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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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
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!
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.
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.
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!
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.
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.
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
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.
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.
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
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.
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.
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.
For these and other reasons, a "case study of effectiveness" you previously suggested would seem to have the best chance of producing useful comparisons.
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
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.
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.
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.
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.
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.
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.
"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."
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.
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.
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
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.
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.
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.
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 wecompared 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!!
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!
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.
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.
>>> ' 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. ' <<<
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.
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
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.
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.
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.
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?
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.
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!
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.
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?
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.
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.
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.
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-...
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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!
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.
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.
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.
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.
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!
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)
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.
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
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
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.
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Red/Infrared light therapy - any short term side effects?
An urgent warning about rytary...
This works for me.
