This is a wonderfully written description of the difficulties that Parkinson’s disease can present. It can be debilitating, sneaky, and extremely hard to diagnose with certainty.
This story, from The Sydney Morning Herald/The Age describes the confusing symptoms of the early years, the procession of varying medical opinions and, too familiar to many, the sheer misery PD can inflict.
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? Continue reading “The light hat isn’t helping my PD…”
I’ve been reading an interesting 2016 review article called Cytokine networks in neuroinflammation.*
Click here for the abstract.
Some of the differences between neuroinflammation and neurodegeneration are beautifully explained. Both diagrams come from this article.
Cells in our body and brain produce cytokines, small proteins that are powerful and wilful little beasties. They provide a very effective means of cell communication, and can “orchestrate complex multicellular behaviour”.
Over 300 different cytokines have been identified, but some of them have shown that in one situation they will behave in one way, but in another situation the same cytokine will do the complete opposite.
Cytokines are part of the body and brain’s response to something going wrong. But cytokines themselves can go haywire (called cytokine network dysfunction or dysregulation) and set up and maintain cascades of activity that can ultimately cause harm to the tissue.
Continue reading “Neuroinflammation vs Neurodegeneration”
If you live close to Melbourne, you have a rare opportunity to hear two excellent lectures about the effects of red light on the head* for Parkinson’s and Alzheimer’s Disease.
Who are the speakers:
Prof John Mitrofanis, University of Sydney and Prof Liisa Laakso, Griffith University
What are they talking about:
Prof John is giving an update on case studies of people with Parkinson’s Disease using red light hats on a daily basis.
Prof Liisa is presenting recent research evidence on the effects of red light in Parkinson’s and Alzheimer’s disease.
Sunday 1st July, 2018
9.00 – 9.45 am – Prof Liisa
9.45 -10.30 am – Prof John
Workshop 1 & 2,
The Larwill Studio, Art Series Hotels, 48 Flemington Road, Parkville, Vic 3052. Map
These two lectures are free to the public, but you will need to book as numbers are limited.
Book your seat:
These two public presentations have been coordinated by the Australian Medical Laser Association, AMLA, and is part of a two day conference called Photobiomodulation Therapy.
*The official term for red light on the head is PBMt, shorthand for trans-cranial photobiomodulation.
We have had multiple separate reports about sleep improvements (usually from spouses) and there is an exciting consistency in these reports.
We are getting more reports about improvement in sleep for people with Parkinson’s Disease using red lights on a daily basis.
One Eliza-user has given permission for me to quote his wife’s description:
“I have noticed a vast improvement in his sleep. Prior to him starting the light therapy, he was having very restless sleep at night. He was suffering insomnia and he often lashed out in very jerky uncontrolled movements during sleep. He now sleeps very soundly and the sudden uncontrolled movements have stopped completely. As a result he has more energy during the day.
We are particularly thrilled about his improved sleep as this not only impacted on him but also on me. His medication has not changed at all.”
REM sleep disorder is a well-known part of the Parkinson’s Disease progression; it is very disruptive and distressing for the individual and partner. It seems that the red lights have an effect on REM sleep, and somehow sooth it.
We have had multiple separate reports about sleep improvements (usually from spouses) and there is an exciting consistency in these reports. A soothing sleep is good for all.
A few people have asked how long a light hat should be worn.
A previous post about the Goldilocks Effect is really important to read, as it describes the research on the odd effect of too much red light.
More red light is not better – it can make things worse. Neurones are finicky fellows and we must respect this.
So how long should you wear an Eliza light hat, or any kind of red/near infrared light on the head? As everyone’s light hat is different, it is impossible to give absolutely firm advice. But based on what I’ve observed over the time of making many and varied light hats, I’d suggest the following considerations.
I’ve had a number of people tell me that conversations with their GP or specialist about red and near infrared lights haven’t gone well. One chap took his newly-made Eliza to show his neurologist, who roared with laughter and said that it would be very handy at Christmas.
I remember my reaction when patients brought in newspaper clippings about the latest and greatest cure for something – I’d keep a smile on my face and inwardly groan.
If you are getting less than supportive noises from your doctors, don’t get cranky with them, because they are trying to protect you. There are lots of charlatans and snake oil merchants out there, and people with chronic diseases are easy targets. They are worried that you and your family are going to be taken in by costly rubbish. If you read about the beginnings of my learning about red lights, here, you’ll see that I was also very skeptical.
So what can you do?
Continue reading “How to help your doctor”