Who's right?: I was explaining to my wife... - Cure Parkinson's

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Who's right?

kaypeeoh profile image

I was explaining to my wife about Vielight, the theory that FIR LEDS stimulate the striatal cells to function better. She countered that if light therapy was so good why isn't michael j fox et al doing it? I hate to sound paranoid but it seems that groups like Fox's Foundation have an interest in maintaining the status quo rather than trying new theories. Most medical groups are all about money; Make a new drug and sell it but at the same time prevent other new drugs from competing for the money? Again I hate to be paranoid but I've seen that some researchers produce results that are completely bogus. It goes back the "Publish or Perish" theory. The idea that publishing a lie is better than producing something new.

27 Replies

I tend to agree. Someone published the m j fox execs salaries on here once. Eye wateringly high.

It would be nice to know exactly what Michael's protocols are.

Yes, slagging off the people that work at the largest private PD non-profit should advance our cause. Well done. They've literally funded light therapy (yes, a different type, but hardly the "status quo"), but googling was too hard, I guess

michaeljfox.org/grant/photo...

Perhaps a fitting response to your wife would be: how do you know MJF doesn't use a red light hat?

kaypeeoh profile image
kaypeeoh in reply to kevowpd

I saw him interviewed and he mentioned that he has to wait for "the pills" to take effect before he can sit for an interview. I have an exam scheduled with my neuro, Dr Bortan, on Jan 21st. I plan to ask about light theory. So far I've found that B1, B12 or B-complex doesn't work, cinnamon doesn't work and MCT oil doesn't work. Exercise seems to work, as does Rytary and memantine every five hours. I like the idea that mitochondrial malfunction may be the root problem. I like it enough to try Vielight if Dr Bortan doesn't shoot it down.

But a snarky comment about 'slagging off' doesn't help anyone.

kevowpd profile image
kevowpd in reply to kaypeeoh

If you think red light therapy will be a substitute for "the pills", prepare for disappointment*. As for "snarky", my comment was more respectful than your baseless conspiracy theory deserved, frankly.

*And the same goes for the other things you mentioned. They aren't substitutes for meds, they are adjunctive or complimentary.

I think your wife is correct, but she didn’t go far enough. If light therapy actually worked many more people (than mj Fox) would be using it.

WinnieThePoo profile image
WinnieThePoo in reply to Levod

My parents met in the research lab at Boroughs Welcome, (welcome foundation, Smith kline Beecham). My first pet, Peter rabbit was a refugee from the Dartford lab where they worked. My Dad moved to MSD (Merck for you guys in the USA) in 1966 (world cup year), launched Sinemet in the UK, and retired from MSD age 66. My sister has spent her entire career at Pfizer. I have personally participated in pharmaceutical research for PD (Spark)I grew up chatting about rodent research, quad blind randomised placebo controlled trials, and placebo effects .

I use my red light coronet twice a day when I can and at least once a day. I also use red lights on my abdomen (microbiome) at least 3 times a week (usually 7)

There are 2 things I think I notice an adverse effect from missing. Exercise and red lights. Both study groups are a population of 1. No placebo control,

As for Michael J Fox I doubt he spends his every waking moment reading this forum, too shy to participate. He may well be unaware of the therapy. His institute has finite resources and effectively infinite demand. Most of the research is fairly recent and in vitro or rodent. Such human PD clinical studies as there are were small, lightweight and partisan (but not necessarily biased) and tend to suggest there is more benefit to those early in the disease than long haulers like MJF

This is a snowflake disease with individuals developing differently and responding to treatment differently, and, nice guy though he is, I don't think the sole criteria for validation should be "does MJF use it?"

Whose ted light product do you use on your abdomen? My husband has a red light coronet helmet and I would like to get something he can use on his body . Thanks so much!

From the same people. It's called the therapad wellred.com.au/therapadabout

Thank you !

There is a religion in the mountains of China that believe that their gongs must be wrung and their whirly gigs made to turn other wise the world will stop turning and all life will end. Their supporters in the outside world say that the Chinese government conspires to stop this by its lack of support and the down turn in tourism and we will all be doomed. Send large amounts of money to me and I will pass it on to the gong ringers and twerly turners and save the world.

chartist profile image
chartist in reply to GymBag

Jim,The check is in the mail!

Art

Erniediaz1018 profile image
Erniediaz1018 in reply to GymBag

🤣

Right. If thiamine hcl so good. Why?

Has anyone used Vlight? Does it improve symptoms? If yes, please give feedback, thanks.

I have been using the Vielight for about 16 months. I use the top-of-the-line model. I am into my sixth year of PD. I still do not use any prescription meds.

I noticed an immediate impact on my PD symptoms right after starting to use the device. The positive effects were across-the-board and very noticeable.

I can’t say that the effects I experience would be experienced by others. Too many variables. But I continue to use it every day, and am quite sure it helps me.

rebtar profile image
rebtar in reply to Vt11

Which vielught? The one in the nose?

Vt11 profile image
Vt11 in reply to rebtar

Neuro Duo

There also seems to be some disagreement around the correct light wavelengths. There are some who believe that the 1070 red light hats are best, but they are not designed for PD (linked below). You can also find DYI instructions for red light hats online, but it's hard to know how long to wear them, which red lights to use, how close to position the lights to the head, how many lights, and more. I have been looking into this recently. In addition, people say that too much red light time won't give you any benefit, nor will too little time. It's all such a mystery to me. I wish I had a better understanding of it all, especially before investing in an expensive red light hat.

Having said this, there are people on this forum who swear by their red light hats and believe that they are worth every dime they paid for them. I had read fans of both VieLight and Coronet Duo on here, and below is yet another one:

bestredlighttherapy.com/how...

Scrolling through the RLTs benefits list in your link, I can now clearly understand why my facial hair has growing extremely fast of recent

healthunlocked.com/cure-par...

kaypeeoh profile image
kaypeeoh in reply to Grumpy77

That's the placebo effect; If you THINK your hair will grow better...it will!

If you think about it, it's probably not a placebo effect

Grumpy77 profile image
Grumpy77 in reply to kaypeeoh

No, definitely not placebo. If you my thread linked in the post above, i never had a pre-thought that RLT would speed up my facial hair growth. In fact it was my sister that was speculating that it could be my medication (she didn't even know the name). I instinctively ignored her but as time went on, the speed of growth went astronomical. It was at this stage that I thought... could it be madopar? Hence the thread. Laglag or someone else then suggested it could be RLT

alexask profile image
alexask in reply to Grumpy77

I hope that you put this new found talent to usei the Christmas period just passed (Ho ho ho)

Grumpy77, if you are a woman, this does not sound like a desirable side effect of RLT. Sorry to hear about this! I knew that redlight therapy could help with scalp hair regrowth in about 10% of the population, but I had no idea that it could accelerate facial growth too.

I dimly recall there was a TV infomercial about a red light hat that cured hair loss in women.

I'm a troll??? I guess trolls don't realize that they are. I've used The Web since 1983. Started on a Commodore 64K. If I respond to someone I hope I'm stimulating the conversation rather than insulting anyone. I could just "UNSUB" and leave but I don't want to and I won't.

So there.

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