Record keeping

I had a great query this morning about what baseline information to collect before you start using an Eliza. I have an excel spreadsheet which is basic, but a useful start, and it allows you to add comments over time. I will post it separately.

There are three very important things you can do to track any changes.

Before you start using the lights, do the following.

1. Handwriting

Find a notepad with lined pages, and keep this only for your handwriting samples.Write a long sentence or two in your normal handwriting. Write something that you are happy to write at regular intervals.

2. Video clip of you walking

A short video clip, showing you walking towards the camera, away from the camera and from side to side.

3. Video clip of you talking

Again, only a short clip is needed.

Can you schedule yourself to repeat these three things every month?

I know it is a pain and it is embarrassing to have videos of yourself being done, but the monthly video clips will help show subtle changes in:

  • Gait
  • Posture
  • Walking fluency
  • Facial animation
  • Articulation of words
  • Voice quality

The monthly writing samples will show if there is any change in your hand use, especially if you have the symptoms in your writing hand. Prof John has a neat piece of software that can analyse handwriting changes over time.

These kinds of changes are really hard to pick on a day to day basis and they often only become evident if you keep these kinds of records.

If you are willing to share your records with Prof John, please let me know. At this stage all information is important as we are still at the beginning of understanding. Hearing of your experience with lights and would be hugely valuable.

Weekend Australian article

An article in the Weekend Australian newspaper about red light and Parkinson’s Disease covers some of the people involved in the experiences described in this blog.

The article mentioned a home-made light hat. The instructions for  making a one-wavelength version of the hat (aka Eliza) have been posted.

Instructions for a two-wavelength version of the light hat are in progress.

PS. If the link to the article takes you to a paywall, try searching for it using Google, using the search term ‘Suvi Weekend Australian’. I was able to access the full article this way.

The Eliza Instructions finally…..

Here are the instructions for making a one wavelength Eliza.

Download instructions for a 1-wavelength Eliza

Download the things you will need for your DIY Eliza.

Making an Eliza isn’t difficult, but it is a fiddly process and takes quite a few hours.

Be brave and give it a go.

Let me know if there are things that need to be clarified.

I’d love to see photos of your Eliza.

Red lights and disease-seeking missiles

Journal Article: Targeting the body to protect the brain: introducing neuroprotection with remotely-applied near infrared light.  Link

This research article was published on 10 March 2015 in the journal, Neural Regeneration Research, by Daniel Johnstone, John Mitrofanis and Jonathan Stone, all from the University of Sydney.

Here’s a summary.

While the causes of many diseases are not known, the diseased cells all do have systems to repair themselves. Research into the use of red and near infrared light on damaged cells has shown that the light can stimulate these cells into starting the repair processes.

The light exposure does not have to be heavy duty. LEDs work just as well as lasers.
Continue reading “Red lights and disease-seeking missiles”

A not-for-profit association

We have registered a not-for-profit association. We have some more administrative things to do to get it all ready for action, but it is underway.

Our aim is for this association to:

  • develop and manufacture effective and low-cost light devices
  • make the devices available for purchase through the association
  • put all profits and donations into medical research –  randomised case studies are the gold standard, but they are expensive things to run.

We had hoped that all the light devices (including Elizas) could be gifted through the association, but if this is ever possible, it is a long way into the future.

We are currently working on different models of light hats, and when we think we have identified the best we can do, we will seek funding for the development of a light hat that looks, um, civilised. Eliza bucket hats have been a great way to prototype our ideas and adapt findings from ongoing research, but they are not aesthetically pleasing…