The purposes of this article, which I will endeavour to keep updated, is to act as a central resource of information on light therapy and its applications to Parkinson's Disease.
Light therapy, delivered in a variety of ways, has been found to be of significant benefit to many people with PD, and there is an increasing amount of scientific studies emerging which back this. As a starting point, I highly recommend taking ten minutes to watch this fascinating seminar by Prof. Gerald Pollock of University of Washington, which may begin to explain some of the mechanisms of how light helps people with PD and other chronic diseases.
Another highly relevant TED talk well worth a watch is
I also highly recommend the chapter "Rewiring a Brain with Light" in Dr Norman Doidge's book
However, where we personally got started and first discovered the profound potentials in light therapy for Parkinson's Disease specifically, was via the work of Dr Greg Willis and his Bronowski Institute. Here are some of Dr Willis's papers which we found, studied, and then implemented early on (see the "In Depth" section below for further details).
Polychromatic Light Exposure as a Therapeutic in the Treatment and Management of Parkinson's Disease: A Controlled Exploratory Trial
The effect of light exposure on insomnia and nocturnal movement in Parkinson's disease: an open label, retrospective, longitudinal study
PRIMARY AND SECONDARY FEATURES OF PARKINSON’S DISEASE IMPROVE WITH STRATEGIC EXPOSURE TO BRIGHT LIGHT: A CASE SERIES STUDY.
Parkinson's Disease as a Neuroendocrine Disorder of Circadian Function: Dopamine-Melatonin Imbalance and the Visual System in the Genesis and Progression of the Degenerative Process
A historical justification for and retrospective analysis of the systematic application of light therapy in Parkinson's disease.
Our research then led us to discover that many, many workers have found similar positive results, and continue to do so. Even the benefits of strategic light therapy "simply" for improving sleep - which is typically chronically disrupted in people with PD - should not be understated. This because it is during periods of good sleep when the brain clears itself of waste products and the body repairs itself. Therefore for people who are already neuro-compromised, broken sleep and the resulting build of toxins in the brain is a fast track to a vicious circle of further degeneration.
Here, I am trying to keep an up-to-date list of articles on the science of all this:
Turning On Lights to Stop Neurodegeneration: The Potential of Near Infrared Light Therapy in Alzheimer's and Parkinson's Disease.
Timed Light Therapy for Sleep and Daytime Sleepiness Associated With Parkinson Disease: A Randomized Clinical Trial.
Circadian Rhythms and Chronotherapeutics— Underappreciated Approach to Improving Sleep and Wakefulness in Parkinson Disease.
A trial of wearable light therapy (blue light glasses) for applications to Parkinson's Disease is underway at Radboud University Medical Center Nijmegen, following on from my initial self-experiments (see below) and subsequent user trial with the manufacturers, Propeaq. Contact: Dr. Katarzyna Smilowska.
Jolie has provided this summary of the findings so far:
Here is a summary of the feedback we've received from People with Parkinson's who have tried Dopalights red light therapy wristband or headband. People with Parkinson's appear to be very sensitive to light therapy, which can be a good thing or a bad thing.
People who do not have Parkinson's can often wear Dopalights all day long with only positive effects, and the effects tend to be less noticeable for people who are very healthy (without pain, stiffness, inflammation, fatigue or toxicity). Whereas People with Parkinson's tend to feel some improvement in these areas with only a few minutes of wearing Dopalights per day, based on reports received, yet can feel "overdosed" negative effects very easily also.
Based on feedback, both the wristband and the headband appear to yield equivalent results. Most people prefer the wristband for comfort, but the headband may be preferred by some due to potentially beneficial exposure of the hearing mechanism and the vagus nerve to the light, and assistance with lymphatic drainage from the head and neck.
These are reports only from People with Parkinson's who have tried Dopalights. They are not clinical studies or guarantees, and we are not making any claims beyond these initial anecdotal results:
"I'm going to order some extras to lend to people to try out... I'm hoping that the bands will help my friends as much as it has helped me."
"After wearing I notice relaxation in my muscles. Then a few hours later I feel lithe - no molasses slow movement. Had two amazing days last week. Experienced joy and arousal. Tremor is reduced consistently. Am also going to the bathroom which is highly unusual!"
"I know what she means about feeling lithe after using the wristband. I hadn't realized how rigid I was until I started using the wristband and felt what it's like to move more freely. "
"I backed down to 2.5 - 3 min as the 5 was pushing me into the jitters. At 2.5 min I am finding ease content feeling at lower dosage. There was some discomfort like drinking too much coffee with 5 after a while."
"I started with 2 min. I am up to 7 min. with no adverse affects and I feel better with more stability and life force in my body."
"Two things I have noticed. I am sure that my right ankle stiffness (rigidity) has lessened. I am also feeling more focused. My energy levels throughout the day feel more stabilized and consistent instead of feeling that low energy in the afternoon which I was getting."
"I've been using it since 5/21 and I'm finding that the 2 to 5 minute duration is improving my rigidity, energy level and sleep."
"Both the energy boost and the side-effects are delayed for me... the most obvious thing after taking it off from a 5 minute session is a reduction in dyskinesia, then a cool feeling min my muscles, followed by alertness, energy and mood improvement. If I've overdone it slightly, the the side-effects come in the evening... If I've really overdone it then I feel bad quickly and for the rest of the day."
"My husband is using the dopalights for 2 weeks and he noticed that he can reduce his medicine dose and this results in less side effects from the medication. We hope that this results will further increase."
"No improvement in tremor but I feel that wearing the wristband clears my head, I feel focused and positive these days. I also feel it is helping to keep my gait smooth and not clunky..."
“I could wear the Dopalight all day with nothing by positive input. I'm sure it is helping my stiff shoulder..."
"My red headband has immediate affects. I can't wear it for more than about 3 minutes... an hour later my weight lifting is much easier."
Here are a couple more interesting and relevant videos:
This next video record shows the physically manifest, immediate impact on my drug-induced Dyskinesia (large scale, uncontrolled movement due to excessive l-dopa in my system). You can see how quickly looking at the very bright stopped this flailing motion. However, in this case, I found the combination of light intensity and proximity I was using was probably too powerful - it sent me in to a kind of "fugue" state. The lightbox I have is ten times more powerful than the ones Dr Willis recommended and reported using in his studies. However, it does show there are indeed definitely remarkable outcomes of stimulating the retina in People with Parkinson's.
In Depth: Dr Greg Willis
"In the early years of dopamine theory it was generally accepted that the more severe the cell loss, the more severe the dopamine deficiency and the more severe the Parkinson’s disease. However, this position has been very gradually eroded by the ongoing demonstration that this relationship is a poor one. In fact, recent work has demonstrated that Parkinson’s disease can develop with only 30% loss of dopamine (Annals of Neurology, 67(6) 715-725, 2010) suggesting that it is not only the level of dopamine that is important. This has important implications for treating the disease and is consistent with our approach using coordinated drug and light treatment."
Willis' understanding of the mechanisms of Parkinson's Disease is a little different from the standard, accepted picture. He argues that it is not just about the lack of production of dopamine but that the balance between dopamine and melatonin, the substance responsible for making us sleepy, is whats broken. It is this imbalance, he argues, which can cause many of the symptoms of PD. so it's not just that there isn't enough dopamine in the system, but there is actually too much melatonin, relatively speaking.
Willis' idea for a solution based on his working hypothesis is simple - as well as using drugs to replace the dopamine, he uses bright lights to reduce the melatonin. His treatment plans use strategic applications of lights, of the right frequency at the right time of day for the right duration, to attack melatonin and deplete it, restoring the balance with dopamine. His published results speak for themselves and he has data now including from people with Parkinson's he has been treating this way for years. According to what we took from his papers for ourselves... it works! Central to Willis' arguments is the role of the stimulation of the retina.
In his latest paper with co-workers, Dr Willis provides a good description of the protocol his clinic employs:
“Light was administered by utilizing a light source containing fluorescent tubes (Apollo BL-6, without ultra-violet emission). The light source was angled from the 11:00 or 1:00 position relative to the sagittal plane of the head. Since melatonin is secreted primarily at night exposure occurred for 1 hour between the hours of 20:00 and 22:00 and in most cases this was just prior to retiring and was tied to bedtime. With PD patients having been described as “phase advanced” the time of exposure to light occurred just before the peak in melatonin secretion hypothesized to occur at 22:00–23:00 h. As a general rule of thumb, light was administered at a dose of about 3,000 lux achieved by positioning the device at a distance of about 0.8 to 1 M from the bridge of the nose to the diffuser.
The same article also covers issues with why bright light therapy might not initially work for every person with PD:
"[From] our experience with the application of bright light therapy, we have identified numerous technical problems in the therapeutic application of light that frequently interferes with efficacy and which have to be overcome before the patient can experience optimal therapeutic benefit. Such technical problems include positioning of the light source, compliance, pre-existing ocular disease, light sensitivity, consistency in time of administration, polypharmacy, DA replacement overdosing, sleep hygiene and light induced narcolepsy, to name only a few. Such problems are typically resolved in routine neurological practice over the first few visits to the clinic."
The reference to light induced narcolepsy is interesting, and may explain the fugue state I encountered in the video diary record above.
My Personal Case History
We began by following the procedure that Dr Willis explained in his 2007 paper, using the light for one hour before bed, in order to attack melatonin at its peak, apart from using a more powerful light than in his study and so I reduced the lamps proximity accordingly. Dr Willis reports seeing major results in timescales of weeks in virtually all the people involved in his tests. Indeed, after sitting in front of the light for an hour each night, I too found my sleep had improved and my rigidity and pain decreased. However, if I wasn't compliant and missed a couple of doses at night, my symptoms would return.
Later, we discovered wearable light technology, which makes the application of the light therapy much more convenient and practical. Given the aim of Dr Willis' strategy to reduce the melatonin-dopamine imbalance, which was indeed working for me, it seemed appropriate to choose the blue light glasses supplied by Propeaq. I have continued to use the strategy of one hour exposure before bed, but swapped the bright light box for the light glasses. I do feel this increased the benefits, and that for me, these benefits have been cumulative in the long term. See my full report on trialling the wearables for further information.
AMELIORATING IMPACT ON SYMPTOMS OF THE LOWER LIGHT LEVELS OF WINTER
I've had a foreboding about the changing of the clocks, shortening of the days, lower light levels generally, more overcast days, as winter arrives. Last winter was tough for me, with much than symptoms than the summer - more "off" time, less access to movement, more pain and rigidity. This was particularly so in the evenings after the sun went down, and more brain fog in the daytime if the sky was overcast. Artificial "yellowish" lights didn't seem to help.
Bright light lamps for Seasonal Affective Disorder, and wearable technology like my blue light glasses and my DopaLights definetly help this winter effect to not be as bad it could be, but there is a limit to how much I can use these without incurring other symptom penalties. Furthermore, they are hard to use properly when I am really off, e.g. sitting near enough to the SAD lamp long enough, or manipulating the wearables to actually get them on or off.
As expected, as this year turned, and especially after the clocks went back an hour at the end of the October, I started to get more and more symptomatic again. In looking for potential solutions to this, I stumbled on this very bright "natural white light" LED room uplighter on amazon. So I bought it to try, because it is essentially a SAD lamp on a stick!
I am pleased to say this simple solution has indeed taken the worse edge of the winter induced increase in symptoms. At first I just kept on it all day until bed time, and for the first couple of days, I felt marvellous. Very clear head, more doses of medications working, energized. However, these seems to have been cumulatively too much, and I started getting symptom penalties again - interestingly these are symptoms I've come to associate with Candida die off - and more Dyskinesia from the Pd drugs. So I am still experimenting with optimal timing - switching the light on and off as my medicine switches off and on seems the best option so far. So when my symptoms come back, the light goes on!
This bright light based solution has been working very well for me, and indeed this winter I am faring better even than I was in the summer!