Welcome to a new Eliza

The very first Eliza made from the blog instructions has been created in Cairns. She is a stunner, and is far more beautiful than any I have made. I am so chuffed.

I asked permission to post one of the photos of the new Eliza and here she is, showing the perfection of her innards.

IMG_7658

Eliza’s outer is extremely fetching, too. The range of buckets available in Cairns is clearly superior to that on offer in Tasmania.

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!

 

 

Buying the LED strip

I’ve just had a query about sourcing 670nm LED strip. I have found it hard to get 670nm of late, so in recent Eliza-making, I’ve resorted to any old red LED strip.

This is how to buy the best “any old red LED strip”:

  1. You can’t buy it at a regular shop. You can only get it online.
  2. main thing is to look for the one with the darkest red colour. They are available on eBay and are not at all expensive.
  3. Make sure that it is 12v (12 volts). Most LED strips are 12v, but I’ve recently seen a few that aren’t.
  4. While 670nm is currently regarded as the bees knees, other wavelengths are also effective, including down to 630nm which is is getting towards an orange colour.

Search term: red led strip 5m 12v

 

Don’t get hung up on finding exactly 670nm LED strip. Just find the darkest red LED strip you can get, and use that.

 

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.