Use it or lose it. : The more i do the... - Cure Parkinson's

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Use it or lose it.

Bailey_Texas profile image
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The more i do the better i feel. Worked 13 hours Thursday and 13 hours Friday for

Junk King picking up construction trash, cleaning out garages, and loading it on a 5 ton truck. Had no problems either day. Never felt better. Like my pd went on vacation. Did 2 hours of Crossfit today.

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Bailey_Texas profile image
Bailey_Texas
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12stargate profile image
12stargate

Bailey_Texas

I am truly happy for yoy👍🌺🌺🌺

silvestrov profile image
silvestrov

I am glad you are doing well - it is nice to hear success stories. I am throwing in a humorous clip...which I think you may recognize.

youtube.com/watch?v=Xze_izj...

enjoysalud profile image
enjoysalud in reply to silvestrov

Silvestrov, I loved it. I own most of the PInk Panther movies. I'm happy for Bailey. He puts much work and great attitude into his exercise and the results are testimony. I give him much applause. I know it's not easy. My son is doing a bit better with the supplements you suggested. He does a 3 mile walk 6 mornings a week, 30 minutes on the bike 4 afternoons a week, and 2 one hour PD classes at the Y, and yet he is suffering..............much anxiety (not constant but today at the bank putting in place a POA). He has relented on doing Botox for his cervical dystonia. Lots of pain. He has an appt Aug 9th. Yet, he has great attitude. PD can drives us all nuts. So, I thank you for the humor and for all the help you extend to so many of us. Each day I give thanks in my prayers for your contributions.

silvestrov profile image
silvestrov in reply to enjoysalud

I am glad to be of assistance. I grew up watching the PP and when I read Bailey_Texas's comments about getting 'better and better', I had to go 'there'. Humor is always a good thing.

I am curious when does your son take theanine (and at what dose) for anxiety? I may have another recommendation.

enjoysalud profile image
enjoysalud in reply to silvestrov

Hi Silvestrov, you have specifically responded to me on different occasions...for which I give much thanks. ON the posting of MANY THANKS TO SILVESTROV I shared about my son and what supplements I give him. Just yesterday I increased his L-theanine to 400mg morning and lunch. At dinner he takes 200mg. Today he said he knows the increase has helped because today he went much quicker to relaxation. Today I went with him to the bank to establish a POA. His back started to get stiff and I could see that he was getting anxious. My son (54 years old, DX with DatScan Aug, 2015) is NOT very in tuned to changes in his anxiety, but does notice that his neck is getting stiffer or his shoulders or his back. Among other PD symptoms he has cervical dystonia. He does do neck stretching exercises daily. You had suggested NADH, but also suggested to add one supplement at a time to see what was working. I have NOT added the NADH. My son does pretty well at home or in familiar locations (church, familiar lunch places, Costco, doctor's office, etc), but anything that is different or upsetting/stressful (a POA signifies that he may be losing "control" over his life) can create anxiety. The L-theanine is taken separate from the following concoction. June 11th I started a concoction (ALL LIQUID supplements) which I am slowly increasing the dosage...he drinks it 3X daily and the dosages are mostly evenly divided. Today he is at 500mg of EGCG; 900mg of liquid CQ10; 1000mg of Niacinamide (2X daily- morn and dinner), 3000mg of Vit C. It's pretty evenly divided, except for EGCG (breakfast and lunch only). It's all mixed in a 1/2 glass of OJ. You give me confidence in the supplements I have him on........no one else to tell me it's o.k. or not good. Since starting the concoction his fatigue has lessened considerably. I have him on many other supplements that he has been on for almost a year. HE TAKES 25/100, 2.5 SINEMET 3X DAILY. I think I will NOT plan to increase the concoction for another 8 weeks..........if I do I think it will be to add the NADH. I want to see if he improves with what I am giving him. He seems to be tolerating it all well, NO nausea or diarrhea. I don't know about his liver. He goes in for a physical (Kaiser) in August. To look at my son you CAN TELL that something is wrong with him. It's heart breaking for me. When tense, when he talks, his upper lip pulls across his teeth. He is not one of these PDs that you can't tell. He has DOUBLE VISION. He should get his new glasses prescription by the end of the month. I hope that will help him to open both eyes instead of keeping one closed for mono vision. Any comments?

Kaykaykay123 profile image
Kaykaykay123 in reply to enjoysalud

Hi I'm newly diagnosed and live abroad so don't get much support.I also have awful neck and upper back stiffness and pain.So this is a symptom of PD?

Bailey_Texas profile image
Bailey_Texas in reply to Kaykaykay123

Yes i have arm and hand pain i believe it can be any where in our body. carbidopa levodopa helps or will stop the pain.

Kaykaykay123 profile image
Kaykaykay123 in reply to Bailey_Texas

Thanks.I take senimet twice a day,is that the same thing?

Bailey_Texas profile image
Bailey_Texas in reply to Kaykaykay123

yes it is

But I take 1 50/200 extended release and 1 25/100 5 times a day.

enjoysalud profile image
enjoysalud in reply to Kaykaykay123

According to my son's neuro it is..............

silvestrov profile image
silvestrov in reply to enjoysalud

Here is an excerpt (I wrote from a thread about blurry vision and in addition to quercetin/bromelain, there is a eye vitamin with a bunch of good stuff for PD. Further in the thread I found one of the most promising adjuvant therapies for PD: A supplement to prevent hangovers! Seriously, its components are remarkable and all are good for PD.

healthunlocked.com/parkinso...

First things first. If the NADH was not added, no rush here. You know best as to when to add it (or not) as therapy.

Below I noted that quercetin is a COMT inhibitor like entacapone and it also positive effects the eyes. In short, take a 1/2 a dose (1 capsule) with C/L to see if it can help with extending the the effectiveness of C/L and also improve the eyesight.

The text:

I have several thoughts about your eyesight and current therapy. You now take levodopa/carbidopa but, as of yet, have not incorporated Entacapone (which is used to lessen the on/off effect). When levodopa + carbidopa + entacapone (a COMT inhibitor) is combined it is called the drug Stalevo.

In the world of nutraceuticals the best COMT inhibitor is quercetin. Quercetin is a component of green tea - a catechin, and has been tested for this specific reason:

Quercetin potentiates L-Dopa reversal of drug-induced catalepsy in rats: possible COMT/MAO inhibition.

"When quercetin was combined with a subthreshold dose of L-dopa plus carbidopa, the anticatatonic effect was potentiated."

ncbi.nlm.nih.gov/pubmed/127...

Consequently, levodopa + carbidopa + quercetin/bromelain (it helps with the absorption of quercetin) = Stalevo

Yes I know there is no known proper dose of Levodopa/carbidopa/quercetin/bromelain so caution must be the word of the day and if you wanted to try this, take it slow.

An additional question is, is quercetin good for the eyes?

Here is a testament from a person who took quercetin/bromelain and had diabetic influenced blurry vision:

"Being diabetic my eyes were starting to go blurry and according to my Optometrist there was nothing that could be done to help as what causes this is the blood vessels in the back of the eye become dilated and can no longer carry enough oxygen to the eye, and therefor the eyes become blurry.

HOWEVER I read in a diabetic magazine that QUERCETIN can reduce this problem by helping the blood vessels. No longer being able to see it was time to turn in my drivers licence, and I hated to do that, so I figured that for the price of a bottle of pills what did I have to lose!

If you have this problem TRY THIS!!!!!

It has worked wonders for me and my Dr. can not beleive the difference! My eyesight is at 20/20 and I am 71 with diabetes, COPD, CHF,RLS,PAD and arthritis. If I didn't know better I think it helps the arthritic problem also but it is hard to tell. I do know that since taking this stuff it hasn't gotten worse!!!!

amazon.com/NOW-Foods-Querce...

Sure this is one person's experience but what about scientific studies:

Eye lens in aging and diabetes: effect of quercetin.

ncbi.nlm.nih.gov/pubmed/219...

Effects of Quercetin in a Mouse Model of Experimental Dry Eye.

ncbi.nlm.nih.gov/pubmed/262...

The protective effect of quercetin against oxidative stress in the human RPE in vitro.

ncbi.nlm.nih.gov/pubmed/183...

enjoysalud profile image
enjoysalud in reply to silvestrov

Thank you Silvestrov, and especially for reassuring me that NOT starting the NADH for my son is ok. Every time I add a supplement I get a tiny bit scary....even when I read tons of research support for it. I wonder about mixing all those supplements. I am not so concerned about my son's DOUBLE VISION. His new glasses prescription is going to have a HUGE upsurge of prism (20), not my hope for him, but he has a new optometrist who specializes on prisms and she interacts with son instead of just dictating. I think the cataract surgery improving his vision in one eye may have caused the present upsurge in his prisms. For some time I have had him on AREDS and Lutein & Zeaxanthin. My biggest concern is my son's current ANXIETY. He will NOT entertain pharma meds for it. I started him on L-theanine (200mg) 3X daily on June 10th. I increased it YESTERDAY to 400mg 2X daily and 200 at dinner time. The GREEN TEA EXTRACT (Chi Tea liquid Extract brand you had informed Donzim about) I started my son on June 11th...125mg for the day. I slowly increased that. Today he is taking 375mg. I was planning on increasing it to 500mg but got a bit of fear in me and so am staying with lower dose of 375mg. Do you think there might be an interaction? Am I impatient, and not giving enough time for the supplements to take effect? Too fearful and perhaps should increase the EGCG to 500mg? Oh, and today I'm going to increase his Niacinamide (NOW brand) to 500mg 2X daily (morn and night). I started him on 500mg June 27th. Should I just give it more time? Any comments? It's difficult choosing what is best for another. I have NO FEAR on what I choose for myself, but shake in my boots for picking out supplements to help my trusting son. It's 7am in Los Angeles and need to start my day. Thank you!

silvestrov profile image
silvestrov in reply to enjoysalud

The only possible negative consequence for EGCG use is liver problems but your son is taking 1,000 mg/day of theanine and theanine helps to protect the liver. And at that dose the liver is well protected. EGCG, theanine, quercetin, rutin, kaempherol, myricetin, caffeine....are all derived from green tea and work together fine. Increasing the dose with cause no interaction problems.

As for NADH, it is one of the safest supplements I can think of (along with theanine).

Since anxiety is your main concern I am going to unlock a can of whop-ass for anxiety. Along with theanine, the flavonoid baicalin is one of the best things you can do for this problem. I take both. Baicalin derives from the plant Scutellaria Baicalensis - Skullcap, and is commonly mentioned in anxiety forums. To start off, baicalin is good for PD:

sciencedaily.com/releases/2...

This is just one of many studies. Baicalin acts on the benzodiazapine sensors which are targeted by drugs like restorill and xanax.

repository.ust.hk/ir/Record...

Having researched baicalin it has been shown to be good for irritable bowel syndrome, Alzheimer's, Parkinson's, 5 types of cancer cell lines.....and a numerous amount of other conditions but it has a potential negative side effect: it could possibly be bad for the liver with high or extended use.

I am fighting osteo arthritis and baicalin is great for osteo and there actually is a product using baicalin specifically made for such a purpose:

Limbrel

limbrel.com/about/limbrel.php

I do not take Limbrel but take a powered form purchased online:

amazon.com/Baicalin-Powder-...

Limbrel and liver dysfunction:

ncbi.nlm.nih.gov/pubmed/227...

In the above article it mentions Limbrel caused

"marked elevations in levels of alanine aminotransferase (mean peak, 1268 U/L; range, 741 to 1540 U/L), alkaline phosphatase...."

What does theanine have to contribute to this thread?

Protective Effect of Theanine on the Acetaminophen-induced Hepatotoxicity [2010]

"The hepatoprotective effects of theanine on acetaminophen (APAP)-induced hepatotoxicity were investigated in vivo and in vitro. The effects of theanine on liver toxicity induced by APAP were assessed by blood biochemical and histopathological analyses. APAP treatment (400 mg/kg) caused severe liver injury in mice as indicated by their significantly elevated plasma aspartate aminotransferase (AST) and alanine aminotransferase (ALT) levels. Pretreatment with theanine for 3 days attenuated the increase in ALT and AST when challenged with APAP. These protective effects of theanine against APAP-induced toxicity were consistent with the results from the histopathological examinations. We next examined the effects of theanine on the GSH concentration in liver plasma. The hepatic GSH level was significantly elevated in a dose-dependent manner by theanine treatment. The results suggest that the protective effects of theanine APAP-induced hapatotoxicity by antioxidative effect and GSH induction, implying that theanine should be considered a potential chemopreventive agent.

"

agris.fao.org/agris-search/...

It has been established the baicalin can damage the liver and theanine can protect the liver. Are their any real world examples of this?

"Mix 4 - 5 grams of Baicalin powder with 4 - 5 grams of L-Theanine in about six ounces of water, stir vigorously and down it as fast as you can. It's not gag-me-with-a-spoon gross, but it's not pleasant."

socialanxietysupport.com/fo...

In no way am I recommending anyone take 4-5 grams/day of baicalin. Considering Limbrel can cause liver toxicity at 250 mg/day this man should have died of liver failure before he ever had a chance to write this post. At 4-5 grams he should have been hospitalized almost immediately and possibly died the first week of his stay - even with therapy (NAC).

I take 200 mg baicalin with 200 mg theanine about 1 hour before bed because it relaxes me and though it is not a sleep aid it aids me going to sleep.

At 1,000 mg/day you son's liver is well protected. The article about acetaminophen toxicity noted that theanine works in a dose-dependent manner. Meaning, the more you take the better the protective effect.

Have I felt any sickness, jaundice or symptoms of liver problems from taking baicalin? No. Realizing that baicalin can cause problems I leave the dose at 200 mg/day and feel comfortable with this. And of course theanine is its constant companion.

Even at a 200 mg dose your son should feel some relief from anxiety.

I almost forgot, one of the most interesting qualities about baicalin is it is a powerful analgesic with action comparable to ibuprofen:

The antiinflammatory and analgesic effects of baicalin in carrageenan-evoked thermal hyperalgesia.

"Pre- or post treatment with baicalin (10, 30, or 100 mg/kg intraperitoneally) caused a significant analgesic effect with a similar effect of dose-matched ibuprofen."

ncbi.nlm.nih.gov/pubmed/146...

Hence on its actions in helping arthritis - it kills pain. It may help with the dystonia too.

I hope this helps.

Rich

enjoysalud profile image
enjoysalud in reply to silvestrov

Thank you, Silvestrov. I will read it, mull it over, and get back to you. My son, for the coming week, did not want to increase dosages beyond L-theanine . He wants to see how he feels after the week. I think I will purchase the NADH, in hopes my son will accept taking it some time in the future . What I wanted to do this coming week was to increase the niacinamide to 500mg 2X daily (morn and nite). He is currently taking 500mg in the morn. Before I sign off, I wish to thank you again for taking the time to send all those sites which reassure me in giving my son increased dosages of L-theanine. Time to read the Sunday paper and relax. Where did the day go...........Oh I know getting an estimate for a rod iron rail along my son's front porch steps. Life is good!!

akgirlsrock profile image
akgirlsrock in reply to silvestrov

Question, do you know if mucana will make your muscles cramp, herbsforever 30% l -dopa. I normally take l-tyrosine with 5htp it works but I think the tyrosine might be making me more anxious, thought I would try mucuna with 5htp. I was taking some of Dr. Heinzs pills they seemed to help relax me. Parkinson's 4 yr. no RX drugs yet symptoms only on left side tremor progressing and dragging left leg. Thanks for all your advise on this sight . Maria

silvestrov profile image
silvestrov in reply to akgirlsrock

A cheap and safe anti-anxiety amino acid (commonly used and recommended on this site) it L-theanine. It is in white, black, green and oolong tea(s) and actually out performed xanax for anxiety in a randomized clinical trial. It is commonly used on anxiety forums too. In addition to anxiety, it is good for PD, your general health, the liver......safe, cheap and effective, my kind of remedy.

Theanine and anxiety:

lifeextension.com/magazine/...

Theanine and PD: ncbi.nlm.nih.gov/pubmed/184...

Theanine and the liver: ncbi.nlm.nih.gov/pubmed/220...

More on theanine: ncbi.nlm.nih.gov/pubmed/171...

" Japanese researchers, for instance, have demonstrated that theanine reduces blood pressure in a dose-dependent manner in rats serving as a model for human hypertension (elevated blood pressure). The larger the dose of theanine given the rats, the more dramatic was the reduction in their blood pressure. Intriguingly, when control rats with normal blood pressure were given the highest dose of theanine, they experienced no change in blood pressure. It appears that theanine has no effect of lowering blood pressure in normal individuals, but instead affects blood pressure only when a problem already exists."

lifeextension.com/magazine/...

enjoysalud profile image
enjoysalud in reply to silvestrov

Thank you.....REASSURING for me on having chosen L-theanine for my son's anxiety. Maybe just need to give it more time.

Enidah profile image
Enidah in reply to enjoysalud

Anxiety was one of my first symptoms. I have never had that before in my life. When I started the C/L it was a great help with everything but what helped my anxiety the most was Lexapro and of course it helps with depression.

enjoysalud profile image
enjoysalud in reply to Enidah

Thank you for your response! My son is adamant about rejecting Pharma meds for his Anxiety. Before the DX of PD, they thought his symptoms were psychiatric and he was given Prozac which did help. My son felt Prozac "changed him too much" and when he decided to start with Azilect he was taken off Prozac. He stopped the Azilect and is strictly on Sinemet. The anxiety is revisiting him after 10 months of going away. I'm wondering if adding EGCG to his supplements may have brought it on....or that it just is what it is............Need to get ready for church, and pick up my son. Marvelous sermons that inspire us both and provoke us to think.

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply to silvestrov

I missed this, silvestrov quite brilliant. There is a new software called Yarn, it allows you to create and edit movie quotes. I think it is still in Beta. You did this before I started so it looks like I stoled your idea. How smart am I to unknowingly still a brilliant idea.

enjoysalud profile image
enjoysalud

Baily, FABULOUS!!! I know it takes much hard work. Thank you for sharing.

Bailey_Texas profile image
Bailey_Texas

This is what happen to me the other morning

Crossfit and quick thinking saves my life. I WAS ALMOST ROBBED BY SOME ONE IN A EARLY MODEL TOWN CAR. I was walking this morning on Barnes Bridge and a early model Town car passed me and stopped. Then backed up to me. I knew in a instance they were going to rob me. So i ran at them and passed them they drove toward me again and i ran back at them and passed them again. They came at me again but gave up and drove off. The police said i surprised them by running.

This was posted on face book by my instructor about another benefit of being fit.

facebook.com/CrossFitFCH/ph...

Beckey profile image
Beckey

Is exercise as effective for people with other neurological ailments, does anyone know? I know it's believed to stall the progression of Alzheimers, but would that also be true for MS, for instance?

Bailey_Texas profile image
Bailey_Texas in reply to Beckey

Exercise helps with all ailments. It helps you get through the day by making every day chores easier. When you exercise, your body releases chemicals called endorphins. These endorphins interact with the receptors in your brain that reduce your perception of pain. Endorphins also trigger a positive feeling in the body, similar to that of morphine. Other endorphin effects include decreased stress, euphoric feelings often referred to as a post-exercise high, decreased appetite and improved immune response.

swva profile image
swva

Same here. The more I do, the better feel. I almost never notice my tremor when I work or exercise.

Bailey_Texas profile image
Bailey_Texas in reply to swva

Read my new post and see if you agree with me.

beang profile image
beang

Exercise as much as you can tolerate, maybe a little more. Supplement with a good diet and medication as needed. If there is a rocksteadyboxing.org gym near you, it is a great resource and has offered HOPE to thousands over the past ten years. (I am one of them.)

laglag profile image
laglag

Ditto beang's comments! It works better than you can imagine.

racerCP profile image
racerCP

Bailey, you are one of my idols and great inspiration. I just read a book by MICHAEL KINSLEY, AGING: A BEGINNER'S GUIDE. Come to find out he has had PD 20+ years and has been leading a productive, successful and enviable life as an editor of major publications; writer and speaker. It is a very thin book so it won't eat into your crossfit schedule.

Bailey_Texas profile image
Bailey_Texas in reply to racerCP

Thanks

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