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.

Author: RedlightsontheBrain

Redlightsonthebrain is written by Catherine Hamilton, a retired doctor on behalf of Light Ahead Inc, a Tasmanian-based not-for-profit organisation. Light Ahead Inc aims to help people to learn about neurogenerative diseases and the practical, safe and scientifically-based things that may be able to help. Part of this is to provide low-cost access to red light devices, hence the DIY instructions on this blog. All sales of the Coronet red light device support the work of Light Ahead Inc.

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