Over the last two years we have made, for people with Parkinson’s, a number of Eliza light hats, both one and two wavelength. I’ve been musing on what they and we have been noticing. Bear in mind that each person is different, experiencing symptoms in different ways.
We have seen improvements in everyone who uses the lights daily.
The person least likely to notice any improvements is the person with Parkinson’s
Here are some of the responses:
- Improved walking – most find that their gait is less shuffling, and it is easier to lift and swing the legs. Most are able to walk more quickly.
- Improved hand use – most are able to use their hands more effectively, and be able to resume doing tasks previously too difficult. For some, writing improves dramatically.
- Improved speech – the huskiness in the voice reduces, and voice quality is improved. Swallowing is generally better, too.
- Less tired – the physical exhaustion seems to lessen and there is more stamina.
- More motivated – many had started lights with their Get Up And Go having got up and left. Most people found that they regained motivation, ability to plan, and interest in life.
- More facial expressions – this can be one of the more noticeable changes for those around. It is lovely to see faces resume animation and a sparkle in the eye return.
- Improved ability to socialise and converse. Often there had been subtle difficulty in hearing and understanding what others were saying, and being slow to respond. The lights do seem to help with auditory processing and speed it up again, making it easier for conversations to flow.
- Less anxiety – somehow, there is an increase in optimism and reduction in anxiety and worrying.
The very consistent finding is that the person least likely to notice any of these changes is the person with Parkinson’s wearing the Eliza. Others notice these changes and point them out, sometimes to the surprise of the Eliza-wearer.
So if you are trying out red/near infrared lights for your Parkinson’s, then ask others for their honest opinions, especially those who see you every few weeks or months. They can usually see the differences that you miss, and that might be missed by those living with you every day.
This finding was reinforced a little while ago when one of the Eliza-wearers reduced the lights without telling us. We became concerned as we could see that improvements were being lost. When we asked, the Eliza-wearer said that reducing the lights had made no difference at all. He could discern no difference, but the rest of us certainly could. It took quite a bit of convincing for him to accept what we were saying. The lights were resumed as before and the improvements have started to return.
So if you have Parkinson’s and you are using the lights, it seems that you are the worst judge of how you are doing.
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