For over three years now, I’ve been observing the effect of daily use of red/near infrared light hat devices on people with Parkinson’s disease.
I continue to be astonished at the way red/near infrared lights can improve the non-motor or non-movement symptoms – especially apathy. I think apathy is probably one of the most cruel of the many Parkinson’s symptoms.
Today I caught up with a lovely man who had started wearing an Eliza bucket light hat nearly a month ago. His Eliza has 670nm and 810nm and he uses each wavelength for 10-15 minutes, one straight after another.
Eliza isn’t pulsed. She just puts out continuous light.
He reported feeling a lot better in himself. He said he had more energy and more interest in doing things. He had been out in the garden much more than previously and was enjoying life a lot more.
Friends had been commenting on how well he was looking. As did his general practitioner who apparently doesn’t yet know that he is using an Eliza light hat on an daily basis!
Another significant thing is that he can now hold a cup of coffee without spilling it. He is convinced that his tremor has reduced.
For all those DIY light hatters out there, this story shows that continuous light works. Don’t fret about pulsing, just get that red glow on your head every day.
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.
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.
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 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.