DIY – practicality beats perfection

I’ve had lots of emails from people making a DIY light hat from the blog instructions. The tricky part is finding the best red LED strip.

670nm is hard to come by, as is 660nm.

The tendency is to stop work on the light hat, on the basis that it can only be made with the best possible LED strip.

Wrong approach!

The best thing is to get any old red LED strip and make a light hat as soon as you can and get it on the suffering head every morning – as soon as you can.

Then, and only then, start hunting for the elusive 670nm LED strip. And when you find it, make another light hat with the new LEDs. And give away your first one – there is always someone who can put it to good use.

It is far more effective to have red lights on brain than it is to have no red lights. Every day counts.

And remember – the Cossack is a far better design than the bucket Eliza.

Expectations

I’ve been answering a lot of emails from people who have recently read about the red/near infrared lights and Parkinson’s disease.

The stories have given hope, and justifiably so, as the case reports have shown that red and near infrared light can help PD symptoms.

But expectations must match the reality of red and near increased lights.

Red and near infrared light will NOT cure Parkinson’s disease.

Red lights will not magically return people to their previously healthy selves.

Red lights will not take the place of PD medication.

Red lights will not create immediate improvements.

In different people, depending on the degree of the disease and their general health, the lights will have variable effects. These effects occur slowly and subtly over time.

Any improvements, however small are worth having, but they do not occur speedily nor dramatically.

I would ask that you temper your expectations.

Maintain hope, but do not expect miracles for you will be disappointed.

Comfort is paramount – the Not List

I’ve been contemplating the DIY red light hats I’ve seen. Some are brilliant, made with artistry and an aesthetic balance that is breathtaking. Some are, um, not so magnificent to behold. Does appearance matter? Not really.

It is not the beauty, it is the function.

If the DIY light hat is heavy, hot, oppressive or worse, covers the face, it is not going to be comfortable to wear, no matter how elegant it looks.

If it is a physical burden to wear the light hat, then it is unreasonable to expect anyone to take on such a daily commitment of misery.

Comfort is the key to any DIY light device.

Here is the List of Nots:

  • Not heavy
  • Not hot
  • Not oppressive
  • Not covering the face
  • Not difficult to balance on the head
  • Not physically awkward or painful to wear for 20-odd minutes at a time

The User of the device must always have the final say.

If the User finds the light hat distressing or uncomfortable wear, the User can and should refuse to use it.

The User’s opinion is final.

What wavelength is best for my condition?

If you have looked at the availability of rolls of red and near infrared LED lights, you will see that there is a bewildering array, between orangey-red (630nm) to out of the visible spectrum so that you can’t see it at all (940nm).

So what, you ask. Surely it doesn’t matter? Surely red light, near infrared light – it’s all the same? One wavelength is as good as another?

Wavelength matters – please be cautious!

Continue reading “What wavelength is best for my condition?”

Introducing the Coronet

The ABC story showed photos of Ron Brown and me.

On the right hand side of the picture, you can see an Eliza bucket light hat, like the one Max Burr now uses.

In the middle you can see what look like coronets. Which is what we call the light device we have designed. It doesn’t have jewels on the outside, but it has fabulous pulsing individual LED lights, all controlled by sophisticated firmware.

Ron is an electronics engineer and he the genius behind this astonishing design.

  1. It is very lightweight – around 125g.
  2. It can be quickly set up to fit different head shapes, large and small.
  3. Each of the eight legs has two rows of individual LED lights, one is 670nm and the other 810nm.
  4. The Coronet has special firmware that allows us to modify key parameters:
    power pulse rate – timing – location of the light on the head
  5. It also comes with an app for android phones only (sorry, iOS users), which allows the user to pause and resume a session  –  see how long here is to go before the session finishes  –  see the technical details of what the device is doing while you wear it   –  monitor your own progress using a tremor-test and reaction test.

For Parkinson’s disease, we ensure the settings we think will work the best, based on what the research is currently indicating, for example:

  • pulsed light is far more effective than continuous red light.
  • 670nm followed immediately by 810nm works better than either alone or both together

We might be biased, but we believe the Coronet to be the most sophisticated light device available now for people with PD to try.

We have nearly sold out our first batch but will be ordering more.

If you would like more information please contact us here.

Who should get the credit?

The original research grant application would have seemed odd – to shine red lights on mice. But look what that research has given us.

With all the media attention on red and near infrared lights, let’s celebrate the people who meticulously documented the effects of red and near infrared light.

Professor John Mitrofanis, University of Sydney.

Prof John has been the driver – he recognised that the problem in Parkinson’s Disease was cell battery malfunction – the mitochondria.

The first paper describing the effect of red light on Parkinsonism mice was published in 2010, nine years ago. The animal evidence was convincing way back then. Continue reading “Who should get the credit?”