Red light therapy: I am 72 and was... - Cure Parkinson's

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Red light therapy

gregorio profile image
gregorio

I am 72 and was diagnosed about 3 yrs ago. I stopped my meds within months, did not like the way they made me feel, started a Keto diet and went to B1, Macuna and other suppliments. I do not have constipation, dry eye, drooling ar a few other things I started with, I am fairly active , walk a tough golf course 3 times a week. My main symptom is r/hand arm tremor. I decided to have a go at the red light treatment a few weeks ago and my question for the experts is this. I bought a bulb from amazon covering both frequencies, about 80.00 euro/dollars, rigged up a lamp holder and have had about 8 sessions twice a day on my shoulder and the top/back of my head. I have noticed my smell seems to be returning and the pain/stiffness in my shoulder at night in bed is much better. Is this the same treatment as the coranet would give ??

54 Replies

gregorio, You say your major symptom is right hand , arm tremor.

Please advise does this tremor occur while the hand or arm is at rest or when you are doing something with it.

gregorio profile image
gregorio in reply to GymBag

mostly at rest

gregorio profile image
gregorio in reply to gregorio

The tremor is in my arm more than my fingers, my hand shakes but do not have the rolling fingers i read about, another thing improved over the past months is my arm is swinging, i did work on it but naturally happening now

koshca profile image
koshca in reply to gregorio

The same symptoms as mine.

Hi, very interesting. I would like to do something for my husband that has tremors at rest. Would you mind sharing the link of the Amazon purchase and also sharing a picture of the lamp that you are using. I I am mechanically challenged so any visual you can give me would be appreciated LOL. congratulations on finding some thing that works for you!!!

gregorio profile image
gregorio in reply to Terlin

hi Terin, there is a picture at the top of my post, I am not recommending this to anyone until I get some answers from the experts on here.. My question is whether this lamp can be used as a substitute for the hat, It has only been a short time and I will give it a few more weeks before I see if it really is working. Sometimes one wants something to work so badly it is easy to assume the best, the placebo effect.

park_bear profile image
park_bear in reply to gregorio

It is not going to be identical because the coronet uses two different sets of LEDs to generate two different frequencies of light, with particular timing. As to whether your treatment might approximate the coronet treatment in any way, we cannot answer without knowing the spectrum of the lamp, which requires a link to the product description.

gregorio profile image
gregorio in reply to park_bear

amazon.es/gp/product/B087RD...

gregorio profile image
gregorio in reply to gregorio

this does generate two different frequencies of light which are the same as the cap which is why i thought i would give it a try

park_bear profile image
park_bear in reply to gregorio

wellred.com.au/products

"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 wavelength are pulsed at 40Hz. At the end of the 24 minute session, the Duo Coronet automatically turns itself off."

amazon.es/gp/product/B087RD...

"l. 9 LED rojo profundo de 660 nm + 9 LED de 850 nm cerca de infrarrojos"

Light frequencies are similar but the Amazon product does not pulse and sequence the LEDs.

gregorio profile image
gregorio in reply to park_bear

thanks, precicly why I though it would work, I researched everything i could find. As you say it is pretty much the same without pulsing

See my comments below

Grumpy77 profile image
Grumpy77 in reply to park_bear

Hello park_bear, does the Duo Coronet from Australia help to reduce tremor as well? (I'm probably assuming you have an idea of general feedback from users in addition to you having one yourself)

park_bear profile image
park_bear in reply to Grumpy77

Here are some case reports. Apparently tremor was one of the symptoms that was improved:

wellred.com.au/research-1/c...

I am pretty sure my tremor has been improved significantly and progressively recently by something. Red light therapy is the number 1 candidate for "something"

Interesting that you put red light therapy at number 1... that means you rate it higher than FUS PTT for improving tremor... Obviously it's definitely more cost effective

kevowpd profile image
kevowpd in reply to Grumpy77

He hasnt had FUS (well, he hasnt mentioned it).

Grumpy77 profile image
Grumpy77 in reply to kevowpd

He put red light therapy at number 1 (against everything else) , there is no space plus it doesn't make any sense to mention all the others.. The others would include all other PD-tremor treatments of which FUS PTT is one

kevowpd profile image
kevowpd in reply to Grumpy77

"I am pretty sure my tremor has been improved significantly and progressively recently by something. Red light therapy is the number 1 candidate for "something""

you misunderstand my weak attempt at humour

red light therapy is my no1 suspect for the something that has improved my tremor. other suspects are the weather, cyclical variation, coincidence, shadowing my wifes diet & exercise program, the bars re-opening...

But, on balance I think it's the red lights

Got ya 🥵

Mr. Poo,

How much time approximately do you have into PBM/red light therapy to see the tremor reduction and would you describe it as significant tremor reduction?

Art

Art

You don't have this cursed affliction. If you did, you would realise the little bastard changes all the time regardless. Often, one thing gets better, and another worse.

Regardless, trying to assess treatments over the underlying pattern, coincidence, and other environmental factors is fraught with peril,

But, since you ask, and it's you, first you have to understand a context. Any tremor pisses me off, especially if I'm trying to play piano or touch type. And combined with bradykenesia , which it usually is, it really pisses me off. So it d pends a bit whether a fluctuating condition strikes when I am doing something which bothers me.

(I just touch typed that at full speed on an unfamiliar keyboard, on holiday in a mobile home in Soustons. I'm having a good day)

Also, it seemed to be getting worse, fast, just before I started the red light. And it has improved significantly from previous baseline. Hat and abdominal pad use has varied a bit, but currently I use the hat for 24 minutes in the morning (and the pad on my abdomen at the same time) and the hat maybe one evening in 2. I think I will probably drop the evening session

Does that help?

🙂

Amazing, amazing indeed... that you are still able to touch type. You must be doing a lot of things right. I'm roughly about 5 years in and I find it tough to even slow-type not to talk of touch typing... OR maybe the type of brain injury i incurred makes PD progression more brutal and swift with me than the average pwp

If I may ask how LONG have you had PD for, and do you attribute its origin to anything at all (I have a sneaky feeling that I've asked you this before but I can't remember much about your answer 🙂)

( Edit: was addressing WinnieThePoo who mentioned that he is still able to touch type)

gregorio profile image
gregorio in reply to Grumpy77

I dont know the answer, I had a bad fall about 7 yrs ago and banged my head but nothing disasterous, I owned a farm with olive trees and used weed killer and was not too careful, I ate well and drank well but where the PD came from I have no idea. I lost my smell and had dry eye about 4.5 yrs ago so knew something was up but was not certain till 3 yrs ago when the tremor appeared slowly. I went to a Neuro and had it confirmed with the usual machines and tests, was given the customery perscriptions and ushered out of his office. I have not been back again and took the meds for about 2 months while I researched like crazy. The rest is outlined in various post and answers on this thread here to save repeating myself. I feel every day is a new battle to be enjoyed and I will try to keep as well as possible until one day on the internet I read about the new pill thst stps the progression.. Typed with my 2 fingers slowly

😁

As my profile says I was diagnosed in 2018 just before my 57th birthday. I had a really bad eustacheon tube problem immediately before (July 2017 to Jan 2018). I had lots of antibiotics and inhaled drug cocktails through a nebuliser and blamed that. I also blamed the blood pressure drug isradipine which I started in November 2017 and stopped in April 2018 - to no effect.But I was reffered to the neurologist by the ent guy because my sense of smell remained impaired. It probably went years before. And as my research neurologist demonstrated if you look at the neurons not functioning on a dat scan at 6 monthly intervals and plot the trend line back to no neuronal loss, the disease started between 10 and 15 years earlier.

Definitely helps, Mr. Poo! I know it is impossible for me to truly know and understand PD and all that comes with it, but my intent was to pose the question to you, because I felt if I was wondering, then other PD members were likely wondering the same, so it was more for them than me, but your answer explained it so anyone on this forum reading it will quickly understand also! Thank You!

Art

No problem Art. I, like others appreciate your interest and efforts. My point was that this is a confusing, variable condition, and it's easy to draw wrong conclusions especially over the short term

Yes, I have seen people mention improvements only to later say that the improvements were short lived. A tough disease with a high level of frustration, especially with the variance in symptoms from one person to another.

Art

Terlin profile image
Terlin in reply to gregorio

I agree!!

laglag profile image
laglag in reply to Terlin

Have you read this book about red light therapy?amazon.com/Ultimate-Guide-L...

quiz0019 profile image
quiz0019 in reply to laglag

The link goes to a Page Error

The duo coronet pulses both light frequencies at 40hz sequentially. The Amazon doesn't pulse

It uses 40 individual leds for both frequencies. 80 in total. The Amazon uses 9 each. 18 in total

The coronet has an open aluminium frame designed to hold the leds close to the skull without causing excess heat and has a an overheat sensor. The Amazon product shines significantly less intense red light which will be some distance from the skull. One side of the skull will be in the shade at any time during treatment.

Does it matter?

" nobody knows"

Initial tentative research suggests that the therapy works. If it works it works best using both frequencies pulsed for 12 minutes each separately. It works best with high power leds close to the scalp and close to the abdomen. That's why it was designed the way it was. The recent Australian trial used equivalent product to the coronet. Not an amazon heat lamp.

But the research is hardly conclusive

My guess, for what little it's worth, is that any red light therapy device will have some effect, but the therapy will be most effective with optimised specialised equipment, which will progressively be refined over the next few years

thank you for that, it mirrors my thinking. I wanted to try the lamp and see if there were any benefits before building or buying a cap, it is a lot of money. I considered the pulse angle and think in my ignoence that it may not make a huge difference, but as you say, who knows? I do try to makeup for the shortfalls of the bulb and have adapted an office lamp which swivels and can pinpoint the lamp and get it close. For certain it has helped the pain in my arm and shoulder and I am sleeping better because of this, great result, this is the lamp and nothing else. With the head treatment I can only say I think it has brought back my sense of smell, it is nice as I spend a lot of time cooking and I can smell again. Time will tell, it has been a week only so I will give it more time.

Bianhua profile image
Bianhua in reply to gregorio

Gregorio, thank you for sharing about your experience. I wish you well, it is already working so keep doing what you are doing. Where are you based? I am finding out for someone based in USA CA.

gregorio profile image
gregorio in reply to Bianhua

south of Spain

Have you read this book about red light therapy?

amazon.com/Ultimate-Guide-L...

gregorio profile image
gregorio in reply to laglag

No, not read the book.

LAJ12345 profile image
LAJ12345 in reply to gregorio

The book does mention that the author has looked into many different ones, some of which don’t work as well and he recommends a list that he thinks are the best. You can get book on kindle.

I have the cap and have regained my sense of smell as well. I think it was well worth the purchase IMO

I think this is worth exploring gregorio. I made a light helmet as a Lockdown project and I'm giving it a go before investing further because it's only the NIR frequency not the lower. It does pulse at 40hz via the use of an Arduino. If you are techy you could have a go; I'd love to say I'd be tech support but that bit was the bit I had a LOT of zoom help on and although I get what it does, the programming is way beyond my skill set! I'm a linguist who had to learn how to solder to even make the thing...I noticed a reduction of shoulder pain and better sleep but I'm now looking into a comment on HU from last week about its effectiveness being blocked by hair - I have quite a lot.

I'm assuming from your post that you saw the link I posted last week and the subsequent discussion generated along with posts by WinnieThePoo and Zella23 ?

I don't think that the coronet efficacy is significantly blocked by hair.

Thanks - good to hear.

Bald as a coot, so no problem there

Bianhua profile image
Bianhua in reply to gregorio

he he😀

I have been communicating with Dr. Catherine Hamilton from WellRed re: my recent purchase of the duo coronet. Catherine said that it's ok if the LEDs touch hair, just not scalp. You might want to contact them directly to inquire. wellred.com.au/contact

The specialized RL equipment such as Coronet is more fine-tuned for ease of use combined with potentially advantageous pulsing, but yes in theory it should work similarly as long as you could figure out the proper joules dosage for effective session duration. redlightman.com/blog/comple...

redlightman.com/light-thera...

Besides, the original red light bucket hat simply used led red light strips near 670nm for PD. parkinson.fit/wearing-a-red...

Wishing you continued success. I would like to follow you. I'm 72 and not on any meds. I take supplements. My symptoms are tremors and right side weakness constipation and occasional freezing. I'm taking 1000mg b1 as part of my supplements. Good luck

gregorio profile image
gregorio in reply to Smittybear7

good to meet you, we are very similar. I never had the freezing or constipation, i had dry eye, drooling, loss of smell, arm not swinging but I think being on the keto diet prevented the constipation. I take B1 2 x 500mg a day, NAC, nahd, macuna, and try other things as I see them recommended. I cook a lot of Indian type food, heavy on the circumen and spices. I keep active which is important as we know.

Smittybear7 profile image
Smittybear7 in reply to gregorio

I am waiting on the results of an MRI for an issue with my hip and right leg. Supplements: b1 1000mg, NAC,lipolic acid, optiDHA,COQ10,omega 3 fish oil, d3,minerals, multivitamins, Dopa plus (pure encapsulation) ,vitamin c,Mega Sporebiotic, magnesium complex the dopa plus has lots of good ingredients. Check it out at pire encapsulation. I have an infrared sauna with light therapy.

I also use a chiropractor and muscle therapy for my right side weakness. In 2018 I had about 24,-30 IV glutathione treatments and acupuncture. Arm swing is also an issue

gregorio profile image
gregorio in reply to Smittybear7

Good luck with the tests..

Can you please share the link of amazon of the bulb being used so that we too Can tryRegards

gregorio profile image
gregorio in reply to youcanwin

Yes, you will see I shared it in an earlier post further up, the premis of my post was to see if wnyone had knowledge of using this and comparison to the hat, also safety. I can not recommend it. You should read all the replies , interesting. seems to be working for me.

Will this work?

m.aliexpress.com/item/32823...