority of supplements do contain what they say they do.

Anyway, for NAC I bought 1kg. of bulk power from Powder City. I also buy bulk powders from Amazon.

[stevie3 in reply to park_bear]

Is powder as good as capsules? If I bought the powder from Powder City, I'd save a fair bit.

[park_bear in reply to stevie3]

Yes. Bulk powder is cheaper because it costs a manufacturer extra money to put it in capsules, put the capsules in a bottle, and market them. The downside is you have to cap it up yourself, but the upside is you can customize it. I mix mine with calcium hydroxide, 24% by weight, to get a ph neutral calcium salt when dissolved.

[scubanurse in reply to park_bear]

I bought NAC & ALA in capsules by Nutricost found on Amazon; states has a little rice flour but none of those other additives. Nutrabiology is another good brand.

[Beckey]

If exercise doesn't replace dopamine, how come it mitigates our symptoms?

[TheresaCurley in reply to Beckey]

The meds do replace dopamine but it is only a temporary fix until the meds wear off. At least that's my understanding.

[Astra7 in reply to Beckey]

It promotes gluthiane which is a powerful anti oxidant. It basically helps clean out all the accumulated rubbish in the brain.

I am quite hopeful after taking it for 20 days so far.

[Astra7 in reply to Astra7]

I mean the NAC does. Accidentally posted this in the wrong place!

[stevie3 in reply to Astra7]

I'm having good results with NAC. My left side has improved significantly in terms of strength. At first I thought I was imagining it, but I'm not. I've been keeping a diary.

[Astra7 in reply to stevie3]

That's great to hear. How long have you taken it and what dose?

Are you taking anything else?

[stevie3 in reply to Astra7]

Y.es - 1mg aziclet and 6mg ropinirole every morning. I take 2x600mg NAC and 2x400 mg lipoic acid daily plus other supplements, including Inosine. Two significant things: I can type with my left hand again, and I can swim (I had, for the past two years, listed to one side when I swam but on holiday this time, I stayed upright!). When I started taking ropinirole in February, it made me steadier but didn't do anything about the stiffness in my hand and arm which is now improved by, I would say, 50%.

[soup]

Exercise may have a neuroprotective effect but there aren't enough studies to show that it does.

The correct exercise, that with an element of cognitive stimulation or learning is thought to help develop new neural pathways which would bypass the damaged neurons. It is not thought rescue or protect them though.

My thoughts on exercise is that it needs to be done when optimally medicated so that you are moving safely, not causing joint problems.

[Boyce3600 in reply to soup]

Cognitive stulation "exercises" like brain games, crossword and word search puzzles, and conversation, to name a few?

[soup in reply to Boyce3600]

It is always worth doing the brain training things like puzzles but I'm thinking more of doing exercise whilst learning something, like dance or a new gym routine.

Google PD Warrior.

[999---666 in reply to soup]

there's a lot of talk about the plastic brain, they found you can regenerate neurons......I hope they're working on speeding up the process. that's YOU CAN regenerate your neurons. correct me if I;m wrong.

[paddyfields in reply to 999---666]

As I iunderstand it "plasticity of the brain" refers to the adaptability of the brain in creating new neural pathways between the neurons we still have rather than actual new neurons. I am open to correction...

[999---666 in reply to paddyfields]

I might have misinterpreted wording, first I heard that we can grow neurons was the startling contention that sexual activity in males causes them to be, uum...more dependent on sex; because they developed more neurons. it might of been an oversimplification meant for aahhhh, lay people?

don't know where to go for clarification.

[999---666 in reply to 999---666]

just googled ted talk with Sandrine and the anser is yes. it's called neurogenesis.

[Beckey in reply to soup]

Say, that's a good point.

[soup]

If you Google PD Warrior you will see an interesting exercise programme from Australia. they really focus on neuroplasticity so include oral puzzles such as naming countries from each letter of the alphabet while you exercise.

[Boyce3600 in reply to soup]

Many thanks

[Beckey in reply to soup]

Ooh! I like the sounds of that!

[JohnPepper]

I assume you mean Levodopa. There is no Dopamine medication. The brain turns Levodopa into dopamine.

If it helps you, I knew an old man in my first support group who refused to take any Pd medication because he said it was a rip-off. He asked me what I took and how much paid for it. When I told him he went bananas. He outlived every other patient in that group, who were members at that time. He never took any Pd medication. That answers some of your questions. You don't have to take any Pd medication. Whether you take it or not, the Pd continues to get worse at the same pace.

Some people who take Pd medication get some temporary benefit from it in the form of relief from the tremors and relief from the rigidity. However, that relief gets less and less, as time goes on, and eventually, no matter how much you take, you get no benefit. That is when you are really in trouble.

When I started to do fast walking my symptoms started to get better. Eight years later, I was able to come off all Pd medication and have been off it for over 14 years now, Do you know anybody else who has done this?

[Boyce3600 in reply to JohnPepper]

John, have you ever had a DaTscan? Sorry if u have already stated so or not. I understand it is the only way currently to actually see "how much" dopamine is in the brain. I find it fascinating and so promising that exercise can relieve symptoms so much and yet dopamine not be increased. Makes me think the medical folks are perhaps not seeing the whole picture.

Thank you for all your helpful info. You are an inspiration, for sure.

[JohnPepper in reply to Boyce3600]

Hi Boyce. No! I have never had a DatScan. It is peculiar that you should ask this today. At yesterday's talk in Marin County CA, a patient said she had a DatScan and it said she had Pd and her neurologist said she didn't, or the other way around, it is hard to remember. It emphasized that there is still no definite test for Pd. At yesterday's talk in Marin County CA, there were quite a few tears, including mine, when I was able to get a patient up out of his wheelchair and withing a minute or two he was walking beside me through the hall. Yes! Exercise is the answer to Pd, until we get that elusive cure!

[Boyce3600 in reply to JohnPepper]

I heard of a woman who was diagnosed with PD 5 years ago. Then she had a DaTscan and they saw she was not lacking dopamine. Further investigation revealed her motor symptims had been brought on from taking Abilify ( not sure for how long) , doctors weaned her off, which took a year, and now she is symptom free and the diagnosis has been removed.

[Bouffere85 in reply to JohnPepper]

Hi John, it was a great honor meeting you in Burlingame CA! I have read your great book since and Saturday have started 10 mns fast walking . I believe in your theory ! I , with my Dr's help , am reducing Sinemet , on 5 instead of 8 and progressively reducing!!!

Do you think it would be a good idea or not to fast walk with another PD patient to create a race kind of?

Thank you and keep up the good work sharing your story, I have since Burlingame handed out a copy on the note received with your site link to spread the message to 30 PD participants in an exercise class I attend 3 times a week☺

Best,

Chantal

[JohnPepper in reply to Bouffere85]

Hi Chantal

Thanks for your very encouraging post. Keep up the good work! Thanks for spreading the word, every little bit helps.

[christyd65]

I am unable to tolerate even the beginning low dose of carbi/levo so my dr has me on the max dose of ropinerole & basically said come back when you are ready to discuss DBS which I am very uncomfortable with at this point.It seems clear that any attempts at alternative treatment can't hurt so I plan to attack it from every angle possible. ..exercise, diet etc. If it can't make it worse. ..what's to lose? Just haven't been sure where to start but the responses have been generous w/links to more info so hopefully you will learn as much as I do exploring them and we can hold on long enough for a "breakthrough"

[paddyfields in reply to christyd65]

The carbidopa element of the carbidopa/levodopa pills helps (though not its main purpose) with nausea. However, there is not sufficient of the carbidopa until you are on 75 ,i.e. 3 x 25/100 pills. To help with nausea domperidone is the drug of choice in the UK but not approved I the US where they give extra carbidopa for nausea.

[999---666 in reply to christyd65]

before you do that eliminate you don't have some other movement disease, of which there are aplenty.

[Astra7 in reply to christyd65]

Have you tried NAC? It seems to be possibly helping with rigidity and is cheap and essentially harmless so easy to try. Also magnesium helps a lot, and disprin helps me with that awful feeling that the muscles are being slowely tightened.

Not sure if any of this helps tremors as at the moment I don't really have them unless stressed. Something to look forward to!

Good luck.

[park_bear in reply to Astra7]

NAC seems to have helped my tremors. Not sure about the other symptoms.

[parkie13]

Even advanced cases of Parkinsons have dopamine in their brains. It is like a lawn mower with gas but the switch cannot be turned on so I think we have dopamine which cannot be turned on exercise might be the switch.

[stevie3]

This is quite interesting - NAC seems to be helping a few of us. I say it tentatively because certainly, in my case anyway, it's difficult to know what else may be at play. But it's cheap and, as I often say, seems worth a punt.

[Beckey]

If I didn't take mucuna, I would just have a more pronounced tremor. When I take it, I get a break.