The first light hat was made in January 2016, and the framework was provided by a lampshade that cost $3 at an Op-shop (picture above). I think it was a bit expensive.
The lace was removed, and a 670nm LED strip put into it.
It was not going to win any millinery awards. But when the lights were turned on, it did was very effective at bathing the head in red light.
The lights aimed to cover the forehead, ears and the back of the head, and everything else in between. It is not a problem if the light shines in the eyes, but if you want to watch TV or read while wearing the light hat, it is better to have the eyes shielded.
My mate used this light hat daily, starting in January 2016. He kept a detailed record, and his family and friends kept a close eye on him too. The first improvements were evident within a month and continued. Within three months it was clear that he was able to walk better and use his right hand again (previously it had been difficult to control). He reduced his medication a little without a problem.
Probably those around him noticed more changes than he himself did, things like the return of animation to his face, the increased speed of repartee (he is a very funny and very witty man) and the return of the sparkle in his eyes.
My mate made contact with Professor John Mitrofanis (Prof John) at the University of Sydney and Prof John has has been phenomenally supportive to us all.
A few months after the first light hat, we made another one, this time using two wavelengths connected together. Again, there seemed to be a further improvement.
My mate’s specialist was surprised at the improvements, so after a long chat with the specialist, some more of his patients with Parkinson’s and related conditions were asked if they wanted to try out a light hat. They did. By the end of July 2016, there were four people with 2-wavelength light hats made from Op-shop lampshades.
In October 2016, Prof John emailed to say that his team had just finished an experiment comparing the effect of using one wavelength only, using two wavelengths together, and using one wavelength immediately followed by the other wavelength. The last option was a winner and was significantly more effective.
So we devised a switch box and we trotted around to the people with light hats and, over a cup of tea and chat, we changed the wiring so that they could use the two wavelengths in sequence. Again, it made a difference.
It finally became clear that the easiest way to make these hats was to use a bucket. So the Eliza series of light hats started in December 2016. They are called Eliza in honour of the old song, “There’s a hole in my bucket, dear Liza...”.
Also in December 2016 Prof John sourced and gave us some extremely expensive lights to try out in the Elizas. These lights were 810nm – the other wavelength Prof John used in his research.
So from December onwards we replaced all the lampshade light hats with Elizas using a cut down bucket, and put in the new 810nm as the second wavelength.
In this whole saga, we have been gifting the light hats to people, as we are not making this a commercial enterprise. The only “cost” was
- They agree to keep a record of how they were doing, including sending me examples of their writing every few weeks, and ideally videoclips of themselves walking and talking, so I could see what, if any change there had been.
- They agree that this information be made available to Prof John for his research
Everyone said “Yes, yes”, but not all have been totally diligent in their reporting – human nature, I guess. But I keep in reasonably close contact with everyone. All those with Parkinson’s have improved, and some remarkably so.
At the time of writing this page, we’ve made and given away ten 2-wavelength light hats.
If we can make them, so can anyone, so we are writing up instructions for the one-wavelength Eliza and the two-wavelength Eliza. We will publish the instructions on this blog.
An early version of the instructions for a one-wavelength Eliza has already been sent to two people in the USA. And a friend in France has made one for his mate with Parkinson’s.
We have a vision of people all over the world wearing red/near infrared light buckets on their heads…