The light hat isn’t helping my PD…

One of the problems of writing a blog, I’m finding, is that people are keen to share good news, but they are not so keen to share not so good news, or even no news. I’m guessing that there are people out there who can relate to this.

Let’s say that you have Parkinson’s, you have made yourself a light hat, and you have been wearing it every day for 20-30 minutes. You have a lot of hope.

A month down the track and nothing seems to have changed. You are feeling a bit fed up with the red light caper, and sick of the jokes that others make about it.

Another month goes past and you are sure that you’ve had no response from the lights. Are the red lights a load of hooey?

The short answer is no, the red lights are not a load of hooey, but the long answer is that it is complicated.

There are five main reasons why you may feel that the red lights are not working for you.

1. Hardware

If you followed the Eliza instructions closely, using red LED strips, and you can see the lights shining when you put them on your head, then that’s a good start.

I’ve noticed from odd feedback that people are tending to adapt the instructions and use odd things as light sources or try different ways of fitting it to the head. Some work, some don’t.

Stick to the instructions. They are the result of quite a lot of experimentation and disasters.

2. Routine

I’ve found that it does have to be a daily task. Intermittent use doesn’t seem to cut the mustard. This makes biological sense given the knowledge we have thus far about the way that red light works on cells.

Daily light, preferably in the mornings is the best thing.

3. Your body’s immune system

We know that the light won’t reach from the light hat right into the Substantia Nigra, the spot deep in the brain where the dopamine producing cells are suffering.

The light from the red light hats can’t reach these subterranean cells. They are buried too deeply.

They are getting indirect access to the energy from the red lights, through the indirect or abscopal effect. This has been discussed in other blog posts, so if this is news to you, spend a bit of time looking at old posts and pages.

The indirect effect results from the activity of your immune system. Somehow the immune cells in your bloodstream pick up the pulse of energy from the red light then take it to parts of the body where cells are needing help. Prof John Mitrofanis calls the activity of the immune system as “the middleman.”

Some people have a great middleman, but others seem to have a less interested middleman. Why this is, we don’t know. There isn’t much you can do about it – it seems to be how you are made.

4. You are the last person to notice changes

It is weird, I know, but it is typical of neurodegenerative diseases. Somehow the ability to monitor changes to the body and mind dramatically reduces. I’ve had people tell me that the medication did nothing for their PD, even though others can see the obvious change after medication was started.

Family members living with you and seeing you every day are less sensitised to subtle changes in your behaviour. The people who see changes are those who see you every few months and who are brave enough to make a comment. Remember that unless you live in an unusual household, these visitors don’t see you in all your daily and nightly activities, so they can only judge the publicly available aspects of you.

5. The things that change with lights are not always the thing you want to change

Most people expect an instant reduction in tremor, and get cranky when this doesn’t happen. Maybe the tremor increases a little in the early weeks to months. What they aren’t considering is the complexity of Parkinson’s. It is not just a disease with one symptom, it is a sneaky disease with lots of different bits to it, and each person has different amounts of the different bits appearing and evolving at different times.

We are sure that the daily red light exposure improves mood, reduces anxiety, subtly improves sleep and subtly improves some brain function (remember that the light can have a direct effect on the top parts of the brain), but you may not notice these changes. Even if you did, you may be unimpressed.

It is most likely that daily red light use slows down the rate of deterioration. If your middleman is in good form, you might get improvements, but you might not notice improvements. This doesn’t mean that the red lights aren’t helping you.

A number of the people with PD who have been using red light for over a year now are convinced that their PD is a less aggressive foe, and the rate of their disease progression has slowed down. This is worth having as it gives you a better life for longer.

To sum up

  1. Red lights used daily will help PD.
  2. Stick to the instructions to make your light hat.
  3. The degree of help depends on the individual’s own body and “middleman”.
  4. The help may not be obvious, but that is no reason to stop using the lights.
  5. Keep using the lights.

Author: RedlightsontheBrain

Redlightsonthebrain is written by Catherine, 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.