Feedback from User Trial
Following on from the article and update below, we have subsequently received this anecdotal positive feedback from people with Parkinson's Disease who participated in the user evaluation.
30th July 2017
"I have completed the Propeaq light therapy trial and have had a very good result with sleep especially. I am able to fall asleep easily, sleep soundly throughout the night, and wake rested. I have begun to wake earlier in the morning and go to sleep earlier in the evening. I have been using the glasses for 30 minutes in the morning, as I wake, and 30 minutes in the evening, before 9 pm. When I do wake during the night, I am able to go back to sleep easily.
Secondly, I notice rigidity in neck especially has reduced with the use of the glasses. I am happy to report I have had a very good result in using the glasses. Thanks Gary Sharpe for your work in this area and to Propeaq's participation in this small trial.."
~ Margaret Yo
21st July 2017
"Hi Gary. I've been using the blue light glasses for quite a while and results are really astonishing! Instead of not being able to fall asleep for, what seemed like forever, I now fall asleep a lot quicker and stay asleep for much longer. I still wake up after a few hours, but fall right back asleep. I use the glasses every morning at around 7:30-8, and evenings about the same times."
UPDATE, 20th APRIL 2017
Subsequent to the report below, I am pleased to announce that the manufacturers, Propeaq, have organized a significant discount of these blue light glasses especially for users who have Parkinson's Disease to evaluate the therapeutic value for themselves (but with a safety net to these can be returned within 28 days and refunded if no benefit in improvement of motor symptoms, sleep or mood is found in that time). I am additionally suggesting that participants keep a good sleep, mood and symptom diary during the trial period to better assess the impact, if any, of the light glasses on quality of life. Very consistent use every day of the trial is also vital for acheiving good results.
Original Article, 26th February 2017
This article consists of a "show and tell" report on my self-experiments with applying Light Therapy to my Parkinson's Disease. For the technical background, please see my prelude article
and references therein.
I have been using strategic light therapy now for some time to assist in my recovery from Parkinson's Disease. These light based strategies have benefitted me greatly, as is also the case for very many participants now in more formal clinical and scientific trials. So I have become an avid proponent of the use of light in the treatment of PD!
In particular, it has helped me to markedly decrease my bradykinesia (muscle rigidity) which is normally part and parcel of PD, but much more importantly, has dramatically decreased the associated pain (dystonia). One important caveat is that it has not directly improved my akinesia: it doesn't give me back my ability to move my limbs without significant willpower - but it has made it easier to move them with effort, and, again, to do so without so much pain. It has also improved my sleep and mood very considerably.
I began with a standard light box, such as those which have been used in the academic studies. However, the disadvantages of a light box for me, and I suspect this will be the case for many other people with PD, is that when my symptoms are pronounced, I find it very uncomfortable to sit down and can even freeze in armchairs. I've found it especially challenging to sit still for the required hour long period of the therapy. Secondly, light boxes all tend to come in different strengths of light intensity too (LUX), so depending on the one purchased, we will be getting different "dosages", which makes protocols developed by one person not necessarily optimal for another.
Indeed, the effectiveness of these light boxes is already highly dependent on how close one sits to them. For example, the manufacturers instructions for the light box I have, when used for Seasonally Adjusted Disorder ("winter blues") recommend 15 minutes of therapy when sitting 20cm away, but 2 hours when the distance is increased to 40cm! Yet, to maximize the efficacy of strategic light therapy for PD applications, consistency on a day-to-day basis is required, which is why a recent study used a length of string exactly 84.6cm long in order to ensure that participants all sat a consistent distance from the light box! Timing is also important, which requires always being near the lightbox at the same time each day. Such consistencies were hard for me to achieve, and I suspected that I wasn't getting maximal benefit. A further disadvantage of light boxes is they tend to be full spectrum white light, which doesn't allow for varying color or frequency, but which we also know can be important in bright light therapies.
So when Toine Schoutens of Propeaq, who had read my earlier posts about light therapy for Parkinson's, contacted me via twitter to highlight the development of wearable technology, I immediately realized that their light therapy glasses represented a possible major benefit for me. So I requested from Toine a pair to trial to see if they had application for Parkinson's, which he very generously agreed to supply me.
The advantages of these wearable glasses are: highly consistent "dosing"; blue light: maximal benefit for reducing melatonin - the key goal in PD; highly portable; doesn't require sitting in any one position - indeed, one can simply go about one's business while taking the therapeutic dose.
I started by mixing the glasses and the lightbox in my therapy sessions, to assess if the glasses impacted negatively over the standard lightbox. I probably didn't do this scientifically or consistently enough to say one way or the other, but I do feel there was improvement with the glasses. The video below was recorded during this phase of testing.
I then started working with David Spry on maximizing the benefits of diet and supplements, and he helped me to experience further improvement. To seriously test the role of light therapy, I then stopped it completely to see if the nutritional therapies were now all that was needed. The results were rapid, clear and dramatic. I experiened a severe decline over a couple of weeks of stopping using the light. My rigidity became acute, I experienced levels of pain I had not felt for a while, and I found myself having to increase my medication burden in order to cope, especially having to take dosages through the night.
This experience confirmed for me absolutely the importance of the light therapy in the control of my symptoms. Based on this, I then started a new phase of testing. I began to use the blue light therapy glasses very consistently, without using the light box at all. I currently wear them for one hour between 9PM and 10PM, and for an hour between 10AM and 11AM each day. The results have been major and occured very rapidly. My condition has improved dramatically again. Of particular note, I've started sleeping through the entire night, waking perhaps once. Very importantly, I am now getting through the nights without taking dopamine replacement drugs at all (which further disrupt getting good deep sleep). I also generally feel much more upbeat and able to cope when the PD symptoms are pronounced.
So where do we go from here? In fact, the possibilities to fine tune light therapy for PD through such wearables is now immense. For example, the Propeaq glasses already come with an app which allows the timings of the therapy to be programmed in: Toine is helping Olympic athletes achieve peak performance at the scheduled times of their events! They also already come with interchangeable tinted colors, including red for increasing melatonin: currently, these are used when the wearables are applied to combatting jet lag, for example.
So we believe there is all to play for here. As I first step, we are seeking to confirm my own experiences are replicatable in other people with PD, through a small scale user evaluation. I am also pleased to hear from Toine that he is arranging meetings with important academics in the Netherlands to discuss options for more formal, larger scale clinic trials to assess blue light therapies, with the aim to help improve the quality of life of people with Parkinson's all over the world.
These are exciting times, and I do hope we are on the verge of a major breakthrough which can be rolled out rapidly, to finally start bringing an end to all the suffering, especially when light is incorporated with other non-medical interventions which are also now showing such promise. What happens when light and music therapies are combined, for example... ?