Record keeping #2

Some of you are planning to use a light hat, and want to keep good records.

The Eliza Diary is an excel spreadsheet and you can modify it to suit your purposes, but the main thing is to keep writing stuff in it. Even the smallest thing is worth mentioning, because you never know how useful that is.

Download the Eliza Diary  


Before you start

1. Eliza Diary 

Complete the baseline information. Take time to put in all the details, including comments from family and friends. Their observations are vital and they are most likely to see any changes first.

2. 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.

3. Video clip of you walking

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

4. Video clip of you talking

Again, only a short clip is needed.


Regular reporting

1. Eliza Diary – every few days

Try to give updates every few days, and any time you or others notice any kind of change, please note it down straight away. All information is needed.

2. Handwriting sample and video clips – every month

 

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.

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

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.

Your documentation of your own experience with lights is hugely valuable. You are part of citizen science at work.

There’s a hole in my bucket, dear Liza…

I’ve just updated the page on the evolution of the Eliza light hats. Now that it is public knowledge that Max was asked to be the first guinea pig, I can be a little more open with information and photos.

Over the first 12 months of Max’s use of light hats, I made him five different versions. I’m not sure he has ever had so much headwear!

 

 

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.

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.

Instructions for the one wavelength Eliza

I’ll be posting the instructions for the one wavelength Eliza later today. It has taken me a lot more time than expected to put in all the details.

You will need a workplace with good light and electricity. You will also need patience and a sense of humour.

In preparation, here is the list of things you will need.

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”

One wavelength Eliza photo

This is an early model of a one-wavelength Eliza. You can see that it refuses to lose its inner bucketness.

The elastic strap helps hold the Eliza on the head, with the back tilted back onto the base of the skull and the front just above eyebrow levels. It doesn’t matter if the red light gets into the eyes. I find it more comfortable to be able read or watch television while wearing an Eliza.

Despite its less than-magnificent-appearance, it gives a good spread of light around the head, and the foil insert reflects the lights a little. It all helps.

The instructions have been posted on the blog. Check out the DIY page on the main menu.