Coronet Duo (Red Light) Success? - Cure Parkinson's

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Coronet Duo (Red Light) Success?

jimcaster profile image
jimcaster

Approximately three months ago, I asked if Sinemet confers residual benefits. Some of you said yes and one of you provided a link to a study suggesting that there is a long term benefit. However, I posed the same question to my Parkinson’s nurse who basically said that approximately five hours after a dose of immediate release carbidopa levodopa there is a "wearing off" and there is no further benefit. That seems logical since nearly all patients need another dose approximately five hours after their previous dose.

So what does this have to do with my coronet duo red hat? Well, it occurs to me now that I wrote that post a few weeks after I began wearing my coronet duo red hat twice a day. Now, approximately four months after wearing the red hat, and after months of thinking it must be placebo effect, I am becoming a believer.

My handwriting was never very good, but it was COMPLETELY illegible by the time I was diagnosed with Parkinson’s. There's no doubt in my mind that carbidopa/levodopa helped my handwriting and virtually all other symptoms, but here's the the thing -- my handwriting is completely back to normal even 12-18 hours after my last dose of sinemet. Maybe the immediate release sinemet works 12-18 hours, but the only thing I have changed within the past five months is adding the red hat. My sense of smell is better, my affected side (right side) is back to very near normal in every way even many hours after my last dose.

I just missed when mannitol was the hot topic and I have been taking high dose thiamine within weeks of my diagnosis so I have no real way of knowing whether thiamine helps (although I think it does), but I sincerely believe the red hat is a game changer for me. I need to add the usual caveat that we are all different and what seems to work for some of us doesn't work at all for others and that this could still be placebo effect, BUT if you are considering buying or building a red hat, you can Google "red hat for Parkinson's Disease" or "Photobiomodulation for Parkinson's Disease" if you don't just want to take my word for it.

114 Replies

Jim - where’s the best place to get one. Australia? Thanks - JG

kevowpd profile image
kevowpd in reply to reedboat2

wellred.com.au/duo-coronet/...

reedboat2 profile image
reedboat2 in reply to kevowpd

Thanks I’m on the website. Have you had good results as Jim describes? Thanks- JG

kevowpd profile image
kevowpd in reply to reedboat2

Its a bit pricey for me at the moment. Jim is definitely reasonable and sensible though so id give his review some weight.

jimcaster profile image
jimcaster in reply to reedboat2

I got mine through wellred.

wellred.com.au/

Jim - how often do you do a 24min session? Once per day? Thanks- JG

jimcaster profile image
jimcaster in reply to reedboat2

Twice per day.

Jim, I am crying happy tears for you. It’s worth a try for everyone. I’m going to check on it too even though I have started the testing for DBS approval. How exciting. Karen

jimcaster profile image
jimcaster in reply to Kwinholt

Thanks, Karen. I hope and believe the red light is beneficial, but I concede that it could all be placebo effect or some combination of other factors. Please keep us posted on your DBS process. I'm cheering for you!

Thanks for the update, Jim. So happy for you that you have achieved such good results!

My husband has only been using his coronet duo once daily of late as life is so busy. We’ll have to change his schedule to get benefit from it. How many hours do you have between sessions to get these good results?

In the beginning he was using it twice daily and noticed an improvement with his anxiety (not 100% sure if it was the coronet or changing over to the Ayurvedic mucuna) but it’s time to get back to twice daily!

Ashe32 profile image
Ashe32 in reply to Jennyjenny2

Hello JennyCan l ask where you source your macuna from

In Australia abs which one you use? I am looking at iHerb but not sure which one. Thank you!

Jennyjenny2 profile image
Jennyjenny2 in reply to Ashe32

Hello Ashe

We now get it from The Grove. Just google ‘the grove Ayurvedic mucuna’. It’s only 5% levodopa but it’s organic and they use the whole bean. It is more expensive but my husband says it’s much more palatable than the previous one. He thinks it helps with his anxiety, not forgetting the coronet helping also. The problem being we’re not exactly sure which one as he started both around the same time...maybe it’s both.

Good luck with it.

Ashe32 profile image
Ashe32 in reply to Jennyjenny2

Thanks so much! What is coronet? Is that something else too?

Ashe32 profile image
Ashe32 in reply to Jennyjenny2

Found it and ordered, thank you!

I use it twice per day, approximately eight hours apart.

Interesting Jim. My husband didn’t seem to get any benefit from Madapar when first diagnosed (with LBD initially because of severe apathy). He was attending the Movement Disorder Clinic at the Royal Melbourne Hospital in Australia. When he used the PKG Wearable Device, it showed that in his case Madapar worked only marginally for a short time, and then it stopped working altogether. He felt no change at all. It fits with what the nurse told you, although in my husband’s case it was extreme.

We have just started the hat, so nothing to report on it yet.

Ashe32 profile image
Ashe32 in reply to gwendolinej

Please report back 😊

As you k know buddy, Im a big fan too. I share all those worries about placebo effect. I'm not taking B1 (yet) and I'm on 24hr pramipexole instead of sinemet. And I've changed my diet and exercise routine to keep Sue company.But my experience is similar to yours. I get a bit frustrated it isn't even better. I still drag my foot occasionally on walks, get occasional tremors trying to hold piano notes, and stuff

But overall. MUCH better. Particularly less fatigue, hands, fingers and toes which I don't think about cos they're normal, faster typing both hands, phone held steady left hand, no brain fog, all day gardening

I think the well red are expensive now they are made in China instead of hand made in tasmania, but they are well made and the best 800 euros I've spent since diagnosis

For now.

It looks to me like the Coronet Duo was designed to compete with the Vielight Duo device, although Well Red doesn't mention it on their site. The Coronet Duo is a third the price. Both claim to have very good LEDs, safety features (adjusts if temp too high), and both have programmable (changeable) timing and pulsing. I believe that the Coronet has more LEDs (80) covering much more of the head. Both switch between 2 wavelengths, etc.So, looking at it that way, the Coronet is a great deal. Of course there are lower-priced options. Some have made their own with $100 or so in parts, but they wouldn't have many of the features and benefits.

I've been looking at buying the Vielight, but just went ahead and ordered the Coronet Duo. Thanks for providing your info.

JerMan22 profile image
JerMan22 in reply to JerMan22

I have some actual specs from Well Red! When I purchased one I also emailed them and asked a few questions about the power of their LEDs. They responded by sending me the specs for it. They didn't ask me to keep it secret, but it's a PDF, which isn't easily shared here. So, if you're a nerd like me and you want the details, let me know and I'll get it to you somehow.

sharoncrayn profile image
sharoncrayn in reply to JerMan22

Please send me the "specs" PDF in a PM if you can. cut and paste.

Some support group members are interested in comparing vielight to coronet specs which are not available on the website. I think we might round up enough members to have a small case study comparing the 2....... thanks

sharon

faridaro profile image
faridaro in reply to sharoncrayn

Not sure if you can compare vielight with coronet as vielight has a nasal applicator along with the headset and if I remember correctly coronet covers only head, could be wrong though.

sharoncrayn profile image
sharoncrayn in reply to faridaro

Many differences between the two.

It would be a comparison case study of effectiveness, not specifications.

JerMan22 profile image
JerMan22 in reply to sharoncrayn

Ok, I give up trying to send any file to you with a private message. Here you go:

Coronet Duo's light specs
JerMan22 profile image
JerMan22 in reply to JerMan22

... and here...

Coronet Duo's light specs 2
JerMan22 profile image
JerMan22 in reply to JerMan22

I just received my Coronet Duo! That was fast - just about a week from Australia. As a retired mechanical engineer, I'm impressed with their overall design. It is made primarily of an aluminum open-air frame (no surrounding plastics to impede heat dissipation). The thin aluminum, while not very robust, does a fantastic job of keeping it cool and allows them to put a lot of power out through the (80!) LEDs without overheating the wearer's head. 😰 It has a heat sensor to ensure that the temperature doesn't get too high. And, a small processing unit containing all of it's smarts is on the top-center. It looks like I can control some of the operating parameters with an Android app and Bluetooth. The whole thing is very light (pun intended).

Unfortunately, there is a little custom fitting that I have to do before I can fully experience it myself. I'll report back with any and all brain frying and - hopefully - help with symptoms.

jimcaster profile image
jimcaster in reply to JerMan22

Good luck! I'm glad you received it so soon.

sharoncrayn profile image
sharoncrayn in reply to JerMan22

3 members are getting vielight units for upcoming "non-blinded, semi-random, non-sham case study (n=3). should start June 1. no duo coronet users yet.

sharoncrayn profile image
sharoncrayn in reply to JerMan22

some debate on just using J/cm2 to measure the intensity of the dose (power/beam area x time). for the most part, difficult to compare across various units. For example, Vielight does not use 670nm with any of its neuro models, 20 minute cycle with 810nm vs. 12 minute, etc.

JerMan22 profile image
JerMan22 in reply to sharoncrayn

For these and other reasons, a "case study of effectiveness" you previously suggested would seem to have the best chance of producing useful comparisons.

sharoncrayn profile image
sharoncrayn in reply to JerMan22

the earlier Naeser Boston VA study mixed photo medex helmet, and Vielight internasal units (630/810), 28 minute treatment, 2 days/week. don't ask me why.

"The LED helmet from Photomedex, Montgomeryville, PA will be used. 18 LED pods are in the helmet. Each LED pod: Pod size: 19 cm2 Power output: 692.5 mW Power density: 36.5 mW/cm2 20 NIR diodes, 830 nm and 4 red diodes, 633 nm. 1 J/cm2 = 30.4 sec"

this particular study (San Francisco VA, 2021) was a failure ---Transcranial Photobiomodulation to Improve Cognition in Gulf War Illness

researchgate.net/publicatio...

sharoncrayn profile image
sharoncrayn in reply to JerMan22

thanks

Jim, do you have the tremor type of Parkinson's or the rigid type?

jimcaster profile image
jimcaster in reply to Zardoz

Rigid. I have never had a resting tremor.

BlueHawaii profile image
BlueHawaii in reply to jimcaster

Lucky you. I have always had tremors, and hate them. But then what is to love about this disease!

I'm tremor dominant.... botox helps, but i bought the red hat and use full body light therapy.... praying it helps

Good luck. I hope it helps too!

My husband has been using one for a few months now too but hard to say if it’s working as he has had other changes at the same time.

I just plopped down $776 USD and ordered one. Thanks for the reviews and the link - JG

jimcaster profile image
jimcaster in reply to reedboat2

Good luck! Let us know how it goes after a couple of months.

JerMan22 profile image
JerMan22 in reply to reedboat2

Me too!

So pleased Jim the red light hat is working for you! As you all know I am a big fan and as I sit here typing this my husband is wearing his. He uses it between 30 and 40 minutes twice a day. I think the coronet is less time. We might move to this when his Tasmanian bucket wears out or breaks. As you say what works for one person might not help another but it might just! It is worth trying it to see if it helps. My husband can still type, write cook etc and do most things albeit a little slower, it has helped definitely been a help, plus broccoli and B1. He does take other supplements too.

jimcaster profile image
jimcaster in reply to Zella23

Thanks, Zella! Your post from 6 months ago and your husband's beautiful art really stand out to me. The beginning of your post is what caught my attention:

"Since late September my husband has been using the Red Light therapy twice a day. He has gone back to his pen and ink drawing which he hasn’t done since he got PD."

I believe the red light may help with his dexterity in addition to apathy.

Zella23 profile image
Zella23 in reply to jimcaster

So happy my post helped you! I couldn’t be more pleased you never know till you try something! He still spends hours drawing.

I have been experimenting with sinemet for months, with long periods on it and periods of several weeks with no medication. It is now clear to me that I get no short-term response i.e. within hours. It only starts working after several days at 600mg/day. Similarly I get no wearing off within hours. Even after 24 hours without sinemet my symptoms (tremor) are no worse. But after 2 days or more the benefits wear off and the tremors get worse again.

GioCas profile image
GioCas in reply to dwell

I agree!

parkinson.it/farmaci/effett...

jimcaster profile image
jimcaster in reply to GioCas

Wow! Thank you for sharing this. I was aware of a study from Africa suggesting that there was no reason to delay sinemet, but I was not aware that a long term benefit of sinemet was also found. I encourage you, Gio, to make a separate post regarding this study. This is extremely interesting and important.

jeffreyn profile image
jeffreyn in reply to jimcaster

"Approximately three months ago, I asked if Sinemet confers residual benefits. Some of you said yes and one of you provided a link to a study suggesting that there is a long term benefit."

The circle is now complete.

healthunlocked.com/cure-par...

I agree with you that the study is both interesting and important, and that the short Italian article about the study, that Gio linked to, is worth highlighting in a thread of its own.

Hi Jim, really sorry to burst your bubble... But my money is on a combination of your exogenous dopamine levels (if I recall correctly you are taking large doses), endogenous dopamine levels, and perhaps some additional buffering effect. But it is easy to test my theory - stop taking c/ l for a week or two then see how that red light hat is working for you.

jimcaster profile image
jimcaster in reply to Levod

I have thought about doing that. I have recently reduced my dosage slightly from 2 pills twice a day (sometimes three times a day) to 1 pill three times per day.

One thing which is worth adding is that I do not believe the red light is solely responsible for the improvements which I have enjoyed. There's no doubt in my mind that sinemet is vital to me. However, I think it's very possible that the red light provides a supplemental benefit like exercise, B1, or any number of other things we are all experimenting with.

The last thing I want to do is lead people on. On the other hand, I don't think I want to stop sinemet cold turkey. I readily concede that it may be placebo effect, it may be dopamine levels , it may even be some combination of factors. I think there is some benefit, BUT I may be dead wrong. I definitely don't want to be the poster boy for red lights, but I did want to share my experience and let everyone decide for themselves.

WinnieThePoo profile image
WinnieThePoo in reply to Levod

This is a little counter-intuitive. This forum is full of "on-off" talk with levadopa supplementation. I'm not taking levadopa systematically yet ( a few macuna on occasions) since my neuro started me on Pramipexole - but my experience of my Dad was that his levadopa (sinement 25/100 QDS) wouldn't carry him over for 10 hours in the way Jim described his handwriting improvement. Dad couldn't get out of bed at night until they added a rotogodine patch.

And I agree with Jim - it's not a replacement for the motor symptom drugs. I am still on pramipexole ER 1gm a day, and as noted above have residual motor symptoms. But they are better than they were. Significantly. And I just feel better. Mentally - attitude and sheer unawareness of PD, and physically - No tingling , numbness, toe curling, muscle aches. As well as motor benefits.

One word of caution I like to keep repeating is that the limited research in Australia found better results with those more recently diagnosed than those who had PWP for a longer time

You said you wear your red hat twice a day. For how long?

jimcaster profile image
jimcaster in reply to BlueHawaii

24 minutes each time. The "duo" is red lights for 12 minutes and then infrared for 12 minutes. It automatically switches from red to infrared and automatically turns itself off. It also has an app which you can install on your phone to see how much time remains in your session.

rescuema profile image
rescuema in reply to jimcaster

Hey Jim, have you ever experienced any headache or dizziness from using your Coronet?I ask because I've been experimenting with several red light devices for a while now and using it on my head gave me some interesting effects, similar to getting too much sun on my head. Though I found I was able to gradually increase the duration, now keeping around 15minues to be cognizant of the redlight biphasic dose response.

jimcaster profile image
jimcaster in reply to rescuema

No, I have not experienced headaches or dizziness. At the very end of my 24 minutes, my scalp feels a little warm, but it's not uncomfortable at all.

rescuema profile image
rescuema in reply to jimcaster

That's interesting. It's probably because my devices have much stronger irradiance so I had to adjust for less duration for the appropriate Joules dosage. Nevertheless, I'm still experimenting and a placebo effect or not I think it helps my sleep.

JerMan22 profile image
JerMan22 in reply to rescuema

When you say that your "devices have much stronger irradiance" what are you basing that on? The Coronet has an open air design, which allows it to put out a LOT of light without getting too hot. From Well Red's site:

"Well Red Coronet, has an open frame design that is the most efficient way of dissipating the heat produced by the high output LEDs. Other more closed designs have plastic cosmetic mouldings which could cause the heat to build up to uncomfortable levels. This heat build-up forces designers of other devices to limit the available light output to a much lower level in order to keep temperatures down. This became obvious to us when we compared the light output of the Coronet with that of a well-known device costing 2 ½ times as much. The Coronet puts out 34 times as much near-infrared light as the more expensive device because the heat produced is rapidly dissipated."

The "well-known device" mentioned is probably the Vielight Duo, which costs around $2500AU. They don't mention it here, but the Coronet's design also uses an exposed aluminum frame, which also acts to dissipates the heat. The LEDs being used are much, much more powerful than those you can easily get "off the shelf". In my previous life I was a mechanical engineer among other things, so this kind of out-of-the-box thinking gets me excited. I can't wait for mine to arrive. 34 times the light!!

rescuema profile image
rescuema in reply to JerMan22

I'm basing it on a simple irradiance measure fact. One of my 100W device outputs around 150 mw/cm2 from 6" away, so I have to hang it up high to increase some distance to lower the irradiance for appropriate lower Joules dosage for head use vs for the body. You can't even look at them because it's simply blinding. You cannot use such devices irrespective of heat generation for close proximity use near the skin without considering/calculating therapeutic RL dosage. With red light, stronger does not equate to better depending on your specific application.

I certainly hope you get a great result from trying yours!

JerMan22 profile image
JerMan22 in reply to rescuema

This is fascinating. You're coming at it from a completely different level of power and using it on both the brain and the body. I might be asking more about what you're doing if the Coronet Duo isn't enough! A 3 week wait (possibly more) until I get it.

rescuema profile image
rescuema in reply to JerMan22

Yes, you might be interested in getting a body panel as well to penetrate the gut/body to affect your microbiome. I'm aware others also attempt to use Coronet on the abdomen for the benefit.

The additional benefit of Coronet is that you could pulse it at 40hz that has an additional therapeutic effect, possibly on alpha-synuclein/Lewy bodies. Check out this fascinating article.

scientificamerican.com/arti...

ncbi.nlm.nih.gov/pmc/articl...

Alternately you can try listening to this annoying 40Hz sound frequency (need a headphone or a good subwoofer) combined with RL therapy.

youtube.com/watch?v=_6A-Rg6...

chartist profile image
chartist in reply to rescuema

The following article link, mentions some side effects which include headaches:

news-medical.net/health/Lig....

Here is a quote from the article :

>>> ' As a consequence of light therapy, patients can complain of irritability, headaches, eye strain, sleep disturbances and insomnia. Mild visual side effects are not unusual, but remit promptly. Therefore determining the appropriate dose and timing of light is essential in order to diminish the occurrence of such side effects. ' <<<

Art

rescuema profile image
rescuema in reply to chartist

Thanks Art. I'm aware of all the side effects. Interesting that I get a similar effect from it in 20 minutes as if I've been out in the sun gardening for hours - but then RL is just a part of the sun's full spectrum.

I was asking Jim because I've been wondering specifically about Coronet's effect on PWP experiencing the therapeutic effect through possible hormesis.

BlueHawaii profile image
BlueHawaii in reply to jimcaster

Thank you so much!

Jim, I wanted to share my experience of my first appointment of testing for DBS approval. Not so much the appointment but that I was required to take my meds an hour before the appointment which would be 7 am. Mind you for 9 years I take my first dose before I get out of bed, 5 or 5:30am. OMG, what an eye opener this was. I could barely move to get myself ready ect. I made it to 6:30am and took my meds. Within 15-20minutes I could literally feel the dopamine going through my body from my head to my toes and how I felt “normal”. I’ve never not taken my meds and this made me realize how bad I am. My next appointment I am required to not take any meds before or even 12 hours prior. I think I will not be able to move. My husband may have to carry me . When others have said they felt fine for several hours not having to take their next dose, they are very fortunate. On your red hat, when you ordered it , how long did it take for you to receive it. Take care. Karen

jimcaster profile image
jimcaster in reply to Kwinholt

If I recall correctly, it took about a month from the time I ordered it until I received it. However, we were in the process of moving, then we went on extended vacations to Mexico, and I wound up leaving it in the box for over a year before we finally assembled it and I began wearing it in January, 2021.

I wonder how the coronet red hat differs from my far infrared sauna.

jimcaster profile image
jimcaster in reply to kaypeeoh

Good question. The only difference I can think of is that the hat may more directly focus on the brain, but I have no idea.

rescuema profile image
rescuema in reply to kaypeeoh

Completely different for intended effects.

kaypeeoh profile image
kaypeeoh in reply to rescuema

As I understand it the FIR waves travel farther and deeper into tissues. Supposed to help inflamed muscles/joints but I don't know whether it would affect alpha synuclein.

rescuema profile image
rescuema in reply to kaypeeoh

An infrared sauna is heat therapy, and may indeed affect alpha-synuclein through modulating protein homeostasis via a pathway utilizing Heat Shock Proteins as a therapeutic target. In fact, you want to avoid using Red Light therapy in conjunction with heat/sauna because heat affects cytochrome c oxidase photoreceptors activity that energizes with light.

The below sites have decent quick summaries of Red Light therapy. There are myriad peer-reviewed scientific studies you can easily find on PubMed as well.

redlightman.com/blog/red-li...

heelspurs.com/led.html

Jim,

Would you consider stopping B1 or HDT for 2 months in order to get an idea of what exactly the RLT is doing for you and what if anything the B1 is doing for you?

Art

rescuema profile image
rescuema in reply to chartist

I see it as an important piece of the puzzle, and I believe Jim intuitively senses this. You don't want to limit sun or nutrients from a plant and expect a good result.

While it would be scientifically interesting to measure the incremental effect, I wouldn't advise it while Jim is experiencing good progress.

Zella23 profile image
Zella23 in reply to rescuema

I quite agree that it might be a contributory factor though in helping with symptoms. My husband cut down on C/L as he felt he didn’t need as much. Too much and the dyskinesia comes back! Since all his interventions the dreaded toe curling is nowhere as bad and leg dystonia is much improved.Doesn’t really want to stop doing anything as it takes a long time to build everything back up to acceptable again! It’s such a changeable condition my husband is happy where he is! He did get fed up with wearing his red light hat and cut the time down for a while. I suddenly noticed he was back up to time again so think he did see a difference!

rescuema profile image
rescuema in reply to Zella23

When possible, I'm also a fan of cutting down on c/l while possibly adding neuroprotective measures such as citicoline (potentiates dopamine, see below link), tyrosine, 5htp, etc. to go with l-dopa. Not easy to find a good balance since it varies per individual, but it's worth the bother to conceivably slow the progression to extend good QOL. You're absolutely correct to mention that "it takes a long time to build everything back up" to manage to get back to where you were once derailed, and the body responds best to holistic measures of all components working together to possibly heal. This even applies to HD B1 (a spark to an engine) - you can't expect a good result when missing required co-factors or other nutrients and enzymes to ramp up ATP and keep the engine running.

healthunlocked.com/cure-par...

Juliegrace profile image
Juliegrace in reply to rescuema

For whom are you a fan of cutting down on c/l? As I recall you are neither a PWP nor a caregiver for one. In your opinion what dose do you recommend and when?

rescuema profile image
rescuema in reply to Juliegrace

Good God Julie, lay off with your tiring negativity - it must be tough to live as such. I certainly am not required to repeatedly remind you why I'm here nor reveal my social circumstances unless you're plagued with an unfortunate memory loss. I understand you must be obsessed with your uncalled belligerence following me around posting the same nonsense like a groundhog day but this will be my last reply to you since being polite hasn't worked. Skip my posts if you can't stand my recommendations. While you're comfortable with your PD trajectory, try not to discourage others from endeavoring to flatten their curve.

GioCas profile image
GioCas in reply to Juliegrace

J and R,

the goddess Eris is always at work, but never present in the first person.

IMO an obvious case of a hidden instigating and divisive third party.

A case of high diplomacy (Before the blood runs) :-)

Solution, plus possibly private communication between the two of you,

remember there can be no discord without a previous mutual esteem.

The lie always follows the truth.

Communication will lead to understanding that it is the universal solvent that erases everything.

(good thing to remove the posts first).

With friendship and respect for both.

Gio

mythus.fandom.com/wiki/Gold...

Millbrook profile image
Millbrook in reply to rescuema

How much tyrosine do you take and how does it help?

There was another post on tyrosine but she did not respond to request for more information

rescuema profile image
rescuema in reply to Millbrook

The typical dosage used for PD is 500 mg 2x daily.clinicaltrials.gov/ct2/show...

L-tyrosine at a dosage of 1000 mg daily (500 mg 2x daily) is safe and well tolerated in subjects receiving dopamine therapy and other anti-Parkinson’s medication.

michaeljfox.org/grant/effec...

L-tyrosine is the natural supplement (precursor) that produces dopamine. It is readily taken into the brain using specific transporters and enters the Nurr-1 complex in the dopaminergic neurons. The enzymes of the Nurr-1 complex convert the tyrosine to dihydroxyphenylalanine (DHA) using tyrosine hydroxylase. The DHA is then decarboxylated using amino acid decarboxylase to form L-dopamine.

ncbi.nlm.nih.gov/pmc/articl...

asclepiusopen.com/clinical-...

Millbrook profile image
Millbrook in reply to rescuema

Thank you for the information. Does it help you?

Good to know all this- another weapon in my Arsenal

rescuema profile image
rescuema in reply to Millbrook

Here's something that may help you. I always read supplement reviews on Amazon or elsewhere with thousands of testimonials to help gauge what to expect. Read both the good and the bad to anticipate the effects and search a query word (such as "dopamine") in the Q/A section or reviews to narrow them down. Tyrosine is well understood to help with dopamine production, addictions, depression, etc. Some people notice the effect right away, most take 4-6 weeks, but for some, it causes anxiety, agitation, and headache (may need 5-htp for serotonin smaller 1:10 ratio). Try it. I certainly hope it helps your husband. amazon.com/NOW-Supplements-...

Millbrook profile image
Millbrook in reply to rescuema

Thank you very much. God bless

jimcaster profile image
jimcaster in reply to chartist

Thanks, Art. This might be selfish, but I am sticking with my "If it ain't broke, don't fix it" theory. I know there's nothing very typical about Parkinson’s so I have no idea how I compare with a typical PwP three years after diagnosis, but I honestly feel completely normal about 99% of the time. I have no idea why I feel completely normal, but I'm not inclined to change anything right now.

laglag profile image
laglag in reply to jimcaster

Hi Jim. In addition to red light therapy, what other things do you take or do for PD, ie. exercise, supplements, meds, etc?Thanks

Debbie (laglag)

jimcaster profile image
jimcaster in reply to laglag

Hi, Debbie. Take a look at my profile. That said, I don't hold myself as a role model.

laglag profile image
laglag in reply to jimcaster

Thanks, very detailed! I think you're doing the right things.

I just got my red hat a week ago and I'm using it religiously and praying. I also go to do body red light therapy called novothor. I was shocked when i found one near me in the location search. Best of luck and let's ask pray that a cure is coming soon.

Can I buy the red hat anywhere in UK?

jimcaster profile image
jimcaster in reply to Lorraine33

I don't know, but you can order one from healthunlocked.com/api/redi...

Zella23 profile image
Zella23 in reply to Lorraine33

Haven’t found anything in the U.K. had to send for it from Tasmania.

Hi jimcaster,I’ve been using a coronet duo for about two years.

I wrote extensively about the experience in this thread:

healthunlocked.com/parkinso...

I still use it once a day (I occasionally miss a day) and still perceive the benefits, mainly dramatic reduction in malaise. The benefits were very noticeable when I started and though the rate of benefit tapered off the level of benefit remains. It’s still working, in other words, but it’s just become background radiation, so to speak.

jimcaster profile image
jimcaster in reply to Drungarius

Excellent. I'm glad it was beneficial to you and that you are still using it three years later.

I have a question. Are the hair growth helmets like the red light therapy hats?

jimcaster profile image
jimcaster in reply to slimweiss

Good question. I don't know, but if my bald spot shrinks, that would be an added bonus. 😁

slimweiss profile image
slimweiss in reply to jimcaster

Ha ha yes it would!

Thanks, Jim, your post finally made me pull the trigger and order the Duo Coronet. I have been sitting on the fence for some time considering this purchase.

jimcaster profile image
jimcaster in reply to Hiawatha1

I hope it works for you. It's not cheap, but there doesn't appear to be a health risk, so in that sense, I thought the cost - potential benefit was worthwhile.

Millbrook profile image
Millbrook in reply to jimcaster

I believe that red light therapy really does work. But thanks to Jim, I ordered the Coronet even though I have the vielight. His sense of smell improved but did not completely return using the Vielight. I felt that the coronet covered more of the brain and had more lights than the Vielight. I ordered it on Sunday 16/5 and today 20/5 it has already arrived in Singapore and cleared customs. As Jim mentioned, the potential benefit is worth trying.

Regaining your sense of smell is huge! I asked the Department Chair Biomedical Engineering (local university) to consider making these red hats. The cost is minimal and liability is next to nothing. They were not interested!. Don't know if I want to plunk down $1,000. Are you aware of any other source? I'm tempted to make my own.

abc.net.au/news/2019-02-24/...

I believe the cost from men's shed is 300.00usd

Hi mauigirl. I checked the source you quoted and could not find a price. I'm a buyer at $300 US. Can you provide a contact?

Mrc777@bigpond.com. Mervyn

mrc777@bigpond.com

You can make your own. John Morris 71 made one for his mother at a fraction of the costs.

So glad to hear such good news Jim!!

I've seen studies which indicate that levodopa meds have both a short term positive effect (hours) and a long term positive effect (much longer). Unfortunately I don't have the references readily at hand.

jeffreyn profile image
jeffreyn in reply to ElliotGreen

That's no problem, Gio provided a good one earlier:

parkinson.it/farmaci/effett...

rescuema profile image
rescuema in reply to ElliotGreen

I highly doubt Jim's progress on l-dopa alone, especially given he was on Sinemet last November and the sense of smell returning is a more recent development after RL.

healthunlocked.com/cure-par...

ElliotGreen profile image
ElliotGreen in reply to rescuema

I wasn't suggesting that Jim's progress came from L-dopa alone. I was just saying that there is evidence that L-dopa has a both long-term and short-term beneficial effects.

rescuema profile image
rescuema in reply to ElliotGreen

I know you didn't Elliot. I do wonder how much of the lasting micrographia improvement may be due to levodopa, but if the l-dopa didn't affect it for 12-18 hours off during the initial months of starting the med, then I would tend to believe this would be another indication Jim's doing something right to affect his curve more recently.

Ordered and waiting for its arrival! Thank you for sharing your experience. Dr Norman Doidge talks about red and far infra red light in his book The Brain that Changes Itself.

Good luck! Keep us posted.

I posted this on a different thread. If any of you read this book I talk about see below. I just bought a book written by Ari Whitten called "The Ultimate Guide to Red Light Therapy". It explains a lot of things I had questions on.

i.e. Details on what devices to look for as far as size, wattage, dosing, how far to stand from the device to get the best use, etc. You can over or under do it. In layman terms he explains how to do the calculations. Might be a good read if you want to get the most benefit.

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