In Marc's zoom meeting this evening we discussed, and I modelled my red light coronet.
I was asked where I got it from. Although I have posted this before, the supplier is
Red lights on the brain: In Marc's zoom... - Cure Parkinson's
Red lights on the brain
Written by
WinnieThePoo
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This is interesting. Given the previous research findings, I am curious why I haven't read anything about this on any of the PD organization websites. Have I just missed it or is there some specific reason this isn't popular in the US? How has it improved your symptoms?
I think it's relatively new - that is red lights for PD. It's trendy in Australia. There is a trial starting in London. There is plenty of pre-clinical information about photobiomodulation. The obvious question is "how can it help with neurons which are located more than 2cm below skull skin and bone"? There is a trial in France to implant a light emitter into the substantia nigra.
There's lots of interest. It is a safe therapy. The only danger is to your wallet ( a not insignificant danger)
I also have their Therapad which I use on my abdomen - because there is research to show red light affects the microbiome in a positive way. Positive generally, and positive for PD (in mice🙄)
I've only had it 4 weeks. I used both coronet and therapad for a week, and then didnt take the coronet to the UK with me to attend the funerals for 2 weeks, and have been using it for a week since getting back
I am wary of placebo effects, and the 2 weeks in the UK were pretty surreal. The benefits should be long term / slowing progression style.
But I feel good. In particular "brain fog" had been starting to really bother me, and so far I feel it completely disappears with the red lights
This has been a good spell for constipation.
I had just started to have issues sleeping - and that seems much better
It's completely relieved an itchy scalp (nothing to do with PD, but)
Maybe my tremor is easier. It had seemed to be accelerating away, and now seems to be backing off
Early days - and obvious possible placebo effect
Thanks for your response. Great news that it appears to be helping your PD symptoms! I don't know how long the placebo effect lasts so I would love for you to update us over the next several months.
Itchy scalp - aka seborrheic dermatitis - is indeed a PD symptom. It is often located around mouth and nose. Also between the eyebrows.
Maybe. I associated my problems with a bald head, Pyrenean sunshine and collateral damage from low branches while mowing the lawn on the tractor mower. But whatever, the red light therapy definitely fixes it
xenos,
SD as a PD symptom is unexplained by Tanner et al. He raises the possibility (theory) that Malassezia (lipophlic fungus) might be directly contributing to PD.
SD might be related to melanin (see my previous HU discussion on melanin) in that melanin synthesis is stimulated by L-DOPA, which could (might) promote Malassezia invasiveness of dopamine neurons, and contribute to the accumulation of melanin in these neurons.
Seborrheic Dermatitis and Risk of Future Parkinson's Disease (PD), Tanner 2012
Sharon
Thank you so much Sharon. This is amazing. BTW, my neuro did not know about that (and do not care much...).
How come nobody tried anti-fungals against PD ?
I have 3 friends with PD, all three have seborrheic dermatitis... I never realized that this could be a cause and not only a consequence !
tremors are caused by tremorgens. tremorgens are a “group of toxins produced by fungi, e.g. Penicillium spp,. which causes serious muscle tremor”.
How one can explain why this issue was not explored further ;
Among other publications :
Malassezia and Parkinson’s Disease
frontiersin.org/articles/10...
ending like this :
"Once Malassezia's presence in the CNS is confirmed, and a weak Th1 response against Malassezia in PD patients who do not have SD is demonstrated, the key additional proof of Malassezia's involvement will be the efficacy of CNS-penetrant antifungal drugs such as voriconazole in preventing PD or slowing PD progression.
It is imperative to confirm the presence of Malassezia in the CNS, especially in the substantia nigra. Metagenomics is a promising new approach to detect microbes in clinical specimens (152–155), and could be applied to post-mortem CNS tissue to test for Malassezia.
Several important idiopathic diseases have recently been attributed to previously unsuspected infections, such as Helicobacter pylori in gastric ulcers and human papillomaviruses in cervical cancer. In both cases, these discoveries led to effective new treatments. Confirming Malassezia's role in PD would open many new treatment avenues."
x:
because "It is imperative to confirm the presence of Malassezia in the CNS". IOW, you need a sufficient # of PD cadavers to confirm its role in PD.
' could be applied to post-mortem CNS tissue to test for Malassezia." THEORY.
Hi Xenos.
But isn't it related to a lack of niacin, vitamin B3, in PwPs? because I have always solved it with supplementation of b3, low dose, occasionally. Easy and safe.
Thanks Gio - It's worth a try, but seborrheic dermatitis is fluctuant by nature, it goes away even if you do nothing, and then comes back. That makes it difficult to parse between causes and effects...
ok Xenos,
I understand, but I read it from a post by Silvestrov:
scarletnat.blogspot.com/201...?
Here the post:
A greeting from Italy! Gio Interesting fungal/tremor theory. Seeing that the red light helped WTP's seborrheic dermatitis? along with tremor, I found below that red light is indeed used for fungal infection therapy as well.
ncbi.nlm.nih.gov/pmc/articl...
redlightman.com/blog/red-li...
This explains part of why natural sunlight is so beneficial for health - the red and near-infrared light are spectra of natural sunlight and of tremendous benefit to our body, activating cytochrome c oxidase, hormetic benefit, gene expression for cell repair/regeneration, etc. The below 2019 study noted that although vitamin D supplementation didn't show a significant benefit, sunlight exposure drastically lowered the PD risk by 1/50th.
pubmed.ncbi.nlm.nih.gov/306...
Here is a useful simple summary of the difference between red light and sunlight. For anyone without a red light device, try laying in the sun for 20min whenever you can or walk outdoors to reap some benefits.
redlightman.com/blog/red-li...
Wtp hasn't confirmed seborrheic dermatitis. In the first place WTP has psoriasis which is long term in remission, but a more likely candidate. And wtp scalp sees a lot of sunAnd responds best to rembering to apply suncream
And is mostly a lunar landscape of impact craters from low branches while on the tractor mower
“It's completely relieved an itchy scalp”
Sd, psoriasis or other random itchy scalp, the red light apparently helps myriad other people reporting the benefits of red light, even supposedly for hair growth. Long unprotected sun exposure is indeed damaging due to the UV spectrum and even sunlight is most beneficial in hormetic short exposures just as in red light's biphasic dose response.
Here is a study where it appears to work on the retina.
academic.oup.com/biomedgero...
I've been experimenting with this free app called RedMed today. I installed it on my Windows for my huge IPS monitor but it didn't seem to work properly for display and Hz pulsing so I dug out my decade-old Samsung Android tablet to experiment with it- worked better. Then I decided to simply try my iPhone's "Flashlight" app's red light mode, and I swear that wherever I exposed my skin to, it felt tingly afterward. I put all the devices on 100% brightness on airplane modes, of course, for EMF concern.
I saw that there are a lot of studies and read about the benefits for the eyes, and see some RedMed users report benefits. You can pulse the app up to 30Hz along with a timer, but I'd be concerned about seizures for vulnerable people because of the light strobing effect. For the head, a tablet positioned properly on rotation just might work.
These free options lack the 850nm wavelength for deeper penetration but it might be worth a try for people who can't afford the $1K devices, especially if some random DIY red led strip light worked for the original PD bucket hat users.
"If you can find 670nm (a deep red), then grab it. If not, any red LED strip will do. Look for the darkest red you can find.” redlightsonthebrain.files.w...
I think I'll play around with an Amazon device next for 850nm option, but haven't decided which one to try yet since most of the reviews look sketchy.
play.google.com/store/apps/...
app.kiwi/apk/com.martin.red...
On the subject of other red light therapy, I have for years used a simpler cheaper version of this machine, which Lloyd's pharmacy used to sell for treating cold sores
healthcare4all.co.uk/catalo...
Its what stimulated my interest in the idea for PD.
For both the skull and abdomen there is a need to penetrate below the skin, and so I chose powerful devices
I just received my Coronet Duo. Do you think using it 4x / day is too much? Diagnosed 12 years ago so I thought I might need a double dose. Also, any reason not to try to use it on eyes?
It's a question probably better directed to Well Red. But for what its worth
I'm not aware of any adverse effects from "excessive" use
(you will probably find the novelty wears off quite soon though)
I believe it is safe to use on the eyes
I'm not sure the double dose will achieve anything positive. The recent trial, which reported good results, wasn't even once every day.
I would try one morning session one evening session to start with, and review after 4 weeks
I hope it helps you
Hello WinnieThePoo Has the red light helped reduce your tremor and other symptoms?
Is it symptomatic or does it slow PD progression?
How long have you been using the light for?
See my reply to gratitude 60. Early days
My husband started using the duo coronet about 4 months ago. The first improvement for him (after about 3 weeks) was the gradual return of his sense of smell which is still improving as at now. Since then we have also noticed his handwriting is improving. He has not noticed any other improvements at this stage, but all the research I've read says that red light therapy is a slow and steady therapy. From our point of view, we rate the duo coronet as one of the best things we have done since the diagnosis.
I agree 100% and have had almost the exact same experience. 😊
Yes. I think my sense of smell has improved, but it's been a fluctuating tease since diagnosis and it's early days
One of the most peculiar experiences I have had with Parkinson’s occurred last week when I put some garbage in the trash. As I stood over the garbage can, I could smell rotten food and whatever else was in there. I had completely forgotten that unmistakable odor...and it was the most exhilarating and encouraging experience with trash which I have ever had. 😜
I had a similar experience walking the dogs. Our village has mains drainage but processes its own sewage in 3 cascading ponds at the edge of the village, by the vineyards where I walk the dogs. For the first time since diagnosis I remembered that even though they have ducks swimming on them, they are not regular ponds 🤢
Wonderful!
I have held off on posting or commenting because I fear it may be placebo effect, but I believe my red light coronet is helping me, too. I have worn it twice a day for almost two months. During that time, I have not changed my medication, diet, or supplement regimen. My sense of smell has improved slightly and my handwriting has improved rather dramatically. My signature was once illegible. It's now almost back to normal even 13+ hours after my last dose of Sinemet. It is way too early to know for sure, but I am encouraged.
Curiously I hadn't really thought I had a handwriting problem until I thought it was improved by the red light.
How about tremor, any noticable changes?
Not sure . Quite possibly, but it's such a variable thing for me anyway. It's not a light switch instant cure. But I'm inclined to think its helping
I have never had a resting tremor. I believe what we call Parkinson's Disease is a collection of related diseases rather than a single disease, which explains why symptoms vary from person to person and why particular remedies seem to benefit some people but not all of us...but that's just a guess.
I agree with you Jim - it is not one single disease. I bought the coronet for my husband and he started using it around the middle of January, twice a day. After a while, he could not tolerate it and his symptoms got worse, often immediately after use. I then switched to the 670 nm wavelength alone and had the same issue. I am not sure what this means. I have been in touch with the manufacturer and have been advised to continue on the single wavelength. But he is unwilling at this point. On the plus side, I started him on HDT 10 days ago and that seems to shorten his off periods. Maybe it is placebo. Like you, his is the non-tremor kind.
Built my own about 4 years ago but sadly it did very little for me despite using it twice daily. I get the impression that relief of weak cognition is one of its major impacts, but luckily I can’t say that I experience much of that.
I understand it is thought to be more effective for those in the earlier stages of PD (Maybe with a sufficient stock of neurons to rescue), and your PD unfortunately seems to have progressed quite rapidly
Also research suggests that pulsing at 40Hz is more effective than a steady light, and combining both 670nm light treatment and 810nm light treatment is more effective than either wavelength alone
Accordingly the coronet program gives 12 minutes pulsed at 40Hz 670nm followed by 12 minutes pulsed at 40 Hz at 810nm
It's also a good, close fit to the skull
So it may be a bit more effective than simple home made devices
Or it may all be placebo effect
I started using the Vielight Neuro Gamma 2 device about three months ago. The first noticeable improvement was regaining a sense of smell. Second, it seems to have slightly reduced evening tremors (Per Vielights' recommendation, I use the device 20 minutes per session, six days per week - usually just before bedtime). Third, the quality and duration of my sleep seems to have improved. No changes in Rx meds throughout, but I recently added HDT to my regime.
My husband has been using the red lights now for 7 months. As some of you here know my husband loved drawing and since red lights he has really taken up drawing in a big way. His tremor stops when drawing. It wasn’t one of his worse symptoms and appears intermittently often if under stress. The therapy seems to help with mood in a positive way. He also started with the broccoli seed tea, a month later and this has really also helped with many of his PD symptoms.
I m pleased to hear from your post that more trials are going to be targeting this therapy. As you say it’s non invasive and apart from the cost it’s definitely worth trying.
Can you share what symptoms the broccoli tea has helped with? Thank you!
The symptoms that have improved are definitely apathy and a much more positive mood. The resting tremor comes and goes, but doesn’t stop him doing drawings or cooking. He can walk around 3 miles which he does daily. Still gets tired during the day but not as much day time sleepiness. Sense of smell keeps coming back. Initiation of walking has improved gets into his stride more easily, feels some days he is really walking much better. Facial expression has changed. There are quite a few subtle changes that we notice restless legs not so frequent or dystonia in his toes, which were a nuisance when walking.It’s really hard to say whether it’s the combination of red lights plus broccoli tea that have brought about these improvements, maybe they target different symptoms.
He also takes B1 as well and Ceylon cinnamon but took these before the broccoli tea and red lights. We are still experimenting with amounts of broccoli tea.
He cut down on Modapar taking 2 and a half doses per day of 25/100.
I’m glad he’s had great improvement is the broccoli tea complicated to make?
Not really but we were following Wriga s protocol and advice so it’s worth emailing him if you want to try and do it yourself. You need a few bits of equipment to make sure you are doing it as as he describes. If you email him and ask for the protocol he ll give you advice.
Trying to make my own. The duo is unaffordable
Used that unit for 3 months. 2x Per day. No apparent benefits.
Has anyone had a red light coronet from the Dorset men’s shed in Australia please?
The Dorset men's shed device is similar to the "Eliza" bucket light hat described in the redlightsonthebrain blog and is based on LED strips. The coronet is a much more sophisticated device with higher powered LEDs and is programmed and pulsed as described by WinnieThePoo above.
healthunlocked.com/cure-par... This shows a link about discussing red lights, that my husband is using from the Dorset men’s shed in Australia. He purchased it last September and has been using it since.
Thank you for your reply. Would you buy theirs again or wait and put towards the more expensive coronet?
We don’t know so much about the coronet so didn’t consider it really probably as it was a lot more expensive. I think if the red bucket stopped working we might consider the coronet. Difficult to know what to advise you. Some users have found no help and others have. I m also going to ask my son who is knowledgeable and experienced about electronics about making a new one for us when required. There are instructions on the net about making one. Some people here have made one from some of the posts I ve read. Good luck luck with what you decide.
see my longer reply below
see my longer reply below
The coronet duo does cost significantly more. It's a notably high price compared with the Therapad from Well Red. Especially when you add VAT to the price. I think you can benefit from either. The Dorset mens shed style was after all what was originally used and attracted all the interest. That said, if you look at other medical use red light devices, including Vielight, it's much less expensive. I chose it because
I am busy , with a full time job, and have little spare time and could afford it
It is the exact same device used in the (very limited) Australian trials
It uses better quality higher power LED's
It pulses the LED's at 40 Hz at 2 wavelengths on a timer- which current research suggests is optimal
It's probably a better fit and more comfortable, if carefully assembled
LED strips used in the Dorset mens shed version have a shorter life than the LEDs in the coronet
There is a mobile phone app which allows limited control, but in particular the ability to pause the treatment and go to the gate to get the post, and then resume where you left off
Could you please share a link to the Australian trial you mentioned? Thanks!
I use the Dorset bucket hat, its fine to use, quality is great and my 2 boys covered it in stickers. It does the same damn job as the dearer one. And the added benefit is the dearer one is made for profit where the one from Tasmania is made with the profits being distributed to needed organisations.
A cautious update. As I posted on the tremor thread , i have experienced steady improvement in my tremor, and I am experiencing no tremor today in spite of 3 hours holdings a heavy weedkiller sprayer in my left hand. My left side is my affected side.
I am writing this on my smartphone which I am holding unsupported and tremor free in my left hand.
Too soon to draw conclusions but I'm enjoying today
Thanks for the encouraging news. Whether it's just for today or forever, we are all collectively feeling better when any of us are feeling better.
in reply to WinnieThePoo
I am sincerely so happy for you WTP. I am elated to hear that. Hopefully it will help us as it sounds like it is helping you. Hearing your happy news is very uplifting.
Update. "you're very still" said Mrs WTP this morning whilst cutting my hair. Apparently, in the recent past two years or so I twitch and tremor albeit slightly. But not this morningJust saying
😀
Really pleased to read your comments that the coronet is making such a difference. I have just received mine, i have only been using it for a week. Im not sure i have the fit right! The centre at the top seems to get quite warm and its a bit wobbly but if i tighten the perimeter, im worried the lights touch my head? Catherine has been helpful but still not sure its quite right. Can you read while wearing yours? Many thanks
Yes I can read. I work in my office weekdays and practice piano at the weekend
It's just occurred to me my office has 5 bright led white lights above me. I can see the flashing lights could be very distracting in lower light situations
Binday, you've had a whole month now. Anything to report? I'm almost ready to buy one.
What is the maximum usage of the helmet? I have started on morning and one evening session. Very encouraged by my response I have done more than one session at a time. Mr. Lemonade has read though that there is an issue of diminishing returns with overuse. We’ve written to the company to clarify. Any thoughts?
WinnieThePoo in reply to
I haven't heard of over use problems, but the twice daily 24 minutes seems to provide the full benefit. I think duration of use rather than intensity is probably the key. Another week or so under my belt , and PD is a different experience for me
how much does the red light coronet cost?
The coronet duo (which Winnie and I both have) costs 995 Australian dollars, which is approximately 775 American dollars or 640 Euros.
I was chatting with a friend about our experiences and thought it appropriate to share mine with the forum. Which are essentially very pleasing. It would be easy to focus on the remaining symptoms and conclude it wasn't doing much. But that would be to forget my concerns about how the disease was ramping up before I started with the red light hatI feel like I don't have parkinson's anymore - just some of its symptoms. Hardly tired, I worked hard in the garden like I used to. I no longer lie awake for an hour or two around 3am. I don't obsess about PD. I probably have less tremor and bradykenesia than before
Hardly any urinary urgency, hardly any constipation
Overall, pretty good
I can't say for certain that my red light coronet is responsible for the improvements I have experienced during the past three months, but it is the only change I have made. I fully acknowledge that this could all be placebo effect, but in no particular order, here's what I have noticed since wearing the coronet:
1. My handwriting was almost completely illegible. Now, it is normal. I often take my last dose of sinemet at 3:00 p.m. I can write just fine at 8:00 a.m. the next day before my first dose.
2. I find myself using my right hand (the affected side) for all kinds of things which I had previously used my left hand for: Drinking, using the TV remote, etc.
3. My sense of smell has improved slightly and sporadically. It's still poor, but it was nonexistent before.
4. At night, long after my sinemet dose should have worn off, I can perform simple tests the neurologist has me do -- tapping fingers and thumbs together on both hands at equal speeds, moving my palms open and closed like windshield wipers at equal speeds, flipping both hands on my knees at equal speeds, etc.
I can only speak to my own experience and I am not trying to sell the coronet to anyone. Maybe I am getting some sort of residual benefits from sinemet, but my doctor says it doesn't work that way. Maybe I am so desperate to have something work that I am getting some sort of placebo effect. Maybe I am just enjoying the beginning of my third year of the supposed five year "honeymoon" with Parkinson’s Disease. Maybe the improvements have nothing to do with the coronet. I just know that I feel completely normal about 99% of the time.
I have been reluctant to share all of this for all the reasons set forth in the preceding paragraph and I have seen all of us rush to take mannitol and all of us rush to take high doses of thiamine (which I still take) with mixed results. I don't want to give false hope to anyone. At the same time, I think we all joined this site to see what other PwP are doing to improve their quality of life. I THINK the red light therapy is working for me...despite the fact that I look like a complete goofball while wearing it. 😊
Strange old man wearing his coronet red hat.
I guess it's probably obvious that the friend I was chatting to was Jim. I would echo all his comments, particularly about it being early days and a placebo effect being a very strong possibility.My wife would like to add a further, utterly remarkable proposition. I have been replacing the radio in my 2006 Land rover discovery for one which will properly Bluetooth to my phone for both calls and music. It hasn't gone well. Big time. From needing to drill holes in the side of a brand new radio, to having to remove the trim around air bags and the transmission tunnel. I have spent nearly 10 hours on it. The stress had me tremoring a bit more but I remained calm, urbane and charming throughout. Sue says we should have bought the bloody thing years ago
🤣
I'm hanging on your every word!My wife has begun nudging me towards DBS, but I've resisted it, and now this looks like a possible - and much less intrusive - alternative.
Please keep us all up-to-date!
Mr. Poo,
One drawback to LED red light and NIR is that it generates significant oxidative stress in the form of reactive oxygen species (ROS) and this is something that PwP already have plenty of and don't need anymore of. Using potent antioxidants simultaneously like Alpha Lipoic Acid, Melatonin or NAC will increase the effectiveness of the treatment as shown in the San Francisco PBM study this year while effectively reducing oxidative stress. Too many PBM treatments too close together may be more ROS than the additional antioxidants can neutralize.
healthunlocked.com/cure-par...
ncbi.nlm.nih.gov/pmc/articl...
Btw, I woke up and am back to smelling the roses! 🌹🌹🌹 Thank you for the low down!
Art
Your trial results, sir medrxiv.org/content/10.1101...
Thank you very much for sharing Mr. Poo! There were a few surprises in that study that I was not expecting.
One was the fact that they used multiple devices on the head with light directed in the nostrils, light directed at the skull and light directed at the neck. In the PBM San Francisco study they used LED at the neck, but it seemed that their intention was to direct the light toward the brain and not the neck. Perhaps the light spread will still direct some of the light toward the brain.
The second surprise was that they did not use UPDRS at all as that is a standard testing method used in tests of this type to try and give a uniform measure of study results.
The third surprise was the length of the study with continued home use for up to a year.
The fourth and biggest surprise was that they did no testing of gut microbiome parameters at all.
Clearly there was benefit, but this was such a small trial, I'm not sure how much value there is to the results.
Perhaps the head gear in conjunction with FMT may be an option worth considering as the FMT study results were fairly clear even if limited in scope.
Art
Thanks! I was just wondering if I could overdo the red light therapy. Now I know.
Reporting in. It's now been about a month since I got the Coronet. I've been very careful about taking my "light therapy". At first, I was using it 4 times a day, but after a few days, I reduced it to 3. I know almost everyone is using it 2x/day but I've had PD for 14 years so I wanted to give myself an extra push!
There was one fairly major hiccup; I ran out of B1, which I've been taking for over 2 years. After about 2 weeks without it, I finally got some bulk powder, so I'm back on it. I believe that I definitely had more tremors without it.
I've followed the discussions about this therapy causing more oxidative stress and inflammation. I take several supplements to help with this. Melatonin, NAC, B12, and Fisetin. I also take magnesium and potassium to help with deficiencies that might be caused by the HDT as mentioned in this video:
Over the past week, I've noticed intermittent awareness of smell. Today, my sense of smell came back full force. It's kind of overpowering and I'm still getting used to it. As I've mentioned before, my sense of smell had been almost completely gone, with only very occasional returns for a few minutes at a time. My sense of taste has never gone away.
My mood continues to improve, despite the setback with the B1.
My Rytary is lasting a little longer (3 hr 45 min now, 3 hr 30 min before)
When my Rytary is working, I can move a little more freely, but it's hard to quantify.
So, it all continues to improve little by little (except the smell, which punched me in the face this morning)! Oh, and my typing is almost all the way back now. There are very few times during the day that I can't type.
It will be interesting to see what happens after another month now that I have my B1 back.
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