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

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Coronet Duo (Red Light) Success?

jimcaster profile image
172 Replies

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.

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172 Replies
reedboat2 profile image
reedboat2

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/

reedboat2 profile image
reedboat2

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.

Kwinholt profile image
Kwinholt

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!

Sloboy profile image
Sloboy in reply to jimcaster

Thank you Jim for any Information on your progress. I may spend the money to try giving my husband back some improvement on things. Anything!! He has just recently within a few days worsened with swallowing, speech, movement. I will take anything that will help him get through this in more comfort. Please report good things as you use your red light. I have been watching anything I could find on it and found they say on their website that he could still use this with DBS in the past. Now I just have to convince him it is worth the money, not knowing if it can still help him. Thank you for your reporting and all hope it improves things greatly. Sloboy's wife, Jean.

Sloboy profile image
Sloboy in reply to Kwinholt

hi there ...I am Jean, Sloboy's wife. I just wanted you to know I have been checking out the red light hat for my husband because I waanted to know if he could use it even though he has had the DBS surgery in 2011 Jan. It gave him the ability to use his wood working tools for some years but now has had to give them up with his balance and poor walking ability. He uses a walker and wheel chair. Just the last few days his swallowing has worsened and I still would like to try the red light for any improvement. I just wanted you to know the website for the Coronet says, Yes, it is OK for DBS persons to use also! yea!!! I still may order it even though it is very pricey. Jean.

rancsikanna profile image
rancsikanna in reply to Kwinholt

Hi, have you tried red light?

Kwinholt profile image
Kwinholt in reply to rancsikanna

no I have not tried the red light therapy.

Jennyjenny2 profile image
Jennyjenny2

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!

nychengm profile image
nychengm in reply to Ashe32

How do you find it so far please?

jimcaster profile image
jimcaster in reply to Jennyjenny2

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

gwendolinej profile image
gwendolinej

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 😊

JayPwP profile image
JayPwP in reply to gwendolinej

Please report your observations Gwen

gwendolinej profile image
gwendolinej in reply to JayPwP

I will 👍

WinnieThePoo profile image
WinnieThePoo

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.

JerMan22 profile image
JerMan22 in reply to WinnieThePoo

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.

AmyLindy profile image
AmyLindy in reply to sharoncrayn

I’m about 8 mos out from this experimental kick off… is this the best place/ way to see status? Reading through posts, here?

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

nychengm profile image
nychengm in reply to JerMan22

How do you find it so far please?

pgodefroy profile image
pgodefroy in reply to JerMan22

Please send me the "specs" PDF in a PM

AmyLindy profile image
AmyLindy in reply to JerMan22

How’s the Red Light therapy going?

Zardoz profile image
Zardoz

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!

beccainnyc profile image
beccainnyc in reply to BlueHawaii

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

BlueHawaii profile image
BlueHawaii in reply to beccainnyc

Good luck. I hope it helps too!

Erniediaz1018 profile image
Erniediaz1018 in reply to beccainnyc

did you get the red light and did it work

showny profile image
showny in reply to beccainnyc

where do you get full body light therapy? I am in the USAjust started to use the coronet yesterday. thanks. Monica

LAJ12345 profile image
LAJ12345

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.

nychengm profile image
nychengm in reply to LAJ12345

How do you find it so far please?

LAJ12345 profile image
LAJ12345 in reply to nychengm

He seems to enjoy it. Still does it twice a day. Not sure whether it improves things. He did do very well for a long time after starting it, but has recently had a setback which is unlikely to be anything to do with the coronet.

nychengm profile image
nychengm in reply to LAJ12345

Thanks for your quick reply and hoping he will improve soonest!

reedboat2 profile image
reedboat2

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!

kaypeeoh profile image
kaypeeoh in reply to JerMan22

Me three. I ordered a book on red light therapy. If it doesn't dissuade me I planned to order Vielight. But my treadmill just died. It was like shooting my best horse. A new treadmill might cost more than the Vielight. I'll have to decide which I need more.

AmyLindy profile image
AmyLindy in reply to kaypeeoh

Did you end up getting both ? Red light and treadmill- hope so! How’s it working/ going/ doing 🎩 ? Happy New Year

kaypeeoh profile image
kaypeeoh in reply to AmyLindy

We got the treadmill but still waiting on the Vielight.

Zella23 profile image
Zella23

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.

dwell profile image
dwell

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.

Gioc profile image
Gioc in reply to dwell

I agree!

parkinson.it/farmaci/effett...

jimcaster profile image
jimcaster in reply to Gioc

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

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

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

BlueHawaii profile image
BlueHawaii

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...

Discogs_discogs profile image
Discogs_discogs in reply to rescuema

Rescuema, where did you see research on the sound therapy for that particular wavelength?

rescuema profile image
rescuema in reply to Discogs_discogs

It’s mentioned in the posted links above.

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!

Kwinholt profile image
Kwinholt

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.

kaypeeoh profile image
kaypeeoh

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

Fumaniron profile image
Fumaniron in reply to rescuema

I do sauna with medical light chromatherapy daily. Does this mean I shouldn't do the duo red coronet? Even if I space it out by a couple of hours?

rescuema profile image
rescuema in reply to Fumaniron

Yes space it out and don’t use it concurrently.

Fumaniron profile image
Fumaniron in reply to rescuema

Followed your advice and it works well

chartist profile image
chartist

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.

Gioc profile image
Gioc 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.

beccainnyc profile image
beccainnyc

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.

Erniediaz1018 profile image
Erniediaz1018 in reply to beccainnyc

Where’d you purchase the hat? Link please

beccainnyc profile image
beccainnyc in reply to Erniediaz1018

wellred.com.au/

Erniediaz1018 profile image
Erniediaz1018 in reply to beccainnyc

Are you in nyc? If so how was the shipping?

beccainnyc profile image
beccainnyc in reply to Erniediaz1018

3 weeks

nychengm profile image
nychengm in reply to beccainnyc

Hi, are you still using your red hat and happy with it still please?

Lorraine33 profile image
Lorraine33

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...

beccainnyc profile image
beccainnyc in reply to jimcaster

wellred.com.au/

Zella23 profile image
Zella23 in reply to Lorraine33

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

beccainnyc profile image
beccainnyc in reply to Lorraine33

wellred.com.au/

Drungarius profile image
Drungarius

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.

slimweiss profile image
slimweiss

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!

Hiawatha1 profile image
Hiawatha1

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.

Fumaniron profile image
Fumaniron in reply to Millbrook

Excellent! How do the two compare to you? I'll be ordering one of the two in the next week. Thanks

Millbrook profile image
Millbrook in reply to Fumaniron

Hello. Sorry for the late reply. My husband has been using the coronet and taking probiotic PS 128 since May/ June 2021. He uses the coronet 2x a day. We bought the Vielight gamma and alpha in 2019 hoping to restore his sense of smell. It did improve initially but it comes and goes. After awhile we stopped using it. The light points are much few than the coronet but there is an intranasal probe. My husband uses the coronet daily but perhaps I will add on the intranasal probe since I have the Vielight.

I wrote about both in one of my replies. If you click my icon you can read a more detailed account.

Wishing you the best results

Fumaniron profile image
Fumaniron in reply to Millbrook

Thank you very much. I believe the coronet will have a nasal attachment in the next few months. Also, there are concerns that were astutely brought up earlier about concerns of doing IR sauna and any helmet therapy on the same day. It dealt with the activation of cytochrome c oxidase.

Fumaniron profile image
Fumaniron in reply to Fumaniron

Anyone run into issues with doing IR Sauna and red light helmet therapy on same day?

nychengm profile image
nychengm in reply to Millbrook

Hi, just wondering if you still think the coronet is worth it and your husband do find benefits from it still? Cheers, NY.

Millbrook profile image
Millbrook in reply to nychengm

Hi NY. I believe in red light therapy.

I became acquainted with red light therapy when my 14 year old cat was diagnosed with chronic kidney disease. I used a red light panel positioned at his kidneys. When he passed away at 17 his kidney function was normal. He died of heart failure.

Recently we purchased another coronet duo for my 92 year old mother who has been diagnosed with mild dementia. Initially she was resistant and irritable using it. Now she eagerly puts it on because she says it has improved her memory. She can find some of the many things she moves around. 😂

Wonder if there is something that can help her paranoia ? Memantine gave her an allergy and Donapezil, diarrhoea.

In fact I have been toying with the idea of a custom made coronet with 1068 nm which has been successful for dementia in clinical trial.

As for my husband he now uses the coronet only once a day. I wish he would use it twice a day regularly but I guess once better than none.

Obviously he is getting some benefit that he is privy to otherwise he would have dumped it.

For me, as his caregiver, the 2 things that brought about dramatic change were the coronet duo and the PS 128 and I intend to continue with both. Of course prior to that B1, B complex, niacin etc.

I will be adding on PEA when I get it.

Some members have ordered the coronet duo whilst some have made their own; yet others have improvised with red light bulb with both 660 nm and 810 nm.

The improvements that I wrote about almost a year ago have been sustained. So thankful. God is good.

nychengm profile image
nychengm in reply to Millbrook

👍👍👍Thank you!

nychengm profile image
nychengm in reply to Hiawatha1

Hi, did you use it daily still and if it is working well for you please?

Isthistheone profile image
Isthistheone

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.

mauigirl18 profile image
mauigirl18 in reply to Isthistheone

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

mauigirl18 profile image
mauigirl18 in reply to mauigirl18

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

Isthistheone profile image
Isthistheone in reply to mauigirl18

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?

mauigirl18 profile image
mauigirl18 in reply to Isthistheone

Mrc777@bigpond.com. Mervyn

mauigirl18 profile image
mauigirl18 in reply to mauigirl18

mrc777@bigpond.com

Millbrook profile image
Millbrook in reply to Isthistheone

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

ConnieD profile image
ConnieD

So glad to hear such good news Jim!!

ElliotGreen profile image
ElliotGreen

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.

Turnipbarrow profile image
Turnipbarrow

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.

jimcaster profile image
jimcaster in reply to Turnipbarrow

Good luck! Keep us posted.

nychengm profile image
nychengm in reply to Turnipbarrow

Hi, just wondering if your red light helmet is working to your expectations please?

laglag profile image
laglag

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.

JayPwP profile image
JayPwP

Not to take anything away from the Duos.

But for people like me who cannot afford the Coronet or Vielight Duos, or cannot get it due to pandemic restrictions, the below seems like a viable option

healthunlocked.com/cure-par...

JAS9 profile image
JAS9

OK, folks! It's been almost 2 months since I started red light therapy with the Coronet Duo. I'm rather suddenly getting some positive results. To say that I'm excited would be an understatement. I've had PD for 14 years.

To keep this short and concise, I'm just going to list the improvements. I'll provide more detail if asked.

1. Sleeping better (finally!)

2. My doses are taking effect much more reliably and lasting longer.

3. Brain fog is less dense, less often. It had become nearly constant.

4. Attitude is much improved.

5. Balance is improved.

6. Manual dexterity is better. For example, I'm typing all of this. Before this therapy, I had to resort to using a dictation program to write anything this long.

7. Sense of smell is stronger (it's always come and gone over the years, but now it's strong and always there).

Now, there are other things that might be affecting these results. For example, I've been fast-walking for over 5 years. I've been eating a strictly WFPB diet for a little longer than that. Sleep has always been a problem for me, and it's been rare that I've gotten a good 8 hours per night. In the past, when I'd gotten enough sleep, I've always felt better in various ways, and for the last 3 nights I've had good sleep. So, I suppose it could just be that I'm getting better sleep. However, the reason I credit the therapy for all of this is that I haven't felt this good for many, many years. So, is good sleep causing my improvements? Is the therapy "just" helping me sleep better and therefore causing the improvements? Or has something else (a change in supplements?) caused the better sleep? I can't say for certain.

laglag profile image
laglag in reply to JAS9

Wonderful! What supplements/meds are you taking, along with the dosages. Are you doing any other exercising than the fast walking? Where did you get your Coronet Duo and is it the 810 or the 650nm? Sorry so many questions. Sounds like things are really working for you & it's exciting!

Thank you for the amazing info.

JAS9 profile image
JAS9 in reply to laglag

I bought my Coronet Duo from wellred.com.au

The "Duo" model uses both wavelengths by default, although I believe you can change the program via Bluetooth from an Android phone.

From their site:

"The Duo Coronet contains LEDS in two wavelengths – the deep red at 670nm, and near-infrared at 810nm. The program lasts 24 minutes in total, starting with 12 minutes of deep red 670nm followed immediately by 12 minutes of near-infrared 810nm. Both wavelengths are pulsed at 40Hz. At the end of the 24-minute session, the Duo Coronet automatically turns itself off."

I take just one prescription med which is Rytary 245mg x 6 per day. This might seem like a lot, but I've had PD for 14 years, so it is what it is.

My current supplements are:

B12 1000 mg (500 mg x 2/day)

Omega3 DHA (200 mg x 2/day)

D3 2500 IU

Maqui berry extract 60 mg (helps with dry eyes from using the light)

Turmeric and ginger 100mg /250 mg

Cylon cinnamon 1950 mg x 2 / day

B1 (thiamin) 3.5 g/day total

Potassium citrate 99 mg x4 / day

Magnesium glycinate 400mg

Fisetin 200 mg/day (flavonoid antioxidant which gets past the blood-brain barrier)

The only exercise that I'm consistent with has been fast-walking. I average about 1.5 miles/day. I do a little strength training, dabble with Qigong.

laglag profile image
laglag in reply to JAS9

Thank you much! 🥊

rescuema profile image
rescuema in reply to JAS9

Hi JAS9

While you fast-walk, do you usually wear a hat or would you say you get decent sun exposure between 10 am to 3pm?

I noticed that JP doesn't wear a hat when fast-walking in South Africa with long hours of strong sunlight, but I wonder how many PWP wear a hat or fast-walk with inadequate sun exposure as in the forever gloomy UK or elsewhere further from the equator? I'm curious because you've been fast walking for 5 years and still experienced noticeable benefits from using the red light.

Sleeping better - yep that's the first thing I noticed for myself, and I always wear a hat while walking outdoors covered up and mostly when the sunlight is lower.

ncbi.nlm.nih.gov/labs/pmc/a...

pubmed.ncbi.nlm.nih.gov/173...

journals.sagepub.com/doi/10...

JAS9 profile image
JAS9 in reply to rescuema

In general, I don't worry much about hats, and I think it's important to go out in the early morning and expose my head (with eyes closed) to the sun in order to set my inner clock. But I do wear a light hat and sometimes sunglasses when I walk during the day, especially in the summer.

rescuema profile image
rescuema in reply to JAS9

I get my morning sun through my east-facing window which wakes me up but mostly I do the same. Most people probably don't get enough sun exposure during the outdoor walks so would still benefit from RL.

nychengm profile image
nychengm in reply to JAS9

Hi, happy for you that it was working for you! Just wondering how often and how long you use it please? As 9 months passed, is it still working well please? Thank you!

JAS9 profile image
JAS9 in reply to nychengm

I do still believe that it's part of what's helping. My schedule for walking & RLT:

8 am: Fast walk (20 minutes,1/2 mile)

8:20: Redlight & NRL session (24 minutes)

9:30 am: Fast walk (20 minutes,1/2 mile)

9:50; Redlight & NRL session (24 minutes)

2 pm: Fast walk (20 minutes,1/2 mile)

2:20: Redlight & NRL session

(The afternoon walking and RLT session can sometimes start later, depending on the temperature. Also, about twice a week, I'll give myself a day off or a lighter schedule)

nychengm profile image
nychengm in reply to JAS9

Thanks very much for your update and you have a good weekend!

MissRita profile image
MissRita

Just ordered mine!! ❤️🤗🙏🏼

nychengm profile image
nychengm in reply to MissRita

How do you find it so far please?

Propertytyphoon profile image
Propertytyphoon

Hi Jim, I just stumbled across your thread about the Coronet.

Very useful, thank you.

I am part of a small PD support group called No Silver Bullet and we recently had Catherine Hamilton speak to us ( recorded and posted on our youtube channel youtube.com/channel/UCN2A0v... )

We also had Dr Lim of Vielight talk about his device, which has the advantage of a nasal probe.

I prefer Well Red's device and understand that Catherine will soon be adding a similar probe, so I and a number of others in our group intend to buy one.

Thanks again for sharing

jimcaster profile image
jimcaster in reply to Propertytyphoon

I just watched the entire interview with Dr. Hamilton. It is FANTASTIC! I hope it is OK that I made a separate post to highlight it. In my opinion, it's a must see for anyone diagnosed with Parkinson’s Disease. THANK YOU for sharing it and for your work with No Silver Bullet

Propertytyphoon profile image
Propertytyphoon in reply to jimcaster

Cheers Jim much appreciated and post away...

No Silver Bullet are PwP sharing for PwP, much like this amazing forum.

We started by accident after a couple of us 'met' on a zoom course by PD nutritionists Dr Geoffrey & Lucille Leader- in a nutshell, we were connected by the drive to do more than just pop meds to fight this. So a WhatsApp group became a forum on the App Slack, where, much like this but in a much more informal environment IMHO, we share info.

We decided to have 2 zoom sessions a month- 1 an informal chat and the other speakers with topics that interest members ( HDT/ Jimmy Choi/Lucy Jung with her CUE1 device/ Lucille Leader on Mitracondria / Robert Rogers/ Dr Corrine Jones / Red light Well Red and Vielight/ Joy Milne, the later few recorded and on YouTube)

So glad you liked it and shared it... and sorry about the plug but we just want to reach and help anyone else with PD who feels that our group offers support that they feel comfortable with

Last bit honest...

email us at nosilverbullet4pd@gmail.com if anyone wants more info

Hijack over Jim, thanks and praise from you is very much appreciated

All the best

kaypeeoh profile image
kaypeeoh

I'm still interested in the Vielight. I'm waiting because now I'm trying Memantine for cognitive effect. I have a far infrared tent sauna. I sit in it and it zips up to my neck. For brain help I'd need to sit on my head, I guess. Although Whitten's book says there is an effect from the LEDs on the torso. If the root cause of PD is mitochondrial dysfunction then red light therapy could be a treatment. I take Rytary but don't see that it helps.

AmyLindy profile image
AmyLindy

I am doing it all except Red Hat 🎩 Following w interest. Thanks for the details.

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