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.
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.
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.
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:
- 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.
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